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empresse's Journal
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a productive absence 10-12-2004 - 09:59 AM
Hallo sisters! It's been a long time since I last wrote, and a lot of good things have been happening. I survived the medication transition. Although I don't like the idea of taking methadone, and it gives me a strange chemical taste/smell, it is proving effective at a smaller dosage than prescribed and the cost savings is hundreds of dollars. It was a little difficult; I'm still having sweating episodes, but that is just a minor discomfort compared to everything I've been through.

The most dramatic improvement is in the pain and loss of sensations -- and for that, I have to thank a local doctor who apparently has a well-deserved reputation as a gifted healer! I never thought I'd be the one saying something like this. She has been using a combination of acupuncture, acupressure, chiropractic techniques, and massage. Since my first session with her last week, I have been steadily regaining feeling in my toes on the right side! And an added bonus -- have not swelled up at all since that day!

The feeling in my right leg is not at all unpleasant. It is like the feeling of when your leg has been "asleep," with that "pins-and-needles" sensation when it is almost "awake" again. The pain in the hip first moved to the buttock area, and has since been steadily subsiding! I am using a cane now, and in the space of just one single week I have gone from leaning very heavily on it to where I am now, just using it as a steadying tool! I can hardly believe the rate of improvement -- I had really lost hope of walking unassisted without pain.

I was quite skeptical but at the same time willing to try just about anything. My dear "Jocktor Dannit" had recommended that I go to a pain specialist, which I really didn't want to do. However, she agreed to write for one month of the cheaper pain medicine to get me through the interim period. It's looking like I may not need medicine for much longer!

I have a follow-up appointment next week with the oncologist/surgeon/ob/gyn for the blood clot: I still don't really understand how they know when it will be safe for me to stop taking blood thinners, but I'm looking forward to the end of that regimen and hoping it will be soon.

I want to get to a point at which I can go up to the bookstore and at least be helpful, even if I'm not at full working capacity right away. My next goal is starting to drive a car again. I have real hopes now that this will be soon.

Lots of love and many, many thanks for all your well-wishes and prayers! I'll keep you posted, just not as regularly because I hope to be away from the computer! =empresse
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been away so long again... 10-01-2004 - 11:35 AM
I've been "away" for such a long time yet again.

Running out of Rx coverage has turned into a huge nightmare. Dr. Janet wrote me an Rx for 80mg of the Oxycontin so I would just have to take one pill instead of three of the 20mg. I figured it would save money, plus I figured I wouldn't have to take the breakthrough oxycodone. A month's supply was something like 800 dollars. So DH had the pharmacy call her and reduce the quantity, and then a number of phone calls later the end of the story is that it's been laid on me to research alternatives. There is a generic, but apparently it isn't much of a savings.

Well, now that the Vioxx has been recalled, that's one less. I've been going around in circles until I feel like I'm going insane. The 80 mg has given me enough pain relief that I can actually use the cane. However, it seems to make my knee swell up afterwards. I alternate between thinking I should just get off the narcotic pain relievers and just deal with it, to being so relieved that I can actually use the cane without terrible pain & thinking we'll just have to find a way to afford the Rx. Looking up drugs to see whether there's a higher strength of the stuff that's not extended-release ... would have to take it more often but would it be cheaper, and does it even exist... I'm mad about having to take it at all, period. And then I think I should just have Dr. Janet taper me off of it so I don't take it at all any more, ever. But then I think I will end up going insane with the pain. I don't know what the alternatives are, what different medication I could use to get pain relief that is effective and cheaper. I guess I just need to call the pharmacist. I'm terrified of running out of the patch, as every time I run out of something it's another several hundred dollars... DH gets in a bad mood, and I just cry and cry -- I'm just going nuts here.

But trying to put a good face on, since my cousin and my uncle are here from out of town. My cousin brought along the family history records I've been bugging him to mail, and he's going to make copies -- we just barely scratched the surface of the two file folders the other night. When I actually get some free time again, the genealogy and beading will keep me busy.

Apparently I have to be receiving disability for two years before I qualify for Medicare. Applied for Medicaid (another reason I haven't been here -- more filling out of forms). DH just now told me that the Catholic charities refunded our application money and sent us a discount card! But I don't know anything more than that, like how much of a discount, or what is covered. Kind of mad at him for not telling me this while I've been going in circles with the search for a less expensive generic oxycodone and worrying myself sick.

Dr. Janet's nurse said for me to talk to the pharmacist. I'm kind of mad about the search being put in my lap, but I'm sure they're busy too. The nurse said that she talked to a pharmacist in their town and he said he'd give me a special price on the breakthrough medicine, but honestly that's just a drop in the bucket. It's the extended-release that is so expensive. I am going to have to do a comparison price chart (what I'm working on now) ... again, I'm going around in circles with this. I swear, I'm going nuts. DH asked me why I'm not eligible for Medicare since Dr. Janet seemed to think I would be, and I broke down in hysterics... I don't know why she thought I'd be eligible...don't know why it takes two years... don't know when I'll hear back about the application for Medicaid, don't know what it would cover...don't know anything, really. All I know is that I'm getting better pain relief with the horrendously expensive 80 mg dose and I only have to take one instead of three.

It's not helping to clear my mind, journaling about it.

I don't know what other pain medications are available and what the equivalent dosage would be -- I just need to call the pharmacist, I guess.
________
I called the pharmacist. He spent lots of time on the phone with me and has helped me enormously once again.

My alternatives are methadone and morphine. I'm going to look up the side-effects. I can't afford the patch, either -- it's $659.00 a month. I have no idea how this will affect me. Everything will be different -- no Vioxx, no patch... but at least I know what my alternatives are now. Of course it's Friday and Dr. Janet is off.

Sorry if this whole entry is weird and disjointed, but I'm not going to rewrite for clarity. For those who care, it will give you an idea of what's been going on -- and for myself, it's a record of how I get when I go around in circles.

gotta go look stuff up...
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New Avatar! 09-25-2004 - 10:17 AM
Thanks to Jmac for seeing it on the new avatar menu and pointing me to it! It's as though it were made just for me.

Some of the people at DH's work took up a collection for us -- enclosed in a sweet card signed by lots and lots of people, $310.00!! It's so very sweet of them to do this! DH noted that it was not the big-money-making salesmen, but the office workers and mechanics...
I read somewhere --I think it might have been Barbara Ehrenreich -- someone who noted that it is the people who are themselves struggling to get by who are the more generous when someone they know is in trouble.

Along these same lines, as it turns out, some people at the bar were trying to arrange a benefit to help us, too. But the person who told DH about it said that every time they had a date lined up, one of the people in charge would call and say they had to accept a paying gig for that date.

I feel a little weird about this kind of thing. But I have always contributed to benefits for other people so I can see it as a kind of 'karma' thing.

Last night, DH and I went to the bar to hear/see the Troubadours of Divine Bliss, an energetic, melodious, innovative duo (I may have written about them before). They were so glad to see me, and dedicated a song to me.

An odd thing happened, too. My ex-fiance was there, and left immediately after I said hello to him. He rarely goes out in public, and I wondered if it was because I was there with DH that he left.

This evening will be busy. Andre's third birthday party, plus my uncle is flying in from Germany tonight.
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Great News! 09-23-2004 - 08:44 PM
awww you guys are so sweet to me!

Hey -- I got some good news today -- I've been approved for temporary disability!!! This is going to take some of the weight off (financially speaking)!! DH is delighted. I know how hard this whole thing has been for him. We both got blindsided by it, and it was so much worse than it was supposed to be.

For some reason my foot is swelling today. I have no idea what makes today different from yesterday. If I could just figure this out, I would never swell again.
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some things are good, and some are not 09-22-2004 - 12:36 AM
I keep writing things and then deleting the whole entry.

I wish I could just fall asleep. I dropped a bottle of pills on the floor today and got on the floor to pick them up. Getting back up off the floor was no fun. But at least Little Bear didn't get the pills! That was my main concern. I am so sore now. Parts of my leg that never hurt before are hurting now, and also my right hand/wrist from pulling myself up. This is frustrating. I should be glad though. If I were "fluffy," it would have been a lot worse.

Things that are good:
My weight -- neither too thin nor too fat
My surgery scars are fading
My foot and ankle have looked normal for over 24 hours

I'm sure there are lots of other things that are good. I just can't think of any right now. I am going to try sleep again. At least the phone is quiet now!
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Adventuring With Andre 09-18-2004 - 10:43 PM
Saturday, 18 September, 2004
Well, thanks to DH and our grandson, I am no longer in such a black mood! Last night I typed a long stream of complaints, looked at it, and hit the "back" button. So I purged the feelings and didn't subject anyone else to them.

Stepdaughter "M" displayed her bead jewelry at a local craft fair today, and we took Andre on a five-hour adventure. First, we drove up to the combination feed/farm supply/auto repair shop (about 15 minutes away) with a couple of items to barter for the work this sweet man did to get DH's car in shape for emissions testing. We listened to a CD of the Wiggles and clapped and did the twist in our seats on the way out of town. Andre trotted off with "Grandpa" to the back of the huge property where the owner/mechanic was working on his fence, and I crutched around the shop for a bit. One of the store kitties came up to say hello and then made her way (I supposed her to be a she -- very pretty tortie) to the tank of bait minnows where she was scooped up by a little girl. Next to the minnows, I found a cricket habitat. I imagine they are sold as bait as well. arano's frogs eat them, and I thought of buying her some, but we wouldn't have been back in town early enough to ensure their survival. I looked at bags of feed -- for chickens, horses, and even deer.

Then I went outside and sat on an old riding lawnmower in front of the shop to have a smoke. (I know, still smoking... not ready to give them up yet...) Along came the men-folk, bartering completed. DH said later that the man didn't want to accept anything, but he insisted -- DH knew he'd laid out cash to diagnose the problem ( check engine light staying on) plus put gas in the tank... He is quite a character. Everyone loves him, for good reason. DH says he has a 'following' of neighborhood kids because he built a minibike thing for his kids and of course they have all that huge property to run around on. I used to go there for puppydog treats when I was still engaged to the man I didn't marry, and the owner always threw in a few extra because of course I brought the puppydog with me and she was sooooo cute... The owner was sitting there playing guitar one day -- another thing he and DH have in common. Their interactions are usually over the phone, when he calls DH at work in the parts department. I think they both really enjoyed this unusual transaction -- gave them a chance to hang out a bit together.

Anyway -- back to our Adventures. We piled back into "M's" SUV, Andre announcing that his car seat is a "racecar seat," and drove onward to the lake enclave where I used to live with the aforementioned ex-fiance. At the clubhouse on the lake, there is a nice playground in sand. Andre was all excited about going to the slide and the swings, but when we got there, he was more interested in building a sand castle. DH took him down the slide on his lap once, and then Andre found a shovel. DH found a couple of abandoned sturdy plastic cups -- I made the mistake of calling one of them a "cup," and Andre said, "IT's Name is Pail! " (He's only almost three...) DH filled them at the lake and so they had a bit of damp sand and the tools of castlebuilding. I contributed a "leaf dragon" (wove two leaves onto another leaf for 'wings') and then made a flag for the top with a stick and a leaf. Mostly I sat at the picnic table in the shade nearby and watched. I perched on the tiewall for a little while to get a closer view, but my leg is quite swollen at the knee and my ankle was puffing up, so I wanted to at least have it flat out in front of me.

Andre was thinking of a different park, closer to his house, and was wanting to feed the ducks. There were ducks where we went, all asleep in the shade of a shed by the lake. We didn't feed them. They didn't seem to want to be disturbed, and Andre had lost interest. I showed him how to clap his hands together to brush the sand off, which was a great source of delight for some reason.

We kept asking him if he was thirsty -- he had come with a giant bottle of Gatorade -- and he kept saying no -- but after the construction project, when we got back into the car, he guzzled the whole bottle! And for some reason he found that hilarious. He has this infectious laugh -- DH says he sounds like Bart Simpson! He fell asleep on the way back to town, and DH gave him a diaper change in the back of the SUV before we went in to the restaurant to eat. It was so funny to listen to (I was still sitting in the shotgun seat) -- diapers have changed since DH's diaper-changing days. It's nice not to have cloth and pins, but too easy to get them on backwards (which he did the first time). Andre is so big for diapers, too. He has a nice little potty at home and he will sit on it -- last time we were there, I read him a whole book while he sat on the potty -- but he won't use it for its intended purpose.

The waiter brought three menus, so Andre was pleased to have his own menu from which to order. I read him his choices, and he wanted "sketti." He chose milk to drink, and DH showed him how to blow the paper off the straw. The silverware came wrapped in the napkin with a paper ring holding it together. "I wonder what is in here," said Andre, and -- what a grand surprise it was for him to unroll the knife and fork! I folded the paper napkin rings and stood them up, and he huffed and he puffed and he blew them all down. This kept us all entertained until the food arrived.

And oh boy did that boy eat sketti! He is still mastering the fork, and he had fork in one hand, knife in the other, and was helping the food into his mouth from the fork with the hand holding the knife...he was sketti all the way up to his eyes! Luckily, "M" had packed a couple of changes of clothes for him...

DH and I ordered Gyros; the cucumber sauce came on the side in those tiny clear plastic to-go sauce containers. Andre had sprinkled cheese on his sketti, but he started having a small fit and we couldn't understand what he was saying. Finally I got it -- he wanted "the white." He wanted to put white sauce on his food, too. So I sprinkled some of the Parmesan into one of the empty sauce containers and he was satisfied -- he tried scooping it out with his knife the way he'd seen me do it, and finally just dumped it on top.

As we were finishing up, a friend ... another "M" (I really have to give everyone nicknames, as this is getting ridiculous) came in with his banjo! He sang me an 'assassination song' -- some old talking ballad about oh who was it... eh, some old President who was killed long, long ago (not Kennedy) -- and then Andre started singing "Old MacDonald." So "M" picked out the tune and we had a sing-along right there in the restaurant!

"M" is also an artist, and he's going to hang a show in our store -- been going to do this for a year now -- well, he's going to take me with him when he goes!

And so our day of Adventuring With Andre came to a close. We brought him back to Mommy at the craft fair, and came home for a nap. Mommy was in a better mood than she was when we left her -- she made back her $25.00 booth fee plus a little extra. She was so afraid that none of it was going to sell. One of her brother-in-laws is quite artistic, and he and her husband made her a display using a piece of lattice. The booth looked very nice. As it turned out, DH ran into someone we know from the bar who had bought a couple of "M" bracelets for her little girl, "B"! So now "B" and I will have something to talk about next week at Happy Hour -- our matching bracelets. (Yep, people bring their kids. It's not what you think of when you think "Happy Hour." It just means that they have live music on Fridays from 5 - 8 pm.)

While I was napping, my mother- and father-in-law stopped by, so we had four generations in one day! Not all together, alas. I was sorry I didn't get up, but I was really groggy and by the time I was sort of ready to get out of bed, they had been gone for about an hour and arano was here. She brought me her beading stuff! She gave me a quick rundown on using the bead loom, and I spent some time looking up patterns on the internet. Also came up with some cool ideas not using the loom. She has Tons of beads -- mostly seed beads. If I end up making anything salable, I'm going to give her half the money. She doesn't know this yet. And anyway the first good thing I make will be a present for her.

I'm looking for ways to incorporate some of Jael's beads into my projects! One, I'm keeping for myself -- it's a very beautiful blue heart with daisies, and it has a name which is from an e.e. cummings poem: "i'm glad someone's crazy enough to give me a daisy" -- so I am going to try to incorporate the quote into the necklace somehow. I know they make alphabet beads, and I also found a diagram for the alphabet using the bead loom. This will not be my first project, as it will be pretty complicated. Plus, I want my first one to be for arano.

It's late, and despite my long nap, I'm tired at a reasonable hour for a change! I can hear DH unloading the dishwasher in the kitchen (duh, obviously we don't keep our dishwasher in the living room...) so anyway I have a smile on my face for a change and I'm going to keep it there!

Lots of love,
=empresse
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out of drug money now 09-13-2004 - 09:07 PM
Well, DH went to pick up my Rxs...$150 some-odd just for the Oxycontin. I don't know what I'm going to do. Plus, in the mail -- the government people set up an appointment to see one of their doctors in a town about 100 miles from here. They will reimburse travel costs, but who on earth is going to drive me...

DH says it will all work out somehow. But I am shattered. Not a good ending to my day. I'll have to come around to his way of thinking or I'll lose my mind. Right now I just can't stop crying.

Finally they hit on a drug combination that works, and it's getting pulled out from underneath me. I have about 2-1/2 weeks and then it's back to constant pain for me. (Unless DH discovers some kind of a miracle.)

Sorry to throw such a negative vibe out. I just feel extremely negative. =e
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some fun (yay!) and a fever (uh-oh) 09-13-2004 - 03:12 PM
Monday, 13 September, 2004
Today I needed Rxs again from Dr. Janet's office, and a kind woman -- yet another person with the first initial "M" -- took me for blood tests and then up to the office. She took me out to lunch, since I'd asked her to come too early to make it a seamless trip -- we would have hit Dr. Janet's office at lunch. We had a really good talk with all the driving plus the waiting times. Last time I saw Dr. Janet, she was concerned because I felt really warm, and again, when she hugged me this time she commented on it. So when I got home I took my temp -- it's at 99 again. Since I usually run in the 97.5 range, it's elevated for me. I started feeling kind of weird yesterday in the evening. We'd gone to a surprise retirement party at the bar, and I was having some breakthrough pain, and then when we got home I went from feeling unbearably hot to freezing cold -- enough for a sweater. With the menopause, this isn't terribly abnormal for me, but with everything combined plus feeling just drained, worn out exhausted with today's trip, I'm a little concerned now.

We had a wonderful time on Saturday -- after visiting my mother-in-law who is still just terribly depressed and still refusing to continue with her shock treatments (which sounds awful, but they had been working really well and she was back to her "old self" for a while) we then went to visit friends in another St. Louis suburb. It's too bad that their home is in a bad neighborhood, because they have this wonderful lawn out back with a big vegetable garden, lots of different flowerbeds, big trees, an above-ground pool, and then a covered back patio with a hot tub. "S" had a part DH needed for the VW bus, plus he had been storing an old bus bumper there, so we picked those up and then we brought freshly-made bratwurst that DH gets from a butcher who now works at the dealership with him. "D" made wonderful potato salad and some slaw to go with it, and we sat outside and caught up on about a year's worth of news. Then they turned down the water temperature on their new hot tub and I got in. That was extremely therapeutic. I was worried that I would swell up, but I didn't, and my leg and hip felt good all the way until Sunday afternoon. We have an acquaintance in town (a friend's ex-boyfriend) who has invited us to use his hot tub, so if he will accommodate my temperature needs, I should be able to get more 'hydrotherapy' soon.

Well I just wanted to catch up on all that before taking a rest, but now it's time to lie down. =e

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Reading the news and commentary, 9-11-2004 09-11-2004 - 10:27 AM
Today I don't have the usual confusion over the date. The newspapers are full of it. From its naming as "Patriot Day" and moments of silence, bell-ringing ceremonies and speeches to analyses of the survivors, September 11th rules the news today.

I didn't lose anyone that day, but I have friends and relatives in the three areas that were affected. Until communications were restored to NY and NJ, I worried. I was able to determine right away that my DC-area and Pittsburgh relatives were all fine.

I just finished reading a long analysis of the bereaved children in the NYT. I lived in NYC when both my parents died; I was 4 when my dad died and 7 when my mom died. Some of the adults who were in the network of caretakers are still an important part of my life, in spite of my aunt's efforts to slice me away from them when I moved to their house in the Midwest.

All I wanted to do was to go back to NYC, but never had the guts to run away as a kid. I finally escaped the Midwest after college, moving first to Massachusetts and then to NJ, with a promise by my then-boyfriend that we would get an apartment in NYC. Not only did that never happen, but also due to his stalking me when I finally had the courage to leave his abusive control, ironically, I moved to the Midwest again. But this time I kept my ties with the people from my childhood, the people with whom I had re-connected as a young adult. And it is those people who have been my 'parent figures,' my people who offer comfort from far away, throughout this past year while I've been going through one thing after another. This is not to take away anything from the network of people here -- my DH, my dear "arano," my cousins. It's just that in thinking about my own loss of parents as a child, reading about the kids in NY and NJ (and of course there are kids all over the country as well) who were orphaned on this date, I find myself honoring with gratitude the people who have comforted me in my adult life.

The actions of my aunt in cutting me off from all contact with relatives on my mom's side of the family and friends from my life with my parents -- unnecessarily cruel and yet somehow my uncle just let her do it. No sense in dwelling on that part of my past. Plus, she's dead now. But I did realize today that in doing what she did, she was paving the way for the later abusive treatment she got away with after my uncle died. She cut off my communication with the outside world of people who cared. And my ex-boyfriend essentially tried to do the same.

My dear husband is quite the reverse. He enjoys meeting my old friends and relatives. He wouldn't dream of abusing me. My cousins, only half-joking, even threatened him with dire consequences if he would ever do me any harm whatsoever.

I'm losing track of my original points.

Part of it is, as an orphaned child, I was subjected to mental cruelty and then made poor choices in relationships when I got older. Luckily and with the emotional support of some of the people I had re-found, I was able to get out of the cycle.

Parents are a child's 'safety net.' Not all parents are kind and loving and have their child's best interests in mind -- I was lucky to be born to two people who loved and cherished me. Losing them brought a horrible aftermath. Eventually, at long-last, I've made a new world for myself. I'm 43 now -- and my 'new world' is a fairly recent creation. My heart goes out to all the children, not only the 9/11 orphans but also the new horror of the Chechnya school. (That was another article I read, about how some Russian corporations are opening up their vacation spa to the survivors and giving them a month of therapy.)

I'm lucky because I was able to rebuild, even though it took many painful lessons over many years. A shattered life made more complicated when the new adults who are supposed to protect you are actually out to harm you -- this left lasting scars, and I'm still healing at the age of 43. I worry about so many kids and what their futures hold for them. I hope for better things for them as children, and for the opportunity to heal while still young.

There was a time when I was still living with the abuser on the East Coast when I couldn't see a way out. I thought dying would be an okay solution. Thankfully, I'm alive today and even though this past year has been rough, I am still glad to be alive. All the horrible experiences I've had in the past have made me who I am today, and one thing stands out -- I can relate to people who are going through all sorts of different kinds of situations. I wish I could take a more active role in helping the orphans of 9/11 -- and any child who has lost a parent -- and this is one of the goals I hope to achieve before I die (hoping that is in the far future). I want to set up some kind of financial safety net for orphans. Something that combines scholarship money for higher education along with insurance for mental health and a fund for emergencies. Things that happen when you're a young adult that most people would turn to their parents to help with.

I survived my childhood, my young-adult-hood, and I'm finally going beyond being "a survivor" to actually living. Yes, despite this health glitch.

I'm not sure that I've made this a cohesive essay, and I might work on it more later -- just wanted to get some of the thoughts down before I forget. I have to cut it short now to get on with the business of today. -e

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establishing routines, and plans for action 09-09-2004 - 10:48 AM
Little Bear has been on my lap while I've been sitting here still catching up on everyone's journals. I think he knows I am feeling a little down today. Not the black funk I was in for a while, just on the verge of tears for no particular reason.

Finally, after 3 days of constantly wearing the white TED knee-highs, the swelling is almost down. Just a little bit left in my ankle. Now it is time to wash them -- past time! -- and have a nice shower. Oh, for the days I never gave showering a second thought, just jumped in 'real quick' when I was in a hurry, never skipped a day. Now it is a real project for me to climb into the tub and onto the bath seat. I've made progress, though. I can stand up to wash and rinse my hair. I worry though because almost always, getting clean means that I am going to swell up again. I used to take lovely, steaming-hot showers, but now since hot water can be a factor in swelling, I keep the water tepid. I'm sure my erratic bathing schedule plus the cooler water has saved us some $$ on the water bill. Just washing up isn't enough to make me feel really clean, though. So -- don't laugh -- my new goal for the rest of the week involves getting into the tub daily.

I think I will feel better if I have a better routine. So instead of napping for too long and then staying up too late, I am going to make myself stay awake and go to bed earlier. That will help me get up earlier to say hello to my DH before he goes to work. Then I can get through the shower and have breakfast. We're out of the cereal I like -- "Smart Start" (it stays crunchy all the way to the end of the bowl) -- and at least we have this Shop-n-Save brand Raisin Bran to get me through. It tastes weird though. Salty. But I will have a bowl again today. Actually, my system with that is to have 3 tiny bowls, so it doesn't turn into a soggy mush. Usually I look forward to the breakfast part of my routine. What a silly thing to make me cry, being out of the cereal I like. Maybe I will skip the cereal, since DH did buy a loaf of the bread we both like. Maybe I'll have a PBJ for breakfast instead. And then I will get myself clean and do my hand-wash. What an exciting life, eh?

I think I am also sad because I can't just hop in the car and do the grocery shopping. I need to get myself to a point where I can drive. I think my leg is strong enough now. It's not all spindly the way it was (when it's not swollen) -- I can see some muscle there. The question is, what will using it to drive do to the pain level. And can I just bite the bullet and endure for the bigger pay-off of independence? It's a moot point, since there is no way I can drive the borrowed truck -- can't even get in it without a boost -- and its gears are hard to find. When DH gets his car back, I am going to see if I can manage it. If so, that will take a load off him. It would mean that I could drive him to work, maybe even sit in a motorized shopping cart at the supermarket. Not sure how I'd get the groceries in the house though.

Well, if I packed it all in plastic bags with handles, lots of light weight (I hate using all that plastic but at least we can recycle the bags and we do re-use them) I could handle one at a time with the crutches. Or, if I can get to where I can use the cane, that would be easier yet.

It's good to make these plans, but since I don't have any way of implementing them in the near future, I'm going back to what I can do. Which is all going to begin with establishing the better sleep and cleanliness routine. And who knows -- maybe "B" will find time to take me to the bookstore...

Today I can also do a bit of mending. I've been meaning to and haven't. I have a whole list of that sort of thing, actually. Letters I need to write. Going outside and sowing a fall crop of arugula before it's too late. Although that is probably a Vitamin K food... I'd better look that up before eating any. Out here in the Midwest, no one knows what it is. It's sold in the supermarket as an herb, a few wilted leaves in a plastic container. If they have any at all. Oh, for the East Coast where I could buy a whole bagful, like spinach. And where no one said, "Arugu-what?" Where they have public transportation that will take you where you want to go at any time of day.

(I've toyed with the idea of taking the bus to the town where our store is, but it only runs twice a day at unhelpful hours.) (But at this point, I think any hour would be "helpful!&quot

Somehow I will get through this. This is not forever. One day at a time. Focus on today, =e! Today I will do at least one thing that gives me a sense of accomplishment. The old saying, "When life gives you lemons, make lemonade." If I can't eat the arugula myself, I can give it away. I'm sure the cousins "M" would like it, and arano might. Getting outside would be a good thing, too. Now that I'm not taking the antibiotic, I shouldn't be as sun-sensitive. It's not too hot & humid to make me swell. (Can you hear me talking myself into these things?)

First things first -- I think I'll have a PB & J.

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responses (unfinished) 09-08-2004 - 09:23 AM
Thanks to Audrey, icareforbunnies, and Moonchime for comments on my last entry. I will respond to some things here.

It was a "DVT" -- "deep vein thrombosis," so no luck on it just being a hematoma. I can't imagine the INR fluctuations being dietary-related. I haven't made any drastic changes in what I eat. If anything, I've had fewer Vitamin K foods -- but even saying that, not much of a change. We eat pretty much the same rotating menu every week. I'm going to look more closely at Vitamin K content, just to be sure. Dr. Janet said it could be from going off the antibiotic. I need to go get my blood tested again, and she's ordered some additional tests. Cousin "J" has gone to Germany, so my circle of possible rides is minus one. "arano" usually takes me, but she's pretty overwhelmed with school and just being the mom of a seven-year-old right now. I might ask daughter-in-law M.

She stopped by DH's work to give him 2 books for me and my new, sized-to-fit bracelet! I've already read The DaVinci Code and I'm looking forward to Angels & Demons, also by Dan Brown. We had talked about these, and she couldn't remember which one I'd already read. I was delighted that she remembered our conversation and lent me the books. I'm still in the middle of Soldier of the Great War -- don't know why I'm not reading as much as I was, considering all the free time I have.

I would prefer to give away jewelry to friends, too. If I sell any, it will be through DH's work or other avenues. Melissa didn't want to charge us for the bracelet, but her dad insisted -- she's doing this to help out with their household finances, and we wanted to support that. And, since we're struggling too, if I do make jewelry, it will be to sell somewhere. Later, when things are under control and I'm either getting disability or back at work or whatever is going to happen, I can start thinking about making jewelry as gifts. Of course when I go back to work I won't have all this free time that I've been squandering. Sometimes I wonder what the heck it is that I do all day. I am just itching to get back to work.

Thanks for filling me in on what's been going on with "hunny" -- you know me and 'praying' ... well, I actually said a prayer for you, dear. I wish I could do something. I hate this helpless feeling.

more later =e
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Labor Day Sunday Celebrations and talk of relatives and alcohol 09-07-2004 - 12:21 AM
Monday (Labor Day), beginning the Vertical Minute. That's 11:11 (pm).

After yesterday's excitement, we spent a quiet day at home. Didn't do anything in particular. I read some things on the computer, visited my political site and made a couple of creative posts there. Got sidetracked onto a blog from which someone had posted a great entry, and spent a good hour reading there. Looked at some Tolkien sites, had some good laughs at Tolkien humor while not finding the Gollum quote I was looking for to include in a post I was writing. My Tolkien books are upstairs and I didn't want to ask DH to get them for me. He was a bit hung over.

Yesterday we went first to "E's" house -- my newlywed stepdaughter. "M" (my other stepdaughter) has been making bead jewelry and selling it, and she had it with her. I am very proud of her for doing this! It's been hard for them. My son-in-law lost one of his jobs when the restaurant where he was a chef closed. Even though we are broke, DH said I could choose something for myself. I wanted to help them, so I chose a bracelet. She is going to resize it for me -- even though I've gained weight and I'm at a good weight now, I still have tiny wrists. I am inspired to do the same but don't want to seem like a copycat or that I am competing. I know that my style would be different from hers, and it is something we could do together so I'm going to run the idea by DH. I would need a little money to invest in supplies to start out with. "M" recouped her initial investment in a week. Of course, her sister bought $50.00 worth right away. And then some people at my son-in-law's work, and some people "M" used to work with. She is looking into selling online as well.

arano has been promising for ages to bring over some extra beads she has, and her bead loom. (If you're reading this, I'm planning to remind you this week!) The ideas I have will take some practice. And I want to make something for arano first, before I make anything to sell. I feel weird about selling stuff to friends and family. Even at the bookstore, but it's easier to get past the "weird" feeling there. OH I want to be there SO badly. But this is NOT going to be a "Wah-wah alas and poor me" entry.

Back to yesterday. Finally got to see the proofs of the wedding photos. I look good in ONE of them...and it's one that DH got caught in an unflattering light. Sigh. For pro photography, it's kind of a boring assortment. When I'm feeling better one of the things I'd like to do is invest a little money in photo equipment and do a wedding here and there on the side. Not that you can get Hugely creative with wedding photography, but I do think I could have done a better job than the guy "E" hired. There are just pages and pages of photos posed in the same ways. I realize that the posed photos are standard and even imperative, but had I been the photographer I would have created more variety within the parameters.

Andre (grandson) was sooooo cute! And being a bit of a brat as well. Had to have the yellow ball to play with, and was then mad because it needed air. How a not-quite-3-year-old knew that needing air was what was wrong ... makes me think he is a budding Genius. I mean, it was a volleyball, and it wasn't very flat.

They had the usual giant spread of barbecue and side dishes, but as we were going to the cousins M for fajitas later, I only ate dessert. I should have had a cookie or cheesecake, but had both. Lately I've had quite the sweet tooth! The cheesecake ... can't pass up cheesecake! When we get a new stove (if we ever do..) along with pies and tarts I will also be trying cheesecake recipes.

Onward to the cousins M and have I mentioned their new huge high-definition television? I sat outside most of the time, though. DH brought out M's guitar, and he and another party guest (whom I will call "Rios" instead of yet another initial) traded songs back and forth. DH did the Buddy Miller song about landmines that always makes me cry, and I even sang along a bit. I have trouble staying on key, so I don't sing often.

Cousin M's wife M made her signature Margaritas to go with the fajitas...DH had too many. (I didn't have any.) I warned him that they were deadly -- lethal, even -- but he had three of them anyway. We got a phone call making sure we'd gotten home okay. I can't drive, and DH insisted he was fine. He did all right, but it was a risk he shouldn't have taken. I didn't lecture him. Maybe I should have. Well, it's too late now -- too far after the fact to bring up. I understand his drinking more in general with all the stress he's under, being the sole breadwinner with bills mounting sky-high and no relief in sight yet as far as me bringing in any money is concerned. It's a bit of a curse to be so understanding, though. Oh well, the inevitable lecture will come, and my having been so understanding throughout will give my words more weight, rather than if I'd been constantly commenting on his drinking. I do think I missed an opportunity last night/today, however. Part of it is that I see his awareness of it. I respect him, and I think he's savvy enough to nip it in the bud. But it's looking like he might need a few words from me to help him along.

The fajitas, by the way, were excellent.

Cousin "J" left for Germany today. His dad, my uncle, whom he went to visit, will be here beginning the last Tuesday in September. (Perhaps this is where I get my weird sense of time from, although we're not related by blood.) Another cousin, I'll call "Father F," and his wife will make a visit to coincide with that of their dad's. I have a past history of getting hypersensitive during these visits. I get that "left out" feeling thing going on, because even though my cousins are like brothers to me, I'm not a real daughter to their dad. He means well... he is a very self-centered person, theatrically speaking. Not self-centered in a selfish way. It's just all about him. I love him dearly and seek his approval. That is part of why I get so crazy when he is here. I think I may remind him too strongly of his dead wife (my aunt, my father's sister) -- which is a compliment but also probably affects his response to me. I am always flattered and thrilled when people say I am like Mimi.

Since her mother brought me up through highschool, I have a weird family position. For instance, I'm Mimi's niece, not her sister, and yet my uncle will slip and refer to my dad as my brother, or to my grandmother as my mother. I am contemporary (in age) with his kids, and they wanted me (as opposed to the family who "got" me after my parents died -- the wife of that uncle did not want me, as I may have mentioned in past entries.) My uncle doesn't like me to refer to him as "Uncle J," saying that it makes him feel "old." He is quite spry and dapper. It will be strange to visit and not drink with him. His visits are the only times I drink gin -- he puts lots of lime in it for me and I feel very grown-up. But even though I had a couple of beers and a few glasses of wine this summer, at the weddings and when "H" came to town, with all the medication I'm taking it's not a good idea for me to have alcoholic beverages. This will also mean I won't be having wine with dinner when "J-my-uncle" comes to town.

Yes, both sides of my family enjoy their alcohol. I used to be able to "hold my liquor" remarkably well for a person without a trace of body fat. I miss having wine with dinner and the 'cocktail hour' get-togethers. It's just not the same, having a soda or water or juice. I suppose it's a degree of "sophistication" that I associate with what I'm describing. Oh well. I've discovered that wine gives me hot flashes now. We'll see what happens when I can finally stop taking all the medicine, whether I still react strangely to various alcoholic beverages.

I'm still confused about the blood clot. I have to take six Warfarin tablets at night now. My "therapeutic level" is still "unstable." Do I still have a blood clot? When do I get to stop taking the anti-coagulant? arano asks me this periodically and I never know the answer. The doctors "explain" it to me but it has never made any sense.

Swelling report: it's mainly in the right ankle right now. My foot was puffy after yesterday's shower, and I've been wearing the white compression knee-highs and Undergarment ever since. Yesterday the leg felt heavy. Today it isn't uncomfortable, and finally, at long last, the constant pain has subsided. I only did a bit of stretching today. No leg lifts or knee bends. Had my feet up above my heart and fell asleep of course -- which explains my late-night entry. I'm wide-awake. If I am still this perky in ten minutes, I think it will be another Sleepytime Tea night.

I PMed hunnybunches after seeing that icareforbunnies was crying and upset. I'm wondering whether she had made an entry public and changed it to private before I got here today, because the latest entry I saw sounded quite positive. Like she'd confronted her problem and was moving on. I'm thinking I've missed something. Either I'm misreading the current entry and there is nothing I haven't read, or else there was an entry that is no longer public. This may be why I've written so much about alcohol in this post, too...because she's been on my mind.

Ah well. I suppose I will make that tea. This was intended to be a funny and lighthearted entry, but I've missed that mark. I don't feel like going back and rewriting, either. At least it's not a huge broken-record blathering.

Good night, and sweet dreams sisters.
=empresse

PS: Speaking of dreams, I've been having nightmares. Two nights ago, a weird one involving pain treatments; today's nap, one that felt like a recurring dream, having something to do with someone spying on me -- more like espionage than stalking. OK -- it's teatime.
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A Rather Boring Day 09-05-2004 - 02:11 AM
Saturday night -- late -- actually Sunday morning, technically. I went to bed at a decent hour but woke up hurting and dreaming about some weird kind of treatment including shots which were suddenly discontinued, and tablets that I was to put in my shoes and crush with my feet (idea being that the medication would enter transdermally). So I made some Sleepytime tea, put sugar and 1/2&1/2 in it. Had just one graham cracker with butter -- starting to cut down on the late-night snacking. I've never been overweight and now is not the time to get that way!

A woman on another forum said that spreading yogurt on graham crackers and freezing them is tasty, so I tried that while waiting for the tea to steep. They are now in the freezer.

Today was a wash. arano called wanting to go swimming and I should have said "Yes" right then and there. But I hemmed and hawed, wanting to invite DH and he was out getting tools to work on the VW (Not my Scirocco -- the bus --) and supplies to fix the sink faucet in the downstairs bathroom.

Something came up and arano had to stay home. The problem with the bus wasn't the simple thing DH thought, and turns out to be an alternator which is different for a '74 than for other years, so relatively scarce and pricey. He might do a conversion instead. I have forgotten the details. I did get to help -- pushed down on the clutch with my good foot. And the store that would have the fitting for my ancient faucet was closed for vacation. But at least the water takes a little time to get hot, and as the sink is no longer clogged, I can still use it to wash my hands and brush my teeth instead of using the tub. DH scoured my tub, btw, which was very nice, and then I ended up not even using it today.

