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Clementine's Journal
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16 Months Post-Op, Still in PAIN, DEPRESSED & a Stranger Here:( 05-23-2007 - 02:48 AM
So much has happened in my life since the last time I wrote. First of all, I no longer recognize this site! My, how it has grown since the early days where it seemed as if we all knew one another; those were precious days to me, where I felt that I had a world of friends who not only understood what I was going through, but who cared. Well, if ever I could use supportive friends, it would be now!

I realized upon reading my latest entry, that I have had an entire major surgery since then. In January 2006 I had my remaining ovary removed in addition to major bowel repairs to correct a rectocele. It was a recommended 6 week recovery, but I returned to work in a wheelchair after two weeks out of a misguided sense of loyalty (my, hind sight is wonderful!). That, clearly, was a major mistake. By the end of the semester (I am/was a college professor) I was so exhausted that I slept through all of June and in July I had a major trip to Europe to present a paper at Oxford, which was an incredibly exciting event in my life.... after that, it was visiting with friends and family--a whirlwind-- and then back to work again. It seems I have never given myself proper time to heal.

Now, my assistant professorship has ended and for the first time in years I have chosen to not work outside the home for awhile. Not only am I still in pain, but I have become incredibly Depressed (with a capital 'D'):*( If I could, I would sleep five days out of seven. To make things worse, I don't know the cause of the depression. It could be the pain, it could be the menopause, it could be losing my job. I have my pick of many, but ultimately I have a blessed and lucky life with no cause to complain, which adds to my guilt for being depressed and makes me even more depressed.

Another new development since my last update here is that I have been diagnosed with degenerative disc disease. Everyone has some degree of this as they age, so it is to be expected, but mine is elevated to a degree of someone at least 20 years older than I am. It's a relief, frankly, to have some other reason to explain the crippling lower back pain. I've been seeing a fantastic chirporactor/nutritionist who is also a healer and through him I have had some improvement.

I don't know if I will find any of my old friends here, but I hope so, and I hope to find new friends too. I am doing everything I can to try to get better and neglecting my time here has probably been a huge mistake. I became so overwhelmed with trying to be a mom to two children, a wife, and a full time worker, whilst in major pain, that just getting through each day took most of my energy. I have made some other steps towards regaining an overall healing. I have returned to writing songs and performing again, which has opened a floodgate of creativity long supressed (this, because someone told me that problems with ovaries mean neglected creativity!). I am planning on taking this time off work to focus more on my art and writing and want to write and illustrate a children's book. It's an old dream and the reason I originally studied art and writing in college, so I figure it's about time I take a hiatus from teaching others and focus on myself. Wouldn't I be a happy girl if I could make enough money writing and illustrating to be able to do it permanently?

I'll close this for now. Today was my 40th birthday, which reminded me that I needed to renew my Hystersister membership. I had a moment of panic after midnight that I might have missed the deadline, and that my entire journal would be erased... and then I had a heck of a time even FINDING the journals, which used to be one of the major features of this site!!! My, how the world changes. Everything has changed, it seems, except for the fact that I am still in pain and still recovering

Blessings to all my Hystersisters old and new and to all the women who suffer in silence....

Clementine
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9 Months Post-Op and Miles to Go... as soon as I wake up... 03-10-2005 - 10:05 PM
It's been ages since I've written a journal entry or even visited the Hystersisters site. I think once I reached 6 months post op and was still in extreme pain I didn't feel like I could relate to the "normal" story anymore... I've been in a sort of self-imposed exile. So much has been happening on the health side... I revisited my neurologist who told me that he thought the brunt of my pain is from my SI joint and that he felt chiropractic care might help.

Then, at my December appointment with Dr. Expert, he said that the neurologist tells everyone they have a problem with my SI joint! He did an internal exam and hit two points that put me through the roof with pain: one was my bladder (interstitial cystitis rearing its ugly head), and the other was my internal muscles. He said that I have some nerve damage causing pain which in turn causes extreme muscle tension. He prescribed two internal creams to help the muscles relax so that the healing can begin: one is a nitroglycerin cream that I only use during days of extreme pain, as it is STRONG and makes my head feel woozy. The other is a lidocaine cream that I apply every night at bedtime.

I have also returned to my physical therapist, Sue, who is amazing and wonderful and also works closely with Dr. Expert. She has helped me so much. During my weekly visits she does internal acupressure with the vaginal muscles (very painful!), and then follows that with wonderful lower back massage and stretching and then uses the laser light to help relax the deep muscle tissues. She spends about an hour and a half with me once a week and has become a friend since I've been seeing her on and off for two years now!

Oh, yes, since my surgery I have gained 20 POUNDS Boo hoo!!! My hormones and thyroid levels are both normal and I finally realized that my weight gain has a direct correlation with the time I started my Zoloft. I tried lowering my dose of Zoloft and lost 2 pounds, but then had a mini-crying-breakdown for no apparent reason and felt so deeply and unexplainably sad. I didn't understand the whole depression thing... despite the constant, terrible, and seemingly-unending pain, I love my life. I have more than I ever dreamed. A wonderful husband, two children whom I adore, a dream job, a cozy cottage, a good life. In all respects except my health my life is perfect. I count my blessings daily and am so grateful for all I have. Dr. Expert's nurse explained to me that chronic pain changes the brain chemistry and that it affects the production of those "feel good" things like endorphins. Thus the need for antidepressants. I just picked up a new antidepressant that will hopefully help with the weight thing; I think it's called elleflex, or something like that...

I am now at 9 months post op and am utterly exhausted all the time! I've read other women discussing this phenomenon, which is such a comfort. I could literally sleep 3/4 of my day away quite happily. So, basically, I am fat, tired, and out of shape punctured princess. Of course, all three inhibit my ability to get motivated to exercise. Trying to regain my physical strength is one of the most difficult things I have ever been faced with. If I was rich I would go to a spa for a week where I could get massages and have workout classes and a physical trainer and have divine, healthy meals prepared for me. I'm having a heck of a time doing it all on my own. I need inspiration!

I'm also just recovering from a bear of a kidney infection, which didn't help the pain level too much either. I'm STILL on percocet, in addition to my thyroid medication, my antidepressant, and the vaginal creams. Yuck! I don't even talk about my illness much anymore, because I feel like I've used up all my "sick" time and it is now expired. Most people don't get it anyway and it's easier to just pop my pills and keep the struggle internal. Of course, my family are all very supportive, but I can see the toll it takes on everyone to have less of me than they want. I do stretch all the time and do gentle exercises my physical therapist showed me, plus light yoga. I walk a little, but not nearly enough.