I didn't have my foot up high enough today and didn't have a stocking on, and it swelled, and the whole leg feels heavy again. I did some stretching and light on the exercising, and I crutched out to the garage and back. But mostly I just sat and played Text Twist rather mindlessly. Didn't watch TV or any of the stack of documentaries I've got. I also have Moulin Rouge which I have not yet seen. I didn't read (except for news on the computer, plus a bit of catching-up on sisters' journals).

Since my exam on Wednesday, I've developed a new area of pain, sort of like a shin splint. Probably from proving my inability to walk. I put my full weight on it and also did strength proofs (I think I may have described this already) -- anyway, I think that's what did it but it should be calming down by now...days later.

DH bought corn on the cob and it was the best yet this year! We had gotten some from our friend's farm garden last time and it was really starchy and chewy. I was wondering if maybe she'd grown it for the horses and not for humans! DH liked it, though. The kernels were quite large, and after gnawing all around, the cob was very skinny. The store-bought corn was probably grown locally -- I think it was just a different variety.

Well, at least now I can add 'wrote in my journal' to my tiny list of accomplishments.

Can't think of much else to say. I'm hoping the tea will do its work quickly so that I have a good, restful sleep. =e
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Friday, first Friday in September 2004 09-04-2004 - 12:56 AM
Oh my dear, sweet, loyal Sisters! Thank you for believing in me, for being so supportive of me, for being here for me! Special thanks to Jmac, Moonchime, and Tam, and apologies for causing you worry. Moonchime, I didn't mean to make you feel sad for me... I know you can't help it. I don't know if there is anything you can do beyond lighting the candles and praying...I think, just keep me in your thoughts and remember, you do so much to encourage me.

Physical report: despite lots of stretching exercises yesterday and today, still feeling the effects of Wednesday's exam. Took breakthrough medicine Wed. pm and Thurs. but none today, although I may have to before getting into bed. I know that with time, the constant pain will pass, which has kept me from just popping pills and thereby running out right after having bragged about not needing them. I really should have known after the exam and asked for a refill rx then and there. Silly me. Oh well. Pride is involved here, too. Proud and bragging about not needing the extras. And then comes "the fall." NO -- I didn't fall literally! No, I mean the phrase, "Pride goeth before a fall," and the metaphorical fall from the state of not needing the breakthrough meds. And pride prevents me from taking the maximum allowed dosage. All that being said, I'm off to take the medicine so I can sleep.

There. I should feel better soon.

Swelling report: Have not worn any compression since I spilled coffee on my leg/foot this morning. I was wearing the 'sleeve' since my stockings needed a wash, so all of them are now clean and drying. Other than crutching around the house a little, (and exercising) I had my leg elevated on the couch for most of the day, and did not swell. arano took me out for ice cream after dinner -- mmm hot fudge sundae! -- and I wore my new lace-up sneakers and socks. It's now a little after 1am and my foot is a bit puffy. It's been elevated slightly while I've been here at the computer, but not above my heart the way it was while I was on the couch.

DH stayed home and did tests on the computer today, so I was in the living room instead of in front of the computer. I got a bit of reading done (reading Soldier of the Great War by um um.... Mark Helprin) and worked on a book of NYT Sunday crosswords while sort-of watching the History channel. "B" stopped by -- had his stepdad's truck since his car is still awaiting its part. He should be getting settled into his new house just a few blocks away soon now. I never did pick up the phone to call R. The phone rings and rings. DH and I have fun with Caller ID. We yell "Otto!" for Out Of Area. Then there's Toll Free Call, which I think is a collection agency wanting that hundred dollars for the cell phone bill they wouldn't waive when my phone was stolen. Sometimes "Otto" can be a doctor, but then they leave a message. I pick up when I'm expecting a call from one, so that I don't have to run up long distance calling them back. Some days I just go ahead and pick up all the calls; some, I get so tired of the constant ringing that I turn the ringer off. Deep depression days are no-ringer days, usually. Today, some of the guys from DH's work were playing phone games instead of working. They just love to tease him!

I have a Lap Full of Cat at the moment. I didn't even know he was inside, but Little Bear has nestled in on top of my legs and under my right arm. Oh -- during last week or the week before when I wasn't writing, our other cat Moush had disappeared. He finally came home! He's really mad about being under house arrest, "grounded!" It was funny when I was going out to wait for M to take me to the doctor -- Moush was watching me and I could just see him thinking. I think he thought it would be unfair to take advantage of my awkwardness with the door on crutches, and he visibly decided not to run outside! Last night, he was going nuts. Running around the house at top speed. Meowing. Whoever had him, cut the mats out of his fur (yay) but he's still Our Cat. Both of them had ditched their collars a while back -- ironically, it was the day DH brought home the new collars and tags when Moush did his disappearing act. He stayed away for a week! We called the police to see if he'd gone to kitty jail, and put a Lost Cat ad in the paper. One person called --he'd seen him on a street perpendicular to ours, at the far end from our house. I don't even really like for him to go out at all because he has no front claws, but he loves it outside. He's a bit battle scarred about the ears and eyes. He is definitely the King of the Street, though! We have tons of cats in our neighborhood. Someone down the street had kittens and they all roam -- they must be nearly a year old by now.

One day, Little Bear was out and I was looking for him -- three other small-sized black cats came to the front porch! The only way I could tell which one was him was by his skin (he'd taken offf his collar by then) -- he has a chronic intermittent skin problem with scabby little bumps. He's had his flea treatment, so this shouldn't be flea-induced, but he's started up again with the pulling out of hair and the bumps. I wish I could afford to take him to the vet again, but since it's not life-threatening, it will have to wait. He's calm and comfy now, on my lap,

Update on the mental music/voices: last couple of nights have been electric guitar, something in a major key with lots of chords, along with news commentators. I should write down the phrases when I hear them! I've forgotten them all of course. It's like my own private radio station, but I can't change the channel. I have moments of fear that I'm developing a psychosis, but then I calm myself with the reminder that it's a probable side-effect of medication and not permanent. And it's not like the voices are telling me to do things, or as though I'm really listening. It could be a lot worse. It could be incurable and constant tinnitus like DH has.

Luckily I share no blood line with the psychotic aunt! llllllllllllllllllllllllll
uh oh...getting sleepy! A Line of l...

I'll have to save the psychotic aunt thoughts for another time. I think I've mentioned her here. I shall have to read over my posts.

Headline Newsflash!
"Acorns Will Be Better Than Deadly Rays!" This was the male commentator speaking. hahahahahahaha! Either I'm recording a descent into madness, or simply enjoying a quirky side effect. Oh well. It's incredibly amusing.
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Broken Record 09-02-2004 - 02:59 PM
Thursday, 2 September, 2004
I've been "away" for much too long again. I cut short a PM to my dearest Jmac saying that I was going to write in my journal first, and then ended up reading and commenting on Moonchime's instead. So before I do any more catching up, commenting, or PM-ing, I am going to focus on my own journal.

It's been over a week since I last wrote. I've been in and out of a Grand Funk through the entire month of August, which is usually one of my best months. My birthday and the birthdays of lots of wonderful friends and relatives come in August. It's usually a whirlwind of celebrations with delicious food and gift-giving (and receiving!) This year with the exception of my own birthday, things fell rather flat -- although I did get out to see Lucinda Williams and have been to 'happy hour' a few times -- and this past weekend, went to see my favorite local band. Didn't get together for "B's" birthday, didn't go out with cousin Z for his... I realized that I usually play a more active role in getting people together for celebrations and outings. I got my feelings hurt by not being included in an outing for "B's" birthday, even though the people are supposedly some of my "best friends." But the way I've been acting, I wouldn't be surprised if they didn't just assume I wouldn't feel like it.

My "normal" self is gregarious and smiling. More of a "leader" than a "follower." My "normal" self lives up to the title "empresse." And it's my job to get back to something approaching my "normal" self.

I dissolved in tears last Sunday at the bar when a friend "S" asked me, "Are you involved with the bookstore at all any more?" Well, no, actually. "R" could call me, but doesn't -- and instead of being hurt that she doesn't, I should just pick up the phone and call her. She sent me a book in the mail for my birthday and I haven't even thanked her for it yet. And so I'm thinking now, instead of writing in my journal I ought to be on the phone to her. But one thing at a time. I used to be really good at "multitasking." That is another thing I'll have to get back to in restoring myself to what is "normal" for me. Meanwhile, I'm going to continue this entry and resolve to pick up the phone later.

Part of the reason I'm "not involved" in the bookstore is B's inability to fulfill the promise of taking me there and staying with me. He has a list of his own obstacles. Car trouble, was going to move into this house a month ago and it's still not ready so he's still at his mom's. He picked up a shift at the bar, and he was working Sunday when "S" asked me that question. And he had just told me about the get-together in which I wasn't included, and given me that list of his own obstacles...so I was already feeling fragile. I'm just so incredibly frustrated by my inability to walk and drive.

Here are some of my transportation complaints: even if I could drive, my car's shifter is broken and it's off the insurance to save money. The part is here, but DH sees no sense in fixing it since I can't drive it anyway and we can't afford to add it back onto the insurance and then the cost of gas even if I could drive. I can't give it a try, which frustrates me. I hate asking for rides, over and over, week after week. I hate asking for anything. And this situation has forced me into asking and asking.

Yesterday I was an emotional wreck. It all started with the temporary disability co-ordinator saying there was no record of anything neurological. She put me in for an appointment with one of their docs. (I'm on a waiting list.) She said it would speed things along if I saw one of my own. Well, Dr. Janet was wanting to see me, and they gave me an appointment for the next day when I called. Great! But then...getting there. arano is back in school and had class, so she suggested her mom. No luck -- her mom had a Scrabble date. I tried cousin "J" but got the voice mail. Arano's friend, who is an acquaintance of mine, was at her house later on; she asked him, and he said he would if my cousin wasn't available, but he was planning on working all day. So firstly I felt it would be an imposition; secondly, the town where Dr. Janet has her office (and where the bookstore is) is notoriously prejudiced. This friend is Black and wears his hair in kind-of long dreadlocks. I didn't want to subject him to the stares of the denizens of the town. (When I told arano this, she said he wouldn't have cared, would have even relished it, but as he is not a good enough friend of mine for me to know that, I didn't feel right about it. Plus I felt like I was imposing anyway.)

Oh I'm not telling this very well. I'm making it more confusing than it needs to be. My point is that even though I could get a ride from arano's friend, I was trying to find someone else to take me. And it was getting closer and closer to appointment time, and I wasn't cleaned up yet, because I was calling everyone I could think of instead of getting into the tub/shower. So I ended up calling DH at work. My stepdaughter M took me. It all worked out just fine.

Dr. Janet needed to see me make my lame (heh) attempt at walking without the crutches. Then she tested my reflexes -- right side wasn't working. And then she had me do strength: push upwards, push down. Her verdict -- I have nerve damage.

So it's good to have an official "diagnosis..." and she thinks I won't have any trouble being approved for the temp. disability -- she's giving them the info -- so I should be happy. Right? And I'm sort of relieved. DH is taking me more seriously again. It "proves" I'm not malingering, and that it's not 'in my head.'

Added to that, the resident doc in charge of my warfarin levels never called me about the results of the last blood test, so I called long distance... level is still low, so now I have the joy of taking SIX tablets at bedtime. And when you have what looks like half a bottle of pills turns out to be a two-day supply... another tearful call to DH. That comes mail-order. Luckily, CVS has an Rx I can draw from to 'hold me over' until it arrives in the mail if it doesn't get here in time.

So, yeah, I haven't called "R" and part of my "excuse" is that I'm so often waiting for some doctor to call me back. And I was waiting to hear from "B" about the original plan for riding up there. And now I just can't keep a lid on my emotions about the whole thing and don't want to call her up in tears. Especially calling to say I don't have a plan B, and don't know how I'm going to manage. And feeling terribly guilty that it's all on her shoulders and circumstances are still preventing me from doing anything to ease that. Plus, DH may indeed have a valid point about me 'getting caught' working while applying for disability saying that I can't. Even though it would only be a few hours a week and wouldn't really "count" as being back to work. If I blew the case I don't know if either of us would ever forgive me. But I know "R" has stress level through the roof and it's driving me crazy not being able to help.

I've said a lot of this before in other journal entries. Repeating myself. I just feel so shattered. Trying to put the pieces together. Trying to sort out why I haven't done x and y, and so on.

So please bear with me. I'm stuck in a rut, sound like a broken record.

The whole thing feels like a Catch-22 amplified. I want to get back to work but I don't have transportation and I'm still not up to snuff AND I can't risk getting turned down for the disability. Then there's the whole issue of getting myself 'up to snuff.' Without the insurance paying for it, I can't afford any kind of physical therapy or alternative approaches -- but I'm not making any progress without it. I need to make some money so I can pay for some kind of treatment to improve my 'condition.' It goes around and around and around through my mind. I need to get better so I can work; I need to work to make money to pay for getting better...

We've had an unusually cool and rainy August. I haven't been swimming regularly because I am a wimp about cold water (plus it's unwise to swim during thunderstorms!). I get all tensed up and make myself feel worse instead of better. The Y has an indoor pool, but it costs money. Another acquaintance has offered the use of his hot tub, but the catch is -- I'm not supposed to get in very hot water with the lymphedema. Which, by the way, is under control. If it is in fact lymphedema. Another of those Catch-22 things...if you don't walk, you're prone to swelling, plus the blood clot could have caused swelling...or it could be that I've just gotten it under control and it is lymphedema and not just plain ol' edema. I also discovered that one of the possible side-effects of Vioxx is ... edema. But without the Vioxx, the pain returns to constant instead of managed.

I tried the one homeopathic remedy for a month. No luck. So I'm still on the same combination of Rx drugs, which are effectively managing the pain. As long as I don't put weight on the right leg. I've been trying to use the cane a little bit each day. When I don't use the cane, I don't have pain and don't need the breakthrough medicine. Yesterday's exam smashed through the pain barrier erected by the medicine combination, and I'm still taking the breakthrough stuff. I don't know if I'm weepy because of the pain or weepy because of taking the extra medicine. Or maybe just being fed up with everything. And bored because I'm "not involved at all with the store." I hate it when someone says something and you just can't get it out of your mind. Like a skipping record (remember those?) playing the same phrase over and over.

phone -- just gonna hit
'enter"





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joy 08-24-2004 - 11:37 AM
Tuesday, 24 August 2004
I was just reading Moonchime's journal and when I replied to her I realized I had a whole journal entry just asking to be written.

Doing what you can with what you have... doing more of what you can do in preparation for what you can't do...yet. I have let my days get rather boring, because I'm not doing everything I can do. New outlook: instead of focusing on my anger/frustration at inabilities, doing more of the things that I am able to do.

We went to see Lucinda Williams last Friday. Her show in the spring was postponed because her mother died. I was sorry that she lost her mother, but the joke was that she postponed her show so that I could go. The highlight of the show was at the end, when her opening band The Bottle Rockets joined her in performing her "Joy" song. At the beginning of her show, she just walked up to the mike and started in with a song... I think she did five songs before she said a word to the audience. Seemed like she was in a bad mood.

LUCINDA WILLIAMS LYRICS


Joy

I don't want you anymore
cause you took my joy
I don't want you anymore
you took my joy

you took my joy
I want it back
you took my joy
I want it back

I'm gonna go to west memphis and look for my joy
go to west memphis and look for my joy
maybe in west memphis I'll find my joy
maybe in west memphis i'll find my joy

I'm gonna go to slidell and look for my joy
go to slidell and look for my joy
maybe in slidell I'll find my joy
maybe in slidell I'll find my joy

(first long instrumental break)

you got no right to take my joy
I want it back
you got no right to take my joy
I want it back

you took my joy
I want it back
you took my joy
I want it back

I'm gonna go to west memphis and look for my joy
go to west memphis and look for my joy
maybe in west memphis I'll find my joy
maybe in west memphis I'll find my joy

I'm gonna go to slidell and look for my joy
go to slidell and look for my joy
maybe in slidell I'll find my joy
maybe in slidell I'll find my joy

(second instrumental break)

I don't want you anymore
cause you took my joy
I don't want you anymore
you took my joy

you took my joy
I want it back
you took my joy
I want it back

you took my joy
I want it back
you took my
I want it back

(third & last instrumental break -- slows down)

I'm gonna go to west memphis
I'm gonna go to slidell
____________________
She inserted the name of the place where we were, and it was evident that she had indeed found herself some "joy" during the course of performing for this huge group of intense fans.

I had heard some of her songs, and one of my acquaintances is a Huge Lucinda fan -- even named her daughter Lucinda -- but I didn't know that much about her. I still don't know a whole lot, but it's obvious that she's taken her pain and written it into songs that speak to many people.

When I was writing to Moonchime, this Bible verse jumped into my mind: "The joy of the Lord is my strength." I wouldn't go so far as to say that for Lucinda Williams, that is true -- I think, for her, she finds strength and inspiration in her own pain. For me, "the joy of the Lord" is the joy I feel when a hummingbird comes to visit our front porch. Which makes me think of Moonchime and her love for hummingbirds, and of Jmac with her love of butterflies. All of us love our pets -- they have dogs, I have cats -- and I put "the joy of the Lord" into a meaning of "delight in nature."

I am reminded by all of this that I need to focus on what I can do, and to do more of it. In terms of exercise, this means more repetitions, not new exercises. Creatively, this means using the supplies I have to draw/paint/stamp pretty things to bring a bit of joy to the recipient. I'm even working on a piece of poetry. I also made a piece of art online to add to a collage of work. ( [http://nowyouhavecontrol.com/a_tellmemore.htm] ) It's not much, but it's more than nothing. Even when I'm dissatisfied with myself, which is often, if I can just remember some of these simple things I feel better while doing -- and afterwards, the satisfaction of having completed a thing.

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a shopping trip 08-18-2004 - 10:58 PM
Wednesday, I've lost track of dates again, mid-August, 2004

My friend "arano" took me shopping today -- she bought me a pair of lace-up sneakers (which the physical therapist had suggested I get months ago ) and she found an unusual pair of comfortable-yet-attractive shoes -- I almost got a similar style, but lace-up, but they just didn't feel right -- and then we went to Goodwill & found a really cute (hot-season) top and a nice dress for me (hope they fit!) and a great sweater for her. We also went out for Chinese food and ran errands. This is especially sweet of her -- she said I "saved her money" even though she spent money on me -- she would have bought impractical stuff that she wouldn't have ended up wearing. I look forward to being able to take her shopping! I will have money again some day...

It was a long, big day for me. A lot of "crutching," and a lot of standing on one foot. Now, in the past, this kind of outing has been a toss-up with the effect it might have on the swelling issue. Tonight, I'm a little swollen and having "hip" pain despite the medication. It's more the upper part of the right buttock than all the way over to the side, what I'm calling my "hip." One would think that this kind of pain would occur on the leg I'm using to bear my weight and walk around.

**I got this far and then went off on a tangent that I decided to keep private. Sorry -- it's not that I don't trust you all -- it's just one of those things that involves DH that I needed to vent but not necessarily share...

Other than that, it was a good, fun day. I'm tired. Maybe I'll write more tomorrow.
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Mostly just physical record 08-17-2004 - 01:41 AM
Technically Tuesday, as it's 2:20am (!!)
Last night I kept dozing off at the drop of a hat...tonight I'm wakeful. I got a fair amount of exercise -- rode along while my friend "arano" went to get her books for fall classes; then we went to the coffee shop -- ah HAH! The wakefulness must be the afternoon coffee. Sigh. I do love it (tall latte with whole milk) but I guess I am too sensitive to drinking it in the afternoon now.

Tonight I am hearing a lovely oboe melody (or perhaps it's clarinet? Not low enough for bassoon.) If it's the angels, I'm thankful for the variety!

So far I am not feeling any improvement from the homeopathic medicine. But I didn't expect an instant miracle. I admit, I hoped for one...

The weather is still cool, but it warmed up this afternoon and I was a bit overdressed -- still cooling off from being outside in it. I think I had a couple of evening hot flashes these past few nights, between sixish and sevenish. Also tonight I have had the sniffles. Last night I took my temp when I was feeling especially hot -- 97.7 LOL!

Now that I'm at a good weight, I need to stop the night time ice cream. I can't walk it off or dance it away the way I used to, and I don't want to balloon up. I had a bowl tonight to get rid of the nasty mirtazepine flavor. Tomorrow night I will have a cherry Lifesaver (TM) instead. And I think I will add sit-ups to my exercise routine!

I haven't tried using the cane yet.

I'm afraid I will suddenly run out of Rx coverage and be physically addicted to the pain meds. I know we can't afford them, cash. So I'm praying the homeopathic pills will work -- get me on my feet, first off, and then let me cut back, back, back on the pain meds.

The swelling has been under control -- restricted to the ankle these past couple of days. I have been wearing the TED stockings 24-7. I need to wash them, and if I swell the teeniest bit, I shall have to wrap again. I hate the wrapping! I hate the swelling, more! Most of all I hate its unpredictable nature.

Maybe tomorrow I will feel more introspective and not just report on the physical.

I just want to feel strong and well, you know? Everyone tells me how "good" and How Great I look. So of course, it could be a lot worse. I could look wan and sickly. But it's kind of irritating to be commented on all the time...

What is it with the perfect strangers asking me questions about my leg? I had another one today. I just said "surgery" and left it at that -- she kept going on and on about how she broke her ankle 2 years ago...

Maybe they are those Spies for the Government, checking up on my Social Security Claim...nah. Speaking of which, I hope no news is good news -- haven't had a call from them yet this week. Also haven't heard a word on my Warfarin blood levels -- grrrr. I am going to ask DH to call them tomorrow. Or maybe I'll let it go till after Friday's blood test -- if I don't hear from them after that, then I'll ask him to call.

Why am I so wide-awake????? Going to try for some rest now. Love you! =e
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Sleepy Saturday 08-15-2004 - 01:03 AM
2am so now it's Sunday, August 15th
No music tonight, alas. It's unseasonably cool, and someone has been burning leaves (or something) so it even smells like fall. We still have a window open, but not all of them. Therefore it's possible that my music was coming from outdoors. I'm not buying it though -- it felt too otherworldly. Either the medication or a connection to another 'world.'

Today I was on the crutches a lot -- got tired, and both DH & I were asleep at 7pm! Luckily I woke up to take medicine. Just brewed a big cup of my Sleepytime tea -- even though I got about 6 hours of sleep, I don't want to be up for the day at 2am! (Well, 1am was when I got up.)

Woke up with hip pain ... well, I was four hours past the 12-hour mark. I'm trying to cut down/eliminate Rx pain meds, but so far nothin' doing -- still need 'em.

Little Bear is cuddled warmly on my lap as I type. He is such a sweet kitty! He woke up & realized I was out of bed, and came "peeping" into the kitchen to help me make the tea.

And the tea is working. I'm getting sleepy again. love, =e
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The Sound of Music 08-13-2004 - 11:02 PM
Moonchime's entry reminded me to put this in my journal.

I have started hearing music in a quiet house. The only thing on besides the computer is the fan. No radio, no TV -- it's not coming from a neighbor's house. I think I am having auditory hallucinations. Either that, or I am being haunted. Or possibly my dental fillings are picking up a radio station!

Tonight's music is fainter than last night's. Tonight it seems to be a brass ensemble with women's voices. Last night's "show" was a male voice and I wish I had written down what I could "hear" of the lyrics. Yep. I could hear distinct words.

I have had auditory hallucinations while at the edge of sleep before, years ago. There is a specific term for this phenomenon which I've forgotten. (*see link in next paragraph) I've heard my name called out -- which totally snaps me awake -- in my aunt's voice. The crazy one I lived with for a while when I was a kid (no blood relation so I didn't inherit this from her -- I learned much later in life that she actually heard voices...) Anyway, earlier this evening I was kind of starting to doze off while reading some news article, and I was awakened by a whistle. DH is sound asleep, so it wasn't him. It could have been someone outdoors, I suppose, but it felt like the same kind of auditory stuff that's been going on.

I'm wondering which medication it might be. I suspect either the mirtazepine (Remeron) or the Duragesic patch. I haven't gone to look at side-effects yet. The music thing is kind of nice, actually. Although tonight's is getting repetitive. But it could be far worse. DH has tinnitus (hence the fan).

*Hypnagogic. (quoting from this website [http://www.macalester.edu/~psych/whathap/UBNRP/narcolepsy/hallucinations.html] ) "Hypnagogic hallucinations can occur at sleep onset, either during daytime sleep episodes or at night. They are usually quite vivid, and often involve vision. The visual hallucinations usually consist of simple forms – colored circles or parts of objects – that are constant or changing in size. People may also see the image of an animal or a person, and are more often in color. Auditory hallucinations are also common, but other senses are seldom involved. The auditory hallucinations can range from a collection of sounds to an elaborate melody. Threatening sentences or harsh criticism might also menace the person." (click link above to read more)

Since that link refers backwards to symptoms of narcolepsy, I'm suspecting the Duragesic may be the culprit. Off again to look up side-effects now.

"Benzodiazepines have known to initiate musical hallucinations (Fisman, 1991)" (from a site with a very annoying wallpaper background [http://www.macalester.edu/~psych/whathap/UBNRP/Audition/site/Howcantheybetreated.html] I right-clicked and chose "select all" so I could read it against a maroon background...oh -- and I can't find this Fisman in the endnotes, btw.)

Well, I do take lorazepam, which is a benzodiazepine. I think that may be the cause. It was interesting to read up on auditory hallucinations, in any case. I am grateful not to have the same experiences as the woman in the following story:

"A 74 year-old deaf woman was admitted to a hospital because she was said to be acutely disturbed. She had left the water taps on in her house and had broken all of her crockery and said that she was tormented by voices. All of her routine physical signs were normal and her symptoms subsided after treatment with trifluoroperazine, but she complained of insistent voices emanating from her vagina in the form of songs singing the "Old Rugged Cross" and th "Hallelujah Chorus". At times she would sing along with the voices. After about 6 years of treatment, she began to complain about vaginal pain. Doctors examinations proved that there was nothing physiologicaly wrong with her and was diagnosed as psychogenic pain (that is pain without a physiological basis).

It is interesting to consider her life before the onset of these bizarre symptoms. She used to be socially active and independentand was married for 44 years before her husband died of a cardiovascular attack. She got involved in a relationship with a man much younger than herself and felt guilty for doing so. The psychologist diagnosed that it was her guilt about the relationship that caused her begin hear voices from her vagina and that this was transferred into pain emanating from the same area." (from [http://www.macalester.edu/~psych/whathap/UBNRP/Audition/site/peoplewhohavethem.html] )

The poor, poor woman ... but oh! how I laughed...

On that note, I am going to bed, and I shall let the brass ensemble and women's chorale sing me off to sleep!

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Friday the 13th??? A good day to record the ball of confusion. 08-13-2004 - 12:44 PM
Yes it is indeed Friday the 13th. Of August. 2004.
My birthday weekend was fun and full of food, and somehow I managed to spiral downward from that bubbling confidence back into the lethargy of depression.

Today is the first day of trying the first homeopathic remedy. The "first" because it came up as a match after I answered a zillion questions about "the condition" and also read a long article about it. I am using "sciatica" as "the condition" even though the pain does not mesh precisely with the location described. There is nothing wrong with my lower back, and some of the painful nerves are around the top of the thigh and down the front, which is not what they call "sciatica." I am kind of flying by the seat of my pants here, so to speak. I went through a fairly long phase of skepticism regarding homeopathy in general, and have come to the other side of that phase. I'm now in a "place" where I'm willing to try, and am combining my gathered information with a dose of intuition.

The article I read did not say how much to take. The answer to the questionnaire did not tell me how much to take. Nothing tells me duration. The bottle directions are 5 pellets, three times a day -- but that is aimed at using it as a remedy for colic. That seems like an awful lot. So I am throwing my intuition at it and taking 5 pellets once a day, to begin with.

I don't know when to expect results. This may be a good thing. Good, in that I won't be risking premature disappointment expecting it to work before it does. Intuition tells me to take 5 once a day for one week, and if nothing seems at all different, to increase the dosage to three times a day as the bottle directs.

Thursday the 19th of August will be my day of decision -- whether to increase dosage or leave it alone.

There are a couple of avenues to take if this does nothing. There is a second single-source remedy that also approximates the symptoms (but is not emphasized as strongly in the article and did not come up when I used the questionnaire method). There is also a multi-source remedy for sciatica. And there is the blend recommended by LizMom (although it addresses stress and the "nervous condition" as opposed to the physical nerve). I already have something for "the nervous condition" which simultaneously relaxes the cramping, constricting feeling at the top of the thigh. I tried going without that one, and the way I felt without it proved to me that it was indeed working.

I tried going without the duragesic patch, and that, too, proved to me that it is working. At some point I am going to have to get off the Oxycontin, you see. It's "nice" that the insurance is still paying for all this prescription medication, and each type does its part in addressing the pain, but despite all of it, when I try to put all my weight on the leg as is required for walking, I go back into severe pain. I have been doing exercises at home, stretching, stretching, stretching the surrounding muscles and tendons, following the theory of the physical therapist (which the insurance no longer covers thanks to using up so much money on hospitalizations). Some days I can put a bit of weight on it and I get all excited, only to be flattened later.

Since no-one knows the actual cause, other than it must involve the nerves somehow, I have no "do these things and you will have no more problems" road to take.

I am getting around better using the crutches, but I still can't manage the cane. That's my first goal -- to be able to walk using the cane.

The oncologist's nurse said I have lymphedema. And since I had those lymphoceles, it stood to reason that my lymphatic system was compromised. But the swelling doesn't follow any pattern. It is neither exacerbated nor ameliorated by exercise. While elevating the leg above the heart does often work to decrease swelling that has formed, it is not a consistent answer. Plus, I can't just lie around all day for the rest of my life! The weekend we went away for the wedding, I was quite active and had a lot of swelling. The following weekend, when we had company, I was equally active, and the swelling went way down.

For no particular reason, I had a few days when I was not at all swollen. I was wearing two shoes from before surgery.

I am not entirely convinced that I really have lymphedema. It is equally possible that the swelling is simply due to a combination of having (or having had) the blood clot, and the fact that I'm not putting my full weight on it to walk around. Disuse can cause swelling. The blood clot is a cause of swelling. OR -- it could be that the exercises I'm doing are working to circulate the lymphatic fluid properly.

There are too many factors for me to be able to sort this out properly. Sorry if this is boring to read, but I'm just trying to "tag" problems, find patterns (if any can be found). The oncologist passed the buck, just told me to "talk to the physical therapist" about the leg/hip pain. And the PT was just doing 'experiments, to see what would work.' Now that we've run out of insurance money to cover PT, my exercises are what I learned there, plus swimming.

Swimming...we've had an unseasonably cold spell, and I haven't been. First, it was So hot and the antibiotic was making me So sun-sensitive, but I made myself go anyway, just avoiding the sun-danger times, covering up with a long-sleeved t-shirt and using SPF 50. Then it got so chilly. The Y has an indoor pool, but that costs money. Which I don't have. BUT -- I stopped taking the antibiotic. I hadn't had a fever in ages, and it was starting to discolor my teeth. Combined with that new horror of the sun, I just decided I'd had enough doxycycline. I never got a definitive answer from Dr. Janet about whether it was time to stop, so I just gave up. Well, that's one expense I'm saving. However, my experiments with cutting out other prescription drugs simply resulted in increased pain.

The whole prescription drug thing has just about driven me -- and DH -- crazy anyway. I'm supposed to be hearing from one of the hospital doctors every-other-week after getting my blood tested to check the therapeutic level of Warfarin (anti-coagulant, for the blood clot). They upped it to 5 a night (prescribed 1mg tablets) and that caused all kinds of confusion with the insurance company. I'm supposed to get the Warfarin by mail-order, since it's a "maintenance" drug -- DH would order it, and it wouldn't arrive, and they'd say it was "too early for a refill" and I'd be OUT. The nice pharmacist at CVS let us pay cash for a small amount to "hold me over" several times while all this was going on. Then the insurance company and Dr. Janet's office got everything all confused and I started getting loads of my anti-depressant in the mail. I didn't need that. In fact, I had finally gotten that straightened out so I wouldn't have to take the nasty-tasting melt-in-mouth generic Mirtazepine. I had a refillable Rx for brand-name swallowable tablets of Remeron. But alas, I now have about 3 month's worth of the nasty-tasting stuff, which all arrived before I was even close to being out of the Remeron tablets.

Are you all totally lost and confused by all of this yet? I swear, it's enough to make even the happiest person frustrated and depressed beyond belief.

After they sent all that mirtazepine, finally I got a bottle of Warfarin in the mail. They sent 40. Well, taking 5 a night, that is an 8-day supply. Finally, at long last, they coordinated with a doctor -- I don't even remember which one now -- and sent a bottle of 100, refillable twice. Plus, the CVS pharmacist has an Rx on file for me for emergencies, in case next time I need a refill, I once again recieve nothing because they say it is "too soon." They don't notify you of that, by the way. They just don't send it. So it creates an emergency situation.

With the Rx thing, I have tried various approaches to avert crises. I tried having Dr. Janet's office mail me Rxs, but for some reason that never happened, which created a whole new series of crises when they gave me the Rxs that were written and not sent...violated a law about the date of the Rx. So now I just arrange for a ride to Dr. Janet's office and pick them up in person. It would be convenient if I were working, since her office is in the town where "our" store is. I put "our" in quotes now because all my plans have gone awry regarding getting back to work. "B" had promised to take me there and stay, help out, a few days a week...that happened ONCE. I know he is trying to get settled into a rental house and one thing and another came up... but he's totally let me down at this point. Promised to call/stop by -- didn't, hasn't.

So part of my thing now is getting so I can drive myself. DH got snippy about the gas required, since getting paid is a risk. A) question whether the store can afford to pay me; B) don't want to risk being rejected for the temporary disability coverage. Anyway at this point it's a non-issue -- public transportation could get me there at an odd time and then I'd have to stay until evening -- doesn't really help at the times I'm needed. I could handle opening the store and staying for a couple of hours, or going in the afternoon and staying to close up. If the bus ran more than twice a day, I could see "crutching" to the bus station... although at this point that would probably use up all my energy and I'd be no good once I finally got to the store.

I'm frustrated and depressed. I feel trapped. If I could drive, we can't afford for me to drive. My car needs work on the gearshift apparatus, and it's not on the insurance right now since it's not being driven. The expense of insurance and gas ... if I could get paid, that's where the money would have to be used. It's a catch-22. And here I had my hopes all up that "B" was 'saving the day' -- and that fell through. Meanwhile I am not working, can't get there and back on my own. So even if this homeopathic remedy gets me to a physical 'place' where I can drive, it doesn't get me anywhere.

The temporary disability is a whole 'nother nightmare. The various doctors have only sent partial records so it looks like I'm not telling the truth -- I've spoken with my new case manager (not the woman I used to work with at the restaurant -- this is the next level...at least there's progress...) and DH took all kinds of time at work (since he can call St. Louis direct, no toll) she is getting more of the required info. But then they wanted the PT people's info on me. They sent written requests to no avail. DH called -- they said they wouldn't fax anything, and wouldn't send anything via telephone query. "But they sent two written queries." "Well, we have to have a written query to mail out any info." Round and round. At least I finally got those d***ed depressing forms all done. But you know, when the case manager called...she was asking me questions that I'd already covered over the phone with the first case manager...

I haven't been writing in my journal here because of all this kind of thing going on. I've not wanted to focus any more on my health (or lack thereof). But I think it was helping me -- the routine of writing daily, if nothing else.

Where I "stand" now -- I'm experimenting on myself with homeopathic remedies, since I trust myself more than having the physical therapist experimenting on me. And I don't have to pay myself for the experiments. The bottle of colocynthis cost $6.69. It doesn't cost money to exercise at home, and once it gets warm enough again, I can swim for free. The every-other-week blood test is required, but for some reason the insurance is still covering that, even though we've run out of their allotted $$ according to other notices of things they're not paying for.

Every time I went to the hospital, they started a new account number. Added to that -- they have me under 2 different names. This was part of the problem with getting complete records sent to the Disability people. I have NO idea how much we owe for medical stuff. DH has been handling that. The hospital was supposed to send out some forms to fill out in hopes of getting at least some of it "written off" ... they've received thousands from the insurance company... and currently 'stuck' with only one income, we're just barely squeaking by as it is. I want to start going up to the store to do at least a little work, ease R out of at least a few hours, even if I can't get paid for it. So that eventually I can get back to work full time and get paid full salary. So that we will have money to pay bills. And the temporary disability would help immensely. H*** -- I'm not looking for permanent disability payments! I haven't been able to work for months and months. And it feels like I'm never going to get there. All these thousands of dollars, and I still can't walk across the room without crutches. I have no idea whether I'm going to swell up from one day to the next, don't know if I'm better off crutching around or putting my feet up. And I know I've been sitting here at the computer for far too long -- just sitting in one place can't be good, either, with my leg only slightly elevated... So, yeah, I'm pretty depressed.

The good news. Time to take a look at the brighter side of things. I can get out, if I have a ride -- I'm not stuck upstairs any more, at least. I have gained back the weight I lost, thanks to DH. Everyone says how great I look. We still get Rx coverage, so I'm not in constant terrible pain and I'm not as depressed as I would be without the anti-depressants.

So my first goal is to come back to making daily journal entries; from that, to actually finish short stories I've started (and send them out) and buckle down & work on the book. Since I'm stuck with 'down time,' I may as well make myself useful by writing.

"arano" gave me a new stamp for my birthday -- Chinese "Double Happiness" symbol. And I have thank you notes to write, so I may as well make the cards. At least add some creativity to my "routine."

I sincerely hope that this entry will leave me feeling less confused. Time to get away from the computer, do some exercises, do something!

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Getting to Know Me...Just a Little More... 08-08-2004 - 04:16 PM
First THANK YOU for the birthday wishes!! Doing this real quick-like before leaving for dinner:
1. What time do you get up? ideally, 7am; 8:30 on a good day, 9-ish or later otherwise

2. If you could eat lunch with one person, who would it be? living or dead. Justin Wilson! ("and a leetle bit More of dat Red Wine!&quot
Seriously, probably my father, who is dead

3. Gold or Silver? .... Gold

4. What was the last film that you saw at the cinema?.........Fahrenheit 451

5. What is/are your favourite TV shows?...... What's My Line? Brit version

6. What did you eat for breakfast?........Yummy omelet DH cooked (see previous journal entry!)

7. Who would you hate to be stuck in a room with?.....my cousin's
brother-in-law

8. What / who inspires you?........ Leonardo da Vinci, Jean Cocteau, Dorothea Lange, JK Rowling, JRR Tolkien, just to name a few.


9. What is your middle name?..........Eugenie

10. Beach, City or Country?............Beach!

11. Favourite ice cream? ..........Vanilla, Chocolate, Mocha, Raspberry, Fudge Swirl, Chocolate Chip...mmmmm ice cream!

12. Butter or plain popcorn? ........lotsa butter

13. Favourite color? ......... the green family, mostly on the bluish-green side

14. What kind of car do you drive?....... 1986? VW Scirocco

15. Favorite sandwich?......"Malibu" -- turkey, avocado, herbed goat cheese, alfalfa sprouts.


16. What characteristics do you despise ?..... violence

17. Favorite flower?........roses

18. If you could go anywhere in the world on vacation where would you go ? Wales

19. What color is your bathroom?....... downstairs, dusty blue/white; upstairs, white

20. Where would you like to retire?...... Spain? NYC? Martha's Vineyard? A Tropical Island? or just stay here?

21. Favorite day of the week?.........Sunday

22. What did you do for your last birthday?....... went swimming, went out for Vietnamese food, went to "the bar" (our local bar is where a lot of our friends hang out so it was like a huge party without the expense!)

23. Where were you born?............NYC (Chelsea)

24. Favorite sport to watch?.........Cardinals baseball (with DH), or figure skating

25. Who do you least expect to send this back to you....

26. Person you expect to send it back first?....

27. What fabric detergent do you use?...... I prefer unscented; DH gets whatever is on sale. If I had unlimited budget, I'd get Ecover from the health food store...

28. Coke or Pepsi ?.......Coke, although I drink ginger ale with lime -- Or mixed with orange juice mmmm -- at home. I prefer the taste of Coke to the taste of Pepsi.

29. Are you a morning person or a night owl?........Whooooo!

30. Do you have any pets?.....Moush (means "cat" in some other language -- DH's ex-GF named him -- BIG orange/white male Maine Coon cat) and Little Bear a.k.a. The Peeper (little black male who says "peep peep" instead of "meow&quot
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Happy Birthday to Meeeeee! 08-08-2004 - 11:54 AM
8 August, 2004 -- that means I am 43! Which rhymes with "Me" which stands for trouble trouble trouble with a capital "T"
Alas, I have not yet returned to my wicked, wicked ways ... not yet ready to dance the night away ... but what a wonderful weekend I am having!

Last night, the cousins M invited us to dinner. They grilled Enormous shish-ke-babs, and crazy cousin J made a lovely salad with asparagus, tomatoes, and potatoes (unusual combination that was absolutely inspired). Then a freshly baked peach cobbler with candles for me to blow out -- and, unexpectedly, a birthday present! The cousins M went to our favorite local import store ("Beyond Timbuktu&quot and found an exquisite embroidered purse for me. Hand-sewn in India by a women's collective, so I know that no one was exploited in creating this work of art. The shoulder strap and top edge are a gold-colored silk stitched fabric, and the 'body' of the purse is intricately embroidered in a geometric pattern with maroon and green and brown, accented with the gold color. This color scheme will look very nice with the brown silk skirt they helped me get for E's wedding -- I'm going to wear it to dinner tonight. My stepdaughters are taking us out to dinner for my birthday! I didn't expect that at All. DH said that he didn't remind them -- E remembered!

My birthday is just aaalll about Food this year! And it has all come as a big surprise. DH got up early this morning to get fresh ingredients for his Signature Omelet. Fresh mushrooms sauteed in butter & olive oil with fresh garlic, with Cheddar and cream cheese, pork sausage, and of course the eggs -- enhanced with half-and-half. Oh, and a fresh locally-grown tomato on the side. And he bought me a beautiful, sentimental card -- the first one I have ever received that says "For My Wife!" Plus, what he wrote about his love for me made me cry. I am so happy, and so very lucky.

And then I got a sweet PM from my dear friend "Jmac" when I arrived here! She didn't know it was my birthday, but she must have somehow connected with it on some level -- part of her message was a wish-present!

All this, and I didn't expect any of it. I feel very, very loved.

Added to that, I'm feeling pretty good, physically! Only my ankle is a bit puffy -- the foot looks and feels normal! I'm not hurting! I haven't started using the cane yet, but today will be a good time to give it a try! Even if it's only a few steps -- even TWO steps... I'll let you know how that goes.

Oh-- I forgot to tell you -- my darling husband lifted me into the VW microbus for our jaunt out to the cousins M last night! It's so much fun to ride in. And driving along the country road with no lines and no streetlights really made us feel like we were traveling by magic back in time. "Magic Bus" indeed!

I can't believe I'm 43. I don't feel 43! I don't look 43! Other than this glitch in the health, I'm really blessed with some kind of amazing genes. I thought that after the hyst my skin would go all old, but I'm as greasy-faced as ever! (Mixed blessing, of course.) Now I just need a libido to go with it, and to walk, of course, and I'll be all set for another few decades!

Since no one seems to know/care what the leg/hip pain problem actually is, I've decided that I'm just going to exercise, exercise, exercise for strength, and learn to deal with the pain -- determined to walk no matter how it feels. Back to the Little Mermaid story. I figure it like this -- even though I'm not thrilled about all the medication I'm on just to combat the "baseline" pain, and even though putting weight on the leg creates a whole new level of pain -- there are millions of elderly people who walk despite the terrible pain of arthritis. I'm going to try a homeopathic remedy along with this new determination, because of course my eventual goal is to get off all the pain meds -- but meanwhile, to Hades with the pain -- I'm going to walk. This time next year, I'll be dancing. That is the New and Improved Plan.

And so, on that note -- I'm off to do some more exercises.

Lots of love from your now-elderly (hehe) =empresse
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Was it the candles? I have a foot instead of a sausage! 08-02-2004 - 10:50 AM
Monday, 2 August, 2004
A mystery: the swelling in my right leg is gone. Was it the candles? Was it my keeping it elevated most of the weekend and wearing the Teds compression knee-highs 24-7 (including sleeping until Noon on Sunday)? Was it my new attempts to "pretend walk" with it while using the crutches? I don't know.

Another possible factor: due to insurance regulations, I have to get my blood thinner via mail-order. They said my refill was "too soon" again, although the doc has changed the dosage again (grr) so luckily my trusty pharmacist 'saved me' again by selling us a small amount to get me through the weekend. Meanwhile they sent the wrong Rx -- now I've got more antidepressant than I know what to do with...and it's the generic melt-in-your-mouth one that I hate. Anyway, I wonder whether having an insufficient level of blood thinner could possibly affect the flow of lymphatic fluid. Or -- the nagging question -- is it plain old edema and not lymphedema at all, brought on by inability to use the leg properly...

In any case, I can wear two shoes again! I like to think it was your candles!

I also took off the Duragesic patch yesterday and haven't yet replaced it. I wanted to see whether I would be in more pain without it or if I can get along without it. So far, so good. I seemed to have some hot flashes in the evening after not having it for several hours -- wondering if that was a withdrawal symptom or what. I still haven't decided whether to put it back on. The gel itself is gooey and the glue around the edges is so difficult to scrub off -- but if it's really helping me, then I'll keep using it. Since the swelling went down, I've been putting a little weight on the right leg while standing at the sink or using the crutches. So far I haven't had that excruciating pain. If this continues, with or without the Duragesic patch, I am going to try using the cane this week.

I can feel weird 'bubbling' sensations in the hip and around the front of my leg. I wonder what this is. If it is lymphatic fluid going about its business?

Last night we went to go swimming but the water was cold and turned out to be extra-chloriney (apparently you have to 'shock' your pool every few days to kill bacteria) so in the end I was glad I was a 'chicken' and didn't jump in. "B" is moving into a house down the street from the friend who has this pool, and we ran into him -- he is going to take me to the bookstore sometime this week! Last week's promise fell through, and I didn't get to go at all. I was feeling down in the dumps over that and just everything. All that being sedentary seems to have paid off, though. I keep looking at my foot in disbelief and joy.

I finally finished the dreaded horrible questionnaires, and got a mysterious call from the new 'case manager' (it registered on caller ID as "out of area," which I normally don't pick up if I'm not expecting a call from a doctor, because if it's not a doctor, it's a telemarketer -- so the case manager left a message to call her back, but no idea what about) -- stayed home Friday awaiting a return call from my return call, but she never called. I'm very curious/apprehensive about what she wanted. Maybe just to ask when I was sending the forms? And maybe she got the first round in the mail and decided the call back was unnecessary? Or who knows, maybe she's sick or took vacation.

I don't know. So I am picking up "Otto" calls (Out O' Area = "Otto" ... silly family joke) and getting telemarketers. For some reason, we are on everyone's list for a satellite dish. We really only have the cable for the internet connection. It's nice now that it's baseball season and a friend lent us a TV since my big TV would only show part of the picture -- DH loves to watch baseball. I had a couple of channel surfing days last week, but normally I don't think of TV and rarely turn it on. So the chances of us wanting satellite TV are zip, even if we did have the money.

It's suddenly gloomy -- had to turn on the light -- I think we're going to have some rain. Better see if the kittycats would like to come inside!

I will keep you posted on this possible 'miracle' !! Love, =e
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Thank You My Dear Divine Sisters! 07-29-2004 - 12:08 AM
Thank you Laura "hunny," for the candle -- and now to read from Moonchime's entry "Let's All Do What Hunnybunches Is Doing -- thank you -- that even more sisters are lighting candles for me and for other sisters -- and for the special encouragements you keep giving me instead of saying, "Enough already...get over yourself..." you continue to be kind. Thank you all so much! I'm touched by this. More than touched -- embraced. In blessing me, may you all be blessed hundreds of times over. Love to you all, =e
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I, too, am insane. 07-28-2004 - 11:57 AM
Wednesday, 28 July, 2004
I was going to catch up on everyone's journals, but I just read lostincanada's and decided to write in mine, instead. L -- you described very much of how I'm feeling and what I'm going through, in your entry "I think I am insane." I commented at the bottom, but realized that I, too, really need to write about this.

I did manage to complete one of the two forms and gave it to DH to xerox and mail back to the social security people. He said that he understood why it was so difficult for me to do what seemed so simple -- he said he cried when he read it. All those questions about "What did you used to do that you don't any more, and why not..." This next form is just frustrating memory-wise, because it's asking impossible questions about what I did every day in each job for the past 15 years. The types of jobs I've done have all been multi-task style, and it's difficult to put into a "box." Added to the frustration is that I did this once already on another form, just for the most recent job, and now they're asking for the same info again Plus repeating the same memory/mental process to do it for each previous job. I feel like a total "loser" to begin with, just waking up in the morning, and then being faced with just ONE thing to do and not doing it (fill out these forms) makes me feel even More of a loser. And the nature of the forms themselves just reinforce that Loser feeling.

I thought "B" was going to be my 'saving grace,' coming back from New Mexico and being my right hand at work, taking me back and forth and being there with me (and doing work) which would get my biz partner out of the store for a bit, give her at least a little break, along with getting me back into the swing of things slowly. But for some reason this is not happening. "B" is settling into a new place, fixing it up with the landlord, and also picking up some temporary work with one of my cousins, and also doing some other evening work, so I'm guessing that he's pretty tired and has bitten off quite enough to chew on without adding me and my bookstore to the mix. But that doesn't make me any more useful, doesn't get me up to the store. I'm disappointed and depressed over that.

In a way, I don't even want to go out at all. I am sick and tired of being at home all the time, and yet I don't want to get out and do anything, really. I want to Walk, not be wheeled around. When I go out using the crutches, I just get all these questions about: "How did you break your foot/ankle/whatever the ignorant questioner assumes?"

Last week when I went to get my blood tested, a store owner I'd never seen before actually came out of her store (next door to the blood lab) to ask me questions about why I was on crutches.

I went to "Happy Hour" with my husband, to get out and to eat dinner, and one of the 'regulars' at the bar asked me how I was ... I politely asked her how she was, and she said: "Better than you! " Well that just took the cake. I know I shouldn't take such things to heart. I don't know this woman very well, and I do know that she drinks an awful lot of wine, and for all I know she was more than half in the bag during this exchange. But it added to my feeling bad about myself. And it added to my not really wanting to go anywhere.

Now of course there are loads of people who are very kind to me. The woman on stage (acoustic guitar/singing) greeted me publicly when she saw me -- on the microphone, said she was glad to see me 'out and about.' It's nice to be missed, and to be very publicly acknowledged ... and at the same time I wanted to crawl under the table.

I should be swimming every day. It's cooled off, and my sunburn is gone, and my friend "arano" gave me spf 50 sunscreen, and she will take me swimming and I have another ride also -- but here I am, at home. I actually feel a little bit better this morning. Oh, it's 12:05 somehow -- make that, "this afternoon" now. I don't know where the time goes! I just ate breakfast, for heaven's sake! I feel like the days are escaping me. Some days feel so interminable and others fly by -- there is no rhyme nor reason to why.

That statement is also true for the state of my leg. Some days I am active, getting around on the crutches, and it swells -- other days of doing the same things and it is practically normal. Yesterday I was lying down for a good part of the day, and by evening I could feel the foot getting all swollen by the toes -- of course, I did get in and out of the tub for a shower. Something I used to do every day without thinking about it -- part of my old routine. Coffee - bathroom (for my one BM of the day) - shower - and away to do whatever, work or anything I chose to do. Now it's such an ordeal for me just to get in and out of the tub, I can go several days without even thinking of showering. This is so unlike me. I am afraid when my foot swells, and I cry. And so often, getting clean means that I am going to end up with a swollen foot/leg.

Our insurance money has run out for the year. My prescriptions are still covered, but we now have to pay full price for any doctor, therapy, testing, bloodwork. I have to have my blood tested every 2 weeks for the blood thinner level...don't know yet how much that actually costs. The bills keep coming from things that were done 2 months ago, things rejected by the insurance. So I won't be having an office visit with Dr. Janet any time soon. And I definitely won't be going to any physical therapy, even though I found out that there is someone closer to home who is certified in the treatment of lymphedema.

What I really want, and what was ignored and now we can't possibly afford -- I really want to find out WHY this pain persists in the hip/top of thigh/sciatic nerve area. And What to do to make me be able to walk on both feet without pain. My friend "arano" has a sister-in-law who is an occupational therapist, who recommended an exercise they use for sciatica... it's well-meaning and I appreciate it, but at the same time, I regret mentioning "sciatica" at all. Because I was using that term to look up possible homeopathic remedies. Using "nerve" kept giving me remedies for 'nervous conditions,' like in the mind, so I started searching using "sciatica" since that is a physical nerve (and probably one of the nerves involved).

Well-meaning and appreciated, all these people ... but I'm still unable to walk from here to the bathroom. I have been doing some of the exercises I learned, and that may be part of what is keeping the lymphedema at bay -- if it is even lymphedema at all. I question that as well. I don't have faith in any of this any more. Maybe I'm just swollen up because of not being able to walk ...

Last night, I was lying in bed with my feet up, just doing nothing. I had my hands clasped. DH asked me if I was praying! I don't even know what to pray for if I did pray! No, I was just sort of lying there, not doing much of anything, trying not to think about anything at all, really. Trying not to cry, mostly -- I've been on the verge of tears all week. I'm sure part of that is from expecting to go to work for a couple of hours a few days this week and not hearing anything. It's also possible that this anti-depressant (Remeron) isn't working as well as it might.

At least today I did a few things -- douched, like I'm supposed to every day but haven't been; handwashed my undergarment (which I wonder whether that even does anything about the swelling...)

Skepticism. I'm feeling just this huge wave of it. It started with doubting the original physical therapist knowing what she was doing, and then escalated. I don't know if I really have lymphedema or if they're just assuming that's the cause of the swelling. And then, researching the homeopathic remedies...it just sounds so medieval... that maybe people are cured by simple wishful thinking: the placebo effect. Although at this point I don't care, in a way -- if wishful thinking can make me able to walk, I'll take it. But how can I reap the benefits of wishful thinking when I can't bring myself to think wishfully? Maybe the mood will pass, the cynical, sarcastic, hopeless mood.

I'm not getting anywhere with my writing in general. Not here in the journals, not on the manuscript. Manuscript? HA! Notes, maybe, but it's not a manuscript yet. Nowhere close. And when I don't want to focus on feeling/being unwell, I have no desire to write about it.

I'm NOT going to delete this entry the way I have the last three times I wrote here. Even though I feel like I've just wasted my time with complaints, along with everyone else's time reading. This is the least creative, least interesting aspect of my personality -- this whining. But maybe it will help someone else who is feeling this way, just as reading lostincanada's entry helped me. At least I've made an entry. That's something. Sigh.
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in a funk again 07-20-2004 - 11:34 PM
20 July 2004
?
I think it's the 21st. It's past midnight.

I have been in a funk. Did I mention that the government (Social Security) has sent me another two packets of forms to fill out? Some of the questions are direct repeats (what -- they didn't read them the first time around?) (or are they trying to catch me out in a lie?) ... I look around me suspiciously, wondering if they really are spying on me ... hehe.

These questions are designed to make the person filling out the forms feel like the Biggest Loser in the World. I feel like sending a Polaroid of myself with a big red L pasted to my forehead. Yes, it's true that my "household chores" consist of loading/unloading the dishwasher a few times during the week and folding some of the laundry once a week.

One of the questions is, "Do you go shopping?" At first I just assumed they meant grocery shopping. But I got to thinking about it. No, I don't go shopping, and it's not just because I can't walk...it's because we have no money to shop for anything with! After we get done paying the copays for Rxs and now that the doctor/medical insurance money is used up for the year, also paying what didn't get covered (for instance, a bill for over $100.00 for blood testing from last month, a bit more extensive than what I have to get done every other week now, but still, !!!!)
there isn't much left to go grocery shopping with, let alone pay the rest of the bills. Like the property taxes coming up, for instance. So what is it I would be shopping for? Trying to come up with some comment about "window shopping," but not having any luck here.

I deleted my last entry because I was trying to make it funny and it wouldn't come out right. I'm headed down that same road again. I just can't find my sense of humor today. Or yesterday.

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another brief entry 07-17-2004 - 10:43 PM
Saturday July 17th 2004
Argh. I ache today, and I've been rather weepy. Do I still have hormonal cycles even without any of the regulatory organs?

Maybe I'm just overtired. I don't even really feel like writing anything here. I just changed the Duragesic patch -- late again; maybe that's why the aches and weepies? You would think that would be a simple thing, just slapping a patch on. I don't like the adhesive, and the delivery system is gooey as well.

I hope everyone else is doing well and having a nice time. Love, =empresse
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brief agenda 07-15-2004 - 10:36 AM
Thursday July 15th DH's 50th Birthday 2004
I am ready to go swimming.
The after-swim shower/bath will include shaving my legs.
Working on the birthday present is the rest of my plan for the day.


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Wednesday's Woes 07-14-2004 - 10:33 PM
Wednesday, 14 July, 2004 11pm
Swam for almost an hour yesterday evening. Focused on kicking; used one of those little 'boogie boards' they had at the public pool. Didn't get to swim today. Had blood test, then attempted to go to work. Rather, argued with DH on the phone about it, went to the store, shelved some books, and was exhausted after about 3 hours. Very frustrated with everything. DH has a birthday tomorrow, so we went out to dinner with his kids. I started trying to make that guitar shaped poem thing but of course it is nowhere near finished. I feel like the world's biggest schmuck.

We are officially out of insurance money for the rest of the year.

DH seems to think I am going to lose my shot at temporary disability if I try going in to work a little bit. I think he thinks they are spying on me.

I'm in one of those weepy moods, dissatisfied with everything especially myself.

Exercise: now it's a non-issue whether I go to a rehab place, since we're out of insurance money. This also means no compression garment. But I wasn't sure I needed it. But that decision has now been pre-made for me. Anyway, I will start going to P's pool, maybe tomorrow morning.

Although the way I feel right now, all I want to do tomorrow is sleep. I have to make him something for his birthday and I don't just want it to be a slipshod hastily-done thing, and I should have started this earlier. Can't change that.

Also rather a non-issue since apparently I can't handle more than a couple of hours of "work" yet, but I got frustrated because I couldn't set any kind of schedule. "B" needs to work out what he's doing with his living situation (will be doing some work to a rental and still needs to see the place, then needs to work out a schedule w/the owner -- who is a friend -- before he can make a Plan to take me back & forth.) "R" won't tell me what times are best for her, mornings or evenings, to get that couple of hours off.

I think what's best for me is to swim in the morning, then rest, then go up to the store. But if I do evenings, DH will not be pleased. I could open the store so R could have a couple of hours at home alone, and put off my swim until later. It just all spins in circles in my mind.

I'm a little sunburned from the doxycycline sun sensitivity effect, so my skin feels weird and I feel weird in general. Kind of whiny. My arms ache, possibly from shelving books (used the wheelchair) and possibly from all the 'crutching' I've been doing. The swelling decreased when I came home and put it up -- I started out with 2 shoes and had to remove the right one about 2 hours into the store time. I still have the TED hose on (how sexy...but DH went to sleep anyway) I just ought to join him. Maybe it will all look/feel/seem better in the morning.
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rushed 07-13-2004 - 08:59 AM
Tuesday, 13 July, not as early as I had hoped. 10 am, and arano will be here soon for coffee.

With the pressure on to do it fast, I can't do a 'morning musing.' My mind is racing with the phone calls I need to make and berating myself for being such a slug. I can't remember what I was dreaming about, and I don't have any kind of a "theme" for the day. So. Either I'll 'muse' later, or tomorrow, or ... or ... I don't know. I feel rushed.

The good news: my foot looks GREAT with having it up for so long, and I slept in the tED hose. OH I was going to do the marbles while I typed.

OH no wonder I'm a bit achy -- I was going to complain of that, but realized I haven't taken any medicine yet. So. Off the computer and off to start my day properly. Love, =e
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"later," after much sleeping; brainstorm, and a couple of lists 07-13-2004 - 12:02 AM
It's "later," all right! In fact, it's Tuesday! 12:38am to be precise.

After lunch with arano and her son, I laid down to put my feet up "for a couple of hours." DH came home, a little later than usual, around 6. Our stepdaughter dropped by...I think I incorporated her voice into a dream I was having ... she got the one-eye-open hullo... I think I actually got OUT of bed around 8:45 pm, and then DH started cooking dinner!

I think it may take another day or so before I jump into a real routine. Old housemate B is going to drop by tomorrow so I can get out & go to the coffee shop and figure out our work schedule for this week. He says that Wed. is the first day he's really free. I'll need to pick up Rxs from Dr. Janet that day, and she's in the same town as my bookstore, so that will be good. I must remember to go to the lab to get my blood drawn this week. Some doctor I've never heard of left a message on the phone and I forgot about it until just now, about having the blood tests for the Warfarin levels. Must be the new resident working with Dr. "Button" (the one who was covering for the gyn/onc when they found the blood clot). I'll call him back tomorrow.

I had visions of working on a thankyou card to my cousins for the wedding trip today. And DH has a birthday on Thursday -- all I can do is make him something. So I think I will attempt to write and illustrate a sort of poem about a guitar man (him). Maybe I can do it in the shape of a guitar. Yeah. That is exactly what I will do. Journaling for me is usually like thinking "out loud," so it's good for brainstorming.

Journaling can be so many different things for me. So many of my on-paper "journals" are only fit for burning...repositories of negative feelings. This one here was supposed to be about my health, lack of health, and recovery, but it's become all-encompassing. If I can go back to sleep soon, perhaps tomorrow I can do "morning musings!" I'm so off-schedule with the sleep thing now after sleeping for so long, and sleeping so deeply today.

Ah my paragraphing skills...sigh...just look at that last one. I had intended to write about journaling but it went into sleep schedule. And I don't feel like spending time editing tonight. Tonight feels like a "brainstorming" night, so I must silence the voice that is telling me about bad paragraphs and well-crafted sentences. SH! heh.

My intention is to get up with DH at 7am. So after making a couple of morning phone calls I will do a "morning musings" tomorrow while having my coffee. I'll do my marbles exercise with both feet while typing (with my fingers -- hehe). Then, (I need a name for old housemate B) B should call or show up around 10:30ish. I'll use the crutches for that outing. We'll figure out when we'll go to the bookstore this week, and just kind of catch up on personal news and global politics. When I get home this time, I'll work on my creative projects before going to put my feet up, just in case I have a repeat of yesterday.

Some Lists, dedicated to my favorite Listmaker Jmac:
Things that need to be Arranged:
1) work schedule w/B
2) blood testing schedule w/Dr. Mystery
3) swimming schedule w/(oh dear, she's another "M" ... what
shall I name her?)

Things I Must Not Forget:
Thank you notes
Set aside time to work on manuscript
Work with plants, now that DH finally brought me the plant
stand for the back porch...
The guitar-shaped writing (not that I would forget that!)

Okay, that's enough lists for right now. I'm going to head back to bed so that I have a prayer of arising at 7.

Love,
=e

I'm drinking my Sleepytime Extra, so I think I might be able to go back to sleep by 1:30am.
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The New, REvised Plan of Action 07-12-2004 - 09:57 AM
Monday, 12 July, 2004 10:44am
They are going to do the Museums today and then to the airport, so we said our goodbyes this morning here at home. Even though yesterday just about killed me, my foot can still accommodate a shoe! I decided to shower this morning instead, and kept them waiting, expecting that we'd do something again together this morning... but as it turned out, it's much better this way.

Conclusions from this visit:
Semi-normal activity with TED knee-highs does not make me swell up. Using the wheelchair for extended mobility and crutches for limited jaunts, I can get around. Exercises limited to foot rolls, toe points, and standing on the left leg to raise the right leg in the air are sufficient to keep the swelling down, apparently. A rest period in the afternoon with my legs elevated above my heart seems to complete the process of being a non-swollen person who is not in constant pain.

Plan for the week: Begin a routine of swimming to exercise and re-develop the muscles in the right leg. With B back from New Mexico, start going to the store and working for a few hours for at least 3 days. (schedule to be determined after conferring with B) Work into this schedule several hours of keeping feet elevated.

CANCEL physical therapy, which seems to be exacerbating the problems and actually doing more harm than good. REPLACE with swimming, devising my own exercises by modifying those from the PT people. The act and motion of kicking in the water while swimming should be beneficial just in and of itself. Then, standing and using the side of the pool for support if necessary, exercising the right leg to use other muscles.

arano is on her way over. More later.
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"What a Zoo!" hehe 07-11-2004 - 09:00 PM
Sunday, July 11th, 2004. 9:20pm
Well, I had an ambitious itinerary for today, and we only did a small portion of it. We got to the Zoo early, and it got hotter and hotter and hotter -- I was ready to leave & go to the Art Museum long before anyone else was ready to go. I think I was a heartbeat away from heatstroke... We went into the new penguin exhibit which cooled us off immensely (I think they said it was 40 degrees?) but then I was cowering from the sun and we got into what felt like a maze...I thought we'd never get out of that zoo! So we went for lunch next. The Zoo and museums are all in the same park, and I'm so disappointed we didn't get to go to the museums. I was just too tired, hot, achy, and exhausted.

So I decided they had to go to the Jewish deli for lunch. I didn't have to use the restroom at the zoo where I'm sure it was fully wheelchair-accessible ... no ... my body decided to wait till I had to use the crutches to go down ten steps of a narrow flight of stairs... I wondered if I would make it, seriously. I was So hot, despite having cooled off the car with the air-conditioning (it's only about 5 minutes to the deli from the Zoo) and it seems like ever since I had the radiation, when I have to "go" it's a sudden thing. No "holding it." Of course I am on senna, too, which is keeping me from being constipated, but my complaint is that I eat a little food (freshly-made potato chips in this instance) and BANG suddenly anywhere from a minute to an hour afterwards, I urgently need to Go. I miss that old routine so much...I may have mentioned it before... I went Once a day, after a cup of coffee and before my morning shower.

Speaking of showers...I really need one. My company allowed me to beg off tonight, and DH went up to the bar, and I could be in the shower right now. I can't decide. I am still feeling exhausted despite having fallen into bed at 4 when we got back (feet way up over my heart, so it's really still only my ankles that are swollen! Hooray for that!). The sun was part of it. It is definitely the doxycycline that is making me so very sun sensitive. I'm rather fair-skinned. Not the classic redhead floury-white-with-freckles skin, but I never get a very dark tan. Anyway, I didn't get a huge burn, but the spots on my knuckles I mentioned after the botanical gardens trip are still there and keep re-burning despite liberal and repeated applications of strong sunscreen. And my arms are pink and sensitive. Not red and flaming, at least! But I'm getting worried about my hands. I told DH I wanted to get the cotton gloves from the drugstore. So far that has not happened.

None of that was really my point! I'm trying to decide whether sleep early will benefit me more than a shower, or vice versa. My guests will surely be here bright and early again tomorrow (they don't leave until after noon) and it will take me a while to get ready. Dh may be home now. I hear the door.

Yep, that was DH. So if I opt for a shower before bed, I won't be alone. The question is whether I can do it. I was wanting to do the whole shebang -- hairwash is a Must, and I really wanted to use the electric shaver as well. If I wait until morning, it's DH's first day back to work so I'll have water conflict, and likely I'll have the arrival of company coinciding with me still bathing. It sounds so much more practical to do it tonight, but I am dead tired.

Oh and I don't know what to do with them for the few hours we have tomorrow. Sigh. Monday...lots of things close on Mondays...means I'd better go look up hours-of-operation if I'm going to be on the computer.

I will be enjoying that alone time and appreciating it ever so much more this upcoming week, while being sad and going through "withdrawals" missing DH precisely at the same time!

Maybe more later, maybe not until tomorrow. Love, =empresse

(PS: I don't particularly like Zoos.)
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Ten more minutes... 07-11-2004 - 12:23 AM
Yes, I just want to sit here for ten more minutes.

Melissa had that compression bandage WAY too tight yesterday, so that my Toes were puffy from swelling, and the whole foot was still puffy when I unwrapped it. After keeping it up last night and also most of the day today, wearing just the TED hose (and able to get shoes on), and then tonight's outings being me just in the wheelchair at a couple of bars and a restaurant, I got home and even my ankles look pretty good. The only exercises I did today were toe points and foot rolls. I don't get it.

I think I should just see how tomorrow goes, go swimming Monday, and see what the swelling does or doesn't do. I'm wondering if some of these exercises weren't making me swell more!

Okay, ten minutes is up. Just had to add that. =e
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TWO shoes! 07-10-2004 - 11:57 PM
nearly 1am, so it's Sunday now, July 11th.
They didn't get here until around 9:15 after all, so even though I was still groggy, I was ready to go. We went to my bookstore (1/2 hour drive each way) and then I sent them on up the River Road (they'd already gotten a list of things to do) while I put my feet up. By this evening when they returned, I could put shoes on BOTH feet! So I am making a hasty entry and back to bed to put 'em up again. I've just done the minimum of the exercising, which seems to be the key. Not pushing the weight-bearing like the PT people keep trying, combined with keeping the feet UP. I'm just wearing Ted hose and they still look good after an evening out!

Tomorrow's itinerary is packed -- I'm going to try to do it all with them, since I did so well tonight. But I did make a contingency plan -- option to come back over the river after lunch and drop me off & send them to historic sites on the Illinois side for the afternoon.

Lots of love, =e
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Thank you, Sisters! 07-10-2004 - 03:08 AM
4am Saturday, July 10th, 2004
Thank you, Sisters, for all your comments on my last entry! What a surprise to receive so many!

Yes, it's 4am -- I fell into bed around 8 and went down for the night around 10:30 -- the therapist had wound my wrapping Way too tightly and I just barely got through dinner. (I'm drinking a cup of Sleepytime Extra so I can get some more shut-eye before they return at 8am...eek!)

It was the last day with this therapist, and she said she was recommending that I go to a Pain Clinic. GRRR. I told her it was hardly likely, as I'd heard a lot of horror stories, and that I doubted I would take that avenue. I emphasized that my interest is in finding out the cause of the problem, not masking the pain, and that I will be swimming to exercise this leg more. She faxed off all kinds of stuff to my doctor, so we'll see what comes of all of that. DH agrees with me about not wanting to do the pain clinic route.

My company wants to see everything possible in the shortest amount of time. I know I can't keep up with them. They want an itinerary for tomorrow -- only half-joking -- I'm going to take them to the Farmer's Market at 8, then to the coffee shop in town, then out to my bookstore, and then I think I will hand them a list of things to do for the afternoon and have them pick me up at dinnertime so I can spend the evening with them. Being that today all we did was ride around in the car a bit to give them the local tour and then dinner & I was dead, I seriously doubt I can handle the whirlwind they're wanting. Of course I'd done PT which was painful and then was wrapped too tightly, but still, I don't think I can go all over St. Louis all day and out at night too. I'm kind of going to play it by ear, but I'm preparing myself for a strong argument into staying home for a lot of this.

Anyway, I'm glad that in clarifying my own mind, I was able to clear up some of your wonderings and questions. Thanks for the info, Sharon, both now and past! Thanks Tam and Kells and Joyce and Jody and Praire Lake Lady and Missy and Empressnormi and ceedeewho! I was going to be more specific about what I was thanking each of you for, but I think I'd better get back into bed. I love you all! =empresse
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trying to figure out past, present, and future. 07-09-2004 - 07:10 AM
I'm up early early early. I've made coffee, read and commented on Sisters' journals, made a quick entry in my own, and it's Still before 7am! (Friday, the 9th of July, 2004)

Today my company will arrive from NJ. I hope I'm up to entertaining! I've made a list of things to do in our area, so even if I'm not up to trotting all around I can recommend things for them to do and see while I rest, if necessary. I got this idea from my family of cousins who just 'put on' the wedding. They did a whole website with pages on what to pack (and links to the weather) and they made an itinerary of planned activities along with suggested things to do. I didn't make a website, just a list on my EZ Word program...

Obviously last night I didn't need my Sleepytime Extra tea -- I was extra sleepy all by myself! Plus the factor of the double dose of lorazepam. GRRRR I have to be So alert with Every Step of my medication. The doctors can't seem to write the Rxs correctly, and even my nearly-perfect DH has let me down regarding my carefully-scheduled timing on refills to send the mail-order people. Now that I've finally got a "cocktail" that works to keep me out of pain, the key is to have all the "ingredients."

What I was trying to do in a couple of recent journal entries when I got so muddled was to note how I got to where I am -- where I've made progress and where things are at a standstill, and to figure out my course of action for the immediate future.

Let's see if I can at least get the timeline right this morning.

December 15, 2003 -- Hysterectomy (for endometrial cancer)
and was it the end of January or the end of Feb. that I started radiation treatments? Anyway, that was the next thing -- finding out that radiation was the recommended next step because the cancer had gone a little farther than originally thought.

Okay, I see already that I will drive myself nuts trying to place dates on the sequence of events. Now that I've tidied up for company, I'm not going to surround myself with notebooks to hunt down where I've actually noted the dates of these things.

Let's try a more narrative version.

When I was diagnosed with endometrial cancer in the fall of 2003, the regular gynecologist told me I would need a total hysterectomy and that it could not be done laparascopically; had to be abdominal. The gyn/onc told me that she Could use the lap, and that I would not need any further treatments, so I was all excited about having a faster recovery time than initially expected. When I got home from the hospital I was horribly uncomfortable with a hugely swollen vulva and used a lot of ice packs. Then, after the hyst, when she found that the cancer was a bit more invasive than originally thought, she recommended radiation. I had a case of bacterial vaginosis and then of course yeast infection from the antibiotics, and then started the radiation, both internal and external for a total of 6 weeks.

Roughly a month into the radiation treatments, I started getting these terrible pains in what I was calling my "hip" -- an area above my buttocks and kind of in the right side of my right "cheek" so not precisely the hip -- wound up drawing a diagram of where the pain originated and where it traveled. Around the same time, I developed swelling roughly in the area where my right ovary used to be. A Cat Scan revealed a pocket of lymphatic fluid, called a "lymphocele," and the doc said that it was pressing on my sciatic nerve. They inserted a drainage tube. The pain in my hip/leg worsened every time the drainage tube clogged, which was most of the time, and usually they wouldn't believe it was clogged. Every time I went to that department I had a different doc, so I had to explain every single time...and then they would use the ultrasound and dye to take a look, and LO and BEHOLD the tube would be clogged... sometimes they could force the clog out, and a couple of times replaced the whole tube.

Somewhere during this time I started having vaginal discharge again and my gyn/onc didn't want to see me and didn't want to prescribe anything, blaming it on the radiation. I started running a fever, I talked the nurse into 'letting me' use the rest of the vaginal cream from the first bacterial vaginosis (the pharmacist had dispensed double the amount I needed...because she first prescribed a vaginal tablet that didn't exist, and then switched the Rx to a cream) and finally she phoned in antibiotics, but just a day before she finally brought me into her office. I could hardly walk -- was walking with a cane -- and was running a fever. She was going out of town that weekend and wanted to put me in the hospital that day but I begged her to let the antibiotics have a chance to work. I ended up going into the hospital the next day because the fever kept going up.

From here on I get very confused and I will have to refer to those notebooks. I was in and out of the hospital a couple of times, had a very bad experience with a Fellow in the interventional radiology dept (the people who inserted & 'monitored' the drainage tube) -- had the tube completely out, and then put right back in because there was either another lymphocele or the first one had divided itself into two... at some point here is where the leg pain never went away at all and I wound up not even being able to walk with the cane. My gyn/onc was away and then went on sick leave during this time, too. I had a PICC line and IV antibiotics at home after the confusion over my infection and the horrible Fellow.

I'll have to do this more precisely. I can't figure it all out from memory. I'm too confused. What i'm trying to pinpoint is exactly when I stopped being able to put weight on the leg without pain and when the pain became constant instead of intermittent.

Somewhere in here, I was diagnosed with lymphedema and was given an appointment with "the Doppler people" to "rule out" a blood clot. I know I was at home for at least a week with a blood clot before they tested for it, and they put me in the hospital again when they found it.