Work, on another note, it absolutely great this semester. I work two days a week, with classes from 9:30 - 2:45. Heaven! Of course, the prep time and grading, etc, all add up, but it's so lovely to be able to do that at home. My amazing nanny, Grace, takes such good care of babyE and is the next best thing to having one of her grandmas take care of her. BabyE just turned three! She loves to paint and makes amazing paintings with acrylics, a menagerie of swirling colors. She's also very creative with storytelling. She LOVES to make up stories and tell them, and she makes up little songs too. She is the greatest gift I've ever received and sometimes I can't breathe when I think about how important her existence is for my sanity. My husband has been wonderful, helping out with laundry and cooking, even though we're still pretty much the traditional family, which is the way I like it (old fashioned me, the conservative Democrat). My son W is also doing well. I've decided to home school him next year for one year only. He graduates 5th grade this year and the school we want to send him to next is a 7-12 school. We're both excited to do homeschooling. I want to work on grammar and basic math skills with him too, since these are things that I see sadly lacking in the curriculum of most schools today (it's no longer the three Rs). With a two day work schedule I think I can manage this task. He can work on projects at home on the days when I'm at the college.

AND, we got a new puppy AND a kitten in January! Our puppy is Lizzie and she is a Beauvier, which is a Belgian herding dog, so she looks a bit like a cross between a large (ungroomed) poodle and a sheep dog. She is black now, but looks like she might end up being gray. Our kitten is a little grey and white imp named Misty; we adopted her from the humane society after much searching... she was THE ONE. She has turned out to be the most amazing cat I've ever known. She allows babyE to haul her around by the scruff of her back (which of course is discouraged!), and she has never hissed or scratched her. She has also never hissed or scratched, period, not even to the bumbling, gregarious 28 pound puppy. She is a little lover, cuddling and purring and sprinkling joy everywhere.

I need to be here. It feels so good to be writing. Probably no one remembers me or will read this, but it's good for me. Maybe I'll figure some things out by keeping up this monologue.

~ Clementine
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Update 10-24-2004 - 12:43 PM
I was sitting here thinking how nice it would be if I hadn't been writing in my journal because things were going so swimmingly that I was simply having too much fun. Isn't that the way it SHOULD be at 4 1/2 months post-op? There have been many changes in the past few weeks... I did find a wonderful nanny for babyE. Surprisingly, I received over 30 phone calls from my ad and it was difficult to choose just one. We found a lovely woman in her 60s from Colombia, S. America originally, but she has lived here for over 30 years and raised 5 children. One of her sons was a student of my DS and she was so excited to watch our baby. She is heaven sent; very Catholic, very positive, very adoring not only of babyE but of us all. She is Nurturing and we all need that right now.

Finding Grace has enabled us (especially me) to release a great deal of our stress. It is much easier for me to go to work now. Grace watches babyE two days a week from 10-3:30. The other two days, I take babyE with me and Superbabysitter "K" comes to watch her during my one class period. I have passed the midterm mark, which was a major emotional celebration for me!!! Next semester I will have all my classes on the same two days. I will inevitably have to go in a third day to do advising and other work, but babyE can be with me and I can go in on days that are good for me without being tied to a set schedule. BabyE loves my office so much that she asks to go there practically every day.

I received an e-mail to do a hystersisters questionnaire, which I did last night. In answering it, I discovered that I think I am suffering from menopausal symptoms. Can that be so, when I have kept an ovary and my continued supply of breast milk suggests that it is functioning? There was a question that listed menopausal symptoms and I checked 75 percent of them... I have been on zoloft now for about a month, as well as organic, whole food vitamins. At first, I noticed a decrease in pain and increase in energy. This past week, however, the pain is worse than ever. I also feel nauseated many days and wonder if this is from the zoloft. Yet I don't want to stop it because it has markedly helped my mood.

I don't really know why I haven't been keeping my journal. Yes, partly because of stress, being busy, and exhaustion, but even so I could find the time that I use to read or watch a show on tv to visit here. I think that I honestly feel like such a failure. I don't recognize most of the names on the journal site anymore because they are a new crop of women going through the process of surgery and recovery. I get weary from pretending that it doesn't bother me that where most women recover fairly well, I feel much as I did before the surgery (which was deathly). I don't feel that I can relate to most people because I'm not really bouncing back. I am exhausted, I am in pain, and I just got a refill on my oxycodone, which I cannot survive without. All the pills make me sick and tired, but the alternative is the pain, which makes me out of my mind crazy.

I have missed my friends here, but I get tired of complaining. I have crawled into a place where I am most comfortable at night when everyone is sleeping and I can curl up in bed with my booklight and read my books about other people's lives in an attempt to remember what it felt like to be a physically healthy person.

~ Clementine
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Utterly Exhausted 09-23-2004 - 10:40 PM
I am so tired. Every cell in my body is overcome with the deepest fatigue I have ever experienced. It takes every ounce of motivation I have to get up in the morning and face the day at work. I pulled babyE out of the daycare; I was getting a negative vibe, and she was having extreme fits when I tried to leave her there. The wonderful teacher I fell in love with took a class for 2 hours on the days babyE was there, and was absent a few other times. Each time I took babyE there, different teachers were in the room; teachers who made mistakes like putting the wrong diapers on her and giving her someone else's blanket and sheet (and no pillow) during naptime. I found a temporary babysitter for babyE-- a lovely woman, but not a long term solution, I don't think.

DH left at 4:30 am today for Texas; he is performing there and won't be back until midnight Sunday. I couldn't sleep all night; I was stressed about work and his leaving. Every time I sit down to read or plan lessons, I fall asleep. I was stressed about not finding a good haven for babyE. I was angry at myself for taking this job and completely overwhelmed. I finally drifted off around 5:30 and woke at 8:30 to see "W" off to school. BabyE woke at 10am and cried for a half hour straight, saying, "I'm tired. I want to stay home." I cancelled my classes today and stayed home with her. A short term solution, and one I feel slightly guilty about...

I put an ad in the newspaper for a nanny. Maybe it would be easier for babyE if she was in her home, a familiar environment. I discovered this week that I have a faculty meeting every Wednesday at 9am (not the art dept, but the other program). My class on Wednesday is not until 3:45pm and that was my "breather"... to sleep in a bit and prepare for class and be with babyE before I left for school. I bought a comfortable love seat and a rug for my office and made it into a little haven. For a while I felt a spark of optimism. Since I live 30 minutes away, babyE and I will stay on campus together on Wednesdays. I think I will be even be able to nap with her on the couch.

I keep telling myself how lucky I am... that if I just find the right solution for babyE for Tuesdays and Thursdays from 10am - 3:30pm that all will be okay. I tell myself that this semester is hard, but things will be easier in the future. My optimism rarely lasts longer than 30 minutes, which is very unlike me. I've always been happy and positive, but after all the pain and surgeries these past 3 years I am having a harder time keeping my grasp... I phoned my doctor today to see if he had researched whether or not it is safe for me to take antidepressants while I am nursing (as he said he would). He said it is safe and phoned in a prescription for Zoloft. Tomorrow I will start that. I will also begin some vitamin therapy, including calcium lactate, iron, and chromium picolinate. I can't go on the way I have been or I fear I will end up in the hospital from exhaustion.