I do know that it was Dr. Janet, my "family doctor" (there's another term for her in insurance parlance, but I can't think of it) who helped me come up with this combination of drugs to combat the constant pain.

So, where I am now: when I take this combination of drugs and don't do anything to aggravate the leg, I'm not in constant pain.

Physical therapy was initially supposed to be for the lymphedema. The gyn/onc then told me to talk to them about the inability to put weight on the leg (and hence, inability to walk) -- this was after she got back from sick leave.

I feel that the PT was successful in getting the swelling down and teaching me to manage it using compression bandages and exercise.

I feel that the PT is totally unsuccessful in treating whatever is wrong with me causing pain -- the therapist has said that she is "trying" to get me walking by exercises to stretch and strengthen different areas of muscle and tendon. No one has attempted to determine the Cause. And now the PT therapist is leaving and I'm getting a new person next week.

I don't want to leave there until I get a compression garment. Although this morning I am beginning to question whether I have lymphedema and not just plain edema: I am going to ask how they know the difference. Or is this more of a guessing game.

The more I think about this, the more I feel that the gyn/onc was really "finished" with me after the hyst. She did her job and it was a good job -- I healed well from the surgery. She "fell off the boat" when it came to infections.

It's so hard to sort this all out when there are so many different factors and I keep forgetting this thing or that.

Anyway, today, my questions are:
--Why can't I walk?
--Do I really have lymphedema?
--If I had unlimited money, would seeing a neurologist be the next step in finding out the cause of the pain?
--Since I don't have much insurance money left for this year, is it wise to keep going to this PT place?
(--Since I now have access to a pool and can swim regularly to exercise the leg...for free...and I have a whole arsenal of exercises at my disposal to do at home ...they're not using any of their equipment (besides parallel bars) at the rehab place)
--What should I do next?
-- ideas: alternative therapy such as homeopathic, perhaps
acupressure or acupuncture
consult w/Dr. Janet to see what she thinks

A few entries ago, I was 'convinced' in my mind that I could walk if I just would. The experience at the airport when the security guy pulled away when he was supposedly going to have me put my weight on him -- and I'm still not sure what actually happened, but the result was terrible pain -- showed me that no, it's not just a matter of "putting my mind to it..." -- I really can not just start walking.

My conclusion so far is this:
Something is wrong somewhere in the area of my hip.
Whatever it is does not show up on a CT scan.
So far, no one seems to care about finding out what is wrong.

How do I get someone to care and really work on finding out what's wrong, especially now that we're about out of $$??

Do I have to know what's wrong in order to walk? Is it worth having the PT people "experiment" with different things?

Do I have to just live with the pain and learn to endure it, walk despite the pain, and keep taking huge amounts of pain medicines? This last bit just doesn't seem right.

And again I'm back to where I started. Confused and upset. DH tends to be rather unsympathetic regarding the pain -- he admitted as much, so it's not just in my imagination. Given that, he's been a really good sport. but, knowing that now...makes it harder to deal with.

sigh. Well, anyway, that's a more coherent (if not entirely clear) "picture" of where I am and how I got here.

I suppose if the Social Security people approve my temporary disability, that some of that money could be used to pay doctors to find out what's wrong. We are already in debt to the hospital for a lot of our portion of the bills, even with insurance having paid so much. So really that money ought to be used to pay down that debt. I don't know the answer to this either.

The good news -- DH saw my old housemate at the bar last night, which means I can start going to the store and doing some work. That's a

I need to be focused on the good news and to be in good spirits for our company this weekend. I can do this. I think it has helped to get a sort of chronology down in the journal here. I hope it's not just horrible to read -- I wrote it more for myself than as a communication.

Have a great weekend! Love, =empresse

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For My Sleepless Sisters 07-09-2004 - 05:13 AM
Seems like every journal I click lately, a Sister is having a hard time sleeping. I've made comments in people's journals and I mentioned this in a previous entry, but this entry is Devoted to the tea I've been recommending.

It's called "Sleepytime Extra," by Celestial Seasonings. You don't have to go to the health food store to get it -- DH picked up my last box at the supermarket. (Not the shi-shi supermarket, either -- the Discount supermarket.) The old formula tasted lovely. The taste hasn't changed, and they've added Valerian, which is a sleep-inducing herb. Warning: for those who are allergic to daisies -- it also has chamomile. You can add milk to it! It won't curdle! So then you get the added bonus of warm milk as a soporific. I recommend it highly.

You can buy Valerian by itself in the health food store, too, (note -- this is not medical advice, just passing along some herblore) but this is such a nice "delivery system." Not only is it tasty, but also the little ritual of preparing and drinking it before tucking into bed is a mental 'trick' to induce sleep. "They" (those faceless experts) say that it helps to have a bedtime ritual so that you're not race-race-racing around and then suddenly expect your mind to shut down for you.

Sweet Dreams, Sisters!
Love, =empresse
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sleepy 07-08-2004 - 10:31 PM
Still Thursday. Six more pills to swallow before I can head back to bed. Already caught myself nodding off. Realized -- the gyn/onc wrote for the wrong strength of Lorazepam...too much makes me sleepy. Luckily the tablets are scored. I knew this when I received the bottle (didn't look at the Rx itself when it came in the mail, and I should know better by now...) but with all the excitement of the trip and company coming, I'd forgotten. Last night was the first I'd conked out so completely, and I ascribe that to the tea, and previously was just thinking I was tired from all the activity surrounding the wedding. Four Warfarin -- oh dear, and I haven't been to the lab to have my blood drawn this week -- one Doxycycline, and one Senna and then I can get into Bed. No Remeron tonight, as I don't know what the turnaround time will be (have to get those mail-order, and DH only mailed them off the Rx Today...sigh...I gave it to him 2 days ago to mail...) Anyway. I won't be needing my tea tonight.

(not complaining, just recording the following
My arms ache and my "hip" or whatever you call this initial area of pain hurts badly. I have a few muscle aches, the "good pain" of using muscles. But I feel another kind of achy down my right leg, and my hands are hot -- I almost feel ill. Last time I felt this way, I took my temp and it was normal. Might have been hormonal. I should take my temp anyway. 98.1 -- in my normal range. Hm. Gulp. Gulp. Down the hatch. All done. Violent twitch -- I'd gone off to sleep again wondering what to say next. That does it -- cannot think straight.
love, =e
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ball of confusion 07-08-2004 - 01:38 PM
Thursday, July 8th, 2004
I slept like a log or a rock ... I don't think of either of those two things as "asleep," so I'll need to come up with a better expression. Later. The point is, I slept. And where did I sleep? Sitting right here in front of the computer!!! Even after DH came home from open mic and brought me ice cream... I sat here and ate it and swore I'd be in bed right after...Sisters, it was light outside when I got into bed. That has to be awful for my body, and as most of you know, it's not the first time. Seems that when sleep "takes" me, it's an instantaneous journey. So I am sitting here with my feet on the tray of marbles, feeling a bit of guilt because DH is vacuuming. I have been puttering around, tidying a bit here and there, with lots more to do. I'll surely feel more like doing it after DH brings me my Vioxx... meanwhile I am doing what I can to limber up.

I really don't know which thing of yesterday's physical therapy 'experiment session' was the "bad" one. My short-term memory is bad enough that I can't go through in my mind "step by step" what we (I) did. I still wonder why I am so compliant...she says "jump" and I say, "how high?" Well, not literally..."we" don't have me jumping just yet. Friday is my last day with this one. Then I get a different person. Perhaps with her I will be more bold to say, "NO, I won't 'try this.' " I'm just so afraid of being viewed as "non-compliant."

I know I have muscles that need strengthening and tendons that need loosening. I'm just saying that I also know my body and I know which pain is not the "good pain." One of our Sisters is going to consult with me about physical therapy experiences and I think this will help me be more assertive. Once I get my compression garment, I may stop going to this clinic -- it costs money every time for them to 'experiment' on me, and unless this new one starts giving me the lymphedema massage, I am seriously contemplating just keeping on with the exercises that I know are helping me, here at home, and saving that insurance money for unknown things. If I felt confident that they knew that what they were doing was going to get me walking, I would not be saying this. And it takes a while for me to 'percolate' this into my thinking. You know, making sure that I'm not just being a big baby because it hurts...

Ahhhh Vioxx. Should feel some relief in about 1/2 hour. It's an interrelated pain management, this combination of Oxycontin, Lorazepam, Duragesic Patch, and Vioxx. Take one away and the baseline pain jumps up. I almost had it so that the baseline was zero as long as I didn't do things to make the nerve 'act up,' but now things keep getting in the way of that -- either being out of one of the medicines or else doing something at the physical therapy place that winds up putting me back into misery. I've said this before and I'll probably say it again and again -- finding out the cause of the nerve pain ought to be of prime importance!!! I was so mad when the gyn/onc just kind of threw her hands up in the air (figuratively) and said, "Nothing shows up on the CT Scan...talk to the physical therapist." She did an excellent job with the hyst. Her specialty is not people who can't walk. I realize that. In a way, I unrealistically expected her to care about the cause of the pain and to work with me on it. Now that Dr. Janet is working with me on the pain itself, I need to stop expecting anything from the gyn/onc and instead focus on getting another face-to-face with Dr. Janet to move onward. I think I have given physical therapy a fair trial, and they have certainly helped me manage the lymphedema. The swelling, while unpredictable, goes down when I put on the compression bandages (which I'm going to do again now) and so I need to stop expecting them to get me walking when it is so obvious that they are just shooting in the dark. I've said all of this before and it's easy to say but hard to change my thinking.

Ultimate goal: to walk without pain.
Intermediate goal: to walk, period.

The lymphedema was "on fire," so "we" jumped to "put it out." I feel confident that it is now under control and manageable. I have learned to put my compression bandages on, and I will learn from experience what causes me to swell.

But the first problem was the walking. And it started in February, when they found the lymphocele and I went through all that h*** with the drainage tube and then the infection. At that point, the lymphocele was the thing that was "on fire," and I was told that the cause of the pain in the nerve was that the lymphocele was pressing on it.

Now there is no lymphocele pressing on it. So I'm back to "square one:" what is causing the pain? I first expected the gyn/onc to answer that or to get me started on another avenue to discover the cause.

oh I can't keep this all straight -- I forgot about the bloodclot, I forgot about the gyn/onc ignoring the obvious signs of infection, too. I'm not going to erase everything I'm just going to leave this entry here and try later to put everything into chronological order and perspective, try later to stop spinning in circles. Sorry. AAUGH!
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O Blessed Sleep 07-07-2004 - 10:32 PM
Oh the blessed relief of Sleep -- and now that I've had dinner, I've been catching up on journals in a more awake state...and just recommended Celestial Seasonings Sleepytime Tea for Jmac...had to test its new formula (they've added Valerian) for ability to stand added milk without curdling (it won't curdle) and now I suspect I will be asleep again for the night before much more time passes. DH has gone off to play Open Mic. I just don't feel up to going along. You never know when your turn might be...could be late-late...and I'm just not up to sitting in the bar for an indefinite amount of time tonight. I'm still so very achy. So I will stay home and stretch intermittently and spend some time with my Sisters here.

Part of my problem is that I'm totally out of Vioxx. I gave DH the bottle to refill but he hasn't gotten to it yet..."didn't realize you were completely out," he said. I hope he mailed the Remeron -- I'm taking one every other night again because I'm so low on them. I can already see the effect on my appetite -- didn't want seconds at dinner. But I'm at a good weight now, so I don't feel worried by that.

LizMom (biz partner's mom) emailed me with a homeopathic recommendation. I'm not sure that particular one is the right thing -- it works on "nerves" but it appears that they mean "nervous condition." I'm doing some research on homeopathics. My company this weekend is the pharmacist for whom I used to work (and his daughter and her fiance) -- I suspect he will pooh-pooh the homeopathics idea. But I don't think the insurance will bear a visit to a neurologist with the accompanying inevitable round of Expensive Tests...we're getting to the bottom of the barrel for this year's "allowance." The poorer we get, the more open-minded I become. I saw a joke on the Internet somewhere (should've saved it):
Poor man's insurance plan = bottle of echinacea.
It was much funnier the way it was originally written...

But I don't want to talk about poverty, drugs, insurance plans, and pain any more tonight! Except to say that we are not in desperate poverty and a lot have things much worse than we do. When we have two incomes, I think we are somewhere in the "middle class" category. We have a beautiful house in a lovely, quiet neighborhood. Our budget is tight but we still eat well. I may have mentioned this before, but DH has learned to shop for the staples and condiments at the discount grocery and does daily shopping for fresh food at the independently-owned combination grocery and garden supply store. I'd like to eat even more locally-grown and organic foods (hence I'm pushing the local Saturday Farmer's Market) and would greatly prefer to be eating free-range antibiotic-free meats, but it's absolutely wonderful Not to have a steady diet of frozen or easy-to-fix boxed foods with all the preservatives! DH is so afraid I'll spill boiling water or hot oil all over myself that he is stubbornly resisting any cooking on my part. For him, cooking has gone from a "chore" to a source of great pride! He almost never overcooks the vegetables, and he's learning what herbs taste good with which foods. So I am not going to dig my heels in and Insist. He is a true Peach. My male cousins in town are both great cooks, too; also one of our sons-in-law -- and I think they have been somewhat influential in this change, just by example. I could be wrong about that.

Almost to the end of my teacup, and I can feel the drowsies setting in. Just typed a string of "k"s -- a sure sign of falling asleep at the computer! Sometimes I do "l"s instead -- it comes of sitting with my hands on the keyboard, and since my right arm is unsupported by any chair arm, I guess I lean more heavily on my right hand (hence the letters that get pressure). I have been making more typos than usual lately, but normally I type almost as fast as I think, with long pauses in between for reflection. It's the pause-and-reflect process that sends me to sleep sitting at my computer. AH! A pause for stretching has given a lovely result -- a resounding *crack* while stretching my neck! And yes, I was dozing off when it happened.

A note regarding an earlier entry, about thinking I could walk if I just put my mind to it... the incident with the guard at the gate, while painful and embarrassing and a betrayal of trust, showed me that I am not quite ready to go wandering around anywhere! So I can take that bit of self-criticism and shove it right out of my self-critical mind! I find it all too easy to criticize myself and yet I 'cut' others all kinds of 'slack.'

Swimming! And a new exercise to be done in the bath! oops -- just had to delete a whole string of 'k's and 'l's while pondering such watery luxuries! I think it's time for me to say
So long
Farewell
Auf widersehn
Goodnight!
For now my mind has wandered off to winter sports, wishing we had money for skiing (it's the Sound of Music song that got me there). Jolt back into reality, delete the 'k's, and go get in bed! To dream of skis and skates, of swimming and Baths, or Mountains, Lakes, and Pools. Sweet dreams, Sisters dear! Especially Jmac tonight -- sleep deeply with great peace!

Lots of love, =empresse
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Grueling physical therapy session... 07-07-2004 - 04:19 PM
5pm, 7 July, 2004 (Wednesday)
Physical therapy this morning. I don't know what "we" (I) did today that made me ache so, but I'd like to never do it again. Not that nice well-exercised 'burn' .... no, not at all like that. "Ache" is the wrong word, really. There's a throbbing sensation and a burning sensation along with what you would call "aching." But my legs look nearly normal! The therapist was very proud of my diligence in wrapping and exercising. I think we overdid it because everything looked so good. I swear I'm her 'guinea pig.' She asks me where things hurt after this or that new exercise and is almost always surprised by my answers. This does not instill confidence, and yet I continue to comply, to do as she says. WHY?

Tried lying down for a nap, but I'd neglected breakfast (arano came by for coffee and we talked until it was time to leave) so I had a bowl of cereal around 2-ish. DH found me asleep at the computer a few minutes ago! I was catching up on journals. Well, I thought that was what I was doing! Now I'm all kinds of confused about what has happened with whom and what was a dream and so on. heh.

DH has been busy this afternoon, so he's down for a nap. We had this mysterious spot of wetness that would appear in front of the dryer in the basement -- yep, the dryer ... right where if you're going to drop a sock, that's where it'll land... well, the other night, DH came upstairs triumphant, announcing that he'd solved the mystery. Something underneath the kitchen sink was leaking! Apparently for quite a long time... ugh. The leak is fixed, and we'll have to deal with the water damage at some point relatively soon. At least it cost less than $2.00 to fix the problem! He is quite pleased with himself.

I think I'm going to join him for a proper nap in bed. Just took more breakthrough meds...ACK and I'm almost out...
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"What I Did On My Summer Vacation" hehe 07-06-2004 - 11:07 PM
Tuesday, 6 July, 2004 10PM
Dear Sisters, (Thank you for wishing me a good trip Clementine, Moonchime, Jmac, Laura [hunny] and for welcoming me home ceedeewho, Missy, Rosanne, Prairie Lake Lady, and Laura [hunny] and Moonchime ! )

I thought I'd be making a long, leisurely, descriptive morning entry, but last night being all wound up and staying up late meant that I did not see morning at all. It was nearly 3pm when I dragged myself out of bed. I stretched and did toe-pointing and foot-rolling exercises but did not do any of the standing routine since I needed a shower. Getting into and out of the tub uses all those muscles without needing a round of exercises to work them. This is the first time in ages that I have managed a shower without tears! All that sleeping with my feet up took the swelling way down, and even the shower didn't make them back into sausages!

The effect of exercise and activity on the swelling seems to be completely random. Some days after I've been very active I swell up enormously, while other times it has the reverse effect. The flying did exacerbate the swelling as I had been warned, but I wrapped all the way up my thigh and did it correctly for both plane trips! One thigh-wrapping during the vacation was a disaster -- had it too tight somewhere and my toes were going numb, so I undid it. It seemed that it was hitting me funny somehow while sitting (which is mostly what I do).

Swimming is definitely going to help me! The motel had an outdoor pool, and we had enough 'down time' to use it twice. I can support my waterborne weight with the right leg with no ill effects during or afterwards! And the muscle action of swimming was wonderful. The pressure of the water against my skin while kicking my legs was a bit painful, but that will pass as I get used to it. I have started applying a little more pressure when I put moisturizer on my feet and legs, too, to get those nerve endings used to touch again. What a strange feeling it is, to have cool, smooth water give me a painful sensation. The air was warm and the water was cool -- a little too cool for me to stay in long without chattering teeth. I did a few laps using a sort of modified dog paddle and some backstroke. Probably could have done the Australian Crawl with the flutter kick, but not the "frog kick" of the breast stroke yet. I stood in place and just moved my leg around in circles for a little while, and also treaded water a bit. Expect me to record many more swimming sessions in the days ahead! I can tell that it is therapeutic and it mostly feels great. It's a bit rough getting into and out of the pool, but I managed on one leg.

I should have started this entry with the beginning of the trip and gone chronologically. Oh well. I don't feel like editing tonight. My arms are very sore (muscles) and it hurts to type.

Traveling in a wheelchair is quite an experience! If we had gone all major airline hops, I wouldn't have much of a story to tell. Delta is very organized. They had a regular wheelchair to get me to the gate, and the security folks at the big airport (Lambert in St. Louis) took it as a matter of course to wheel me to one side and have a female officer pat me down since I couldn't walk through the sensor archway. (Do they x-ray you or what? Just metal detection?) Then, to get me onto the plane itself, they strapped me into a narrow chair with wheels, took me up in a sort of lift, and fit me between the aisles to get me to my seat.

The connecting flight to State College was another kettle of fish entirely. Going there, the little man at the gate looked at DH as though he had sprung another head when he said I couldn't walk up the steps into the plane. It was a tiny little plane -- a D328Jet. DH ended up carrying me up into the plane, and back down out of it when we landed. But someone was there to meet me with a wheelchair, and my cousin had the rental wheelchair with her in the airport shuttle van.

(editorial note -- do I keep talking about the flight logistics now, or save the return trip for its chronological place in the narrative? Decisions decisions -- tell it all now, and rewrite later if it seems necessary.)

Departing from that tiny airport at State College was 'a real trip.' Confusion reigned. They had one baggage examination station open, but it was marked with another airline's logo. Had to check in at the Delta Connections desk to find out what to do. Turns out they only had that one open and were then shuttling the bags afterwards to the correct flights. They told us to wait for someone in the general lobby then, to figure out how to get me on the plane. We hadn't been through the security checkpoint yet -- went over to ask if we should do that and the man at the checkpoint said our flight was delayed so it didn't matter. Well, they called our flight for boarding not two minutes later! We had a young, burly uniformed officer on the other side of the thing you walk through (metal detector or whatever it is) who didn't believe I couldn't walk. So I, being cooperative, said, "I can put weight on my left leg...maybe I can do it if you help me." Well, I leaned all my weight holding his arm and he had just stepped backwards so I had nothing holding me. I don't know what happened, exactly, because I was in tears. Not sure if I was on the floor or what on earth... incredible unreal shot of pure pain and no burly security dude, that's all I know. Somehow, the next thing I remember, a female officer was patting me down and then another blank spot in memory, and then sitting in the wheelchair in the passenger waiting room with hot tears squirting out of my eyes. I wasn't really crying -- no sobbing involved -- just my eyes. I took a lot of deep breaths and as it turned out, I sort of walk-helped DH get me up the stairs into the plane. I took the max dose of breakthrough meds, and again in 2 hours (minimum time-spacing) so my recollection of the hop to Cincinnati is quite hazy. I think DH had to carry me off the plane again. I do know that a nice young man brought a wheelchair and accompanied us to the terminal from where our Delta flight to Lambert would be. We had a long layover, so we had a smoke and DH bought me an "ice cream." It was a bland frozen yogurt and I was so excited about the "sugar cone"...nope, that was a bland crunchy unsweetened conical thing from which I should have eaten the unremarkable cold concoction with a spoon. Actually I should have just said, "no thank you" to the ice cream offer, but buying me ice cream is one of those things DH does in a loving spirit to make me feel better. Our Delta connection this time was slightly unprepared but eventually they got people to transfer me onto the skinny wheelchair and maneuvered me onto the plane so DH didn't have to carry me again! And then we sat. And we sat. I hadn't wanted to mess with the huge wheelchair and the bathroom in the airport, so I figured our plane was on time and only an hour in the air...I could wait. HA! We sat on the runway for I think a couple of hours awaiting clearance to fly into St. Louis because of bad storms there. We were met by a Huge wheelchair there -- both of us could have fit comfortably into the thing -- so I'd 'held it' for so long I decided just to wait until we got home. (I made it.) arano and A. were waiting patiently with big smiles greeting us -- A. is only 7, and he was Absolutely Wonderful, waiting for us for at least 2 extra hours. It was after midnight when we actually rolled into our driveway, I think.

hmmm this pain in my arms and hands is probably from holding myself up, trying not to put weight on my right leg in my attempts to help DH help me.

This will require several drafts to get it funnier and to put it into a chronological account of the trip. I didn't talk about the school bus steps, either, but that will fit into the chronological bit easily.

So this whole event was my cousin's daughter's wedding. I have been told that she is my second cousin, and also that she is my first cousin once removed. This is my mother's side of the family. I stayed with my aunt and uncle on the outskirts of Pittsburgh for several months while my mother was sick in the hospital getting a colostomy for colon cancer, back in the 1960s. My cousins are older, so they were both grown and out of the house when I was with their parents. I fall into a sort of 'middle generation' there, right between parents and kids in age. My cousin P had no children; J & D have two. K, the one who got married, is a tall, willowy, athletic nature-lover who was a Park Ranger the last I knew. I didn't have enough time with her during the whirl of festivities to determine whether she is still Ranging, but I do know that her new husband is a teacher.

It was such an honor to be there -- J & D spared no expense in making sure we would be able to be at the wedding. I will also be working on writing a thank you that hits the right note of gratitude without overdoing it. I think that'll take several drafts. None of my usual sitting down and dashing something off.

This branch of the family is incredibly well-organized, down to the tiniest detail. I wasn't able to participate in any of the group activities such as hiking and touring these really cool caves (J called ahead to find out whether they were handicapped accessible and got "Huh?" as an answer...apparently it requires walking down a long staircase to get into boats for the cave tour) so DH and I went swimming instead, and then for a drive into State College with cousin P which ended in delicious ice cream at "The Creamery."

We managed to get me on and off the bus to the wedding and reception. Being outdoorsy types, of course K and P had their wedding in a beautiful valley out in the middle of nowhere. The site had also a large 'log cabin' reception hall, so we got the best of both worlds. Buffet-style dinner with excellent food on real plates, eaten with real silverware, on cloth tablecloths. K's brother, my first-cousin-once-removed "G," made a slide show of family pictures of bride and groom. Guests who flew in from Germany sang a German toast in lovely harmony with a tenor descant -- these cousins sing a variation of it as a family tradition, too, so we did it both ways. The wine flowed freely. I had a glass, but it seemed to make my sunburned arms and hands tingle uncomfortably so I stopped at one (plus sips of champagne). The Germans also prepared a funny skit to show how they are connected to our family -- a friendship formed in the early 1900s between their grandfather and mine. K & P had rehearsed their First Dance, so we got a real treat watching Formal Ballroom Dancing. Just as with my stepdaughter's wedding, it killed me not to dance. DH didn't dance with me this time around -- he and some newfound drinking buddies were having a grand time outdoors with a bottle of Captain Morgan's Rum one of the guys had 'liberated' from the bartending area. But I had a nice time talking with other guests, and was glad he'd found some cameraderie. It did turn into a wee bit of a 'thing' when I couldn't find him for the first bus back -- Cousin P wound up having the DJ "page" him, and he was a bit miffed about that, but I had no idea it would wind up being such a big deal. We went back to the hotel on the second (last) bus and off to the "Hospitality Room" where cousin P gave me a lovely old photograph of our grandmother in an oval frame, along with a book she'd been meaning to send (East of Eden) and a booklover's sleepshirt. DH doesn't quite remember that part of the festivities... he doesn't normally swig rum out of a bottle. (I should have been making "Yo ** **" jokes all this time, but since the paging incident upset him I thought it would be kinder to leave well enough alone.)

The day of the Fourth I could hardly move -- getting onto and off the schoolbus really did me in -- so 3:00 was the perfect time for the well-planned picnic put on by K and P in a nearby public park. We had spent the overcast morning/early afternoon watching shows about the Statue of Liberty and Ellis Island on the Travel Channel while I did my exercises and got limbered up enough to function. (We thought the weather was preventing us from a swim, but it actually didn't rain until later and it was warm enough...but really, just the picnic was enough.) They hired a bluegrass band and had cold beer in a keg along with hamburgers, hotdogs, and even veggie burgers -- plus delicious fresh fruit salad, potato salad, and other side dishes. The weather was blustery with occasional squalls but everything was under pavilions (hm I don't think that's the word I mean) so we stayed dry. The children went fishing in the pond which was right next to the picnic area, and there was volleyball and croquet and giant bubble wands. Even the cleanup was like a well-oiled machine -- we didn't leave a trace!

The fireworks at State College are rated among the top in the whole US! They hold them rain or shine, and it was rain rain rain. Cousin (First Cousin Once Removed) G gave us a key to his room because it was on the right side of the motel...but our view was blocked by trees. We went out to the swimming pool area & sat at their umbrella tables, but the most we could see was the sky glowing in blues, reds, and greens with the occasional upward spark of a firework shot high. At least we got to hear them for a bit, and met some cute kids not connected with our event. We gave up on it and went inside before the real downpour began. Naturally my cousins came prepared with heavy-duty rain gear, so they walked up the hill for a good view of the show. We just couldn't manage it with the wheelchair and would have been too wet and muddy to enjoy it properly if we had gotten up the hill. I think DH was disappointed about missing the fireworks, and I felt honored that he stayed with me.

Our plane didn't leave until early evening on the 5th of July, and the hotel staff kindly let us use the room 'way past checkout time, so we got our swim in. DH got sunburned. I cowered under the shade of the table umbrella because I still had (still have!) a patch on my hand that's red and angry. I didn't realize how red he was getting! I only went for a quick dip because the water was cold but I thoroughly enjoyed every moment of it.

(It's this kind of description that I meant to do for my stepdaughter's wedding. I can always write more. I can always edit. Talking to my 'inner critic' here. Worrying about having focused too much on what I 'couldn't' do... so now I say to myself, "Shut up and Write.&quot

Sure, there were things I couldn't do, but the grandest thing is that I was able to travel, period! DH is truly "My Hero." I couldn't have done it without him. Oh, I imagine I could have managed... I'm pretty resourceful, independent, all those good things, but really he was instrumental in my ability to go and to have a good time. I was so pleased that this part of my family got to meet him! Since we had that whirlwind wedding, the time when he would 'normally' have met all of them was just postponed and not a missed opportunity.

Cousin J's wife's sister is doing really, really well. She's on a break from the chemotherapy and she held up very well throughout the entire weekend. I think she's actually doing better than I am! (I say that not to criticize myself, just to point out how well she is doing.) I completely forgot to ask if I could share her website. I complimented her kids for making it. I'll drop her a note when she gets back from the beach house, at the same time I send J&D their thank you letter.

DH is snoring happily away. I think I'm about ready to stop writing and join him. Physical therapy tomorrow, and getting the house ready for our company....I need more rest. Lots of Love, =empresse
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Home again home again Jiggety jig 07-06-2004 - 12:09 AM
1:15am, Tuesday, July 6th
Home again! I will tell you the highlights of the trip after I've settled in and had some sleep. Just didn't want you to worry with the bad weather. We sat at the Cincinnati airport for quite a while awaiting clearance to fly into St. Louis, and Obviously the storms allowed us in at last. Love, your Intrepid Traveler =empresse
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a hasty note 07-01-2004 - 07:13 PM
Thursday oops july 1st forgot to flip the calendar!

Just a quick note while DH is doing last-minute errands -- I still need to wrap the present and get myself cleaned up so I can put the remaining "shower stuff" in the suitcase.

I couldn't find any napkin rings I really liked at Target (there were only 2 left of the pretty rosewood (?) (some kind of wood, anyway) ones, and the metal ones I thought I liked had one in the bin that just looked horribly shopworn & I thought, "Is that what they'll look like when they get old? UGH!&quot but I got cloth placemats instead - all in a neutral sort of beige/ecru color so they'll go with anything and everything. Of course that color will show every spot... but I thought it was too risky to pick out a color.

I went upstairs -- using my tushie and my left foot, bump bumpity bump up the stairs and down again -- arano was here and her son ferried things down for me. Now I have some different outfits -- been wearing the same few over and over for a couple of months now, ever since we moved our bedroom downstairs...never did get around to moving all the clothes down with me. Picked up some oddments I'd been missing along the way, but I need to do this again when we get back. The a/c really doesn't get it very cool up there (DH changed the vents to keep it cool down here) and I was in a hurry, needing to pack. I found some things I'd nearly forgotten so I will look fresh and 'new' to DH.

But O my feet are swollen. Phone call from B in NYC...more in a bit. ...

OH dear it is after 8PM, DH is not home yet, I didn't eat lunch and I still have SO much to do... must dash now!

"See" you on Tuesday. Love, =empresse
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The Slaying of Monsters Soothes the Savage Beast Within 07-01-2004 - 12:10 AM
Wednesday, 30 June, 2004. I cheated. I peeked at yesterday.

Sharon, Moonchime, Tam, TxRiss, Jael, Floppsy --
Thank you, Sisters, for all your love and support and prayers and hugs in your comments on my journal entries for yesterday!
It was a bad day...

Today -- tonight, actually -- is much better than yesterday was. Finally, at long last, I have my breakthrough medicine again. I feel like a whole different person! I don't feel like I'm on the verge of tears, for a change. I feel like I can actually handle packing tomorrow for our weekend!

Last evening after my last entry (I just slammed in, typed furiously, and left the internet) I put in my old Diablo disc and killed some monsters. (I think my Diablo 2 disc is in my computer, which still isn't hooked up [I've been using DH's] -- good thing, or I would only have been playing D2 and never would've found hystersisters to begin with LOL!) That's what we call it... "What'cha doin' honey?" DH will ask. "Oh, killing monsters!" I reply. I hope I am not shocking anyone's preconceived notion of me. Yeah, it's violence...

Well, this morning after Dr. Janet's nurse called me back and DH called to get directions for his driver at work to pick up the Rxs for me, I killed a few monsters, did exercises, had breakfast, checked the news, killed a few more monsters, ate a few Triscuits with cream cheese, did exercises, and fell into a deep, deep sleep until DH came home around 6-ish.

I unwrapped my leg a few minutes ago because it was so uncomfortable -- my foot is swollen. I had that long nap, but I guess I've been sitting too much without keeping it elevated even though I've had the compression bandages on. The whole leg is just Bothering me in general, but at least that horrible nerve pain is calming down now. Looking forward to the motel swimming pool (outdoor). I'm hoping for nice weather! The wedding will be outdoors, too.

Tomorrow I'll be packing and will go get a wedding present, too. They're registered at Bed Bath & Beyond and arano wasn't exactly excited about going there -- luckily, I checked their website -- they updated their registry to include Lowes (which just moved into town here) and with the suggestions they added, I think I can find something nice and affordable closer to home. They were sufficiently vague about their Lowes suggestions, not having formally registered there, that I think I can go to Target instead, and still get them something they will really like. One of the things they suggested was cloth table napkins -- and they didn't specify a particular brand or color scheme or print. (I know my way around Target, and they have really nice cloth table napkins, and they used to have some really cool napkin rings also.) Wish I had a bigger budget.

I feel so much better now that the second dose of the breakthrough medicine has kicked in! Finally! I hope it will also make me feel like sleeping some more...that was a Long afternoon "nap!"

Lots of love,
=empresse

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You're not gonna believe it. 06-29-2004 - 05:04 PM
I've forgotten how to make the big red cry face again and I don't feel like looking it up...

Okay, I went all the way to the doctor's office, a half-hour drive, and looked at the Rxs and everything looked okay except that she forgot to put the DEA# which luckily I had from last time she did that...haven't had to refill the Remeron & it has the DEA# on it, so I just wrote it on ... well ... DH just came back from the pharmacy -- The DATE says "6-14-04" on EACH ONE. It's "against the law" for him to fill the patch because the date is supposed to be within 3 days. WHY ARE THESE DATED 6-14?????

ALSO, the patch says "1 box" and she is supposed to write "5 patches" (quantity of Patches, not "box" grrr I think that is just stupid nitpicky stuff) so he "couldn't have filled it written like that anyway" -- AND I can't get the BREAKTHROUGH oxycodone EITHER because of the wrong date ... but somehow the oxycontin rx was okay... GRRRRRRRRRR

I can't even tell you how upset and mad I am. At least I'll have what I need the most, for tonight, but that means I'm STILL out of the oxycodone...good thing I didn't try putting weight on my leg thinking I'd have medicine to cover me. WASTED my time and my friend's time AND my friend's gas. .. and most of all -- I don't have my breakthrough medicine STILL.

I'm going to bang my head against the wall because it will feel so good when I stop...
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Confused and pathetic. Yeah. That just about says it. 06-29-2004 - 12:35 PM
Of course I got the voice mail. And I couldn't remember my phone number. :hair: So instead of sounding assertive, requesting feedback from the bloodwork, I just sound confused and pathetic, I'm sure.

I'm already in enough pain that it doesn't matter whether I sit, stand, or lie down -- nothing is comfortable, nothing relieves the pain...the difference of 20mg less medication combined with having put some weight on my leg yesterday. I just can't bring myself to put more weight on it. I feel like I'm "copping out." I thought maybe I'd just put my full weight on it for the count of five like I did a couple of weeks ago instead, and I can't even do that. I'm just going to go do my other exercises and quit torturing myself with this. It's bad enough without me not even being on "my side" any more... when we get back from PA I'm going to talk to Dr. Janet about it. I think it's past time someone ought to get to the cause of the pain and not just say, "nothing shows up on the Cat scan." expletive deleted that noise. (You can tell I'm in a really rotten mood when I start with the "expletive deleted" stuff...)

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The Little Mermaid 06-29-2004 - 11:23 AM
Tuesday -- it's daylight, so I can see my calendar -- it's June 29th! And I know the year is still 2004. I wish it were all a bad dream...

My foot is in good shape this late-morning, and I will wrap it again myself before lunch. It's up on the foam pillow for now, while I tapataptap type.

Yesterday, using the parallel bars at the rehab center, I put a tiny bit of weight on my right leg "walking" back and forth twice. The therapist was sooo proud. And the therapist has now, by encouraging this, respawned the original pain with a vengeance. No attempts to find the reason for this pain. I have been doing as she says like a good, "compliant" patient... Maybe the answer here is just to keep doing this and take more and more pain medication -- sure, I "can" walk, so bleep how it feels to do so. ??? This seems to be the approach here, anyway. And as I mentioned last night, I'm on a lesser dose this morning, so I'm getting the old double-whammy. More pain, less medicine.

The story of the little mermaid...she gives up her tail for legs, but every step she takes is as though knives were slicing through her. Oh, actually I just read the Hans Christian Andersen text: "Every step she took was as the witch had said it would be, she felt as if treading upon the points of needles or sharp knives..." -- this is not quite the same. My feet are fine, although swollen...the knife-pain stabs downward from the hip. Well, the little mermaid endures the pain without a whimper -- of course without a word, as her tongue has been cut out by the witch...

So if I just do as I'm told. O I know I can achieve the Therapist's Victory. I can do this. I can walk. They -- the Big Bureaucratic "They" -- can praise me and call me a success...but nothing will have been truly accomplished. And if I *can* walk, then I shall be pronounced *cured* and (expletive deleted) the pain of it: I will simply be chastised as 'addicted to the medication.' But my husband will be so proud.

This is poetic prediction, dramatic voicing of my fears, and, as I always have, turning to fairy tales to define a phase of my life.

If I could only show proof of what it costs me to put even a fraction of my weight on this leg, this whole thing would be so different, emotionally. "Emotionally" I feel guilty for not "Just Do(ing) It" -- it's not as though I were paralyzed. If They -- and I even include my husband in this They -- could actually feel the physical effects of this, They would try a whole lot harder to Find and Eliminate the Cause. I feel as though my tongue has been cut out, in that I can't seem to communicate.

Ok now I really DO feel "voiceless..." the mail came; still no envelope from Dr. Janet -- I have to get a ride to the office to pick up Rxs ... and ... there is no record of my call last week. It's no problem -- arano is more than willing to take me -- it's the principle of the thing. I phoned them so this wouldn't happen. And it did anyway. Well, as soon as I can quit crying, I might as well get on the phone to bark at the gyn/onc office for not keeping me informed about the blood clot medication level.
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monday night 06-29-2004 - 12:04 AM
Monday night. The day after yesterday. Orienting myself in time goes much better in the morning -- I am just terrible about what the actual date is. When I get back to work and have the page-a-day calendar in front of me and the date in bold on the point-of-sale software, it will be much, much easier to remember. Not only remember, but know. Being unwell with all the attendant naps and no real reason to know the date unless a doctor's appointment is near gives the days an unreal, timeless quality.

I was right -- the physical therapist is trying to kill me! Heh. She wrapped me so tightly that my toes swelled up... I had to unwrap about an hour ago because I thought I might go mad from the weird sensations from toe to hip. Tam -- doing the wrapping myself at her direction was my plan, but by the time we got to it today I was so exhausted and hurty that I just sat there and let her do it... I will regret that, I think. But she said I'd done a good job with the lower leg, and I'm just going to be more confident in my memory (paid attention when I unwrapped, too) and know that at least I won't wrap myself so tightly that I put my toes to sleep. Also, she said that sometimes I will probably have to do it several times wrong in a row; that just 'goes with the territory...' sometimes I will drop a bandage and watch it roll across the room, or un- roll, and have to re-roll before I can continue wrapping...

It's terrible to get so frustrated with myself. I'm such a perfectionist. You'd never know it from my surface because I'm so forgiving of others, and I can be very messy in my surroundings, but there is a part of me that's incredibly uptight in regards to myself. You might get a clue if you saw how frustrated I get when things don't run smoothly...

Things are not running smoothly at the moment. Of course this is Rx related. I called Dr. Janet's office last week to have written Rxs mailed to me so I wouldn't have to go haring off to her office having run out of something crucial ... well, no envelope Saturday, so I thought surely Monday... I realized a few minutes ago when I took my Oxycontin that I don't have enough for a full dose in the morning. And the level of pain I've been enduring with being out of the breakthrough oxycodone -- I am not looking forward to tomorrow. On top of that -- the mail-order bottle of Warfarin didn't arrive either, and I had to ask DH to get some (full price) at the pharmacy. Luckily my bottle of 1mg is refillable -- the pharmacist kindly dispensed the maximum quantity for the minimum price. I'm grumbly because I have not heard from a doctor or nurse to confirm that I'm still supposed to be taking 4mg, and grumbly also because "to make it easier" since they are supposedly still testing for the optimum dosage, the doctor wrote for 1mg tablets. That means I get to take four pills. (Before, I had an rx for 3mg plus an rx for 1mg.) At night I was already having to take such an immense quantity of pills and this means even more. Okay, it's just two extra swallows. I shouldn't get so bent out of shape over it. Right now, no matter what any of 'em do, it's not going to be "good" in my eyes. Tomorrow morning I will probably be in rare form, primed to call with my complaint about not hearing from anyone about how much Warfarin I'm supposed to be taking. No sweet-voiced me for the likes of them. I'm just fed up with the whole thing. DH looked at the bottle and said, "It says here you're only supposed to take one. " How can he be so obtuse? That's the point of getting my blood drawn every week! Sheesh! Yes, even my darling, dear, sainted husband who very kindly endured the 'hassle' of going to get a partial refill ... even he is the object of a grumble. Of course instead of grousing at him I just burst into tears, apologizing for the inconvenience and explaining that I had tried to avoid it. More 'Darnited' Tears. The last thing he needs after a hard day's work. Eh, well, better tears than me actually calling him "obtuse." He's not, you know. He's an extremely observant person. I'm just mad at the world.

Cousin J wasn't around to take me to the physical therapy appt. I wound up asking arano's mom to take me. Luckily, I didn't have a stress fit over that, too! I knew it was an awkward time for arano herself to take me because of A's summer school, but I didn't panic. Patting myself on the back for that small thing...

I just really dread tomorrow. I'm so sore from today. I can't get comfortable. At least I unwrapped myself so my toes aren't driving me mad...but I'm worried about the consequences of staying unwrapped all night. I may have to at least put the compression 'sleeve' on -- I'm going to look at my leg before I go to bed. I haate looking at my leg! It's better than it was. First it was so puffy and swollen that I was revolted by it; then, after being wrapped, it was so spindly and misshapen that I was disgusted by it. It was sort of semi-normal-ish this morning when the therapist unwrapped it. So I definitely didn't mess it up by wrapping it wrongly -- she said I'd done a good job -- and now I'm repeating myself. I'm going to leave that bit in, though -- it's part of the process of getting myself to find the positive bits in the midst of so much negativity.

Here's some more 'positivity:'
--I'll have the medication refills all straightened out before we go away this weekend
--We're going away this weekend!
--I don't have to go back to the therapist until next Wednesday!

I'm still too grumbly to count my blessings, though. It feels too artificial.

Here's something really positive that is not artificial:
Tam, Moonchime, Clementine, and Jmac -- your comments on my last journal entry really meant/mean a lot to me. Not only have you lifted me out of a weird feeling of isolation, but also you are making me feel valued. Not just from that last journal entry's comments -- it's a cumulative effect from other days' comments and PMs, too. Thank you from the whole of my heart!

I thought I might go to sleep early tonight just from the exhaustion, but my body still feels too 'there' for me to go lie down yet. If DH didn't have to be up so early for a class tomorrow, I'd risk turning on the light and reading in bed. I really, really don't want to risk waking him, though. So -- I'll be right back -- going to get some water and graham crackers.

AH there is nothing like a bit of a midnight snack! I will probably have to make them a Special Treat though. I've gained enough weight. The good news -- this one made me sleepy!

G'night! Love,
=empresse
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Some Fun and Some Woes 06-28-2004 - 12:43 AM
It's Sunday night, nearly midnight. Date...hmm. It's past the 26th, which was cousin J's birthday, which I missed along with Cousin M's the week before. Time to start making belated birthday cards. I think it's the 28th, but maybe that's tomorrow's date. AH! A quick Google in another window tells me that it's the 27th today, for about 20 more minutes.

I've been catching up on some of my sisters' journals...so many are going through such tough times, my woes pale in comparison. I almost don't want to make an entry because I know I will complain (that's the mode I'm in, still). My heart is so busy "going out to" others at the moment. I am not going to name names only because I haven't read everyone's yet, and I don't want anyone thinking she's less important to me...my process of catching up is not driven by order-of-caring. It involves things like who has happened to post recently and shows up on the screen unless I already knew that something major was happening with someone, and then she will get checked for updates first.

The Botanical Gardens were beautiful, of course! Arano wheeled me valiantly. I jotted down a few of the particularly wonderful roses and a couple of other plants, but didn't really stay in one place long enough to sketch so the colored pencils were untouched. There are so many different gardens, and we wanted to see nearly all of them -- and did. Now I know where I can get a parasol -- the gift shop's display window sported one. I actually needed it that day -- burned through SPF 30 sunscreen applied liberally and early. The only really bad spots are on my hands where I had eczema a couple of years ago ... very new skin, apparently ultra-sensitive. I still haven't re-checked side-effects to see which medication(s) increase sun sensitivity. Not that it particularly matters -- I have to take all of them, regardless. Anyway, the outing was well worth the burn! I came home with ideas for our garden here, especially the shade garden. One Project for the ten-year-plan is a seating area. At the Botanical Gardens, there is one space with -- I think you'd call it a huge pergola -- with benches. The pergola has lattice with climbing vines and a circular opening like a window, framing hanging pots planted with trailing foliage. The arrangement gives a lot of dimension, and provides shade. Cousin J. can provide me with wisteria to climb the structure, and of course I envision my dream-rose, Zephirine Drouhin (which I did not see at the Gardens) perhaps entwining with the wisteria eventually. My vision placed it where we already have shade, but I think arano's suggestion of putting it where we have the patio makes more sense. It will cost money for the wood and lattice, and I'll still have to design it with dimensions, so I won't be starting this Project any time soon. Fun to be inspired, though!

Today I went to the movie theatre for the first time in forever. Discovered that sitting can be quite painful. I sit at the computer, but I move around periodically and I have a special firm foam pillow to elevate my legs. I almost decided not to go, but decided at the last minute to "seize the day!" DH decided not to go, and I was sorry he didn't come along. He is extremely sore and sunburned from his Saturday adventure atop the roof of a shed. Went to help someone roof it -- turned out DH was the only one not afraid of heights. 40 sheets of plywood. Hot sun. Hammer and nailgun. Oh, and no food... he came home shaking from heat exhaustion. He's lucky he didn't get sunstroke. I was really worried, but a cool shower and a nap and Food did wonders. (He only 'fessed up to the no food bit midway through dinner.)

And now for my woes. I was all wrapped up, toe to thigh, and put a plastic bag over it all to get clean. Well, I didn't secure it properly and soaked the bandaging. Hung it all up to dry and, after gallons of tears, just put the compression stockings on for the Botanical Gardens. When I went to wrap myself up again, more gallons of tears...I just couldn't get it right. I finally got the calf wrapped, but it felt wrong -- the next morning I realized I had left out one of the layers which is sort of like cotton batting. So I took another shower and shaved my legs since I had no bandaging on. That razor was cheap, and you get what you pay for. I can not get all the hair off my legs. Only a pint or so of post-bathing tears (seems like I always cry after bathing ... I think it's mostly the exhaustion of doing it, and then maneuvering out of the tub and into the wheelchair is pretty scary, too, but it's also that I want my body back) and then a short rest before the movie.

SO after dinner I decided I'd better get those compression bandages back on. It's amazing that I have any tears left to cry. The position I have to get myself into hurts, and then I just can't seem to get it wrapped right. (hmm accidentally deleted about 4 paragraphs just now...) To make a long story short: amid great quantities of tears, I gave up on the thigh, but I'm leaving the calf wrapped "as is."

I seem to have sprouted new pains, too. My left leg muscles and upper arms are sore from all the 'crutching around,' the right side (maybe where my ovary used to be?) hurts, and to top it all off, I have a sore spot on my vagina. Probably from all the antibiotics and not enough acidophilus. (Eating yogurt raisins as I type, which is probably too much sugar to be beneficial.)

Thank you for "missing me" and encouraging me to write more. Special thanks to moonchime, jmac, Tam, Clementine, floppsy, PraireLakeLady, healthseeker, and FluffyBunny (oh I hope I didn't leave anyone out ... ) I have to get out of this 'slump' before the wedding! It will be nice to see that branch of my family, and they'll be meeting DH for the first time. Lot of pressure on him ... poor guy, trying to keep all my cousins sorted out and where they fit in. Where it gets confusing is when my cousins have kids. At least on my mom's side of the family we don't have name repetition! I don't have that big of a family -- it's mainly cousins at this point -- different from his family, where it's mostly immediate family.

The cousins who live in town here are from my dad's side of the family. Then there's another cousin who lives in the same state but he's my father's brother's son -- and he has a son who calls me a lot. Another J -- both after my dad, actually -- but the cousin J who lives here has never met the younger one. Family rift stuff. One of these days I'll get into some family history, but it's too late at night to start now.

Therapist tomorrow at 11:30, and then I just have to keep up my exercises until the following week. Wish me luck and good memory for the bandaging lesson...
love, =empresse
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I haven't written since Tuesday??!!?? 06-25-2004 - 11:45 PM
Somehow it's gotten to be Friday night. I can hardly believe it's been since TUESDAY when I last wrote...

I think my physical therapist is trying to kill me.... Since the gyn/onc tossed the nerve pain up in the air and landed it in her hands, she seems to be 'experimenting' on me. One day -- I think it was Wednesday -- she said, "Let's try something," and got this big -- Huge -- rubber ball & had me lie on it on my stomach. It was hard to get myself into that position and then I did. Then I rolled sideways to get off of it. I have no idea what that was supposed to do or prove or whatever, but I haven't had to do that one again, anyway. And she says things like, "I never know what's going to work with you and what's not." Oh so confidence-inspiring, eh?

But now that I'm finally getting used to her, today she said July 9th is her last day. WAH! Why does this keep Happening? Needless to say, I feel abandoned. And through this whole "journey," there's been Such a lack of consistency. This is just yet another. DH said that maybe I'll get someone who will turn out to be the one who really helps me. Yeah. Maybe.

At this point, her aim is to "stretch that nerve" instead of doing weight-bearing. Even with all the pain meds, I'm now back to having constant pain. The nice 'physical burn' pain of using long unused muscles is what was showing me progress at least in the area of strength, but I'm not enjoying that any more because of the other, excruciating pain. It seems to me that they ought to be looking for the cause instead of this shoot-in-the-dark style "let's try this" approach.

I get tired of thinking about and writing about my stupid leg pain all the time. And then when I go out in public with the crutches and people ask, I'm starting to feel a little hostile. "Complications from surgery. SO. What's going on with YOU?" I hate it when people press me for more. Or when they get that all sorry-for-you tone into their voices.

This session, since my thigh ballooned up after wrapping up to the knee, I'm wrapped all the way up to the top of the thigh. When she unwrapped me this time and I saw my spindly little calf, I just almost cried. I just want to walk. And then there was this little old lady with an artificial mechanical leg, learning to walk on it -- the metal stick part of it was purple, and the therapist & I were wondering if she'd chosen the color or if it was arbitrary -- I thought maybe it was a whole new twist on that poem, "When I am an old woman I shall wear purple..." And then the therapist I'm sure didn't mean to hurt my feelings, but when she unwrapped my leg she said it was as spindly as that woman's. (Assuming she meant the real and not the purple leg...) Well I just don't think I can handle going to a public pool right yet. I might when we go to the wedding. It also looks like when you sleep on a wrinkly sheet -- I'd almost rather it was puffy.... (Of course I don't mean that!)

Cousin J was kind of iffy about taking me to today's appointment -- he was hoping to go out of town -- so I asked "arano." ( Clementine -- arano is a friend of mine, female friend...I should have made up a more feminine name for her, but she made that one up herself... ) On Wednesday, he had the top down in the car both there and back, and I didn't have sunscreen. I didn't get badly burned, but I've been uncomfortable. I'm not running a fever, but I feel feverish and my skin (even parts that weren't exposed to the sun) feels really hot. When we got back on Wed and I noticed my skin was red, he was incredulous..."it's only 23 miles...25 minutes or so..." but yeah, I got burned in that short amount of time. Taking doxycycline and maybe some of the other medications probably adds sun sensitivity (I've forgotten the side-effects of everything now) in any case I feel kind of icky from that. What a long list of complaints I have...

It's been a really rough week. The pain is taking a lot out of me, and the exercises can be exhausting just by themselves. DH didn't understand me when I gave him an rx to mail to the mail-order people, so it didn't get mailed right away and I'm possibly going to run out of Warfarin and have to scramble to get a few to hold me over. I got my blood done at a lab, and a doctor was supposed to call me about the Warfarin dosage, but no one has called. Things not running smoothly really stresses me out now, more so than usual. I did have the foresight to call Dr. Janet's office to have her mail me written prescriptions so I shouldn't have a problem with those...but I have this dread that this, too, will have some kind of a glitch. I hate this feeling of dread. And just in general I'm not feeling like I'm making progress.

Maybe it's a good thing that I'll be getting a new physical therapist, now that I think about it. I want to just have Dr. Janet refer me to a neurologist, but I'm so afraid we're going to run out of insurance money. The compression garment is supposed to be covered by insurance, and I'm hoping it will arrive before I get a new therapist. I forgot to ask whether it's all the way up my thigh or just to the knee, or if it's like a pair of stockings...

Also, our trip is coming up so soon (I have a cousin getting married in Pennsylvania and her parents sent us airline tickets) -- I still have to call the airline to tell them I'll be in a wheelchair. With all the appointments, even though I'm not working, it doesn't seem like I have time. Because I come home and collapse into bed. I feel like a slug, doing that. I should be all excited about this trip and the weekend after, having company from out of town, and I'm worrying about being "up to it." And especially worrying about money. Even though we're being flown to the wedding, I still want to get them a present, and we're going to have to eat... and then when our company comes, feeding them... at least DH will still be on vacation time.

So I'm exhausted and in pain and a bit depressed and pretty anxious.

arano is taking me to the Botanical Gardens tomorrow. The weather cooled again, so I shouldn't be too much of a chore to push around. Thank heavens I'm light! Again, though, I'm anxious about it. I have to get cleaned up and find something to wear. And we're leaving fairly early in the morning to do this, too. It feels like a Major Chore, getting myself clean. I'm going to do the plastic bag thing in the shower instead of stressing myself out with unwrapping and rewrapping my leg. I haven't done it all by myself yet. Doing it for the first time while it's morning and I'm groggy is just a prescription for frustration.

It's not like me, all this pessimism. I should be looking at how much fun it's going to be, how I'm going to feel so much better.

I am seriously going to take up ballet. As soon as I'm on my feet again. I've always loved to dance, and the exercises are the kind of flexibility and muscle tone I'll need. My mom took me to ballet lessons, but my aunt refused. Of course I'm far too old now to dance professionally, but my body was made for it and I think I will benefit immensely from it emotionally as well.

Well I don't know how it got to be so late -- I must get into bed so I can be ready to get up in the morning! I don't know how it got to be the end of the week so fast, either...

Sorry about this being disjointed and rambly. Oh, the paperwork should be all in order now...got some in the mail to sign again, because for some reason it said I didn't want them to contact my employer and I corrected that, and also it said that 2003 earnings "weren't available," so I had DH copy my W2 form and enclose that. And even that didn't run smoothly -- he didn't understand that I wanted him to take the whole envelope, xerox the thing, and mail it...I don't know what I'm doing wrong in the communications department...Anyway -- BED. NOW. Love, =empresse
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Still Tuesday 06-22-2004 - 10:45 AM
It's still Tuesday.

It was nice to visit with arano. We looked at gardening catalogs and talked about some of our garden wishes. I need to get mine on paper so that DH and I don't have different ideas and butt heads over it -- also to show other people what I have in mind.

Just ate a bite of breakfast -- can't believe it's already almost noon! I'm done with my morning medicine except for the big fat capsule of antibiotics. I want to wait until my acidophilus has had time to digest first. For some reason I'm overwhelmingly tired all of a sudden, too. I was going to sit here and do a long journal entry but I think I need a nap instead. I'll try this again later.

=e
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June 22 quick 06-22-2004 - 08:11 AM
Tuesday Morning. June 22, 2004.
Everything Is Going According to Plan So Far.
Yes, I was in bed around midnight, slept through, and managed to get up with the alarm! I have a vague memory of DH telling me that the snooze button was to the left of the book..."Just touch the book and move your hand to the left...there..." I think we only did snooze one time -- having to be the Stage Manager probably got the fuzzy-muzzies out of poor DH's head! And he made the delicious coffee while I was figuring out how to brush my teeth. Every morning is truly a new beginning when I've slept well! The English language is a whole new concept. I'm such a little nestling...

I did wake up in pretty severe pain. In the night I pushed my heels up near my backside so I was lying on my back with my knees bent... all the muscles I used with my new exercises yesterday are telling me where they are, and they seem to feel soothed by that bent-knee posture. Straightening them out and loosening them up while having no idea of what I was doing is pretty interesting in retrospect. The body remembers even when the brain is on hold... But this is the "good" kind of pain that I don't really mind. It's the kind of pain that means progress, and it doesn't give me a sick feeling inside.

I nodded over the morning news via Google -- don't have a clear grasp of what happened in the world while I was sleeping.

arano is here more later
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Mon. 6-21-04 In WHich I Get Mummified by the Three Bears! 06-21-2004 - 10:28 PM
Today is Monday, 21 June, 2004. Got off to a frantic start this morning -- had to hustle out the door for the lymphedema clinic. Had a strange sleep pattern the night before, and forgot to call my krazy cousin -- luckily, DH was ahead of me, and called him and called me to get the ball rolling. I don't know what happens when I go back to sleep after the alarm. I hate waking up not knowing what day or time it is and suddenly discovering I have to rush! But I had enough time for a cup of coffee while giving myself a "French bath" -- to me, that means a quick wash in all the 'special' spots... I have heard people use the phrase to mean something very different.

I need to 'train' DH to wake me up with him, so that he stops thinking he's doing me a favor by letting me sleep! I need my time in the morning to get un-groggy. He thought I'd been up all night, since I was up around midnight when he woke up, and again somewhere around 4:30... but I'd been asleep in between. Got up and made myself a cup of tea in the dead of night. The sleep pattern was just all messed up because of naps. First, we went to stepdaughter MW's for Fathers' Day Breakfast and I needed a nap when we got home. Then, off to a party at the old schoolhouse which I'll describe tomorrow morning -- I've promised to get to bed reasonably early tonight -- and then home for another nap after an early dinner. DH joined me, and we woke up after dark, brushed teeth, got into nightclothes, and went back to bed.

I've been mummified by the Three Bears!
The therapist has finally wrapped my leg! (I mentioned massage to her and it got lost in the discussion of the nerve pain in my hip and then the wrapping...) It's a special kind of wrapping for lymphedema, designed to force the pooled lymphatic fluid upward and onward to circulate around the body. Before any wrapping, she put Lubriderm lotion on my flaky dry skin. First there is a loose gauzy 'sleeve' to protect the skin, and then a wrap of foam. My toes are free, but if they balloon up we will wrap them (so far, so good). Then she showed me the bandaging. Looks like the ol' Ace bandage, but made of different stuff that isn't as stretchy. She laid out "Baby Bear, Mama Bear, and Papa Bear." Baby Bear is the narrowest, goes around my foot and ankle. Mama Bear does a pass around over the top of Baby Bear, then goes up my leg to just below the knee. Papa Bear (the widest one) goes over the top of all. It's firm, but not so tight that it's cutting off the circulation.

I am supposed to remember how to do this myself and to be able to show someone how to help me...HA! I'm to wear it overnight and if it's loose tomorrow, redo it. She said I couldn't hurt myself if I did it 'wrong,' and I'm not sure whether that was a vote of confidence in my abilities or a simple reassurance.

Got the OK for swimming, but not in the pond. We might be able to get a big inflatable pool for the backyard but it is at least $100.00 for one that's deep enough, and the back yard isn't level & has all those old doggie-dug holes, but I'm still keeping my fingers crossed for that. My friend arano can get me in at the University pool, and there's also the Y which would cost about the same as buying a pool. I'd have to keep it scrupulously clean if we're able to get one -- would love the privacy (still self-conscious...oh vanity...) but arano knows when the University pool is virtually empty. The bar owner has a really nice pool with a waterfall, but even though we've swum there during past summers, I get this cold vibe from her lately and would probably be super-uncomfortable there. Another woman who is really nice offered the use of their backyard pool...problem is, DH says they haven't kept it very clean in the past. So I have no idea where I'll be swimming, but will figure out something. I can do some of my exercises in the pool, and the 'scissors kick' will be really good for me.

We've abandoned the weight-bearing exercises again. I just can't do it. I 'showed off' my endurance with all the other exercises ... felt the need to prove to the therapist that I've been trying.

Thank you prairielakelady for sharing your experience in your comment about the 'in your head' thing, and for this:
  Quote:
"Tell your DH you want his undying love and support and no more cracks about making it up. He can think whatever he wants but never never is to utter it out loud with words or a facial expression! (Sometimes these DH need direct instructions about how to treat us-tee hee."
I read that & said, "Yes!" because that is exactly precisely on the money. (I must give him credit -- he, too, sees that I am trying, with the exercises.)

I just took some breakthrough medicine and finally I've got relief -- the hip has been horribly achy for days on end. I'm already almost out of it, and need to call Dr. Janet. I will get in bed by midnight and hope to sleep straight through till morning. Then, my plan is to get back into the routine of doing a morning journal entry with my coffee. I have a list of phone calls I need to make, and arano is going to stop by while A is in summer school. (It's not a remedial thing -- it's elective, and he was so excited that he was up at 5:45 this morning!) I will tell you more about my rose and back porch gardening tomorrow, too.

Thank you also to Clementine, floppsy, and moonchime for your comments ... saying you've missed my entries ... made me happy/sad ... and yes, sunshine is a soul healer! I need my Sun! We've been lucky with the weather -- it's usually Dog Days by now, starting early and continuing for months, but this whole weekend was cool and again we have the windows open & a/c off!

A cheerful cricket is chirping (fiddling) outside our bedroom window. I will let him serenade me to sleep now.

Until the morning light,
=empresse
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It's beautiful outside, and I'm going to go there 06-19-2004 - 12:42 PM
Saturday, June 19th, 2004
I feel like I've been away forever, just missing one day. I am going to catch up on everyone's journals after I make an entry, since I have some privacy right now.

Yesterday's doctor's appointment was just frustration all the way. I got off track and didn't ask any of my list of questions, and they (doctor and nurse) forgot to talk with me about the blood tests and Warfarin...which I didn't realize until after I'd left the office. I mistakenly got there 2 hours early because of the appointment change...had 9:10 stuck in my mind, but the new appointment was 11:00. A real shocker for me to get somewhere early! They were able to get me in early, which was good.

The CAT scan doesn't show anything that could be causing the nerve pain -- and this was where I got off track. The doctor just told me to tell the physical therapist. Of course, leg pain isn't her specialty -- she's a gynecological oncologist...

I simply have to push for finding the cause of this. Even my husband acts like he thinks it's all in my head. Like I should just get up and walk. I would if I could. I feel very offended by this attitude. That makes me get all quiet, which helps nothing. I have to make a Plan of Action. Something is causing this.

I slept really late because I had a bad night & didn't sleep well. DH thinks he's doing me a favor by being mouse-quiet, but I need to be up to take the pain medicine. So I woke up in super severe pain. I am so tired of it. Tired of writing about it, too.

I'm glad and relieved that I don't have any more lymphoceles, and I'm frustrated and upset by not knowing the cause of the pain, and I'm sick and tired of the whole thing. I look at my journal lately and cringe at the string of complaints -- I've lost my sense of humor somewhere along the way. I have to turn this around. No wonder I sound depressed!

Back 'way back, when Marmot appeared to me, he 'said' I would enter a period of 'hibernation.' I have certainly been resting. Has it done any good?

DH is back home from visiting his mom. He says it is beautiful outdoors: about 78 degrees. I can see that it's sunny. This is the kind of weather that usually calls to me, beckoning me out to putter around in the garden. He is out there now, weed-eating and soon to be mowing. I had planned to get out there early with the scissors and a chair, to sit beside my Bonica rose and prune it gently to encourage more blooming. I was disappointed about having slept so late, thinking I had missed my time window. But I think I can still do this! As soon as the back yard is mowed, I will go out with the crutches. In the meantime, I need to eat breakfast and get cleaned up, change into a loose dress, and surprise DH. Right now I have my tray of marbles beneath my feet -- my original exercise from Dr. Janet. So I'm going to end this entry abruptly and abandon my earlier plan to catch up on all my sisters' journals. I'm going outside. Love, =empresse
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stagnant cycles 06-16-2004 - 11:54 PM
Oh I am so "not myself," and it's awful!

I'm horribly dissatisfied with my journal writing lately. Dissatisfied in general. Terribly self-critical.

It started with that whole applying-for-temporary-disability thing. I keep wanting to tell them how much I want to go back to work and that I don't want disability, but of course that is silly...I hate needing the disability. I know this pain isn't in my head, but today I actually had myself convinced that it was, when I decided to do the weight-bearing exercise. My leg is strong enough to stand on. That's not the problem. Well, I proved that to myself today and what good did it do? None.

I'm not sure that sitting here writing about how I'm "not myself" is doing anyone any good either. I just feel like maybe if I dig at it deeply enough I will dislodge whatever this mental obstacle to self is. Kind of like picking at a scab. Ugh.

It's midnight, and I should be lying down. Well, I should be sleeping. Lying down to get the swelling under control for another cycle (not too bad in the morning, then gradually swells bigger and bigger all day in spite of exercising and naps with it elevated). That's part of the 'scab' I'm picking at -- upset because nothing seems to do any lasting good. Dead-end repeated cycles are stagnant, and I feel stagnant.

And boring. Stagnant and boring... boring because I'm stagnant. "What did you do today?" Same as every other day, pretty much. Except that I didn't do a morning journal entry. Got up, had 1-1/2 cups of coffee. Ate cereal while reading. Took pills. Did exercises. Read (hey -- at least I'm reading grownup fiction again -- that's got to count for something) with feet elevated. Fell asleep. Woke up. Ate a bite of lunch. Did exercises. Sat at the computer. (Finished the form -- that's got to count for something) Did exercises. Ate dinner. Took some more pills. Sat at the computer. Still here, sitting at the computer. I'm not even sure I got all of that in the right order. But it doesn't really matter whether it's in the right order. Doesn't matter if I forgot something. Ah Hah! Another part of the scab -- feeling meaningless. Not adding meaning to my world, either.

When I hurt this badly, the pain really just takes over.

And I'm wallowing, too. I'm letting it get me down. Instead of looking at the bright side. The thing that keeps bothering me, over and over, is that this nerve pain started in February and it is now June. I was under the impression that the nerve pain would stop when the lymphocele was drained. It didn't stop, and they found a second lymphocele. They drained that, took the tube out, so there should be nothing pressing on the nerve. But I am right back to where it started in February. I go to put weight on my right leg, and this pain starts in the hip, and I can not walk on it. It's uncomfortable then to sit, stand, lie down -- nothing makes it better until it subsides. Pain pills take the edge off, usually. It turned into a constant pain, but the combination of patch and pills settled it or masked it... but now ... now I'm not "ahead of" it.

Looks like I might be able to settle into the bed for sleep now. I'm doing that nodding-off thing. Until the morning, then. Sweet dreams, Sisters! Love, =empresse
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June Somethingth. 06-16-2004 - 10:07 PM
today was Wednesday, June um. er. Somethingth. In the teens. I didn't do a morning entry and I have no idea of the date. Lights are out, because DH is asleep. Of course, I could go to a news site to check the date. But you all know the date. It's just me who doesn't, and the day's over, and I don't really care.

I went ahead and did my weight-bearing exercises today. The pharmacy called -- they got the rx in the mail already, so I knew I would have some breakthrough medicine for tonight if I needed it. I needed it. And even with the medicine I feel like someone has taken a red-hot rod and inserted it into my hip and on down my leg. Also the place where the leg meets the pelvic area is throbbing. This is very different from the muscle pain. My motion exercises don't make me sore any more.

No, this is what was going on when they first found the first lymphocele and said it was pressing on the sciatic nerve. This is what was going on in February and it is now June. Except that now I am also all swollen from the lymphedema, too. I just have to wait for the results of the latest CAT Scan. And wait for the therapist to be done with her vacation.

I think we've got the cart before the horse. I think the proper thing to do is find the source of the nerve pain before doing things that exacerbate it. Find the source and get rid of it for heaven's sake...for my sake...

I've never been an athletic person (nearsighted, so all ballgames are out) but I have always enjoyed walking & have had amazing stamina -- when I lived in NJ and would take a day to myself in NYC I usually walked everywhere...just to be completely surrounded by City...I've walked from above 42nd street all the way down to Battery Park countless times (this was pre 9/11) just because I enjoy it. Now I can't walk to the bathroom??!! It makes me angry, more than anything right now.

I'm waiting for the results of the CAT Scan ... nothing I can do but wait. Eventually it will be Friday.

Tomorrow I get to watch arano's boy! He's 7. We're going to play board games, and he's going to do his 15 minutes of reading, and maybe we will do something creative if he's in the mood. arano's mom has been in the hospital with pneumonia, and she's going home tomorrow; that's why I get A. I'm sure this will lift my spirits. I have been spending far, far too much time alone. I haven't been feeling all that well. No fever, but achy and exhausted. I may have mentioned that in earlier entries. I can't remember what I've been writing about lately...seems like a lot of nothing.

Oh, and I got my paperwork all done. It was the "jobs done over the past 15 years" that was holding me up. Very difficult to put into their little boxes. And I can't remember how much I made or what year it was... Anyway, I've gotten it together on a separate sheet... My first stab at it, when I opened up the document -- it had saved with the wackiest spacing ever. I tried changing margins, fonts, font sizes -- nothing put it back to its original form. But it wasn't in a format that they were asking for, anyway. Not that my attempt to put it in boxes is exactly what they were asking, either. The first one, I was giving too much information. The second one has a lot of question marks by dates and rates, but at least it is restricted to answering their questions.

Then they wanted to know, in "the job you did the longest," "What did you do all day?" Describing what a bookseller does all day...sheesh! I tried to keep it concise. And besides selling books, I'm also the buyer. Writing about it makes me 'homesick' for the store and also 'sick at heart' knowing that R is about dead on her feet doing it all...And then my mind jumps to "I don't know when I can go back, and should we change the hours or will B be back soon enough to get me back & forth?"

And they have all these zillions of questions after that one, about what did you lift and how far did you carry it and how many hours did you do this & that activity... It was just Awful. I'm so worried that I'm not giving them what they want, and so worried that I'm not going to get this, over something stupid like not remembering which year I was working 2 jobs and how much I was making at each one.

I hate forms anyway, and bookselling doesn't fit in boxes very well, and my whole past 15 years doesn't either, and why do they need to know so far back? My head is spinning ... but at least it's done.

It's done, my hip /leg is on fire, I'm "storesick," and once again here I am saying, "Tomorrow is another day." It always is.
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an uninteresting record of needing to rest after doing nothing much 06-15-2004 - 11:53 AM
I can't believe it's already after noon. Some days just drag along; today has half-flown away, and no, I'm not having fun...

Instead of armchair gardening over breakfast, I read a little of the Sunday newspaper. Measured my foot -- could see that it had swelled -- it's gone up 15cm for no apparent reason unless it's the coffee. Will measure it again after doing my first round of exercises -- I'm backing off with the weight-bearing ones until I have the breakthrough medicine for after.

I've already missed the mailman, so there's no haste with the paperwork. I mean, I'll have it ready for tomorrow, but no reason to go all frantic about it now. I know I haven't done anything to speak of yet today, but after my exercises I am going to nap. Have to stay up for 1/2 hour, since I took the Vioxx after breakfast. I wish I'd gotten up when DH did -- need to stay in the routine of getting up as though I were going to work. I'm so tired of needing so much rest. I feel like I'm being lazy. But something is definitely not right. I know that one of the side-effects of the antidepressant is sleepiness, and I know that last night I did not get good sleep, and I'm determined not to beat myself up the way I have been lately -- so I must take that "feel like I'm being lazy" remark and toss it on the floor and roll over it a few times with the wheelchair to quash it.

So my goals for today are:
1) have paperwork ready for tomorrow's mail
2) do 3 rounds of the non-weight-bearing exercises

and that's really all, and even that feels like a lot. I am not sure how to describe the fatigue I am feeling, and have no idea why -- I kind of feel the way I did during the last week of radiation treatments, actually. It doesn't seem like yesterday's little outing should have taken this much out of me. I'm still on the 75 patch -- haven't "graduated" to the 100 yet -- so it's not that. I'm hoping that this nap will be a refreshing, rejuvenating one!

Sorry this has been another boring entry. =e

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Finally, it's "tomorrow!" 06-15-2004 - 10:19 AM
Yes, it's tomorrow today. June 15th. Tuesday. 2004.

I was up once in the night with horrible "bad tummy," which I hope was due to worrying and not a new schedule for my bowels...

Half my worries are gone, now that Jmac's DH called. She is a new friend, and a good friend already. We've shared some great laughs and some serious moments, and she's taken the time to type up info for me out of some of her books which I'm sure was time-consuming. I hope I can be as good to her as she has been to me, and that we'll stay in touch for years to come.

I have the phone next to me...need to call the pharmacy, but the most pressing need is the coffee. I am still swimming in fog. I've cut down my coffee intake, but first thing in the morning I need that 1-1/2 cups to clear the cobwebs out of my mind! Mmmmmm and DH makes the best coffee!

After I get the pharmacy thing straightened out, I'll eat my cereal and get cleaned up. I measured my foot this morning -- it started out again nearly normal! But it has already started to swell up again, and I really haven't done anything much. No exercises yet. I've wheeled into the bathroom once, and the kitchen twice, and it's been up on a pillow (the foam one from arano) while I've been sitting at the computer.

Tomorrow I am going to try an experiment. I am going to skip the coffee. Yes, now that I've rhapsodized about my need for the morning coffee, it stands out in my mind as a possible cause of swelling.

I am now, before I post this entry, going to call the pharmacy. Dum-da- dum dum.... "hold on just a moment..." and my heart starts up with a rapid beat... she wrote the prescription incorrectly... so she is mailing them a new one. I didn't catch the mistake... she wrote "oxycontin ir" instead of "oxy codone ir" and, she keeps forgetting to write her DEA number on the Rxs. This pharmacist is such a sweet man -- he explained in such a soothing voice why this was a problem (and obviously he was not there yesterday, because he said, "the pharmacist called her office..." -- he's so good, not saying directly that someone else handled it and yet making it clear that it wasn't him being the stickler...) So, not that my life is any easier, being out of the breakthrough medicine for who-knows-how-many days, but I don't feel any animosity. I just really wish yesterday's pharmacist would have passed this information to DH when he picked up the Rxs...would have saved me a lot of worry. And would have spared my "good" pharmacist the time he took to explain it to me.

One day this week, after all my forms are mailed off, I am going to make him a little card thanking him for the time he has spent explaining things to me. And I will also write a note to enclose with my next Rx request for Dr. Janet (because I'm going to have her mail them to me next time) explaining that I've had problems getting Rxs filled and the reasons, and asking her to double-check that she's put her DEA# on...

Yes, today is the day I concentrate on the government forms for the last time before mailing them off. For some reason, my caseworker ticked off the box saying not to contact my employer -- glad I looked over the stuff she sent...