~ Clementine
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Embarrassing Moments & Painful Days 09-15-2004 - 08:57 PM
Today my DH and I figured out that it costs us an extra $200 a month in daycare and gasoline when I teach 4 days instead of 2... just another reason why I am adamant about NOT doing this schedule again in the spring.

I've been having constipation problems. Yesterday I arrived at school and had to go to the bathroom, but couldn't. I sat and sat, feeling the urge but not having a large enough hole, and finally it was time for my class. I had to go to class, give a lecture and pretend all was well, when the whole time I was full of sh** . Aaargh!!!!! The whole time I was thinking how AWFUL this situation was and how there was not a single person in the world who I could share this with who would understand, except my hystersisters. I mean, how gross! I am back on my Metamucil (why do I ever stop taking it?) and today things are moving better.

Each morning I awake exhausted and in pain and wondering how I am possibly going to make it though the day. By night I usually feel stronger. I hate to wish away my life, but there are many moments when all I can do is tell myself that I just have to finish the semester and then my life will be easier... I am the first to admit. I can't do this 4 day bizarre work schedule while I am recovering, in pain, and trying to be a good mother and wife. I am spent.

~ Clementine
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I Don't Wanna Work... 09-13-2004 - 05:35 PM
Three weeks into the semester and I don't want to be here!!! I love teaching, and have great classes and great students, but the amount of work it takes me to prepare and grade is astronomical. Poor babyE is not getting as much quality time from Mommy lately

I've also been missing high school lately (not my own, but teaching it). Something about teaching teachers how to incorporate art, theatre, dance & music into a general curriculum to make learning more powerful and successful has made me nostalgic for the days when that's what I did. It's ironic how I always thought I'd want a permanent job at a college, and now that I have one I miss the days of being in the high school. I felt like I made a difference there, and NOT at the expense of time with my family.

~ Clementine
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Feeling Stronger 09-13-2004 - 08:41 AM
Today, I am feeling a little calmer about everything. I am still optimistic that I will be out of pain someday.... Three months and one week post-op and I still need percocet and ibuprofen to combat the pain, but not as often. Over Labor Day weekend we went to dinner at my friend "M"s house. She had one of those big bouncy Pilates balls. Several months ago, my physical therapist showed me some exercises to do using it, but I never bought one. However, using "M"s ball got me excited about it. She also had something called "The Miracle Ball." It is essentially two little green balls (slightly larger than tennis balls, which you can also use if you don't want to buy the balls and book!). You place them at different points along your spine and rest and breathe into them to help alleviate chronic pain (you do this while lying on your back). They work as a sort of "massage/acupressure".

Well, I loved both of these, and bought the Pilates bouncy ball at Target and the Miracle Ball & book at Barnes & Noble last week. I rationalized it because I no longer have time to go to physical therapy or acupuncture and these are things I can use every day in my home to help combat my pain. I have to say that I LOVE BOTH OF THEM!!!! Not only are they easy to use and fun, but they really do make a difference in my pain level. I am still trying to do yoga (gentle yoga for now) at least 4 times a week and want to start walking on the treadmill again too.

I feel calmer about my work situation this morning. I phoned Super Babysitter "K" and asked her if she can watch babyE on Mondays and Wednesdays when I have my late afternoon class. She said that, yes, actually that's great for her because she needed a little extra money and didn't want to get an extra job (she's working as a counselor at a children's center during the day). I will bring babyE with me and "K" will pick her up at my office; so if I want to go in earlier to get work done I can and still be with babyE (she has a desk and toys in my office). I am so relieved to have a safe place for babyE for all four days now. "W" will stay at his friend's house on Mondays and Wednesdays until DH gets home at 4pm, so he is taken care of as well. I cannot even describe how much this has eased my stress level.

No more fun for me... I have to go read for a few hours so I can have an articulate lecture today... It is overcast and cool today and reminds me of the coming hurricane. I pray that everyone is safe in this country, whether they are in Florida, Georgia, the Carolinas, or anywhere that is affected by this storm system.

~ Clementine

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Hurricane 09-11-2004 - 08:31 PM
It's amazing to me how disastrous these hurricanes are. Thursday, here in Western New York, we had torrential rains as a result of the hurricane front. My university is along the Erie Canal and as I drove to work I noticed several closed roads and drainage ditches that were running like rivers, as well as flooded farm fields. As much as I love rain, this is too much. People's livelihoods, people's homes, our nation's food supply have all been negatively affected as a result of the incessant rain we've had in Western New York this summer. They say to expect a winter with record snow.

As I walked into my building at work, one of my colleagues told me classes were closed. I said, "You're kidding." He laughed and said, "No, I'm not." But I persisted, "I don't believe you when you have that twinke in your eye. I think you're pulling my leg." But it turns out that the village where the university is located was in a state of emergency from flooding and classes had just been cancelled. I decided to stay and spent the time organizing and planning in my office (which I desperately needed to do). I figured it would be confusing to babyE to pull her out of daycare 20 minutes after she arrived and it would be a waste of the long drive if I did nothing. I later found out that the town where I live was also in a state of emergency from flooding.

I pray for the people of Jamaica and Florida and everywhere else that has been negatively affected by this weather system. I wonder what next week will hold for us when the aftermath of hurricane Ivan reaches us...

I am trying to remain calm about my job situation. I still haven't heard from "D" about my Spring schedule. I did talk with the head of the art dept and she read me the e-mail she sent "D" advocating on my behalf. I am trying not to worry. I have a signed contract and the agreement was that my classes would be on the same two days after this semester. I know that I could handle the two day schedule. I know that I can tolerate this horrible fall semester if I know there is a light at the end of the tunnel. So I'm trying to be patient and wait.

Healthwise, I've noticed that the 800mg. tablets of ibuprofen I've been taking twice a day are making me nauseated. I think I need to decrease my dose. I also realized today that I've been averaging 6 hours between percocets, as opposed to the 3-4 hours of earlier days. I'm taking comfort in these little milestones. I also went to two of my favorite thrift stores today and bought some size 10 pants. I'm sick of wearing skirts and none of my 6-8s fit anymore I had a lovely size 10 wardrobe during the year after babyE's birth, but I donated it all when I lost the last of the baby weight.... ah, well. Sadly, I think it's going to take me some time to get my weight down again after the weight surge from all the hormones right before my surgery, and then the extra weight I put on since the surgery (about 12-15 pounds total!!!!!). At least now I have clothes that fit again; a lovely feeling. And I WILL lose the weight some day. I will.

~ Clementine
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A Shell of My Former Self 09-08-2004 - 05:56 PM
I am so physically and emotionally exhausted. I am still in serious pain every day and taking percocet and ibuprofen for the pain (at 3 months post op!). My dream job is causing me enormous stress. When I accepted the position, the schedule for the fall semester had already been established. Because the class times had been decided before the invention of my job, my classes are scattered. I have two on Tuesdays and Thursdays from 11:30 - 2:45 and one on Mondays and Wednesdays from 3:45 - 5:15.