It's the old story..."if you want something done right, do it yourself..." I get so exasperated sometimes. I don't feel that right now, though. Right now I just feel relieved that Cousin J didn't drop/lose the missing Rx paper, and that it's in safe hands. I had all kinds of scenarios running through my mind. Someone finding the dropped Rx paper and altering it for their own use... that was the worst worry. Because this stuff has what they call "street value." Especially with her having written it as Oxycontin. I read an article about Courtney Love, and it said, "...Love admitted to police that she had taken 'hillbilly heroin,' the slang term for the narcotic painkiller OxyContin." Ugh! I think they do something to it, crush it up ... it's the same stuff Rush Limbaugh was addicted to... "Hillbilly Heroin." That really just takes the cake. I am really cautious about the empty Rx bottles, too -- don't want anyone to discover that I'm taking that because they might break in to steal it. Now I'm torturing myself by reading an article in Newsday... the accusations mention an Astronomical price, too... man-oh-man does this stuff have "street value." 100 pills allegedly sold for $1,500.00 ... Scary. Well, anyway, all my worst-case scenarios were in my overactive imagination, and I haven't endangered anyone, and there was no carelessness involved. And I will be extra-super-careful with tearing the labels off the bottles when they're empty. I've been re-using them instead of pitching them -- great for mixing glue & water, and for watercolor paintbrush water. Especially with this one wild house down the street, if anyone heard we had OxyContin in the house, I'd be in serious danger. And here goes the overactive imagination yet again.

Okay, I'm going to stop toggling back and forth reading these newspaper articles now! The more I read, the more frightened I get. About ready to ask DH to get a safe, install it into a wall in the house, and hide it behind a picture frame! (If you want to see what's scaring the living daylights out of me, a search of Google News using the words oxycontin hillbilly will give you quite a list of articles...)

I think it's time for me to eat my cereal while looking at the Wayside Gardens catalog. Armchair gardening is always good for the soul!

Love, =empresse
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News Alert! Jmac Came Through Surgery Just Fine!! 06-15-2004 - 08:42 AM
Tuesday the 15th and All's Well!
Jmac Came Through Surgery Just Fine!

NewsFLASH reporter "empresse" was contacted by a source close to our beloved Jmac, known to us through her writings as none other than DH! He reported that she is all done with the surgery and came through it "just fine."

So our dear sister is now a Crowned Princess! Join me in rejoicing! (I did know that I was the "contact sister," which is an honor indeed.) ("Jmac" is a new and a true-blue Friend to me -- thanks to Hystersisters.) I'm going to hurry up and post this. Hooray!
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Why isn't it tomorrow yet? 06-14-2004 - 09:24 PM
sigh. I could just scream. Or cry. Or swear. Probably cry. I'm actually about to. Gave cousin J three rxs...DH came home with two. Luckily, one was the Oxycontin. The missing one is the oxycodone. That's the breakthrough medicine, of which I've been needing more lately. I have one more dose left. Why does this never go smoothly? It's just dropping off and picking up Rxs ... I swear, I'm going to have to do it all myself next time. I'm worried that maybe cousin J. dropped the other paper on the way in... of course I just trusted that everything was OK and didn't look in the bag until it was time to take the medicine... they're closed now; nothing to do but wait for morning.

It's not DH's fault, and I hope he didn't get the impression that I thought it was. I didn't let on how upset I am. But the tiniest thing goes wrong and I am just a wreck, lately. I am just totally devastated over a stupid bottle of pills.

Maybe the person who took in the Rxs thought the oxycodone and Oxycontin were the same thing? And just didn't fill the 3rd rx? I have to stop wondering and worrying NOW, because it is NOT going to help anything.

It could have been a LOT worse. The missing one could have been the Oxycontin and then I would have been in serious pain.

At least I have what I need for tonight. I think I only have four more pills to take tonight. Oh, and mustn't forget to change my patch. Last one of the 75s. There's a horrible big red crying face that I should add to this post. I just feel like I'm at the end of my rope.

argh and grr and Oh Well. Tomorrow's gonna be better, right? Why isn't it tomorrow yet? I wish... eh, the sooner I take my medicine, the sooner I get to go to bed, and sleep, and pray to sleep the whole night and then it will be tomorrow.
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still Monday, still ouchy and in a fog of unknowing 06-14-2004 - 06:19 PM
Still Monday, and not even dark yet! I am very ouchy; I suppose the lesser dose of Oxycontin this morning contributes to that. I would have liked to be able to cut down to 40mg but it looks like that's not in the cards yet. I'll try -- on purpose, not because of nearly running out -- after I put on the higher-strength Duragesic patch on later this week. Along with the weird sensations, the deep nerve pain has returned with a vengeance, and I think this is a direct result of the weight-bearing exercises. I put my full weight on the leg today, and maybe that was a stupid idea since I was on the lower dose of pain meds... should save that, too for when I have the new patch on.

I had myself talked into the nerve pain being "in my head," I think. Why else would I on the spur of the moment suddenly decide to do a full weight test? I don't weigh a whole lot, and it was only for the count of one, but nonetheless I was pushing myself.

It's not in my head.

The foot looks a little bit more like a foot, now that I've rested it. Maybe the exercises are getting the fluid to move some, and it is a bit of a delayed result? I know the fluid moves slowly. I really need to study the lymphatic system to understand this better.

So, am I exchanging one pain for the other? I think that is a distinct possibility. That I am slowly getting back to where I was in February, when the nerve pain began but I didn't have lymphedema. I am still waiting for the CAT scan results, of course... I could still have a lymphocele pressing on that nerve. I just have to hold my horses and wait.

The case coordinator for the visiting nurses called today, about me going to the lab. She called "Diana," who said she would talk to me about the whole thing on Friday. So I don't have to have any blood drawn this week! Hooray!

I'm still in a bit of a funk. Could be just the fog of unknowing. Maybe tomorrow will be better. Love, =empresse
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still monday 06-14-2004 - 03:54 PM
Still Monday...
Went to pick up the Rxs. Cousin J. went in -- I really could have stayed home, which occurred to him halfway home ... but it's good to get out for a drive. Plus, without me along he'd miss my scintillating conversation! heh. After "crutching" back in I see that I have a sausage instead of a foot again. I don't know the answer. I'm not even sure I know what the question is! Too tired to write more -- maybe later? Nap, for now. =e
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Just Answer the Questions 06-14-2004 - 11:06 AM
Monday June 14th 2004.
Waiting for Dr. Janet's office to call, then going for that pretty drive with crazy cousin J to pick up Rxs to be filled. Hoping not to wait all day for this phone call...

Woke up with a foot at the end of my right leg this morning! Why? Even though yesterday it was the fattest stuffed sausage ever, all day and into the night despite having put compression sleeve on it and mostly sleeping with foot up all day. Did all the exercises. Have not "crutched" since Friday's outing. And on one less Oxycontin. More pain, but less swelling. What is the factor?

I've been up for 2 hours now, and the swelling is minimal. Have not done any exercises yet, but I did make 'walking motions' with my feet when using the wheelchair to get around. (This is not on my list of exercises; I just invented it.) I am experiencing weird sensations, sort of like "gas pains of the leg" -- wondering if this is the fluid in motion? I'm doing something right, and I don't know what it is!

Last night I agonized over recording "job status over the past 15 years." I have a terrible memory for dates, and this is made worse by my memory problems (probable side-effect of pain meds) so I ended it with a bit of commentary. It's still sitting in my EZ Word program, not yet printed out, because I'm not sure whether the commentary will help or hurt my 'cause.' I have this need to explain that I'm only applying for temporary disability and that I'm doing all that I can to get fit to go back to work. I'm thinking that maybe this is too much information. This questionnaire is, like, obsessed with info about lifting and carrying... I'm just not sure what they're getting at. My problems are not caused by my work... The Voice, that internal critic, says, "Just Answer The Questions," and, "Yours is not to wonder Why..."
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Sunday, in which I do a lot of sleeping 06-13-2004 - 04:52 PM
Sunday, 13 June, 2004
I am not myself. Exhausted. Woke up at 5:30am, stayed up until 8 or 9 am then back to bed until 4:30pm and still woke up achy and sore and exhausted. I need to tackle this paperwork so I can mail it off tomorrow. I was going to go out with DH last night, but after dinner (arano came over) and a quick visit from next-door neighbor, I still needed to shower...after doing nothing all day, my right foot was huge and I just ached. I still took a shower, but didn't go out. Did some more reading on lymphedema treatment instead & worked on a list (hey, jmac...) of questions for next Friday's appointment with the gyn/oncologist.

I'm tired of thinking about, writing about, feeling, and dealing with health issues. I want to hurl the crutches and wheelchair into a ravine and send all the prescription bottles after them -- I want a miracle.

Sorry I haven't been as regular-like-clockwork with my journal. And that it hasn't been very interesting lately. Maybe it will be better next week. =e
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Saturday morning -- no, it's after noon. 06-12-2004 - 12:58 PM
Saturday, 12 June, 2004
I slept fairly late, slept a lot in the night but did wake up a few times with pain. I'm worried about not having enough of the breakthrough medicine now too -- wish I could just take ibuprofen as needed but the Warfarin (blood thinner/anticoagulant) makes that not a good plan. I'm lucky to have the OK to take the Vioxx once a day. I hate being on such an array of drugs, and then still to have breakthrough pain just seems crazy. Seems like I ought not to feel a thing. All of them are working together, though -- trying to take one out of the mix just makes me feel how the ongoing pain really is being managed properly with this array of pills, this insane cocktail of pharmaceutical drugs. I'm grumbly because I'm going to have to arrange an early-morning drive to Dr. Janet's office on Monday -- if I could just keep track in advance of when I'm going to run out of things that need a written Rx & can't just be phoned in, I could get these mailed to me and have them in hand to get to the pharmacy when I need them. Then, too, it's confusing because the plan will only fill some via mail-order, so I have to keep on top of those in advance. I can do this. I can be super-organized-girl. Grr. Time to go do exercises. Starting with the "easy" ones.
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A Yucky Mishap, and another disjointed journal entry 06-11-2004 - 10:41 PM
Friday, June 11th (I've gotten it wrong all day. Oh well.) First, thank you for all the advice & "comments" and caring! I finally sat down and cleaned out my inbox (and my out box) so I can do the PM thing again. This week has been so strange. I can't believe it's really Friday.

It's the clinic that isn't (maybe isn't) meeting my needs. I haven't learned the massage yet & wonder if they are really qualified to treat lymphedema. The gyn/onc nurse said specifically that they were, but I don't understand why I haven't had/been taught massage and why I still have not been wrapped/been taught to wrap. The exercises are definitely not helping the nerve pain -- as I've said, I expected to feel a lot of muscle pain -- well, now it seems like the swelling after being better for a few days is now worse. And I am so uncomfortable. Sitting, lying down, standing -- nothing is quite comfortable. Of course I've had a lot of excitement and a lot of excursions, capped by today's CT scan which was quite a trip.

I stayed up later than I should have, then was so afraid of oversleeping that I woke up 2 hours before the alarm. (I always do this) Then, when the alarm went off, it didn't make any sense to me. I'm so lucky to have DH for times like this -- he made sure I got out of bed! I don't know how I spent 30 minutes in the bathroom getting ready, but somehow there was a phone call saying my neighbors would arrive in 5 minutes, and I didn't have my shirt on yet! Well, I did have a bit of a mishap, a yucky one.

I'm still supposed to douche daily. I'm not being as regular as I should be with it. We had a problem with the sink being clogged and it was difficult to prepare the douche without using the sink, which should be no excuse since I found a way around that...it's just a hassle to mess with all the time. Soothing once I actually get it all ready. The only comfortable place is sitting on the toilet. Usually -- Always, except for this morning -- the toilet is clean beneath me. But today I was afraid of awakening DH with the loud Whoosh of the flusher, and LUCKILY the only thing in the water was urine (and paper). Sorry this is gross, but this is how my day started and why I was so frantic. Somehow the applicator thingy slipped out and at the same time came loose from the tube, so there I am with a tube squirting peroxide water on my foot and the applicator thingy floating...UGH UGH UGH. I had to reach in the icky water and fish it out, get the hot water faucet hot hot hot and wash, wash, wash it -- and then I was still too grossed out by germs to reinsert the thingy. (I decided to boil it, but didn't do it while DH was still at work -- don't know what pan I'm going to use or maybe put it in a disposable container and pour the boiling water on it ... so it is still waiting to get boiled...wah! sigh...) So that is actually how I somehow managed to let all that time happen and still not be ready. Plus, me in the morning NPO is a sight. Me without coffee is a trip. That makes no grammatical sense whatsoever.

Anyhow, somehow I managed to be fully clothed and ready to crutch. My neighbors are really sweet to be getting up in the pre-dawn hours to drive 1/2 hour minimum in rush hour traffic (luckily we didn't get stuck in it) -- then they insisted on paying for parking and taking me out to breakfast after. I get a weird icky feeling when they communicate with one another sometimes -- neither seems offended by the other's attitude, but sometimes the derogatory comments just make me want to be anywhere but there. They are So solicitous with me -- So worried that I will fall -- so very very kind to me, that I feel guilty about my feelings about their interactions, feeling that it's hard to be around them.

I was FREEZING while waiting for the CT scan, after drinking the nasty liquid. The guy who did the scan was kind of weird -- way different from previous techs -- no easy cameraderie going. He gave me a blanket to wear home -- the second or third in my collection now. Today was hot and humid, so I was able to shed the blanket pretty quickly and felt normal-temperatured during breakfast. I crutched outside for a smoke and ran into someone I knew! I swear, I can't go anywhere or do anything without running into someone I know! So she helped me get back indoors when I was done. (I know, I shouldn't be smoking any more, but I have cut down and will eventually quit completely.)

By the time we got me home, I was about dead. I hurt so badly I didn't know which way was up. I figured out which end of the bed was for my feet, though, and slept. And slept. Giant fly tormenting me (he's still here, on the lampshade now grr) And slept some more. I know I need to get my stockings off and go back to bed and lie down, and I know I will go off to sleep without a problem. I caught up on a few sisters' journals in no particular order, but I think no matter how much I care, I am going to hit the hay after I finish typing this. YUCKY well there is one less fly in the world now. Thing was tormenting me.

arano came over & we played a board game, ate PB&J sandwiches, drank coffee. DH went out to hear a bluegrass band, and I am going to stop typing & go to sleep. OH mustn't forget my patch. And I am going to run out of Oxycontin again, going to have to get up to the office bright and early Monday morning somehow for written Rxs again. Why can't I get it together to just have her mail them? GRRR! I can't. I just don't have it together. Okay, before I go into a tailspin, time for bed.
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Something Is Not Right 06-10-2004 - 10:01 PM
hmmmm is this supposed to get worse before it gets better? I think Not. Oh, I expected muscular aches and pains, but not increased swelling and nerve pain. Tomorrow I have to get up SO early for that CAT scan...and I'm gonna want coffee SO badly... I'm so full from tonight's dinner that I can't imagine Ever being hungry Again, though. DH made shishkebab and taters and green beans. He's getting really good at inexpensive yet healthy, fresh meals!

I am seriously worrying about being so swollen. It's not just that it's ugly, not just that it's uncomfortable, but also after the first few days when I saw improvement, now I'm having swelling that's worse than before the exercises. I'm going to start measuring and keeping track, even though it will probably send me into tears each time. I just have this feeling that Something Is Not Right. I don't think the therapist quite understands that there are two separate things going on here. I'm telling her about a different kind of pain than muscle pain, and somehow I think it's not registering. I'm also upset that the left side is swollen now, too -- wish I'd measured the original size myself.

The therapist goes on vacation next week, then I go three times the following week. She's going to wrap my leg then. Finally! I am going to make a list of questions for her, using my books (especially the one she recommended) and will post it here just in case anyone else has lymphedema and needs reference material.

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a tiny bit of progress 06-10-2004 - 01:30 PM
Thank you, Sisters, for all your kind words and thoughts! Every time I start kicking myself while I'm down, one or more of you comes along to "dust me off" when I'm not doing it for myself. (Quoting Tam there.) Tam hit two of the biggest nerves in the last comment -- first, "It feels like everyone is making it out to be your fault that you're not well doesn't it? I HATE that!" and second, "On top of all that, you've got a bunch of morons who should be looking out for YOU, but aren't." Right now of all the things that are getting me down it feels like those two are the biggest.

The good news is that my appt. with the gyn/onc is rescheduled for next Friday -- "Diana" called as I was getting in from the clinic. I also had my last visiting nurse visit. She brought some info about labs from the 'case coordinator' and now I have to get the doctor's office to fax the lab -- on their form -- I sort of kind of thought maybe the VNA would coordinate that with the doctor since she talks only to them and never to me, but no, of course not. So I have to get on the phone again with "Diana," if I can ever reach her... she was quite perky during our phone conversation...

The clinic visit was exhausting. Got some weight-bearing exercises -- very minimal -- and learned some new other ones. Now the whole leg is screaming -- the muscle pain is a "good" pain, but the other is just Bad. I'm about to lie down for a nice rest. I know I was going to say a lot more, but I can't think right now. I'll be back...
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communications breakdown yet again 06-09-2004 - 08:14 PM
Don't know why I'm so sad and sore and listless. I prefer to know why things are going on, even when I can't do anything to fix them. Well, I do know that once again I am being frustrated by the doctor and her nurse. Gyn/onc has her own doctor's appointment, so can't see me on Friday. I left a message about rescheduling and didn't get a call back. Then, while waiting for the call from "Diana" that never came, I missed the nursing people's office hours. I did complete the medications portion of the Soc. Sec. form (Dang I take a Lot of Drugs...) so at least I got something done.

I just want to go for a walk. No crutches, just a walk. I'm doubly upset about what that "case coordinator" was like on the phone (while I say to myself, "Get over it already, girl!&quot -- it was like she was insinuating that I want to be in the wheelchair, saying in a not-very-nice-tone-of-voice, "What does the doctor say about you being in the wheelchair?" GRRRRRRR! And Waaah! I'm mad and hurt, both at the same time. Well the doctor doesn't say anything because my "real" doctor is sick, herself, and her covering doctor has not told me anything. "What's the prognosis?" people ask me. "********** if I know." I'm sorry that my oncologist is sick. I really don't think the covering doctor is doing me any good, other than looking at blood levels. Everyone seems to assume that she is communicating with me -- NO.

Wah wah whine whine and meanwhile there are lots of people way worse off than I am. I am feeling very self-absorbed (and feeling guilty about it) right now. Really, I just want to sleep it all away and wake up like it was all a bad dream.

I'll bet it's this application process that's getting me down, now that I think about it. All these questions to answer that just keep me dwelling on everything that has happened medically, and I'm not looking outward -- that, on top of being exhausted. There. I have my explanation. Am I happy now? ...
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grr and blah 06-09-2004 - 03:17 PM
Wednesday (afternoon) June 9th
Well, I filled out 2 forms and laid down to do my exercises...and fell asleep. I didn't take the Vioxx and I'm not feeling any more 'hurty' than I was yesterday -- better than yesterday, actually. I also forgot the antibiotic and senna tablet. Grr. During my sound sleep, apparently the gyn/onc nurse "Diana" called to reschedule my Friday appt. Grr. Naturally I got her voice mail. Say it with me ... GRRRRRRR!

At least I'm not all weepy any more. I called one of the labs and they need a fax on one of their forms from the doctor's office. I was going to deal with this at Friday's appointment, but now I will have to add this to my call from Diana. I'm also going to call the visiting nurse people -- maybe they can have this taken care of for me? I'm not going to hold my breath, though.

I just feel generally Blah. I had a few grapes and a piece of salami, and I think I'm going to call that "lunch" for today. arano & I didn't go up to the bookstore today -- she was doing some things at home with her computer, and it's awfully rainy for an unnecessary outing for me. Although if it's raining tomorrow after I get back from the clinic and if she hasn't gone up to the store yet, I still might go. I just feel wrung out. This could all be delayed reaction from the busy weekend. I really, really don't know. Obviously I haven't gotten that burst of energy I was looking for/praying/hoping -- not physical, not mental, not creative.

Well, typing grr and blah into my journal isn't going to change anything, and I doubt it's going to help anyone (including me) so I think I will get offline, work on my list of medication for the Soc. Sec. paperwork requirements, call the VNA people. At least I can have some paperwork to show for my day.

Love,
=empresse
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Arrogant "case coordinator" for visiting nurses 06-09-2004 - 07:57 AM
Today is Wednesday, June 9, 2004.
I am so far behind in reading everyones' journals! Yesterday I just had to stop writing abruptly and put my foot up because it was throbbing (whole leg) and so swollen. I don't know if it was a delayed reaction from the weekend, or if it "likes' the exercise of being on the crutches (I didn't use them at all Monday or Tuesday) but it was swollen more than it was on Monday. The extra pain was probably due to having run out of one of the medicines. (I ran out of lorazepam and was trying to do without it but obviously it is working with the other medicines and specifically works to stop the throbbing sensation.)

I got a call from the person coordinating the visits from the Visiting Nurse people. She woke me up from a sound sleep, first-off, and then I felt that she was being unnecessarily nasty with me. I didn't tell DH because I wasn't sure if it was just me being overly sensitive, but after thinking about it and after telling arano, I think this woman was in the wrong. First, she started off telling me about labs in the area that I could go to. I said, "Oh, you're not going to come to me any more?" ("You" meaning the nurses in general -- this woman doesn't come herself.) So she started asking questions. Part of it was her tone of voice -- she really sounded antagonistic. First she said something like, "you mean you don't go out of the house at all?" and I explained that I have to arrange for rides since I can't drive, can't walk, am in a wheelchair. This is where I think she stepped out of line -- "Well you're not always going to be in a wheelchair (or something to that effect) What did the doctor say about it?" I said, "the doctor hasn't said Anything about it," started crying & went into a monologue about how the doctor doesn't tell me anything... Somehow the conversation turned to her asking me "which doctor" anyway since this woman talks to the one covering for my oncologist, then there's my oncologist, then there's Dr. Janet... I was so flustered that I can't even remember the conversation straight. Anyway she grilled me on when DH leaves for work and comes home, and finally she said they would come here "either Wed. or Thurs." -- I don't know, seems to me they would want the "business," being that they get paid to come here... Anyway if I don't get a call in a few minutes I am just going to call them and say that I will just go to the lab, that I've found myself a ride. I have the opportunity to go up to the bookstore with arano today and then tomorrow morning I have an appointment with the clinic. (ironic -- me saying I can't get out, then having conflicts because I won't be home...) Sorry this is so jumbled but I can't remember the conversation point-by-point and I am still upset over the whole thing.

I am feeling overwhelmed, most of all. I just want to curl up in a ball and cry and cry. I should've told DH. Now I don't want to bother him at work with it. I'm alternating between a cold rage and just collapsing into tears. I have paperwork to fill out and I'm just going to go do that now until I can sort myself out.
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E's Wedding 06-08-2004 - 12:16 PM
E's Beautiful Wedding
The weather was well-behaved for this time of year -- not too hot nor overly humid, and not a drop of rain. We arrived early for the pre-ceremony photos. Since I had been "laid up" during most of the preparations, I said that my "job" was just to show up looking pretty, and that turned out to be true. While I was delighted to be there (I had to miss the shower, and nothing could have kept me from the wedding!) I was also sad that I really had no role at all. If I hadn't spoken up to say that I wanted to have a couple of photos with E., I don't think I would have been in a single one. DH had gone off to the Mens, and I was just sitting in the wheelchair -- luckily, he didn't think I was being too pushy.

It was a traditional wedding, in a church with the reception afterwards in a hall. The groom wasn't allowed to see the bride on their wedding day until she walked down the aisle in her long white dress. E. even wore a veil!

As all seating was done using the side aisles (the center aisle off-limits to all, being reserved for the wedding party's grand entrance in accordance with tradition) I had a scary moment, thinking I'd be watching the wedding wedged between the big amplifiers and one of the pews, but DH muscled me through. I slid from the wheelchair into my assigned seat, third pew from the front.

Andre did not like the organ music -- he made it all the way down the aisle, but with his hands over his ears. I'm not quite sure how the rings got up front, but as there was no delay during that part of the ceremony they obviously managed somehow.

I got all choked up when the mothers lit the candles on each side of the Unity candle -- I don't know how E. could have fit me into that part of the ceremony, especially with my lack of mobility, but I still felt very left out. (This is one of my worst failings -- I'm too sensitive about not being included.)

DH said he had to look at the groom's side of the church the whole way down the aisle because he was on the verge of tears. E was shaking, "like a leaf," he said, as he escorted her to the front of the church. Her voice normally carries well, but she was totally inaudible when she said her vows. A friend performed an original song, singing and playing acoustic guitar -- and then it was over -- Mr. and Mrs. S.G. made their way back up the aisle at the end of each pew, hugging everyone. DH whisked me around to the elevator and outside to join the crowd blowing bubbles at them when they came out of the church. I entertained a Very Bored Andre with the bubbles while we waited for the bride and groom.

The after-wedding photographs seemed interminable! Andre was really fit to be tied -- he had had more than enough, so most of the photos with him will show him trying to beat a retreat. DH tried to amuse him with the kettle drums at the side of the altar, but E put a quick stop to that. She seemed very tense during the whole photo shoot.

She really relaxed at the reception, though! They hired a great DJ who got everyone involved. There were lots of little girls there, and they all had fun dancing. S. was great with the little ones -- I really wished I had a camera to photograph him leaning down low to dance with DH's (and My!) niece.

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wasn't really finished writing, I guess... 06-07-2004 - 10:53 PM
11:15-ish PM Monday Night.
I'm achy. I should go back to bed. Or, if I'm going to sit here and write, I should write about E's wedding. But that's not what I want to write about. I want to write about how I feel. Not "whine" about my aches and pains (actually it's important that I record those, too, for reference) and not "vent," but just write down some emotions and some 'intellectual feelings' about various things. I don't even know what, exactly.

First of all, I've been following so many sisters' journals. All of us writing, all at the same time, is a unique experience -- one I've never had before. It's like we're all in this together, even though we're scattered all over the globe. I think this is helping my recovery immensely. Knowing I'm not alone, for one thing, plus all these feelings of compassion, both sympathy and empathy. Hoping also that my journal will be helpful to other women, now and later on. I was hesitant at first, afraid that since I'm having side-effects it would be scary for others to read. But maybe someone who has these same things will stumble upon my journal and realize that she is not alone.

I worry about the nerve pain. What if the CAT scan shows another lymphocele and I have to endure that horrible Interventional Radiology department again ... also, what if it shows nothing ... then I have to find the source of the nerve pain ... so afraid that "they" (whoever "they" are) will think it is "all in my head..." (Right now I guess "they" are the faceless people in charge of approving the temporary disability application ... also maybe the physical therapist who is working with me on the lymphedema ...) I am worried no matter which direction I am headed after the CAT scan. It's silly to feel worry -- whatever the cause, either I go back to the VIR department, or I go to a neurologist...

I'm a bit down on myself right now for not really accomplishing anything to speak of in these past few months. When my uncle was laid up with phlebitis after surgery for arteriosclerosis, he made this illuminated journal in a gorgeous italic hand, and embroidered a pillow -- me, I have haphazard scrawls in one journal, medical details in another, the sort-of-beginnings of a book manuscript, one single chain of crochet... nothing really to show for all this "down time." Oh, and an online journal. Of course, my uncle didn't go through the same kinds of things I have been. But I really feel like I'm not fulfilling my potential.

I am just going to pray/hope for a spurt of creative energy.

Finally, today, I had a dream that I almost remember. I may get one for the morning -- hope so!

It's been really weird being so isolated from my circle of local acquaintances. arano is the only one who has been consistent, steadfast, loyal. -- oh, and the old housemate who came by this morning. He'll be local again soon, and I know that he, too, will be consistent -- he's proven that even long-distance. I'm really sad about some of the people. I do understand that it's hard for some to deal with illness. But understanding that doesn't make it any happier for me. And then I am so lucky to have so many friends far away who call often. There's no sense in being sad about the ones close by who don't call or visit, when I have so many in faraway places. It's just hard sometimes, getting sudden realizations -- I think B's visit this morning kind of pointed out (to me) how so many other people have really totally failed me in terms of real friendship, despite my being well-known and "popular" when I'm out and about.

Silly to dwell on that, though. I think I've about written myself out now. Off to bed!

Love, =empresse
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Some visitors and my telephone interview with Social Security. 06-07-2004 - 09:39 PM
Today is Monday, June 6th, 2004. I had to find the date on the computer, since I took my wall calendar down today for help with the telephone interview and have it in a pile of stuff waiting for me to put away.

My old housemate came by this morning with my "usual" -- a tall latte with whole milk. We sat & talked for a couple of hours, had a good visit. He's going to be able to help out at the store when he gets back! His offer! No charge, just wants to help. I will call R. tomorrow & tell her. (I hired him at the store I used to manage, and he's been working for a chain bookstore in NM, so he is probably more on top of things in the book business than I am right now!)

My next-door neighbor came over right after B. left. She had called last night to see if I'd be around, wanted 'tea and conversation.' I felt badly about putting her off to have B. over first, but he was only in town for a few hours, and she wasn't comfortable coming over while he was here since she doesn't think she knows him. (I think she might at least be acquainted with him, but maybe I'm wrong...) So she brought tea bags and some yummy bakery cinnamon bread. She talked a lot about a past illness of someone in her family (I was a little unclear about whether it was an aunt, a sister, or what) and I think she had a nice time. I got my Social Security phone call just as she was leaving.

It's a small world -- I used to work at a Chinese restaurant with the woman who is "handling my case!" She talked to her supervisor and called me back -- wanted to be sure it wasn't some kind of 'conflict of interest' thing. She said that as long as I'm not uncomfortable talking with her, it's no problem on their end. So it's great to be able to put a face to that person at the other end of the line! She's not in charge of approval/dis-approval of benefits. It was a L-O-N-G interview! I still have to send in some info since I'm on so many meds (they need a list, plus what each is for, side-effects, and prescriber -- I'd probably still be on the phone if we'd tried to cover it all!) plus, I'm going to list some other things for her on paper since again, they're long, long lists of different pieces of info. For instance, they want to know my work history for the past fifteen years! And info on all the medical testing. About 1-1/2 hours into the interview, I started getting tired & a little weepy. I get confused with dates and I need to make a calendar chart with dates of everything. It's all in a couple of notebooks but really hard to find, and I get frustrated leafing through page after page. (That was when we decided to do parts by mail.) It is still going to take up to 3 months for them to approve/disapprove! What on earth do people do to get by in the meantime? We can make it. We'll scrimp and save and do without, and delay payments of what we can -- I know we'll get through. DH might wind up having to sell his car (I really don't want him to have to do that) -- I just really wonder what happens to people who have to wait so long for benefits. R. says that's the reason for a lot of bankruptcies.

I just really hope that some day I will have an abundance instead of a lack, and I want to set up some kind of 'scholarship' type of thing to help orphans. (This has nothing to do with medical disability, just something I've wanted to do for a long time.)

After the phone interview was done, I ate a bite of lunch and collapsed into bed. No exercises, just sleep. I ache all over, including my arms & hands (probably from "crutching&quot. DH woke me up for dinner, and then he went to bed -- I'm only up now because of having to take all the zillions of pills. This morning I took them all at one sitting -- I think it's better to space them out a little. Better for the tummy. I'm out of one of the Rxs, too, and forgot to make the phone call to refill it & to ask DH to pick it up. I may feel the effects of not having taken it by tomorrow evening, but I'm only missing tonight's and tomorrow morning's dose.

Can't believe how tired and sore I am! It even hurts to type. Tomorrow I will be doing a lot of typing, between filling in the blanks for the Soc. Sec. app. and finally at long last writing about E's wedding. Since I'll be focusing on dates and doctors, I may even finish the History section of my journal! Don't hold your breath -- it's not a Promise.

Anyway, that's enough for now. Just a few more pills to get down and then I can return to bed and blessed sleep! Lots of love,
=exhausted empresse

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Sunday. 06-06-2004 - 11:00 PM
Well, it may be Tuesday before I get to settle in and write a detailed account of E's wedding! I got a nice, late start today. Coming home so late last night meant that I wasn't awakened by pain & the need for more medicine, so I really slept in. Didn't even pay attention to what time I got up. (Today is Sunday, the Whatevereth of June...lights out, DH asleep for the night, so I can't see the wall calendar.) We were out of milk, 1/2&1/2 for coffee, and cereal, so DH went to the grocery store early. I had some black coffee and instead of coming here as usual, I started playing around with a Tolkien name generator and wrote a little political parody using the Tolkienesque names. Just as I poured the milk into my cereal, I got a phone call from one of my New York friends. She very kindly called back after a few minutes, since cereal with the milk already on it isn't exactly something you can put aside to eat later. Yucky!

Needless to say, I never did get here. I did one round of exercises and promptly fell sound asleep again. They are really working to get the fluid circulating -- despite all of the weekend activity, my foot looked nearly normal when I got up. It's back to Size Huge now, though. DH took me out in the VW bus -- it's a 1967 (?) old thing, fun to ride around in. I couldn't get in by myself -- I put my arms around DH's neck and he lifted me to the seat. Romantic, in a sort of hippy-dippy way...

We went to the bar, and I sat on the bar stool (drinking CocaCola) for as long as I could, then back to the wheelchair at a table with my feet up on a chair. I was kind of expecting a huge surprised welcome, but only a couple of people made a fuss over me... eh, what can you expect from a bunch of drunks... hehehe I say that with all affection -- the Sunday afternoon crew really don't fit that description! I was a little disappointed that the bar owner didn't at least say hello, but for all I know she, for one, could have been "well into her cups" by the time we rolled in. (Heh...get it? Rolled... ) I know I'm not exactly her favorite customer, but I did expect a "Hi, How are ya." I expect too much sometimes and get my feelings hurt because of it. (You may have noticed that from previous entries.) Well anyway I didn't get my feelings hurt today -- just observing.

I "crutched around" the back yard looking at all the new hostas -- the variegated ones I planted last year look like they're getting ready to bloom! -- and only one of the new ones looks wilty. My Bonica rose is just blooming like Mad! I told DH I would teach him how to prune her to keep her blooming all season. He found me a folding chair with a built-in footrest and set me up with a tall glass of OJ while he prepared the pork chops for grilling. I sat there with both kitties and watched a colony of ants milling around in the cracks between the patio stones, but then I got too chilly and achy to keep him company for the whole grilling time. Dinner was fabulous! We had good conversation and I even got to hear "Fanfare for the Common Man" for the second time in two weeks on the classical station!

The phone rang all through dinner -- after we finished, I picked up the next time it rang -- my old housemate is in town overnight, (the one who sent the wonderful book of Peace posters) so he's going to come by tomorrow morning for a visit! His girlfriend will probably get in touch with me later in the week -- she's staying with her sister & is back for good, but B is going back for a little while to keep working there. Luckily my (scary!) telephone interview isn't until 1:30, so it all times out perfectly.

(So don't worry when you don't see a morning entry from me tomorrow, too.)

With all the time I've spent noting the details of today, I could have told most of the wedding day story. I always do this in written journals as well. I put off writing about the Big Important Stuff (and sometimes never get back to it) because I want to have some sort of "perfect" mindset, and the little minutiae of ordinary days is what ends up in the journals. That and the Venting about things. Odd.

So I am quite achy from all the "crutching" and from my exercises, but not in terrible pain or anything like that. Sleeping late and taking the long afternoon nap was very good for me, I'm sure. I'm pleased that my appetite is still so healthy thanks to the Wonders Of Modern Medicine! DH has been feeding me ice cream for nightly desserts -- tonight, he surprised me with some kind of heavenly concoction (I should check the freezer to tell you who made it) with strawberry-swirled ice cream and tiny chocolate-box-style chocolates throughout! mmmm -- now I understand that expression, "to die for." My other surprise today -- we are "on the same page" -- he bought lubricant... *giggle* So my dilator won't be sitting in its little box for too much longer. He, too, is pleased with my nearly hair-free legs! It's going to take several more sessions to get all those long hairs, but I don't have Man-legs any more... I actually kind of planned to initiate something last night after the big day, but he was totally exhausted and fell into a sound sleep quite soon after we got home, and I pulled my chin-on-chest-while-sitting-at-the-computer trick by accident... and he got out of bed without awakening me this morning... I'm not quite ready to do more than hugging and kissing yet, so it's all just as well. I want to not feel achy. I mean, I don't have to be totally pain-free, but don't want that "I've-crutched-too-much" feeling to get in the way. And to begin with it's going to be so "tame," anyway -- which is kind of exciting in itself. Like a schoolgirl with a new boyfriend planning out "the base system." *giggle*

Hmmm. Now that I've said that, I don't remember "the bases." I think "first base" was just kissing, and "second base" meant "letting him get under my shirt..." Silly!

I was quite old by today's standards when I actually lost my virginity. Didn't have any real boyfriends when I was a "schoolgirl." Lived with a Very Strict Grandmother throughout highschool ... and times were also different then (I'm 42). I was rather scandalized hearing about girls who had done "it," "went all the way" with their boyfriends in highschool. It's so funny to think back on all of that kind of thing now! Well, anyway, it's been so long for us (back to DH and me) that it really is going to be like easing into "going all the way" for the first time! And that is exciting! I'm going to look at the bright side of it all, and say that we're lucky to have had this experience of forced celibacy!

eek it's after midnight??? I should have just written about E's wedding! Must roll into bed!
=empresse



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excited and exhausted from e's wedding! 06-06-2004 - 12:21 AM
It's a little after midnight -- ooh, around 1am -- I'm still wound up after E's beautiful wedding! I'll post tomorrow or Monday in full detail, when I'm not so tired. For now, I'll just say a little bit.

E's dress was lovely, and she looked like a dream. (I never got my hands on MW's snag, but somehow they made it unnoticeable.) All the bridesmaids looked pretty as well, especially MW -- with her on-going slimming, she looks prettier by the day. So many people were there, both at the church and at the reception! I had met many of DH's ex-wife's family at Andre's 1 year birthday party, and they all remembered me and were nice to me. And of course his brothers all love me. I had some awkward moments with the photography sessions -- I was included in some because I spoke up -- asked DH if I was too pushy & he said I wasn't at all... I told him I had needed to speak up during the pre-wedding shoot because there was only one chance and I didn't want to be miserable about it. (He was in the Men's fixing his pocket hankie when I 'stepped up to the plate.') The awkward bits came after the wedding while we were still in the church. I got over it -- by the time we got to the reception I was fine. I had a tiny glass of red wine (it didn't even make me tipsy, which was amazing) and truly enjoyed myself. I even got to dance, first with DH and later with the groom. "Dancing" meant standing in one place and swaying, me holding on for dear life... but it was worth it. Especially my dance with DH. He is So handsome in a tux! What a proud father he is.