This wouldn't be as big of a deal if I lived near campus, but I live a 30 minute drive away. Therefore, on Mondays and Wednesdays I spend over 3 hours away from home to teach one class! Plus, I am not able to see my son on those days until after 6pm. The reason I initially became a teacher was so that I could always be home with my children, so this is obviously not acceptable for me!

When I interviewed for the job I explained that I would do the horrible, rotten schedule this semester if they promised to schedule my classes on the same two days in the future. Daycare is $40 a day for babyE's school, which she goes to on Tuesdays and Thursdays. (Because they do all the major learning in the morning, I drop her off at 9:30 and arrive at my office two hours early.) BabyE loves her new "school", which helps. But I have no one to care for her on Mondays and Wednesdays during dinner-rush hour. DS "W" is too young at 10 to watch her. I'm hoping to find a babysitter who will come to the house. I am near tears all the time and I miss my kids.

"W" and I saw his psychiatrist today and he will be starting a new medicine for his bipolar disorder; one that has been recently approved and has immediate results, so that is promising. All of my free time is spent reading textbooks and planning lectures and driving. DH has started his imossible schedule of working two full time jobs: middle school during the day and college at night. He also has a hectic schedule travelling and playing at different symphonies around the country this fall. It occured to me yesterday that I am not home for dinner (or even to prepare it) two days a week-- that's the only time I get to see DH during the busy season, especially on the weeks when he is gone on a weekend. I am so tired and frustrated and sad.

I stopped by the library today to drop off some movies and pick up a book and watched the stay-at-home moms with envy. When I taught 2 days a week I still felt like I was a stay-at-home mom. Now I feel like a mom who is unavailable and absent, which is not how I want to raise my kids. I am so tired that I almost fell asleep driving today and I'm worried that all this stress will hinder my already hindered recovery. Oh, yeah-- I also have a facial tick!!! My left eye twitches uncontrollably several times an hour; sometimes evey minute-- I feel like a caricature! Life is too short to be playing these stupid games.

~ Clementine
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How to Draw 09-04-2004 - 04:51 PM
Thank you to everyone who responded to my last entry about daycare!!! Really, I have been so conflicted about sending babyE away (in case you couldn't tell ). I love being a mom and think it is the most important job there is. I loved being a stay-at-home mom these past few years. It was good for both kids. One of the reasons I took this job (besides that I still owe a zillion dollars in student loans to pay) is that it was only 12 hours away from the house each week. I thought how great it would be to maintain that kind of schedule even after babyE is in elementary school. Believe me, I work many more than that, especially this semester. Every chapter or reading I assign to my students, I must also read and plan a lecture or projects around. Then I have to do all the grading and meeting with students too. Anyhow, I hope that what wigenout, californiagal, Moonchime, Northlights, AudreyS. and floppsy say is true: that the socialization will benefit babyE. She is so excited, which contributes to my feelings that this will all work out okay.

Jmac35 wrote that she wanted to take my art class! I wish I COULD teach online! I posted some pictures in my photo gallery: one is a drawing that one of my student's did on the first day of classes last semester. The second is a drawing she did at the end of our drawing unit. This student was a non-art major and had never drawn before. I love to teach beginners and see their excitement when they can create something beautiful! I think that anyone can learn to draw if they want to. There are several great books out there. I use a combination of things I've read and things that worked for me. I also tell my students that the first thing they have to do is to learn to draw what they SEE and not what they KNOW. We do many exercises designed to learn how to do that.

I hope that everyone is having a restful weekend. I am hurting a fair amount today. I've come to a point where the percocet seems too strong, but the vicodin is not strong enough. Frustrating! I'm rotating at the moment, which works okay. I am also constipated today and have realized that I need to buy some clothes to fit my heavier weight. I weigh around 10 pounds more than I did before my surgery NOTHING seems to help... I am being patient and think I'll feel better if I buy a few pairs of pants that are attractive looking. I'm sick of wearing skirts and boxer shorts .

~ Clementine
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I Miss Last Month 09-01-2004 - 09:28 PM
Well, classes began this week and preparing for them entailed a few late nights scrambling to write my syllabi and develop curriculum. I am teaching three classes, all different. One I have taught before, so I feel fairly confident (teaching general art to non-majors). One was taught last year by my "supervisor" (she's not really a supervisor, but she is the head of the arts for children program, while I am merely the liason for the art dept.)... anyhow, she had selected a text and shared her syllabus with me, so developing my own was fairly painless since I borrowed many of her ideas . The third class is a method course (teaching future teachers how to teach art)... This course has been taught by non-art educators at this university for so long that it was being taught as an art appreciation class... eek!!! I had to call my mentor professor and she guided me towards an appropriate textbook, so I modelled my curriculum around that and a combination of things that I found successful during my own education and methods courses.

During this whole process, there was much time spent away from my family. Hours spent at school and driving around trying to find a good daycare for babyE for the two days when I teach two of my classes (the other two days my DH will watch her since it's a late afternoon class; he has watched the kids all week since he doesn't go back until after Labor Day). I want a school in the town where I teach, since it is a 25 mile drive from home and I want to be near babyE. I drove home in tears on Monday after visiting a daycare that had been highly recommended to me. During my visit I observed a worker sitting on a bookcase, chewing gum and looking bored while her three young charges peered over a security gate, seeking attention from any passerby; several rowdy children angrily talking about guns; and children running rampant with no apparent guidance.

I am very conflicted about working while babyE is so young. I wanted to be a stay-at-home mom until she went to school. What is stopping me, one might ask? This Opportunity. And the fact that it is only 12 hours of class time a week; though the preparation and assessment add up to much more, those are things I can do around babyE's schedule while I am home with her. I had convinced myself that this job would be okay since babyE is the type of soul who loves socialization. I thought a few hours a week in a daycare would enhance her curiosity and socialization skills. Yet none of the schools I visit are good enough for my child; for any of our children.

Then, in a packet of materials given to the new faculty, I discovered a hidden gem: a pamphlet for a daycare affiliated with the local hospital. I phoned and made an appointment to visit yesterday. Upon my arrival, I was met with a locked security door. In the foyer was a bookcase brimming with interesting books on childcare. I was greeted by the director who graciously gave me a tour of the brightly painted and cheerful school. The toddler room was filled with two short tables stocked with bright-eyed, polite looking youngsters sipping milk from open cups and eating muffins. I was greeted by TWO teachers (there is a ratio of 1 teacher per 5 students, as opposed to the 1 to 14 ratio at the previous places I had visited)-- the main teacher has been at the center for twelve years.

Sunlight streamed through the windows onto a carpeted play area and I was shown a schedule of the children's daily activities that includes daily storytime, art practice, brushing of teeth after all snacks and lunch, basic preschool concepts and (gasp!) a separate fenced playground for each class. The toddler playground featured THREE different jungle gyms of various heights and interests (this alone would induce babyE to happily leave my company). Each day the teacher fills out a little sheet for each child describing what they ate, what they read, their activities, and anything interesting. My heart was beating so fast that I wanted to laugh out loud. THIS was a place where I could comfortably leave my baby. Someone was listening to my prayers!

Now that I have found a safe haven for babyE and found a direction for the courses I am teaching, I have time to take a breath and mourn for the loss of my stay-at-home mom life. Even though I still consider myself a mostly-stay-at-home mom, I now have work stresses that will prevent me from always being 100% available to my family. My reasons for wanting this job are that these positions are near impossible to obtain. If I decide this college position is the future for me, I may decide to stay. If I decide to return to teaching high school, my desirability will be increased tenfold from having held this position.

My pain level has abated slightly since my last entry, but only just. I took a four hour nap yesterday evening and am living for tomorrow night, which will be my official "Friday", since I don't have any classes on Fridays. I am amazed and delighted by my friends here who continue to leave me encouraging comments, even though I have been a part-time hystersister of late. This continues to feel like a safe haven to me; a home for my soul.

~ Clementine
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About My Doctor Appointment 08-29-2004 - 12:19 PM
A monumental strom is brewing... the raging thunder has been getting closer every minute for the past hour... so this will be short! The sky has gone from sunny blue to ominous black and it's only 2pm. It's going to be a big one! We got back from our little trip to Ithaca, where we had a fantastic time! The countryside is breathtaking with rolling hills bordering Cayuga Lake, one of the fingerlakes. Cornell was steeped in history and beautiful; "W" really wants to go to school there now!

My appointment with the doctor went well. Although he said it is not average to still be hurting so much at 2 1/2 months post-op, it is not yet cause for serious concern. He said he would not worry about it until 6 months post op. At that point he might want to do some hormone suppression (I kept one ovary). He prescribed a cream that I can use internally to help with the pelvic floor pain; he said it is commonly used for heart patients, but has been recently used for pelvic pain. I have not had it filled yet-- I'll have to go the university pharmacy for that. Given the amount of surgeries and pain I've had in the past three years, he did not seem surprised that I am in pain still. He said that the muscular pain sometimes takes months to diminish. I was so reassured to hear it!

My DH came with me to the appointment and asked about the mood swings he claims I've been having since the surgery . Again, my doctor said that extreme mood swings for the first three months are normal and common and have to do with the violation of the surgery, again citing what he said before: that if he had done to me in Central Park without anesthesia what he had done to me in the OR he would be arrested for assault & battery, and that my body will react as if it has been assaulted. He also said that hormone levels can fluctuate greatly right after a hysterectomy when only one ovary is left, which affects moods. We also talked about long term chronic pain and depression. He said that people with chronic pain often suffer from depression and that the depression in turn makes the pain worse. He said that taking antidepressants can cut the pain up to 50%-- I said sign me up!!!

Because I am still nursing he has to research if it is safe for me to take antidepressants. He thinks it is, but wants to check on some recent research to be sure. I know I need to stop nursing soon (he said the lower hormone levels from nursing add to mood swings), but babyE shows NO signs of wanting to stop and, in fact, is very very attached to her daily fix. I never thought I would nurse her for 2 1/2 years even, but I obviously have a lot of emotional and psychological reasons for continuing.

I have to say that I'm very glad I went to my doctor... (I almost waited until the end of September). Our conversation really eased my mind and my panic about my pain. Today my pain is worse than is has been in about a month. My DH says that he's been watching the way I move and I walk and do things the way I did before I was in so much pain... he hypothesizes that I'm in pain because I'm acting like all is well when, in reality, I am still healing.

We are not in the center of the storm.... time so log off and keep my computer safe!

~ Clementine
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Off to the Doctor 08-26-2004 - 11:28 AM
I am sooooo tired today. Since this surgery (okay, for the past two years really) if I have one good day I must pay for it with at least one bad day... We are planning a little road trip today after my doctor's appointment to go to Ithaca and stay overnight. There is an art exhibit I want to see (a friend of mine) and we want to show DS "W" the Cornell campus. He has said since he was four years old that he wants to be a vet and two years ago decided he wants to go to Cornell. I know he's only 10 , but with his depression issues I thought it might be a fun little boost for his spirits to see what the future holds for him if he continues to work hard in school.

I'm very curious to see what my says today about my pain... sometimes I wonder if part of my pain stems from back problems, like Tam. But none of the pain center nerve blocks to the spine helped the pain and it DID diminish drastically the first month after my hysterectomy, so I don't know... I remember the neurologist giving me this example: he said if you were to hold your arm out to the side with a pencil in your hand the muscles in your hand would become tired... after awhile your arm muscles would also tire, and if you held the pencil long enough, your side would hurt. After you lowered your arm all those muscles would remain sore for a long time... sometimes days. He explained that it is the same with chronic pain. Once the source of the pain is eliminated it still takes time for all the aggravated muscles to heal. I am hoping that this is the case with me. I mean TWO YEARS of continuous pain can't possibly be so simply eliminated by anything other than divine intervention, right?

I need a NAP!!! Thanks so much jeanette, jrothaar, northlights, moonchime and gemsab for leaving such warm and encouraging comments. You've really made my day!

~ Clementine
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A Gazillion Weeks' Post Op 08-25-2004 - 09:31 PM
I don't even remember how many weeks post op I am anymore, which I suppose is a good thing because it means that my ENTIRE life no longer revolves around my recovery from this surgery. Or perhaps I simply don't want to become more depressed at the realization that I am still in pain when I shouldn't be. Tomorrow I have an appointment with Dr. Expert. I don't think he can do anything additional about the pain, but I still maintain that it's important to ensure that nothing is "wrong" (besides being in chronic, daily pain, that is!).

I am all moved into my office at the college with a fancy schmancy computer on the way and I got to download some software on my laptop to facilitate my teaching. I want to scan images of the things I usually show slides of so that I can put it into a Power Point presentation to keep for all times and not have to deal with slide carousels all the time and all the hours required with messing with that. It would cut my preparation time dramatically (just reread that-- do I sound BORING or WHAT?! ). Anyhow, I'm not very experienced with all the computer stuff (the word stuff is testament to that) so I have a LOT to learn this year.

Yesterday and today were filled with faculty orientation and meetings and while I am bubbling with excitement because at 37 years old I finally have my DREAM job, I am aching and exhausted. My entire pelvic floor feels like I've been sitting on a hard stone all day, my back hurts, and when things get really bad my lower pelvis hurts....

I've christened tomorrow a Day of Relaxation and I think I will explore The Road Less Traveled.... maybe I need to go there as restitution for being a fan of Robert Frost

~ Clementine
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Overwhelmed! 08-17-2004 - 05:04 PM
I can't believe that I am such a terrible hystersister these days! I think about writing every day, but everything has been so overwhelming lately. Still, I am hopeful that things will get sorted out and I am feeling enough energy to do it all again soon. I signed a contract a week ago last Friday for an Assistant Professorship in art at one of the state universities of New York. I taught there as a part time faculty last year, but they offered me a great full time position that was too good to turn down; the dream job I always wanted, just sooner than I wanted it!