Before I fall asleep with my head on the keyboard, I'll just say that I am a proud stepmother with a terrific new son-in-law! Now I have two sons-in-law who are each very much like DH -- that is a testimony to what a good father DH is to his girls, that they chose men with qualities like his.

Good night, sisters!
=empresse (still glowing!)
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E's Wedding Rehearsal 06-05-2004 - 11:15 AM
5 June, 2004
Last night was E's wedding rehearsal & dinner. I was sad that I hadn't been able to help her with the wedding. This was emphasized when the coordinator called the moms up & I was not one of them (but of course it would take forever, me with the crutches) and then later after dinner when E & her soon-to-be husband passed out the thank you notes and gifts. DH could see that I was trying not to cry...

This is the closest I will ever be to having a daughter get married, and I am just a spectator. Oh well. At least I'm alive & can be a spectator! I had to miss the shower entirely, so at least I'll be there for the wedding. I must count blessings and not feel so self-absorbedly sad.

Can't help feeling a bit left out though...

DH is such a great father! E's card to him was a masterpiece -- it brought tears to his eyes. They gave him an engraved pocket watch which he will be proudly displaying in the watch pocket of his tux today.

Still haven't gotten my hot little hands on MW's dress -- just woke up a bit ago. Missed the timing on pain pills. I ache where I didn't know I had muscles. And I must hurry to get ready soon. arano will be here before I know it to help me -- YAY!! -- and she found some black kneehighs so I will be able to cover up the brilliant white support stockings. Small vanities...

DH's ex-wife, the kids' mom, was on her best behavior at the dinner. She has always been nice to me to my face, anyway. I'm glad that we can all get along, as we see each other on all the major holidays.

Andre was SO cute -- his thank you gift was First Roller Skates and a little hockey set. He was carrying the puck around in his left hand and holding the stick lefty -- my little Southpaw! We'll see whether he can manage the ring pillow today. He's 2-1/2.

Off to a bowl of cereal.
Love, =empresse
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more self-absorbed musings on balance, a bit embarrassing... 06-04-2004 - 11:33 AM
I guess I really wasn't finished with that entry after all. It's about 11:15 now. After reading some other sisters' journals, I just sat for a few minutes, just thinking about my life and seeing why this relationship with DH is so important to me and why I was so deeply wounded by his comment. I never said what it was. It feels kind of like 'airing the laundry in public' but I think there is only one person who might read this who actually knows both of us in person, and I know it will help me to be honest in this journal, and I really need to just tell the plain truth.

In the past I have had some horrible relationships. As I got older, I gradually began having healthier ones, and even almost got married once. But the man gradually became more and more antisocial & withdrawn and started "talking down" to me and interrupting me in the middle of sentences when we would even talk at all...and then one day he grabbed me roughly when we were in line at a store checkout and spoke to me in a nasty tone of voice. To me, that said there would be a next time, and the next time instead of handling me ungently he was getting closer to being violent. I don't know -- maybe that never would have happened, and maybe I was over-reacting, but I suddenly was afraid of him instead of feeling love. Plus some other very personal things I was convincing myself were okay but really did not like. Terrible grammar here -- sorry -- it's hard to write about and if I stop too long to think, I'll stop writing. Anyway I broke off our engagement. Now I wonder whether a lot of his problems were due to too much artificial sweetener -- the man drinks diet Pepsi by the Liter jug. It's not my problem any more, if it ever was (but I think if you love someone, their problems are just as much yours as their strengths). So. Anyway. For a year I wouldn't even date. I was really stand-offish with men. It was traumatic breaking off that engagement because of so many things -- all the plans, the hopes for the future -- but I realized that all I wanted was to love and be loved.

So of course you might have guessed that this is deep-seated, arising from having been unwanted and unloved and emotionally abused in the past. Well, when DH said to me, "What am I getting out of the deal?" during that heated exchange in front of my cousin, it totally crushed me. I really felt worthless. I felt like a burden, nothing more. And I was saying to myself, "Why did I let him do it...why did I let him hurry up and marry me so I'd be covered by insurance...should have waited..." Of course, neither of us knew it would be anything more than a simple hysterectomy at the time. But still, here I went and put myself in a dependent position. Talk about "savior complex." DH totally saved me -- I'd be living with the cousins M if it weren't for him. And the unexpected complications cast me in the role of 'damsel in distress' -- and really, at this point I'm not bringing anything to the table, if marriage is a "deal." I'm not bringing in any money, I'm just a money drain with needs -- prescriptions and food and bathing supplies -- if it's not one thing, it's another. He has to do all the housework, earn all the money, do the budgeting and the billpaying and the shopping with the money, plus cook for us. While I just sit here at the computer or lie in the bed, writing or trying to draw or just falling asleep. I don't have the manuscript in any kind of formal shape yet -- it's still in scattered bits in various places (including parts of this journal that will be included) -- so I don't have anything to show for my days, to speak of. I'm not exactly full of scintillating conversation, either. I read the news of the world, but I just don't have a whole lot to offer in the conversation department lately ... seems like it's all about the last doctor's appointment or general doctor frustration stuff. So I'm feeling pretty down on myself as far as being an equal half of a relationship. And then for him to put it into words really cemented that feeling. I was foisted off on a family who didn't want me a long time ago, after my parents died. And I feel like I'm in the same position somehow. I'm just this child who needs to be taken care of, and I'm not offering anything in return. And I feel resented. Doesn't do much for my self-esteem.

All I really want is to be able to give love to someone who wants it, and to be loved by that same person. I want it in the context of an equable relationship, not all take and no give, and not all give and no take. The balance has slid badly here, to the point where I feel like I'm all take and no give. I really love my DH. He and I connect on such a fundamentally wonderful level -- normally, that is...normally, we are both silly together and never feel self-conscious -- we normally have such a peaceful and happy home. That's something neither of us were blessed with in the past. (Well, when I was very young, I was.) DH has suffered various kinds of abuse at the hands (or mouths) of so many people in the past ... including two failed marriages plus a long-term relationship that didn't include marriage. My past didn't have marriages in it, and less of the physical forms of abuse. And so what we have (normally) is special and cherished -- by both of us. It hasn't been one-sided. We are gentle with and kind to one another. So even though this was a stupid little spat over something minor, it feels really Big to me. Like something super-precious is at risk.

I keep going back to that balance of power when one person is sick and the other is well. And I know that's the essence of the problem here. I really think DH would be devastated if he knew how deeply hurt I am (and trying to put that into past tense) -- I really don't think he wanted that to be the result of his comment. I'm powerless -- and worthless -- in the monetary sense right now. It's not as though I can run out and make us a bunch of money. And of course money is the main cause of arguments between couples. And from his perspective, he is robbed of certain freedoms that come with having enough money -- and I am the reason. He can't just buy a guitar he wants -- or anything he wants. He's working day after day at a job he doesn't really like and in the end, all he gets is more bills. So, as far as "deals" go, I was a 'bad investment.' He has not said that. But it sounded like that was the direction that argument would have taken...

I hate being in this position. I hate being dependent. I hate asking other people to drive me here and there, hate asking for money, hate all those kinds of things. The one thing I have to offer, I can't even use my full body to express. At least I'm feeling a little bit better about my body, and I'm making some progress with these new exercises. I know it will come out all right in the end, but right now it just feels awful. I just feel like a Lump. An Expensive Lump. When I get to feeling better and I'm back on my feet, he'll see that I wasn't a 'bad investment' (again, my words, not his) -- I just want everything to be normal again. I want to be that happy newlywed couple. A while back I was talking about that in the journal, us tottering around together in our old age being envied by the young, having become a Shining Example of what a good relationship can and should be...

I've already told him that as soon as I can do it, he won't have to lift a finger around the house -- he'll get a Major Vacation from any kind of housework...if he'll just keep the lawn mowed, I'll do everything else. But that is still "someday."

The least I can do -- and the most -- is to make the bedroom a fun place for him to be. It's been the 'sickroom' for far too long. I don't want to cover over the relationship problems by using physical affection, either, but right now it seems like that's all I have to work with. And I don't even have the "total experience" to offer...I have a little money left, and all I need is to get to the drugstore for lubricant. For now, that's my new goal -- to be able to be "good in bed" again. The dilator is still sitting in its little box, waiting for me to go buy lubricant. I have to work on my self-esteem problem and get some libido back. There isn't a **** thing I can do about most of the other stuff. So. I can't take hormones -- with having had the cancer, it's just too risky. I really need to show him that I'm not just a lump, and to show him that I desire him and love him. So for now I'll have to be somewhat creative, until I can get my body ready for the "full experience." It's not going to fix everything but I know it's a start. I feel like such a dolt for not having thought of this earlier. Duh.

So, off to do my leg exercises and get squeaky-clean and pretty myself up for him. I'm sure it will help my self-esteem as well as his.

Hope this hasn't embarrassed anyone to read...it's been a bit hard to write. But I think this simplest of solutions is the beginning of an answer to our problems. I want to catch this early, nip it in the bud before it becomes a pattern where he really starts to see me as a 'burden' (my description, not his). It's so intensely important to me that we have a good relationship. No bitterness between us. No more of this imbalance.

=emp
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the imaginary scale is weighted against me -- can I tip the balance? 06-04-2004 - 09:41 AM
June. Right there in Large, on the calendar, June! June 4th, to be more precise. Morning. Sunny and cool!

I woke up from a deep sleep and saw a pair of Feet at the end of my legs! The exercises are working to get that fluid circulating! Hooray! My ankles are still a bit weird-looking. My muscles in both legs are s-o-r-e from the exercises. That's no problem, though -- I'm glad of it. It's a good pain, come by honestly.

Sorry I've been so weird this week. I don't know what my problem is. Thanks to my dear sisters who have cheered me with PMs! The antidepressant is working, so it's not that. Maybe it's a natural part of the healing process. You know, now that I've been out a little, I'm frustrated by not being out more and that has made being alone even more of a thing. Have: inch; Want: mile.

DH said he would bring MW's dress down Saturday morning for me to have a look at it. I hope I can just draw the snagged thread through to the other side of the fabric and pull the front smooth. I don't know without seeing it, and I don't want to do anything that would make it worse, but I surely would love to surprise her.

I'm trying to think of something I can do to please DH. Well, I can think of one thing ... Maybe he thinks I don't love him any more... it's not that -- it's my own body that isn't cooperating. I'll figure something out

Yep, I think that will improve things. I've been displeased with my body, but now that I have smooth legs I think I can get a little more involved. It was just awful, looking down and seeing these alien limbs, hairy and swollen. The thought of intimacy just wasn't crossing my mind. I haven't had any libido to speak of for quite a long time -- too long. My body isn't ready for the 'full spectrum' yet, but at least I don't feel disgusted when I catch a glimpse of my legs. And so I don't have to worry about DH being 'turned off' by the sight. My Grand Plan begins with taking all the extra pillows & rolled up sleeping bag (used for leg elevation) off the bed. That should give him his first clue. Why I didn't think of this before, I don't know. I guess it was those hairy legs...

That's about all I have to offer. I don't know what else I can do to please him -- can't do much in the way of housecleaning, can't buy him anything... maybe this will pull things back into balance. I can only try, and hope.

That's my main problem, I think. The antidepressant is working enough that I care more about things. So instead of feeling rather worthless as a matter of course, I'm really feeling it, and actually wanting to do something about it. This isn't a cry for everyone to come tell me that I'm not worthless, by the way -- please don't. I know I'm not. The reassurance I need is from DH, and not in words but by the way he treats me. I'm just analyzing (of course!) and figuring out what to do about it.

During our heated exchange in front of cousin J the other day, DH said something that really hurt me. He didn't call me names or label me as "worthless," but that was the effect. I haven't felt like I have much to offer. I'm certainly not contributing to the household in any way, other than trying to -- and succeeding in -- keeping things tidy the way DH likes them. I can load and unload the dishwasher... I think each of us wants to be perfect for the other (at least, I hope it's not just one-sided, not just me feeling that a good relationship is of prime importance!) and neither of us quite knows what's wrong or how to fix it. I think we both feel like we're failing each other in some way. Or maybe I'm just over-analyzing it all. In any case, I don't think my plan could hurt the situation. Even if it's mostly symbolic, I think it will help.

DH will be home early today. So my only plan for the day is to do my exercises and to be clean and sweet-smelling when he arrives. We'll be dashing off to the rehearsal, but I can be ready to go when he gets home, and I'm hoping we'll get home late enough that he'll miss 'happy hour' and stay home instead. If not, there's always tomorrow morning, tomorrow night. I can't let failure crush me -- I just suddenly got this bad feeling that he's going to drop me off & get me settled in and then leave for the bar.

Here I go staring at the screen and not typing -- time to end, then. Wish me good things -- even if my plan doesn't work, at least we'll have a nice time at the rehearsal & tomorrow at the wedding, right? Love, =emp


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not the most positive entry I've ever typed... 06-03-2004 - 07:28 PM
Had to look at the calendar to be sure it's still -- yep, still -- May 3rd. *****Should have looked a little closer at that calendar...thanks, Moonchime -- it is JUNE this month... One of the longest days of my life, for some reason. (***Maybe because I thought it was a month long!) Did 2 rounds of exercises and slept most of the rest of the time.

The girls stopped by this afternoon to drop off the wedding dress and bridesmaid dress. The closet is upstairs, so I haven't seen them. They were a little upset; the wedding dress has some wrinkling somewhere on it (I had been napping so I'm unclear about where) and the bridesmaid's dress has a Snag. But E. said she's heard horror stories about bridal shops and feels they were treated well. I don't know -- I'd be upset about that snag. 2 days before the wedding, though, what can be done...

My journal doesn't have a nickname for my older stepdaughter. The younger one is "E," but I already have too many "M"s with my cousins. I guess first and last initials would do -- "MW," then. Anyway, I didn't make a big deal out of it, but I don't want MW's dress to have a snag. She's just lost a lot of weight and this is a day when she should feel perfect. I just know she's going to be thinking about the snag the whole time. Since I haven't seen the dress (they were in a mad rush and MW's boy was sleeping in the car) I don't know if I can fix it. Waiting, waiting for DH to come home -- he's been washing his car for 2-1/2 hours! (I've seen him do it, so no worries about it being an alibi.) I want him to bring the dress down so I can have a look & see whether I can make the snag invisible. Every time I hear a car, I jump -- I think maybe this time it really is him! YES! Just saw him walk past the window with his tux in a garment bag! YAY!!

Alas, he's all frantic about having a lot of stuff to do. I won't bother him with the dress. Part of his frenzy was worry about me being hungry. I had a snack when he called to tell me he was washing the car...knew he'd be a long time -- so he can relax a little. He's going to work extra-early tomorrow morning, to give us time to get to the rehearsal when it starts. I think I'm speedy enough on the crutches now, so that he can just put the wheelchair in the trunk & I'll crutch all the way to the car. EEk I just realized, I have to find something to wear to the rehearsal dinner...

arano's been really busy with her son's school Media Center (what we used to call "the library&quot so she hasn't been around much. I really counted on her daily visits for things like going upstairs & finding me some article of clothing or book or whatever... didn't realize that until she stopped coming over as often. I also think her therapist told her to stay away... Maybe I'm just alone too much and have too much time to think, and maybe it's not that at all. But I would bet money on it. The old 'savior complex' thing, y'know. I'd bet that she had started to see her visits as obligatory & was letting them interfere with her daily life. Whatever the reason, whether therapist or just plain busy-ness, it's made me see how much I was relying on her. I have lots of friends who ask about me, but she's been the only really consistent person -- I'm feeling just a wee bit sorry for myself at the moment.

Ironic -- now that I'm able to get around a bit, I don't have anyone to go anywhere with. Well, the wedding will keep me busy, to start with, and maybe I'll make some plans for next week to visit with MW and our grandson. I have the clinic Thursday and the CAT scan & gyn/onc appt. Friday, so it's just really Tuesday and Wednesday. The phone interview for temporary disability is Monday, and I'm nervous about that. Cousin J. told me that everyone gets rejected the first time, and just to apply a second time. I feel extremely weird about the whole thing. I don't think of myself as "disabled," but the plain truth is, I can't work yet. Can't drive myself anywhere, and even though I can "crutch around" a bit, I still need the wheelchair. While I think I can work from the wheelchair if I could just get up to the store, no one is exactly what you could call eager for me to do that yet. Except R., and she can't help me get there. I hate asking for favors and rides -- especially when the rides involve lugging a heavy wheelchair for me and driving 1/2 hour -- but I'm going to ask the retired next-door neighbors if they can take me to Friday's appointments at the hospital, and will approach them about the idea of maybe taking me to the bookstore one day a week. Sigh.

Well, I'm tired of thinking about all of this. Tired of thinking about all of it. Tired of living it. I'm going to quit typing here for a while and focus on the wedding or something, look at roses on the internet...
Love, =empresse





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clinic visit & a bit of Unofficial History section (no dates included) 06-03-2004 - 09:13 AM
Thursday, 3 June, 2004
I started an entry yesterday and wiped it off the screen, deciding to write a frustrated letter to DH instead. That, too, never got finished. I did, however, get the first bit of hair off my legs.

Cousin J. picked me up and since his cute little car is having tire problems, we went to DH's work to switch cars. And wouldn't you know it, DH & I had that argument, right in front of cousin J. I cried the whole way to the clinic, a bit during the appt, even, and some on the way home. DH apologized when we got back to his work and switched cars again. I just accepted the apology, added one of my own for my role in it, and let it go. But I think there are deeper issues we need to resolve.

First, let me fill you in on the clinic appt. The therapist was delighted to see me walk in using the crutches. I told her I was quite worried because using them made my feet swell so much. She cut off a compression stocking from a long roll of it ($20.00-+ to buy this stuff at the store, and here they have boxes of it ... I wonder how much they billed the insurance for it -- of course, at the store it's pre-made into stockings, but still, same compression fabric.) Then after she eased it up over the sausage and on up the thick leg, on to exercises. Between each new exercise she lightly massaged my leg with upward motions. The exercises are things like rolling the foot in circles, toe pointing and release, towel squeeze between the knees -- simple stuff. You wouldn't think it would cause any pain. My muscles ache, though, since I haven't been using them. It's the old, "no pain, no gain" method -- but if, after an hour, the pain is still at a 7 or over, I need to do fewer repetitions the next time. The idea is to get this fluid circulating, and these exercises are designed to 'encourage' it to move upwards the way it should. They all seem so simple to me, and three reps seem like nothing -- I think, "I can do more than 3" but today humbles me into the prescribed routine. The nerve pain -- the initial pain that got me into the state of weakened muscles -- is exacerbated by the exercises. I just have to grit my teeth and continue, and "report" next week.

This bit is some 'unofficial' history -- explains why I'm applying for disability
Either there's something still pressing on a nerve, or I've got some kind of residual pain from when the lymphoceles were there. I will know for sure after the CAT scan next Friday whether there is something pressing on that nerve/bundle of nerves. If not, I'm going to need to see a neurologist. This is completely separate from the lymphedema and blood clot, totally different type of pain. That is the reason for applying for disability. Not the hysterectomy, not the swelling. It started bak in February, at the same time that they found the lymphocele (pocket of lymphatic fluid pooling in an area up in the groin) so it appeared to be cause-and-effect. But after over a month of wearing a drainage bag connected to a tube inserted into the fluid pocket, and after they found a second one and re-inserted the tube and drained it, if it had been cause-and-effect, the nerve pain should have disappeared with the second lymphocele, when I got the tube out. And it didn't. In fact, it got worse. That is what prevents me from hopping out of bed in the morning and walking around. There's the kind of pain where you just grit your teeth (maybe take some medicine) and go on, and I've had plenty of that, and that wouldn't keep me from working! I have to convey this somehow, that I LOVE the bookstore and I HATE not being there. I don't have a monetary investment in it, only because I didn't have money to invest, but I have a Huge stake in it. On paper, it's my biz partner's Sole Proprietorship for various reasons -- on paper, I'm the "manager" and the "buyer," -- when it comes down to brass tacks, I'm part-owner. I put in what is called "sweat equity" to get us off the ground. I'll have to write more another time -- I got a phone call and I really need to do some other things besides sit at the computer!

Love, =empresse
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Rather Random Rantish Response to a Rather Frustrating Day 06-01-2004 - 10:58 PM
June 1st, evening. Still 2004.
All that waiting for phone call from the doctor's office messed up my plans. And then, Dr. Janet had to 'rush out of the office,' so just left some blank signed Rxs, so I don't know if I'm supposed to continue the doxycycline and if so, whether to take it once or twice daily. The nurse made an assumption and wrote for the same strength Duragesic patch instead of going up with it. Which is fine...I can wait a couple of weeks...but I'm frustrated yet again. My CVS didn't have the patch and for some reason it would be "a couple of days" to get it in, and I needed it for tomorrow so DH had to go to a different pharmacy for it. On top of everything else, insurance co. wants the antidepressant filled via their mail-order plan since it's a "maintenance Rx," and DH doesn't want to mail it in, wants to phone it to them. I have enough through Monday (or maybe it was Until Monday) so I don't know why he won't just mail it in. He was being weird, and apologized for it, saying that today was just one of the days when "it" is "hard for him." Whatever that means. "It" is "hard for me" every swear-word day, and his being weird actually starting yesterday through today certainly doesn't make it any easier on me. But I don't feel like I should complain because it was nice of him to buy me the legshaver, and he ran all over town getting Rxs filled and buying food to cook for dinner. I feel like it would be too demanding of me to expect him to explain what his vague allusion to his feelings really means, and to expect him not to weird out on me. So then I go all silent. Why isn't it easier to communicate? I just don't know if it's the money that has him down (given some of the asides and random comments, I suspect that's it) or the lack of sex, or that he's working all the time and spare time is errands for me/household 'chores' -- all that is certainly enough to get a person down. I hate second-guessing it, though. And I got pretty "down" myself after some comments about how much my Rxs were going to cost (a swear-word of a lot less than they would without the insurance, that's for sure) and a couple of other money-related issues.

Oops I think I started that paragraph meaning to tell you that my legs didn't get shaved. Went off on a rant/tangent. Yeah, I waited and waited and made a second phone call and waited some more, and didn't get to the legs.

I used the crutches for the whole trip, because I didn't want arano's mom lifting the heavy wheelchair, and now I have sausages for feet again. Came home & put them up and dissolved into tears, did a handwritten journal entry about my being upset over DH's money comments, wound up getting up again before dinner -- hours before dinner -- because I was hungry. I know I need to get the feet up again -- the whole right leg is feeling quite strange -- but stayed sitting up to do the pill-taking routine after dinner, and here I still am.

At least we didn't have a fight/argument/raise voices. And this will probably all blow over again. I'll get some kind of progress going with the clinic appointment tomorrow. There is hope. And DH really has been a peach most of the time, almost all of the time...and it's been months and months, would try the patience of a saint...well, I have to get the feets up. Sorry this was so disjointed. 'Night. Love, =emp
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That's no sausage -- that's my Foot! 06-01-2004 - 11:37 AM
Tuesday, June First, 2004
I can see my foot! At the same time, my leg really hurts and feels strange, sort of throbbing, in the thigh area. The visiting nurse just called -- she's going to come by and take some blood, and I'll be calling Dr. Janet about picking up written Rxs this afternoon. I don't know if either one of them will have an explanation/answer why this is going on -- it may have to wait until tomorrow at the clinic. I want to keep my foot up for most of the day -- sitting at the computer might allow it to swell again.

arano's mom came by, and offered to drive me up to Dr. Janet's. Cousin J. says that he will take me to the clinic tomorrow. It feels good to get the logistics arranged. (Called Dr. Janet's office with the list of Rxs I need -- they'll call me back when ready.)

It's a beautiful sunny day -- after all the weekend storms, it's looking very green and brilliant outdoors. It beckons me, but I'm not accepting its invitation this morning. Being wise, conserving my strength. I'll be out this afternoon, and it's a beautiful drive up to Dr. Janet's office. Hoping arano's mom will want to stop by the bookstore while we're up there. Wondering what I have by way of clean clothes to change into -- DH hasn't quite gotten into the habit of putting them within my reach. If I must, I'll wear what I have on -- flannel jammy bottoms blue floral print on white. Not the flannel jammies I normally wear in public...

I just realized -- this outing means getting cleaned up. I don't want my foot to swell up again -- every time I climb into the tub, my right foot turns into an overstuffed sausage. I'm thinking I'll just do the "French bath" (thorough washing-up, but never feels like I'm as clean as when the shower water falls upon me like rain). And then with the trip to the clinic tomorrow, I'll need to climb into the tub tonight or tomorrow morning.

The good news -- DH bought me an electric leg shaver yesterday!!!! After the visiting nurse visits, I'll be able to remove this long, long leg hair! The gadget will be all charged up by then. I don't know if the promised 20 minutes of shaving time will be enough to complete the Project, but if I work on 'em every day, they'll be smooth by Saturday for the wedding. (Not that anyone will see them, with my long skirt, but it means a lot to me.) Yes, having smoothly shaven legs is one step closer to me feeling properly human. I know it's a cultural thing, but this has made me feel self-conscious for months on end. Between the Warfarin and the lymphedema, a regular razor is a double-nix. In case I haven't made this clear, I can't risk cutting myself -- the Warfarin thins the blood, and the lymphedema puts me at high risk for infection.

Speaking of infection, I had a little (kinda big) whitehead just below my horizontal hyst scar. Probably an ingrown hair -- my pubes are finally starting to grow back! I couldn't help it...had to mess with it, fearing the whole time that it would start bleeding & I wouldn't be able to stop it, but my fears were unnecessary, thank heavens! An alcohol swab pressed firmly against it seems to be sufficient. I'm worried that it could turn into a full-fledged boil -- must remember to mention this to the nurse today. You'd think the doxycycline would prevent this kind of thing from ... er ... popping up (heh) in the first place.

Now I'm just waiting. I hate this waiting. Waiting for the visiting nurse to arrive, and waiting for Dr. Janet's nurse to call to tell me the Rxs are ready for me to pick up.

I might as well use this time to look up which hormones cause excessively oily skin and hirsutism. The blessing of looking younger than my age is offset by the 'curse' of zits and having to pluck hairs from my face. I really thought the menopause would change this, but it's not showing any signs of change. The skin on my body is dry and flaky, but my face is still oily and sprouting unsightly and unwanted hairs...and now this thing below the scar. I've always slathered my body with lotion directly after patting dry from my daily shower, so I don't even know if the flakiness is a change -- the change in routine, not doing the daily shower, may be the cause.

I'll give you my skin-hair/hormone research results later, then, and for now, will say "Adieu." Love, =empresse

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A Rather Feisty Rant 05-31-2004 - 09:21 PM
Well, it's the evening of May 31st, last day of May in 2004, and time for the nightly report. Today was largely uneventful. DH went to see his mom & I stayed home.

Did some more "armchair gardening" -- found a really great site for perennials that should do well in the Midwest (they're in Ohio, so I might be a little too hot for some of them). Of course I won't be ordering anything this year, so I have no idea if their delivery and plants are as good as their site design and prices, but it's definitely a great place for gathering info. I was just looking at lots of different types of "pinks" today, and then saw they had a pre-planned shade garden with a list of the plants included. While I will never be the type to follow someone else's plan, it was good to find that list -- I started to look up the different plants before I had to get my feet up.

Also had a nice phone conversation with one of my friends from NYC. The first time she called, Moush planted himself between me and the doorway so I couldn't get to the phone in time -- crazy kitty! -- but I was in bed the second time she rang, and the phone sits on a charger on the bedside table, so no problem getting to it. (I pretty much have to keep the phone on the charger most of the time these days -- it just doesn't want to hold a charge any more.)

DH brought me outside while he was grilling the chicken, so I did get a little fresh air. I had said something to arano about going out carrying the phone so that if I had a problem I could call someone, and she was not too excited about that idea...DH wasn't either, when I told him...I understand where they're coming from, but if I give, say, cousin J. advance warning that if I don't call him back in 5 minutes I need him to come right over, I think that is a perfectly good plan. I can't bear to be just stuck indoors and totally dependent on whether someone wants to/has time to/is home to "take me" outside. What am I, a pet dog? Sheesh! Lock me in a crate, then, and you'd better get creative with the door lock because I will chew my way out...GRRRRRRR. No, I understand. It's just frustrating and while I will be safe -- I seriously will be sure that I am safe -- people can't just expect me to languish indoors with my feet up waiting for someone to have time for me. That sounds harsh, I know. But I hate to be told what I can and can't do, and then have no one to "spot" me down the stairs if that's the only way I'm "allowed out." It's not arano's job to drop everything just because I have a wild adventurous moment...DH can't stay home all day, every day ... this is part of that power thing I was talking about. Today was a relatively coolish day, and when it's too hot I won't be able to get outside, even if I can walk and run on my own two feet. (Heat is bad for the lymphedema and also isn't good while I'm wearing the Duragesic patch.) Oh, the whole thing will drive me Crazy before it's all over...

Getting out and being social is part of the healing process, as Jmac reminded me the other day. Well, so is asserting my independence a bit. I'm not a stupid woman -- I'm not going to do something that I feel is super-risky. If I'm feeling strong and the weather is nice, and if someone has time to dash over if I don't call in 5 minutes, I'm going outside. Durnit!

This is the kind of thing I usually write in a handwritten journal. Things I say strongly, using strong language, not cushioning it for a reader or a hearer -- especially to protect the people I love from such an outburst. If I can grab it and get it on paper, it's not as likely to come out of my mouth. Because some of what I have said in this entry would be hurtful if I said it out loud to people I love. There would be defense, and a sort of 'counterattack' mindset, and some guilt tossed into the air somewhere, by someone... I try to keep that kind of thing out of interactions. So it's very weird to put this entry up for anyone and everyone to read.

posting -- quick -- before I lose my nerve -- =emp
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Memorial Day's Morning Musings 05-31-2004 - 10:58 AM
Monday, 31 May 2004 Memorial Day
AAaugh! Woke up super-early, and DH 'caught' me dozing in front of the computer...so I went back to bed for too long. Achy me, owie me. Duragesic patch can't smooth over hours-long no-meds pain level. Sigh. So the near baseline is still pretty high. I was hoping it was getting better with every passing day. I still have to determine the cause of the pain. I had kind of lost sight of that in face of the lymphedema. Insurance isn't going to be enough to cover going to the clinic and a neurologist. Hoping that I get the disability payments and can do something to add a little to that so I can afford to get the underlying cause taken care of as well. I want a refund for the one hospital stay that was such a fiasco! Then I'd be able to stop worrying about the ability to finance a complete healing.

I guess socialized medicine isn't all wine and roses, from what I read from our sisters "across the pond," but at least people aren't "one serious illness away from bankruptcy." Even with the insurance for which DH married me (to give me) and for which I am so grateful, it's not enough to cover the post-op complications. Added to that, they've put a cap on the yearly total medicines they'll cover...I'm really, really worried about money.

Since the hospital can afford to cut their charges to accommodate what the insurance will pay, I really don't understand how the whole financial thing works. I'm really and truly incredibly grateful for the insurance -- what will I do when it runs out? Somehow I'm going to have to bring in extra cash if we run out of insurance, by taking on typing projects or something. And I don't want to lie to the disability people and the US Gov't about my income -- I don't want to commit fraud! So I have to figure out some way to get assistance that won't interfere with the requirements (as soon as I find out what they even are! ) Worrying about something so vague is just a waste of good energy. I will have to trust instead of worrying -- pray for a good solution...pray the solution instead of the problem...

DH went to the milk store -- hooray! Fresh, hot, DH-brewed coffee followed by a nice bowl of cereal with cold milk -- I am truly blessed. I need to take this one day at a time. Today I have all the medicine I need, all the food I need, plus a loving family. I don't know what will happen in a month, two months -- but we can afford the necessities today. DH comes to me often, saying, "Don't worry. I know you're worrying. Don't worry. That's my job." And that is so sweet. But I still hate for him to be worrying.

Sometimes I wish I had a "churchly" kind of faith like some of the Sisters here. Reading that book about American people's beliefs has been interesting -- we all believe so differently, even among the various Organized Religions, and yet there is a common thread, which is a Someone Other who cares about us -- and most of the people interviewed for that book also talk about "brotherly love" to go with it. There's one passage I'll get around to quoting one of these mornings -- not today, though -- I'm locked in this one position that's comfortable & don't want to lose it until I'm too hungry to sit in one place. Anyway, I'm grateful that I didn't lose my faith completely! I don't think I'm cut out to be an atheist.

If there's Karma and Luck involved in all of this, R. says I'm due for the 'good parts.' And when I get to feeling too sorry for myself, I remember that it could have been -- and could be -- a lot worse. In fact, it's been a lot worse. This 'chapter' in my life just happens to involve the physical and the financial -- I've been far worse off financially, and have been in much worse situations. (Editor? I need some grammatical help with that one!) I mean I've had some really bad times with really bad people in the past -- "bad people" meaning people who did not have my best interests in mind -- and I'm surrounded by people who wish me only the best now.

I'm trying to get this all into perspective this morning, I suppose. And when it comes right down to it -- it really could be a whole lot worse. I was lucky to find Dr. Janet (thanks to a referral by a friend from BPW) who was persistent enough to send me off for further testing when my Pap smear came back fine. I was lucky that the cancer was caught fairly early, and that it didn't spread. I was lucky that DH wanted to marry me and take care of me. Call it "lucky," call it "blessed;" whatever it is, while I'm unhappy about not being able to walk, it's not permanent, and while I'm unhappy about having lymphedema, it's not fatal. I'm not at all pleased with the lack of communications between the various doctors, but at least I've been able to have them -- some of the best in the business.

I'm sad that in the US, health care is a business. Sad is perhaps the wrong word. When I'm feeling better, I really need to get Political about this issue. Not that little ol' me can take on the big pharmaceutical companies or the HMOs, PPOs, whatever-kind-of-Os I'd be up against, but at least I can be vocal and raise awareness. Letters to the Congressmen and Representatives, watching what comes up in the House and Senate and circulating petitions -- these are things I can do, and I'm lucky to be living in the US where I can do these things. (Memorial Day...feeling a bit Patriotic...)

Speaking of Memorial Day, there is a veteran of WW2 who is still very much alive who has been such a blessing to me. He was one of my father's best friends, and he has been fatherly to me at crucial moments, during hard times. Along with all those who have died in wars, there are those who are still living to whom my heart is grateful -- especially this man. He's known to others as "Blackie," and since I'm not using names in this journal, I'll use their nickname for him. I just finally got a huge, long letter in the mail to him -- when I was totally stuck in bed, I spent long hours writing it, and I had it Xeroxed because it is a good date-reference for that History Section I keep promising to finish. So -- special thanks to Blackie today! Not only for Iwo Jima, and Bougainville, and all he did in the Pacific theatre, but also for everything he has done since then.

Well, I suppose I should get on with my morning now that it is NOON! Time for a bowl of cereal. Love to you all, =empresse
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Another Cousin-filled Day 05-30-2004 - 08:25 PM
Sunday Evening, May the 30th, 2004
I'm home -- survived the Onslaught Of The Wilding Puppydogses in one piece! No tumbles today. DH is playing guitar/singing in the living room, and I'm here at the computer drinking some cold Juicy Juice (TM) (100% Juice!) I realize that my journal has strayed from health-and-healing-focused entries and has become a simple accounting of my outings, but that's bound to change soon...consider it a long holiday for the journal.

I forgot to change my Duragesic patch, so was a day late on that. Between a fresh new patch and having taken the full dose of Oxycontin, I'm doing pretty well as far as the pain is concerned. I just took a 'breakthrough' dose so I might even be totally pain-free for a couple of hours! What a crazy, unfamiliar concept...

Saw the first fireflies (or lightning bugs) of the season tonight! I should take a poll -- what areas of the country call them which name, I wonder.

When I start staring at the screen instead of typing, I know I have nothing in particular to say. Don't feel like the rehash of the past required with the History section. So I'm out for the night.

Love, =empresse
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Dinner And A Movie 05-30-2004 - 08:35 AM
Sunday, May 30th, 2004
I spent most of yesterday in bed with my feet up (and asleep...) so I was definitely well-rested for the Outing to the Cousins M. It was wonderful! First, the new things at the house. A wall of family photos in the upstairs hallway -- including a pic of me when I was about 4 years old, and a few I hadn't seen before of our Grandmother, and M's mom (my dad's sister) and dad. Also, somehow the Ms managed to get the boys out to a professional photographer recently and there is one of them in an avant-garde frame that's just stunning. Can you say that boys are "stunning?" Well, anyway, the photo itself is stunning -- passing through the hallway, that's the one which makes you stop and look.

Then, the newest addition -- a tiny, tiny tiger-striped kitten! So far, its name is "kitty" -- awfully young to determine its sex for certain. Taken away from its wild mama so young that it needed eyedropper feedings at first, it's a bold little thing and wanders all over by itself. Already knows to use the litter box! (It's eating solid food now, too.) And the sad news that the oldest of the dogs, Little Bit, was put to sleep yesterday morning. I knew it was inevitable and would be soon -- she was getting so tottery. Well, yesterday morning she couldn't stand up at all. It was time.

Their flagstone patio is a work of art -- and you should see the bruises "Mrs. M" has from balancing their weight against her thighs! Each stone is much bigger than I had imagined.

M. went to the Mexican enclave (a routine trip for him) and brought back specially-marinated pounded pork for rolling in tortillas -- his Mexican cooking outstrips any restaurant in the area. So it was a real feast. Just DH and me, the two boys, and M & M, which is unusual -- no added company.

I managed the staircase downstairs with the crutches -- DH caught me when I almost fell -- and settled into the comfy couch for the projection TV showing of Return of the King. Almost as good as being in the theatre! Better, actually, because I could have my feet up the whole time. I really enjoyed the film! Even with its departures from the original story (yes, I'm a total Tolkien geek and have read the books hundreds of times over).

So "Dinner and a Movie" is over. Today, then, we go to cousin J's for barbecue. The weather isn't looking promising. DH doesn't look forward to visiting this cousin as much because of the chaos that inevitably ensues -- they have at least six dogs and four cats, and usually guests who bring their dogs. I love being "mobbed" by the three little dogs, but he's not really an animal person. I'm lucky that we have cats! It will be interesting, getting into the house -- front steps to navigate, and then the rush of Canine Love to greet me. Not quite sure how to maneuver yet. I'm thinking that DH can have the wheelchair awaiting me on the front porch so I can be seated when the dogs discover me.