I've always wanted to be a stay at home mom to babyE, and have been. This job, even though full time, will only be 12 hours of classroom time per week (academia). Of course, that doesn't include preparing, grading, planning, etc., but it DOES mean that for babyE I will still be around pretty much full time. I will put her in a daycare 6 hours per week and for the remaining 6 my DH will be home with her. SO.... there has been much chaos reigning around here.

We brought home a trailer of things from my mother's house and of course that entailed making room for all the new things... my beloved floor loom, a new desk for DS, a little refrigerator for my office, little desk for babyE that was mine as a tot, and many clothing discards from my mom since she retired this year. I finally got things settled into my office, including a spot for babyE with toys, etc, since I envision spending much time there with her when I'm not in class. I will teach 3 classes and do some advising for students with a specific major.

The house is finally beginning to feel like home again. When we returned from Wisconsin it didn't smell like our family, but like our house sitter's dog! Then, when we unloaded the trailer, there were bags, boxes and STUFF everywhere! Things feel better and become more organized every day. I don't start classes until the 30th so I have time to take it easy.

Health wise... I have good days and bad. I do feel a return of energy and a strength that I haven't felt for a long long time. But I still require percocet on a daily basis. I am trying to be patient about this. I can function like a normal person as long as I am out of pain and the percocet helps that. I think about Moonchime and Empresse who have also had a slower healing time with complications and I want to commune with you both! I miss all of my hystersisters, reading about your lives, cheering each other on... I can't wait until I catch up with my life more so that I have more time to devote. I need there to be three me's right now! And right now I need to go be the "mommy" me!

~ Clementine
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Home Again, Home Again, Jiggety Jig 08-08-2004 - 02:46 PM
I am finally home and back on the computer! It feels so very strange to be back on the site. I've missed it, but realize that I've missed so much of EVERYONE's lives that I feel a little disoriented. Will anyone remember me? Do I still have a place here? How many hours will it take me to get up to date? Whew!

There is sooooo much I have to write. I don't have much time now, after all the other internet catch-up I've had to do with PMs and a month of e-mail, etc., and a babyE fussing pathetically for my attention. The biggest news of all to report is that my vacation was NOT nearly as restful as I wanted or needed it to be... two kids and only me to tend to them should explain all there (though I'm glad I went and have many great memories). Also, I am at 9 1/2 weeks now and, contrary to the movie, am NOT having the greatest time. I still HURT. Everyday and enough that I need percocet or vicodin. I started bleeding again at 7 weeks, but stopped after a few days. I feel so abnormal

Will write more soon and in depth and I so look forward to catching up on everyone else's journies. It's good to be home, in more ways than one.

~ Clementine
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Mirror Mirror 07-15-2004 - 12:27 AM
I have been trying all night to get on the computer and was continually greeted with a busy signal... I've become so spoiled with our cable modem; it's quick and I never have to wait to get online. Now it's 1:15am and I finally got on the computer but don't have the energy to visit and read the way I had hoped I feel like a lousy friend, basking in everyone's generous and warm greetings yet leaving none of my own. Hopefully tomorrow I will have better luck getting on the computer earlier.

I find it amazing how many people commented that they love Always pads! After my horrible ordeal (which is much better after the Vaginex, though not completely cured), I figured EVERYONE must hate them as much as I do ! Yes, we are all different. You can all tolerate Always pads, while I cannot. You all heal within two weeks, while I trudge on with my percocets... I am of course exaggerating.

Being in my mother's house is like looking into a mirror of all my worst qualities. I see the way she yells at my brother (and at me in the past) and realize where I learned to lose my cool, since it's the same hated way I treat my own DS. I see her sleep all day because she doesn't feel well (it's always something) and then stay awake all night reading, and I am horrified because I have turned into her! I use my pain as my excuse. "I hurt at night and so have to read myself to sleep..." but have to acknowledge that it's just as much a habit as anything. Self-realization can really stink. I have so much room for improvement, and hopefully am learning some valuable things that will help me grow as a person.

This afternoon I walked through the park behind my mother's house to the old cow pasture that we used to sneak into as children. The old wooden fence covered with barbed wire is still there and beyond it lies what my image of heaven would be: a beautiful pasture dotted with gorgeous maples and oaks in a rolling meadow that is more woodsy than meadow, with patches of sunlight warming the grass. I remember carefully climbing the fence and dodging the owner whenever we would see him in the distance. Rumor had it that he didn't cotton to trespassers, though he surely spotted us on more than one occasion and never said anything. He has since died and donated his land to the park and they have turned it into a disc golf course, though parts of the old fence remain and the meadow has been left intact, the golf course winding skillfully through it.

This afternoon "W", babyE and I walked the course while "W" played disc golf. I'd love to say it was relaxing and heavenly, but "W" was acting up and treating babyE (and me) badly and I was hurting. We came home and sat on the porch instead, after the necessary discipline-time-out-mother-son talk. BabyE began screaming inconsolably; she had a huge blister that popped on her little toe and my mother and I doctored it up and then I had to cuddle and nurse her to sleep. When she awoke, we filled the little pool on the deck and I swept... yes, I know, big mistake, and one I am paying for now.

And on the note of changing bad habits, I now need to get some sleep. I need rest more than anything else right now.

~ Clementine
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Made it to Chicago! 07-13-2004 - 07:57 PM
I made it to Chicago on Saturday and I can't believe it's taken me two days to write! I've had Hystersister withdrawal!!! I tried using my laptop last night, but need to change some settings that I was too tired to figure out. So I am typing this on my mother's dinosaur computer with dial up modem and it's so sloooow and incredibly uncomfortable to be sitting in a chair, so this will be so short! I will investigate the laptop situation more tonight so I can browse tomorrow and catch up on everyone's journals! Sometimes I wish that I could just read all the updates like a book, instead of having to be connected to a computer.

The day I arrived (Saturday), I needed to change my mini-pad, so I used one of my mother's. It was the brand Always, which is not my usual brand. Within a few hours I had a huge irritation on my vulva. I didn't make the connection and slept with the pad (I figured it had something to do with travelling and being tired). The next morning I awoke convinced that I had a yeast infection. As soon as I removed the pad, I began feeling better and realized that I have a huge irritation to my vulva and lower vagina. Something in the pad must have irritated me. It was unscented, but I wonder if they use latex, which I am allergic to Of course, no ingredients are listed on the packaging.

Three days later, I am still irritated. The swelling has gone down, but there is a rough patch of skin on my vulva that hurts so badly I can hardly walk! I phoned my doctor and he told me it would be fine to use a cortisone cream or something that has an anti-inflammatory; I just bought some Vaginex II, and it has helped with the pain enormously in only an hour-- whew! It's amazing how something so little can negatively affect one's quality of life. I bought some boxer shorts to wear because regular underwear irritates it no end!

On a lighter note, it's nice being here, but not as restful as I had hoped. DH and "W" drove up on Saturday also, but DH had to leave Sunday morning for Door County. The reason I didn't go this first week is that the camp where he is teaching didn't think they would have a room available for him alone (in other words, he would have a roommate). Well, it turns out he DOES have a single room, so we could have gone. I'm still a little sad about this. It's also difficult being away from him now because he is in such a wooded, rural area that his cell phone doesn't work, and he does not have a private land line he can use; I'm going through major DH withdrawal.

Sunday, my brother, SIL and niece came over, as well as my aunt and uncle and a cousin. It was nice seeing everyone, but exhausting. My aunt and I took a short walk in the park with babyE and "W" and that felt wonderful. It's always strange being back here, in the house where I grew up, sleeping in the bed where I dreamed all of my childhood dreams. My SIL has been coming over every day with my niece. We're not really that close and of course I love my niece, but my mother is much closer with her since she sees her all the time and babyE doesn't have as much quality time with her. When my niece is here my mother acts like she is my niece's mother... it's very weird. BabyE does not get as much one on one and it makes me a little sad. I am very eager to go to Door County on Friday.

My mother is also very tired, so basically I've traded one house where I have to take care of the kids all alone for another house where I have to take care of them all alone. At least this one doesn't have stairs! And we've been having fun sitting on the back deck with the little pool... babyE LOVES the little pool, and "W" is a real nature kid, so he enjoys being in the yard.

My pain level seems to be getting better... I say that cautiously! But I have gone from having to take four 800mg. motrins per day to taking two per day, so that is a huge change. I'm also going longer between percocets (5-6 hours versus 4, and 10 hours at night). Even with all the travel, and trying to take a walk every day, the pain seems a bit less intense. I am actually beginning to feel optimistic again that I WILL be out of pain some time in the future.

I've missed you all! It feels so good to be back!

~ Clementine
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Leaving on a Jet Plane 07-10-2004 - 06:04 AM
I think that we're all packed. Thank you all so very much for your encouraging comments yesterday! They got me thinking that I wished I had someone who could come and help me, and then I realized that I DO have someone... I put in an emergency phone call to Super Babysitter "K", and the angel was here within a few hours! A neighbor had brought by a chicken casserole (she just found out about my surgery) so we all had a healthy, hassle-free meal!

Anyhow, "K" helped enormously with the kids, with carrying things I shouldn't, and even with perusing everything I had packed and helping me cut out a few items so everything would fit! It's so weird because "K" is only 24 to my 37, yet I feel like she's become one of my closest friends. Still, I made her accept money, because she's just started a new job, those paychecks aren't coming in yet, and I figured she could use it. I also loaded her down with three bags of produce from the refrigerator.

So, Ladies, I will be writing to you soon from Chicago. Just one short plane journey and then a car journey away. I'm hurting so badly today from all of the activity yesterday... can't wait until tomorrow morning when I can sleep and not have a momentous day before me!

~ Clementine
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Overwhelmed! 07-09-2004 - 09:24 AM
In less than 24 hours my DH and DS "W" are supposed to be packed up and on the way towards Chicago. Though my flight will leave later in the day, the packing needs to be done before DH leaves since I'm not bringing any luggage with me; just babyE, a diaper bag and a stroller. I am not even close to being finished packing, the house is a grand wreck, and today I HURT SO MUCH! Probably as a result of all the invasive pushing, poking and prodding Dr. Expert did yesterday. I can barely stand up straight today.

My DH is working nearly all day and then has a gig until 1am, so I feel responsible for getting as much done as possible; we are both so overwhelmed! This would be difficult enough if I were healthy. Being in pain, having DH gone, and two children to tend to makes it nightmarish. Poor babyE woke in the middle of the night crying.... so sweet when I went to get her, saying "thank you." But she kept me up the better part of the night and this morning she is all about mommy...

I've decided not to worry about cleaning the house the way I always do before we leave for a vacation. For one, I can't physically do it. Plus, I just do not have the time. It's really not that bad and our house-sitter is a man; the same ex-student whom my DH has used for the past several years. He won't care. All of you have been so fantastic leaving supportive comments for me; you have really helped me make it through these past few days. I'm sorry I've been a lousy friend... I am so behind on reading everyone's journals, but will have time to catch up once I get to my mom's house. Right now, it shines like a beacon in the night.... no stairs.... no cooking.... help with the kids.... Ah!

~ Clementine
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News from the Doctor 07-08-2004 - 08:27 PM
Well, I am back from the doctor's office for my 5 week post op. Fortunately, my DH came with me, so he was able to remember everything I wanted to ask but might forget. The GOOD NEWS is that my vaginal cuff is healing nicely. There is a small section that could use a little more time to be completely healed, but I didn't need any sutures! Hooray! He also said that in another two weeks we could have intercouse, but to not penetrate deeply until after 8 weeks (hmmm.....). I can also travel quite safely and have the go ahead to begin doing gentle yoga whenever I feel ready. He acknowledged my swelly belly as being very normal for this stage.

Now for the BAD NEWS... my pain is not normal for 5 weeks. He is concerned that I am still in so much pain. He pressed on different areas of my pelvis and had me do some "crunches" to determine the source of my pain. He then did an "internal"; you know the kind-- one hand inside, one out. My right ovary is doing well, but on my left side he said he could feel a "thickening" where I have a fluid filled "sac". So... now he again says that I probably DID have a hematoma the first time I bled and that there is residual blood that has not yet been absorbed by my body. He feels that this is the source of my pain.

He did not do an ultrasound because he said doing one would not change his course of treatment, which is to be less invasive and allow the body to take care of it naturally (my doctor is big on self-healing). He said that the size of the sac is large enough to cause pain but small enough to not pose any danger. I was okay with this diagnosis, until I came home and watched Oprah, where they talked about performing simple tests and getting second opinions, etc. But I do not have a fever, my blood pressure is normal, and I trust my doctor's expertise and diagnosis. He also gave me the name and number of a good doctor friend of his in Chicago whom he trusts should I have any troubles while I am in Illinois & Wisconsin, so that is reassuring.

My DH asked about emotional upsets and hormones, and Dr. Expert said that when an ovary and tube are left and the ovary is functioning, there is not really a change in hormones. He said the remaining ovary compensates for the one that is gone and there are not any changes in hormone levels. He added that what DOES occur after this type of surgery is an emotional stress from having had surgery. He said that if he were to take me to Central Park and do what he did to me in the OR, without anesthesia, it would be considered assault and battery. My body, he says, does not know the difference. It is in shock and responds accordingly. He said that some patients suffer symtoms of Post Traumatic Stress Disorder after hysterectomy, and occasionally he even gets a patient who will be clinically depressed for months after the surgery. I found this so immensely reassuring and comforting to hear.

For the pain, Dr. Expert told me to take the percocet. He said that he would rather have me be comfortable than in pain and that I should not worry that the pain will continue forever, but should think positively. We discussed my having had 3 surgeries and a baby in three years and he agreed that that could definitely affect the length of my recovery. I reminded him how last year it took me three months to be out of pain and recovered from my laparascopy/appendectomy, but I did eventually get out of pain (until my endo came back again, which hopefully won't happen this time!). He believes that my pain will subside within the next month or two and reassured me that if it doesn't, we'll take care of it then. It's comforting when he uses phrases like "we" because it makes me feel like he is a partner in my health.