I'm really very sore from that tumble. This morning I took 3 of the Oxycontin -- I still have enough, taking two at a time, to get me to Tuesday. I'm going to have to get a real tub/shower bath today, so decided this would be the time to take the full dosage. (Yesterday I just did the wash-up thoroughly method.) So, off to eat my bowl of cereal and probably climb back into bed for a while.

Happy Weekend! Love, =empresse
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just a note 05-29-2004 - 07:36 AM
Saturday, May 29th, 2004
DH & I both woke up super-early this morning. I can feel every muscle and tendon in my body, I think, from tensing up & bracing myself during yesterday's topple. It's not Horrible Pain, though, thank God. I'm going to rest again before I really get up for the day. I need to get cleaned up which means climbing into the tub, and I'm just not ready to do that yet.

I'm really looking forward to going over to the cousins M. today! I'll get to see their new back patio and all the general landscaping they've been doing, and their house is just so big and luxurious in general that I always love being there. It's a homey kind of luxury, I should add. Also, I haven't seen their two boys in a while. Young men, I should say! So I'm going to rest up -- just wanted to make a quick entry.

Love, =empresse (the one with the Social Life!)
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Armchair Gardening, and DH Squeaked For Success! 05-28-2004 - 09:59 PM
DH is the better squeaker. I have an appointment with the clinic next Wednesday! Hooray! It took him into the afternoon and an awful lot of phone calls, but he did it -- while also doing his job getting the correct and necessary parts for the people clamoring for his attention at work. I gave him lots of thankyous and kudos and "yay" when he got home -- he seems to thrive on that. He loves being "my hero." Just as long as this stays in balance, I'm cool with it...

Anyway! The important thing!! Next Wednesday!!! Hooray!!!!

Cousin M -- well, technically Mrs. Cousin M, but I consider her my cousin too -- arrived with armloads of hostas and other plants this afternoon. I crutched across the back yard to where I'm planning the shade garden(s) and sat in a chair, and, acting like a Real Life Empress, pointed, then watched her dig and plant and mulch. It is impossible for me to sit still and watch others work, so I leaned over from my chair and started pulling weeds out of this sparse bit of lawn that will eventually become part of the shade garden. Edged the chair along -- this is a regular plastic stackable lawn chair -- bump, bump, and pull more nasty little invasive weedlets out of the water-saturated ground before they can spread further. Edge along, bump, bump FLOP! And I followed the chair as it toppled sideways with one of its legs deeply embedded in the mud. You just can't take me anywhere ... sigh.

I played it cool, and laughed it off, but I think I might have hurt myself. I twisted the bad leg kind of funny going down, and it's feeling extra-heavy and more painful than usual when I prop it up. I mean, I know nothing's broken or sprained or torn -- nothing Serious going on -- but it feels different than before my mishap. Sigh. I go to the clinic Wednesday, and they will fix me if I'm "damaged." I always try to do that one little bit too much or too fast. You'd have thought I would've gone down while crutching across the yard with its hidden holes and soft spots, but I was very careful. No, I had to fail at the easy part -- you know, the part where I sit in the chair!

So I have both my sausage-feet elevated a bit as I type, and will soon be reclining in Bed with both of them up above the ol' ticker. I wish I could devise some kind of sling for 'em. Here's where the Healing Fairies could really come in handy -- if they could just hold my legs in the air so I wouldn't have to feel the pressure of the pillow against my skin.

Added to that, I've done something stupid. I wasn't watching how many doses of Oxycontin I had left -- bottle is fairly heavy, no worries... Well, we're coming up on the holiday weekend...I only have enough to get me to Monday morning. So I tried taking two instead of three tonight. As the clock ticks, I can feel that two is not enough. But two now is better than none later, so if I have to, I'll take the breakthrough meds to help me along. That bottle is not very full, either. But after the last time I was low on them and freaked out on DH, I think I'll just keep this little problem to myself. And I'll be finding a ride to Highland on Tuesday morning, to pay a visit to Dr. Janet's office & pick up the Rx. I just can't seem to avert these kinds of crises before they happen. And I wonder if I'm subconsciously creating drama for myself with this kind of thing. Well, last time it wasn't my fault -- I got the paper Rxs mailed to me on time -- it was the pharmacist, as I recall. So maybe I'm being too hard on myself.

Anyway, enough of that. I had a great time "armchair gardening" today! And that's the most important thing. Right!

'Night!
Love, =empresse
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No New News, and an Unexpected Message 05-28-2004 - 10:24 AM
Friday, 28 May, 2004
DH is leaving 'urgent' messages for Diana at the gyn/onc office and for the lymphedema clinician. If he doesn't get return calls soonish, he says he will go on to leave 'angry' messages. I am grateful to him for doing this, since obviously my way has not worked. I have been firm, as in my last conversation with the lymphedema clinician -- at the end, I said, "And then you'll call me, right?" She said, "Right," but the phone never rang. Now, it's possible that she didn't get the info she needed..."Diana" may still be waltzing around to the tune of "Paris in Springtime" (heh) -- but while I'm not the only patient in any of these offices, I still would have appreciated a call letting me know that everything was still up in the air. This kind of thing is a lesson in Customer Service, which I'll need to remember in my dealings at the bookstore: Call the person who is waiting, even when you don't have any new news.

I thought I was going to put completely different things in my journal today, but I'm still trying to figure out what I'm supposed to be learning from the trigger event. The person on the Political forum who was so angry and offended by my health update posts sent me a private message, apologizing. He also said that it was "harmful for [him] to read" what I was writing. My first response was a simple thank you for the apology and for his kind words regarding my healing. I sent a PS, apologizing for my mean private and public messages to him and also apologizing for having caused him harm. I felt that I needed to apologize also, for Pax to be fully declared. I almost feel badly about revealing what was said in private on a completely different, yet public forum -- well, I do feel badly about it, but not enough to prevent me from including it in my journal. The whole thing is just so odd that I feel there is a Lesson for me in it. I think it involves what I was talking about before with LizMom, and my later musings -- the power and simultaneous powerlessness of the person who is ill.

I even wrote something about it, but I confused myself so thoroughly that I cut it from here and stuck it in my EZ Word program. So I'm just going to let the whole thing sit, and think about it or let my thoughts about it arise. Kind of like cooking. After you've made the chicken soup and then you let it cool so you can skim the fat off the top.

Earlier I was thinking about taking the crutches and going outside by myself, with the phone in case I should have a problem and also in case one of the medical offices called. I let it go too long (ate breakfast, thought about my journal entry) and now it is too hot for it to be a good idea. I also realized that both my legs are tired, heavy, and achy. I think that's a direct consequence of using the crutches and of holding my legs up since I've never pursued getting the "feet things" for the wheelchair. This tells me that I ought to spend the day with my feet up, resting. I'll have a busy weekend, and I still might get to go outside if the Cousins M stop by today with hostas and other plants from their old house.

I was dreaming last night, but I lost the dream when I woke up. I need to grab my pen immediately, the very moment I open my eyes next time I wake up. This one just didn't linger long enough -- by the time I said "bye" and "have a good day" to DH, the dream was gone. In the space of a single minute completely absent from my waking brain.

uh oh...I just heard the horrible noise of the cable modem Not Being Connected. I will have to copy all of this into EZ Word and post later. I hope this doesn't worry anyone, since it's a break from my usual routine of posting once before noon. .. I'll end now and attempt to send, as it looks like the 'connected' light is On.

Love, =empresse
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How Lovely to be Out and About! 05-27-2004 - 02:54 PM
Yes, sisters -- it was a lovely outing! Cousins M (both my cousin and his wife have the same first initial) met arano & me at the coffee shop, and they bought us lunch. That was an unexpected treat. The coffee shop is called Sacred Grounds, and they do vegetarian food as well as all the teas and espresso drinks. Despite the heat, I had my usual "tall latte with whole milk please" and a sandwich called "The Sundried." It's made in one of those toaster-press machines (there's a technical term for it that I can't remember) and has a sundried tomato pesto, wilted spinach, mushrooms, and cheese filling. The owner stopped in after a bike ride -- she was pretty shocked to see me in a wheelchair. I gave her the quickest rundown I could think up -- just really didn't want to spend my time out talking about my health. Now, thinking about it, I hope she didn't find my breeziness to be rude. I mean, I do consider her a friend, and really could have spent a little more time as she was sincerely asking after my health. But oh well.

arano & I went out front for a smoke -- yes, yes, I know ... the last thing I need is a lecture -- anyway, so we were out front, and there was a kid playing guitar and singing Political songs. One of them even had a line about 'sitting in the bookstore listening to the cash register ring.' That was a nice interlude.

Then we all trooped across the street to Beyond Timbuktu. I wound up finding a whole outfit there -- a long sort of dusty-brown 'broomstick pleat' silk skirt with a peach silk shell and an overtop-sort-of-jackety-thing, also in silk, in a retro-late-sixties pattern and style, with butterfly or angelwing sleeves and a self-tie front. It was more than my gift certificate and Goodwill money, but M offered to make up the difference and I swallowed my pride and said yes. I also got black velvet Chinese-style slippers with a bit of a heel -- on sale for $5 -- they're too huge to fit arano when I'm done with them, but I'm sure I'll be able to find someone to whom I can give them. The way things are going, I expect my feet to be this puffy the day of the wedding.

Yeah...both of 'em are fat sausages again. Sigh. After this entry, they're going up in the air. Of course they are propped up as I write this, but not high enough. And GRRR no message from either Diana NOR the lymphedema clinic when I got home. I called DH to see if maybe he'd picked up messages from work, but alas. I'll give them today, and if I don't hear, tomorrow will be Squeaky Wheel Persona, on the phone looking for that "Grease." I'll make sure to Squeak With Honey so that I catch more flies. How many more cliches can I cram into the plan?

Just as we were finishing our purchasing, the owner came in -- her mom's been sick with some kind of horrible ongoing cancer-related thing for over a year now -- in fact, we 'bumped into each other' at the Castle one day, both doing outpatient stuff -- and so she's been really aware of wheelchair accessibililty. Her brother made her a ramp on wheels for the new store (she just changed locations to Main Street recently) and she hadn't gotten around to making the sign yet, but she's got a doorbell within wheelchair reach out front and the sign will tell us to ring for assistance. The guy worker rolled it out for my departure. (Coming in, Cousin M. tilted me up and got me up the step backwards.) I was glad to be able to shop locally, even though I wound up not doing the Goodwill thing ( plus went over budget...) and the skirt is made by Sacred Threads. I don't quite know the hystersisters rules about this kind of thing, so I'll be briefly descriptive instead of detailed with web info (you can always PM me if you're interested). Sacred Threads works with an organization providing, among other things, medical assistance and food for the needy in India. I think the owner/buyer is conscientious about the whole exploitation issue when she chooses the clothes & other goods for the store, so I'm not too worried about the rest of the outfit. And I know I'm too poor myself to afford the luxury of my convictions -- bet I could have gotten a similar outfit for 1/4 of the total at Sprawly World. But I'm still happy about shopping locally and grateful to the cousins M for making that possible. (I would have gotten the fancy jackety thing and the shoes, otherwise, and looked for an underdress at Goodwill ... but buying separates was great because the shell will go with other things and the skirt will go year round.)

OOH more thunder -- looks like even though we got a late start, we timed our outing well! We're going to do the coffee shop part of it again soon. It was so nice to be a "normal" person! The Cousins M are going to have us over for "dinner and a movie" on Saturday -- they got the Return of the King on DVD and got a new bulb for the projection TV! They just put in a new slate patio out back that I'm really eager to see, too. And, they have a new tiny kitten for me to meet. They'll be over here at some point with dug-up hostas, daylilies, and other plants from their old house -- probably tomorrow. And then Sunday is the barbecue at Cousin J's! DH will go visit his mom for a little while one day this weekend -- not sure if I'm going along this time, with everything else that's happening.

I'm a Normal Person with a Social Calendar! Hooray! Maybe if I "play my cards right," DH will want me to go along to 'Happy Hour' at the bar this week, too. I'll be in all day tomorrow, unless M. stops by with plants in which case I'll be out in the yard. Well, better get these feet up.

Lots of love from a much-more-like-my-normal-self =empresse
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Empresse's Day Out! 05-27-2004 - 08:44 AM
Thursday May 27th 2004 Good Morning -- I Can See My Real Foot! Yep, for some reason the swelling has gone WAY down in my right foot, the one at the bottom of the "bad" leg! Only because I've pitched a ..um.. fit over it? Now I'll get an appt at the clinic and they'll just say, "hmm." They'll think I've made a mountain out of a molehill...or a sausage out of a cheese puff, or something. But YAY! There is a foot!

*ring* Phone Call -- from arano -- Looks like Little A's wrist is Not Broken -- she canceled his x-rays, and we're on for coffee! The birdies are singing -- I have the window open a crack -- so this will be a brief entry, as I'll need to get clean and ready to go. First, I need to finish the yummy coffee DH made, and wake up just a little more -- so I'll spend that time with my Sisters here.

I must have been dreaming something -- I woke up babbling about a field guide to birds! I called out to DH something like, "Have I failed you? I didn't bring you that field guide." He was in the kitchen, and called back, "I have no idea what you're talking about, honey." That's all I know. I don't remember a single image from the dream.

So I'm thinking maybe I'm worried about not finishing the book -- the Field Guide ?? Ugh. Field guides have pictures -- they're meant to be identification aides in the wild. Luckily I have not been taking photos of my feet. The UN-Illustrated Field Guide to Lymphedema? Well, it's not just about the lymphedema, anyway... I don't know ... I'm still groggy. All I know is, I'm gonna go out for coffee like a Normal Person! Yay! What to wear, now. Hmmm. arano can help me! She can get that one light-green dress from the closet upstairs! It's too flowing and casual to wear to the wedding -- DH doesn't like it (makes me look amorphous) -- but perfect for a day like today. I like my loose cotton or rayon shapeless dresses for heat wave days, and I wear them even though he doesn't like them, but for the wedding I want to wear something that shows off my figure from the waist up (and hides my legs even if they still look normal at that point).

This is pure vanity: I want to look as good as or better than E's real mom and future MIL. I kind of want to get a dress from Goodwill to prove a political point, too. Even if no one knows it's a Goodwill find, just to prove to myself that you can outfit yourself for a wedding on the cheap without resorting to shopping at places where third-world country people were exploited to bring Americans clothing at the lowest prices. But the vanity part is -- I want to be the pretty new step-mama, even if I am in a wheelchair! "Shannon" (the name I'm giving E's real mom, DH's ex) isn't exactly what you'd call a 'stunner,' and I know that's catty, and I apologize, but my point is, I don't want to feel like she's gloating in any way. I do hope she looks and feels pretty for her daughter's wedding. And it's really not about her at all. It's really about ME feeling good about MYSELF -- not in comparison with her or with E's FMIL. Just wanting to look pretty for myself and for DH. And of course the person it's really all about is E.!! It's her wedding. I do want her to feel proud of her "pretty new stepmama," though.

So, I'm going to get ready to hop into the bathtub, get ready for Empresse's Day Out! Hooray!

What a mood switch from last night, eh?
Love, =empresse

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Wed. Eve, IN WHich I Have An Imaginary Fit, Followed By A Strange Calm 05-26-2004 - 10:40 PM
arano & her son stopped by just as I was posting my journal entry earlier. We made plans to go out for coffee and onward to shopping for tomorrow -- but later this evening, little A. took a stumble and may have broken his wrist. X-rays for him tomorrow, and of course that means no coffee date. I might still go with cousin M.'s wife. It's all up in the air.

I called the lymphedema clinic -- no word or fax from Diana at the gyn/onc's, so I gave the clinic her number and...I'm still waiting for that phone call. Of course, everything may have happened late and she's just planning to call me tomorrow, but it's still frustrating and upsetting.

Had fun with arano and little A. -- they made mazes and I drew the beginning of a Blue Fairy with Cray-Pas. Wow those things are awkward to use. I got the face and hair done, sort of -- trying to think of something I can use to blend colors and make it less kindergarten-project-looking. Not that everything I do has to be some kind of masterpiece...

DH liked the chicken salad I made. So did I, until the aftermath. Poor tum-tum had fits with it. Terrible-bad tummyache, with gas. DH was worried about me in the bathroom for so long -- that's usually his department (LOL!) -- but it didn't keep him awake... he was snoring by the time I finally 'did my business' and emerged. I'm consequently way behind on the timing for all my medicines -- this morning's sleep and now that -- probably good that everything is later tonight, since I was late on most of it this morning, too.

That's just sort of the last straw of things not going smoothly. I wish I could throw all the pills all over the floor, take an axe to the wheelchair & crutches, rip the phone out of the wall & add it to the pile, cover it all over with shredded book manuscript, and jump up and down on all of it. Jump and stomp with vigor. That's not going to happen, especially not the vigorous jumping and stomping part. I'm actually too drained to be as angry as my wish implies. I'm sitting here with my mouth set in a thin, straight line, resigning myself to the reality of this whole state of affairs.

I know it all sounds very childish, and I need to keep track of these kinds of feelings, so that I can note in the manuscript that on day whatever after being diagnosed with lymphedema I finally got really angry about it. Of course, it's not just the swelling -- it's the communications problems, the frustration with not being mobile, the disappointment at postponing our coffee date and shopping expedition. And I'm coming out of my state of shock over it all -- I was just numb, with a sense of unreality. The person writing the journal being a sort of detached observer of it all. Being able to list and describe various feelings is not the same as really feeling them: deep in, heart-felt -- and as I sit here and type this, I can sense myself detaching again. I suppose it's a survival mechanism. God knows I've got plenty of those.

Not really feeling makes everything so much easier to deal with. I don't know whether it's the antidepressant taking hold or an old survival mechanism resurfacing, but whatever it is, it's here. It's almost as though typing that destruction and stomping scenario brought it on. Whatever it is, whatever is causing it, it's a relief to quit wallowing. I was getting to feeling pretty sorry for myself over these past few days.

This would be an excellent time to add to the History Section. I have no idea where I left off. Ah. The ill-fated Castle Visit. The horrible Dr. Who. Being discharged at the behest of the horrible Dr. Who-Cares, with great contempt -- and having to go right back into the Castle a couple of days later. The PIC line for at-home IV antibiotics...The arrival of the Wheelchair.. But this requires gathering xeroxed letters and two different notebooks. It means looking up dates and being much more organized than I can handle at nearly midnight -- which would also mean me staying up insanely late to add to the History Section...so I take it back. This would be a terrible time to add to the History Section! This would be a great place to end this journal entry!

Thank you, friends, for your cheering notes! I'll add to this in the morning. Love, =empresse
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Groggy, Grumbly 05-26-2004 - 01:40 PM
Today is Wednesday the 26th of May, 2004. I went back to bed after breakfast, to put my swollen feet up ... yeah, both of 'em ... and fell asleep, and I am so groggy! It's another rainy day, and very cool outdoors, so I have a window open thinking perhaps the fresh air will help. This is how I was feeling with the nightly anti-depressant before, and so I think it has gone back to the original blood level -- I get onto the bed and *click* out like a light. I got several phone calls, and I was so groggy for each one that I'm not even sure I remember quite what was said. I do know that none of them were from doctors.

I'm going to have to get on the phone later and insist on seeing the people at the lymphedema clinic, fax or no fax. I am really dismayed about both feet swelling after such a tiny outing, and that putting them up is no longer working to relieve the swelling.

Also, the other night while arano was here, DH said some things I didn't like. I wouldn't have liked them no matter when he said them, but it was inappropriate to talk about finances in front of company, regardless of how close our friendship is. In a way, I was glad she was here to witness this particular attitude, because I was trying to fool myself into believing this was a non-issue, and her reaction mirrored mine.

LizMom & I talked about this in much more abstract terms when she was here -- about the power dynamic when one person in a relationship is having a long-term illness. Looking at it from one set of views, the sick person is completely without power, having to depend entirely on the healthy one for all things financial (and also, for a while, in my situation, for the littlest things like a cold glass of water). Not only financial, but also, the healthy person pretty much determines the priorities because he (or she) is the active one, able to put thought into action. And then from another viewpoint, the sick person wields another kind of power that can be misused very easily -- the healthy one is at the beck and call of the one who can't function properly. His (or her) life is directed by the needs of the sick partner.

While there is a side of me that's very Powerful, at the same time I am also rather passive. I don't like confrontation, and I'm willing to put up with quite a lot for the sake of peace. This can be delightful, and it can also be unhealthy. I'm seeing the unhealthy side of it in stark reality right now, and I don't like it one bit. I've been in bad relationships and stayed in them for 'way too long in the past -- I am totally committed to this relationship and determined -- determined -- that it is going to be a healthy one. And this power thing that I'm talking about in abstractions here is producing some really unhealthy stuff. I've been pretending that it's not really happening. I can be really good at that. So, to have arano see it and "validate" it was both good and bad. Good, in that I'm forced to face up to it and see that it's real and do something about it before it cements into a Pattern, but Bad in that it put her in an awkward position, being there and witnessing it. NO, no -- don't get the wrong idea -- nothing violent about it. Sorry I'm being so vague but it just doesn't seem right to talk about the specifics here before I've raised the issue with DH. I don't like going behind people's backs. After I address this with him, I might be more anecdotal and specific, but for now, just know that all is not roses and I am unhappy. And dreading the inevitable confrontation that comes of nipping this in the bud. Sigh.

So here it is, mid-afternoon and I'm just now doing a journal entry. I've put everything on the calendar now -- a barbecue at cousin J's, my telephone interview for disability, the wedding rehearsal and dinner, and the CT scan and appointment with the gyn/onc. I'm not seeing the visiting nurse until next Tuesday -- staying on 4 mg of Warfarin nightly which is a good sign. This may mean that I've hit the therapeutic level and am therefore no longer at risk for the blood clot moving. I'm feeling sort of a vague nausea and feeling of Impending Doom for no real reason, ever since I got back out of bed today. Just sort of generally awful. I'm thinking a shower/bath might help get me out of the dumps, but at the same time I feel so yucky that I don't really want to do this while I'm alone in the house for another 3-1/2 hours or so. And yes, I can have someone check on me, so there is really no excuse not to. Nonetheless, I'm undecided. I'm going to sit here and type for a while longer and see how I feel. Might just wait until DH gets home from work.

Moush came in and is sound asleep on the dining room floor where he can keep half an eye on me. He's my Guard Cat. Little Bear is still outside somewhere. It's not raining at the moment -- I'm feeling bad about them having been outside this morning when it was. I think they have their special safe and dry places, though.

I've been reading this book on and off -- it's good because the chapters are short, so it doesn't matter if I doze off. The Search for Meaning: Americans Talk About What They Believe and Why, by Phillip Berman. I'm annoyed by it while enjoying it -- the author is careful to drop the "g"s at the end of words during some of the interviews but not all, and I am seeing a real bias emerging. People of Color and the less-educated are transcribed precisely as they sound, while the more educated and monied individuals don't have any dialect. It's from 1990, not all that long ago. I don't know why I'm letting it get to me so much, either, but I'll bet you that some of the middle-class people dropped plenty of "g"s and otherwise failed to enunciate precisely. This is one of the library discards that DH's brother gave us. There's a lot of weird and useless stuff cluttering the shelves in my study, and lots of excellent books in boxes now in my cousins' garage. I'm eager to get everything sorted out.

That is one of DH's problems with me right now, that whole incident of the stuff. I want to get started on the sorting project, and he's been very firmly off-putting. I know he's not exactly eager for the arrival of tons of books, but he knew long before he married me that I am a book person, and he knew that I had books in storage. In Midwest parlance, 'he is just gonna have to Get Over It.' Oh, I'm just feeling like a Big B right now. I'm just grumpy and grumbly and disgruntled. I spend WAY too much time alone. And it's going to be up to me to change that.

Now that I have that drainage tube out, there is no reason why I don't spend time over at cousin J's house. I was staying away because of horrific scenarios in my mind involving Dogs and Drainage Bag, but that is no longer a concern. They have a house full of darling dogs, which can be either overwhelming or extremely cheering. I need to change myself a little. I need to start picking up the phone and making phone calls.

Enough grumbling and tap-tap-tapping away at this keyboard. I am going to do something else. I don't know what, exactly, but it all begins with washing my face.

Lots of love,
=empresse
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A Stormy Interlude 05-25-2004 - 02:32 PM
Tuesday, 25 May, 2004
Thunderstorms most of the day. A wild one knocked our power out last night, and must have affected the cable provider since I was without internet access this morning. It's as dark as evening again. I had the computer completely off, and then it looked a bit lighter outdoors, so I turned it on. Now I'm wondering whether that was wise. The cats are sound asleep, and perhaps I should nap as well. I've been in bed reading with my feet up -- haven't fallen asleep, and the swelling has gone down a bit.

I did finish that envelope to New York. I'm actually rather pleased with it now -- modified the initial letter-frames to reflect the art nouveau style of the card inside, and after I finished the street address and city/state/zip lettering, I dabbed over the whole thing with a bit of Aleene's Tacky Glue mixed with water, since I'd done it in water-soluble colored pencils and didn't want it all to run if the mail got wet. So now it's got a bit of a sheen to it. The pencils are still on the dining room table -- I'll bring them to bed with me and set myself up with the lap tray/desk arano gave me.

She came by this morning -- she had double-booked herself, and I was glad and thankful that she'd made me the priority and delayed the other appointment. We had a good, thought-provoking conversation and made plans to go out on Thursday morning. At the very least, we'll go to the coffee shop. If I'm up to it, we'll go over to the Goodwill -- I'm still undecided about whether to get a new dress to wear to E's wedding. One of the dresses I've borrowed from arano would be appropriate -- but it would be fun to have something new (to me). I also have a gift certificate to the locally-owned import store, and it occurred to me that I could use it to buy two pairs of cheap Chinese slippers. That way, I can wear one of the large-sized pair on my right foot so that it's covered with something. And, if I'm careful with the shoe I wear, I can give away the larger pair to someone who needs them. (I'm working under the assumption that I won't need identical pairs in two sizes for long.) The wedding is coming up so fast!

I had the most awful tummy-ache earlier today, after eating last night's leftover pork steak for lunch. I had started a journal entry and just shut everything down without saving due to the weather and the state of my innards. After an apple, a lie-down, and some toast with cream cheese, I'm feeling fine again. Stress. I'm sure of it.

None of this -- the months that have passed since December's hysterectomy -- seems completely real. I feel like I'm stuck in a bad dream from which I can't wake myself. I don't feel like me at all, and yet at the very same time I feel like I'm more completely myself than I've been since I was, oh, maybe four years old. It's a paradox, and very surreal. I suspect that I will come out on the other side of this as a much more whole person. For one thing, I've had an awfully long time of introspection. A lot of my weaknesses have been revealed in stark contrast to this backdrop of near-hermitlike existence. And of course, so have many of my strengths. I am getting extremely tired of being so self-absorbed, though, and I'm really looking forward to being able to start slowly back to work.

The luxury of having the time to be creative, even when I don't take advantage of it, has been good for me. I'm focusing on finishing the things I start, which has always been one of my failings.

I'm going to go get my pencils now, and set myself up in bed again. While this may end in Sleep, at least I will go with the intention of illustrating pages in my hardbound journal. Fairies in the margins, that sort of thing.

Peace...
=empresse
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...Whine if I Want To... 05-24-2004 - 10:40 PM
It's nighttime. Past what any reasonable person would call "evening." I only have one more medicine to take, and it's the nasty, bitter one. My feet are both swollen and I spent the afternoon/evening with them up, in bed, after the visiting nurse left & I made my lunch & talked with the gyn/onc nurse.

Sorry, but I have to vent a little. The gyn/onc nurse -- I think I might have given her a name in earlier entries, but I am too lazy to be consistent so let's call her Diana. I'll go back and fix other entries (probably the same time as I finish "History" ... "one of these days&quot. Okay, so Diana returns my call. She starts out with, "You'll have to bear with me -- I just got back from Paris." Right. Okay. Well, I need you to figure out what you're supposed to fax to the lymphedema clinic...can you straighten that out for me please. Blah blah Paris blah blah Okay, Diana, well, I went out for breakfast and both my feet are swollen now -- is it a cause-and-effect thing? Is it something with the crutches -- I mean, all I did was go from the house to the car, and the car to the restaurant, was able to put my foot up there in the booth 'cause it was only Steak & Shake. "Oh, well, lymphedema is really awful, isn't it. It's gravity, you know...even my feet swelled up in Paris after walking around all day, and my lymphatic system is working fine..." SIGH. PARIS. DURNIT -- wish I were in Paris but right now I'm worried about being able to afford postage for a letter to New York! O-Kay! I'll be my "normal" self since you so obviously want me to, and ask, then. "SO -- tell me about Paris!"

All I really heard was "ParisblahblahblahParisblahParisblahblah." This is not like me. I'm not normally a jealous person, but I'm feeling jealous, green-eyed monster style. Diana's just spent ten days in Paris, and I can't even spend ten hours out of bed without my feet and legs turning into some alien's body parts. I want to go to Paris, and I'm sick of her rubbing it in my face. Also, my compassion and sympathy have flown out the window -- I don't care about her dang jet lag -- I just want her to focus on straightening out the confusion surrounding what's wrong with me. I want her to do her job. I don't want to be her pal today. I want to tell her, "You should've taken some extra time off, then, 'cause it seems to be interfering with your work." I feel terrible having these thoughts and this degree of impatience -- she's been really great through this whole thing, she's helped me a lot and has given me extra attention and special treatment. But right now I'm half in tears about this swear-word lymphedema. I want to go to the clinic. I want to start exercising if I can, and if I can't, I want to get some idea of time-frame when I might be able to start. And the clinic is waiting for a fax.

So then I also asked about When do I Know that the blood clot isn't at risk for breaking free and ...uh-oh... traveling ... that word's gonna make her say something about Paris again, I just know it... (it didn't, though) Well, it has to do with getting the therapeutic blood level of the Warfarin just right, and I should "ask Dr. Covering-For-Oncologist-Who's-Just-Gotten-Back-From-Sick-Leave the next time she calls." Huh? The next time she calls? "You know, to tell you what dosage she wants you to take." Uh...no...the Visiting Nurse assn. coordinator calls to tell me that. Dr. CFOWJGBFSL called me once ... if I wait to ask her the next time she calls, that could be next swear-word year! And I was really ticked off that the nurse thought the doctor was calling me -- NO the doctor has NOT been keeping in touch with me and it sure would have been nice if she had been so that I could ask all these questions instead of waiting for Diana, the only person with whom I have any real continuity to get back from swear word Paris.

Insert big red-faced WAH 'smiley thing' here. I feel totally abandoned. And now at least Diana is back -- apparently my gyn/oncologist is back too, but why isn't Diana offering to have her answer my question?

Totally abandoned. Dr. Janet didn't even call. From 'way back Last Thursday. I didn't get around to calling her this afternoon, because I had that post-mammogram quality-of-life phone interview -- which I did while lying in bed with my swollen, unrecognizable feet up, and went to sleep as soon as we hung up. Which then completely depleted the charge on its battery (but my experiment worked -- I need to hang it up differently to get it to accept a recharge).

I think I might be done whining for a bit here. Sorry. I know I'm being a big, selfish, whiny baby, and all I really need to do is make my own phone calls and light a fire under these people -- I'm not their only patient. When they fail to call me, all I have to do is pick up the phone. It's just stupid and silly and sorry-for-myself to come whine about it at hystersisters. And no, I'm not doing it to get sympathy. "It's my journal; I can whine if I want to/Whine if I want to...You would whine too/If it happened to you." Yup, sing it to "It's My Party." (I don't remember the words to the rest of the song, just the chorus, so I can't do an icare4bunnies-style complete version.) I must get my sense of humor back. Speaking of which -- hold everything -- time to take that bitter anti-depressant.
~~~~~~~~~~~bleah~~~~~~~~~~~

arano came over tonight -- couldn't find the beads, but found some embroidery projects. She gave me a Great compliment without knowing it. While I was waiting for "Chatty Cathy," the visiting nurse, I was addressing an envelope for a letter to a friend in New York. I made a formal decorative E for the first letter of her first name, then carefully printed the rest of her name. I'd started the decorative C for the first letter of her last name, and went on to print the rest of her last name before finishing the decorations on the C. Well, I was disgusted with it (and with myself) because the spacing and height of the letters of her last name had gone smaller than those of her first name, and I laid it aside. It was sitting on the dining room table when arano arrived, and she asked, "Did you print this or stamp it with your rubber stamps?" WOW. So she saw uniformity where all I could see was inconsistency! Wabi Sabi. I just have to keep remembering that. The imperfections give it added beauty. We got into a bit of a discussion of religions whose artists and artisans deliberately incorporate a mistake in their work so as not to offend God.

Yeah, instead of drawing colored fairies I got sidetracked to the envelope and lettering, and then tossed it aside in disgust. I'm acting like a petulant child. If you're familiar with the Secret Garden, I'm being Colin. I used to be the Mary character, and sometimes managed to be Dickon, but I never dreamed I'd be Colin, of all characters. Sheesh. Someone needs to shake me till my teeth rattle. Er -- no. Scratch that. It's been done, long ago, and it was extremely unpleasant. An experience not to be repeated.

Well, arano will be coming by in the morning. To carry the Secret Garden story further, she's been my Mary. She planted some annuals in pots (did I mention that earlier?) for the front steps, and some sunflowers (seeds) along the back fence and in a spot next to the tomato plants (which she also planted) by the garage, which will be surrounded with arugula if I can find the seed packet. So perhaps if it's cool enough she will wheel me over to plant the arugula seeds.

DH made another tasty dinner tonight. I was a bit 'off my feed,' which I chalked up to today's frustrations and my body getting used to changing medication dosages. I ate all my corn and broccoli, but not much of the pork steak. As I'm supposed to be loading up on protein, I probably should have focused on the meat. I had salad for lunch with some grilled chicken from the night before cut up into it. It was just romaine, vidalia onion, celery, and a bit of chicken, with Catalina dressing. If I'm feeling up to it, I think I'll make chicken salad from the rest of the chicken tomorrow. As it was barbecued, it'll be a messy operation, but should turn out to be delicious. And chock-full of Protein.

I know. It's late. I need to get back into the bed, next to snoring darling husband, get my feet up above my heart. At least I got the whine out of me, so I won't be all weepy as soon as my head hits the pillows. I'm hoping to be sleepy, not weepy!

Thanks for putting up with me, if you read this far. And if you did get through all of this entry without clicking away in disgust, you are truly a Divine One of the Hyster Sisterhood! (Not that the clickers-away are any less, of course!)
=e
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Monday MishMosh 05-24-2004 - 10:53 AM
Monday, 24 May, 2004
Yep. Here it is Monday again. I helped DH wake up -- selfish motive -- he makes the best coffee. I'm still sipping on my second half-cup even though it's gone cold. Just after he left, I went into that mode of emptying my mind of my self and daily worries/plans so that I could draw a card for hunnybunches which would be truly her card and not a reflection of my own concerns. That seems to work -- the card was right on, to the point of me commenting midstream while quoting what the booklet had to say, "This is exactly what you've been saying in your journal!" After that, I had some more PMs from dear sisters, and corresponded after eating my daily bowl of cereal. (Only in a hystersisters journal would I include this detail: I think I'm back on my preferred BM schedule!) Yes, after my first cup of coffee! Now I just have to get back on my preferred showering schedule and I'll be nearly normal! (That's right, I didn't hop directly into the shower after...) Anyway, I added some news articles to my EZ Word folders. (I hate it -- especially with NYT -- when they disappear into paid archives and I can't find where I've read something, so I started a sort of news 'blog.' It's not a true blog since it's not on the web, and I don't always add my own commentary. It's more of my packrat nature showing!) I missed one phone call -- of course it was 'Diana,' my gyn/onc's nurse -- and for some reason the portable phone won't hold a charge, so I'm possibly going to have to use the kitchen phone to reach her. And I haven't done that yet. I'm trying an experiment first -- hung the phone up differently to see whether the charger will work better that way.

I don't quite know where the mornings go sometimes. It's already 11:30, and the home health care nurse will be here noonish. Even though mostly all I've done has been computer-related, I'm ready for a nap. Is it possible that going back to nightly dosing of the Mirtazepine could have an effect that quickly?

My plan for the afternoon, now that DH brought the art supplies downstairs for me, is to add some colored fairies to the pages of my hardbound journal. At 3pm, I'm participating in a "quality of life" study from 'way back when I had my mammogram, pre-hyst. Again my answers are going to be skewed because this time they'll be affected by the lymphedema dx and my reactions to it. The first time, my answers were skewed because I was post-hyst. But I told the interviewer in advance of our first talk and she still wanted to go ahead with it -- I'm assuming that the same will hold true with today's phone convo. It's a lot of questions about self-image. I'll get a check for $20 in the mail for doing it, though, so I hope they still want my answers despite their being affected by other health issues!

Yeah...$20.00 means a lot around here these days. At the moment, since I'm not driving and the car needs gearshift work, we're saving a few bucks by taking it off the insurance policy. I really, really don't want DH to feel like he has to sell his car. He's been looking at a Repo'd truck with which to replace it...but to sell the car, he feels that he needs to put new tires on it & do some cosmetic stuff, which is $$, so I think, hope, pray that he's still decided against doing it.

Did I mention that I'm applying for disability? (Too lazy to peruse previous journal entries.) Well, if the Social Security people agree that I qualify, that should give us a little more $ toward the monthly bills. This may take a while. I was thinking aloud to R. yesterday over breakfast about what people do in situations like this. You have to wait until 5 months after the 'disabling' occurrence to apply in the first place, and then you have to expect to be disabled for a year. What do people do in this interim period? And we got into a convo about socialized medicine and bankruptcy and unemployment and such things. If it weren't for DH marrying me, his insurance covering me, and his willingness to support me, I'd be up that proverbial creek. And my heart goes out to all the people who are what R. calls "one catastrophic illness away from homelessness." It makes me want to go Political about it. I hope a Political chapter won't keep my manuscript from selling... well -- when I get my energy up, there's always activism. I'm not focused enough yet to have a real Game Plan, but I'll be writing letters to my congressman and I'll look up what bills are in the House and Senate regarding health care as soon as I have more of a logical brain in my head.

DING! Time's up -- nurse could arrive any minute. Must "run." It would be nice to greet her with a clean face at the very least!

xxoo =emp
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