Dr. Expert also gave me a copy of my pathology report. We went over some of it. I confess, my memory is not the greatest about all he told me. My left ovary was "attached directly to the left uterine wall" and had multiple cysts. My cervix had a cyst, chronic cervicitis, and squamous metaplasia. My uterus had a peritoneal cyst and endometriosis and there was endometriosis and fibrosis elsewhere too (I don't need to list all the nitty gritty). I will see him again in two months and will ask more specific details then. It's good at this point to know that I was indeed suffering from multiple ailments and that now I have a good chance at being pain free. I need to doctor and DH instructed, and think positively.

~ Clementine
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How Embarrassing!!! 07-08-2004 - 11:38 AM
So I am finally getting to see my doctor for the all important check up. I have all of my questions lined up, my DH is coming with to be a support and to remind me of anything I might forget, and.... I have diarrhea. No kidding. I am so grossed out. I have two hours before the appointment. Is this not every woman's nightmare??? For this to happen right before an internal exam...?! Yuck. I'm going to dip my body in a vat of soapy water and scrub for the next two hours... On a positive note, my swelly belly has gone down a bit.

~ Clementine
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Is my swelly belly GROWING? 07-07-2004 - 11:54 PM
I woke up looking a trim 4 months pregnant and am now going to bed looking like I'm entering my 3rd trimester Has anyone else experienced this horrid phenomenon? Of course, it doesn't help my fears that my DH said he's worried I'm "bleeding" inside or that I have a blood clot (not exactly happy, positive thoughts). There's lots of gurgling going on down there too. Maybe I'm just going to give birth in the morning to a big poop.

~ Clementine
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Frustrations 07-07-2004 - 10:44 PM
I finally had a stretch of time to catch up on the journal entries this afternoon, a brilliant storm was creeping overhead, blackening the sky. And then... the cable went out! Since we have internet access via cable that meant no hystersisters! Boo hoo . I'm up and running again, but it's late and I'm tired mentally and physically.

My DH is very concerned about my health; specifically, my sloooooow recovery, and it's got me a little down. One of his friends told him that I looked bad (tired, sick) at the barbeque on Sunday, so he (DH) got it in his mind to call his sister-in-law who had a hysterectomy about 10 years ago. Of course, she sent sympathy and said that at 4 1/2 weeks she was feeling a lot better. I know he says he's just concerned, but it's irritating. I was doing okay mentally with my slow recovery and now I feel all of this pressure to get well quicker. I feel like I have to point out to everybody who looks at me like I'm a baby or a drug addict that I have had THREE SURGERIES AND A BABY in three years. Not to mention, that I've been in chronic pain for two years. This are not exactly the ideal situation to go into a major surgery.

My DH contends that we need to have a serious talk with my doctor tomorrow at my pre-6 week checkup (at 5 weeks since I'll be out of town at 6). He thinks we should be sure I don't have anything serious wrong, especially since I'll be flying in an airplane and we'll be out of range of good doctors for the better part of a month. I don't disagree with him, but the aggressive way he's approaching it all has me tense and defensive.

Tonight, one of our good friends and his wife came over for water and a short visit. This is a very sad situation. "B" has been one of my DH's best friends for over 20 years and he was diagnosed in December with an inoperable malignant brain tumor. He underwent aggressive chemotherapy and radiation, which shrank the tumor, but did not get rid of it. "B" has always been on of my favorite of DH's friends (he was the first one I met and told my DH that he'd was crazy if he didn't marry me, so how could he not be my favorite?). He has become a friend of mine, as has his wife. Our children play together. The tumor affects his short term memory, so having meaningful conversations has become difficult. In December it was impossible. Today, however, we all had a nice visit; "B" was lucid and not as repetitive as he has been in the past. But, still, it's a terrible situation and fills us both with feelings of helplessness and great sadness after they leave.

I still hurt. I still have a brownish discharge. I slept all afternoon, and I'm exhausted now. The vicodin isn't strong enough, so I've had to take percocet all day. And now I don't know how I'm going to go on a long vacation in just three days.

~ Clementine
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I Haven't Got Time for the Pain 07-06-2004 - 09:57 PM
I miss Hystersisters! This is the first I've been on all day and my DH is exhausted and wants to go to sleep, so my time is limited tonight... I will have so many journals to catch up on tomorrow; it's something to look forward to. I fear that tomorrow will be an in-bed-all-day day (too much afternoon activity). Overall, my pain has been much less again today. My body is finally healing from those two busy days. I rested all morning and took an early afternoon nap.

This afternoon I searched my wardrobe for clothes to take during our 3 1/2 weeks away. My summer clothes don't fit! My belly is so swollen that none of my cute shorts or little skirts span around it... I have the figure of a 5 months pregnant woman, except that I'm not pregnant. And the last thing I want is someone congratulating me on my pregnancy! To compound things, I'm always holding my pelvis because it's sore, just as a pregnant woman would. Anyhow, I'm handling it better than expected, since I have a borderline anorexia complex.

I don't starve myself the way I did in my twenties, but I do still have a tendency to get obsessive about what I eat. Now, my obsession is more about eating healthy foods and exercising, and I think it's never a bad idea to try to be healthy, so at least the manifestation of my obsession is not dangerous. But I realize that I had this surgery and I knew in advance from all of the hystersisters that my waist would be compromised for awhile. I have three long pretty skirts that are kind of wrap aroundy (expandable waistlines). I also have two pairs of "fat jeans", one pair of cargo pants, and one pair of shorts that fit, so I will be able to manage. After trying on several articles of clothing, however, my abdomen started really hurting. It's amazing to me how performing a simple task like dressing has become a major exercise.

I also went today to get my hair cut and colored. That's always a 3 hour event. I made the hair appointment two months ago, before I even knew I was having surgery, and I kept it because having pretty hair makes me feel good and I want it to look nice for our trip, especially given the limited clothing situation. It's the one thing I splurge on. I will shop in thrift stores, and am an insatiable bargain hunter, but when it comes to my hair I'm willing to pay extra. I go to an Aveda salon that uses all natural products and where the atmosphere is comfortable and inviting. I was born a blonde, but need a little help now to stay one .

I am nervous that tomorrow I will be incapacitated again because of the salon visit and the trying on of clothing. I don't have time for pain since we are leaving Saturday. My plan is to do a tiny bit of packing each day, so tomorrow is important. Today was my wardrobe, tomorrow is babyE's toys & clothes. My DH surprised me tonight by doing three loads of laundry. Our washer and dryer are in the basement, so he has been doing the washing and drying and then carrying the clothes upstairs for me to fold. I think I'm a little crazy, because I really like folding clothes... especially all those cute little baby girl clothes .

Thursday I see Dr. Expert and am keeping my fingers crossed that I won't need a suture in my vaginal cuff. There has not been bright red blood since early last week, but I still have that disgusting brown discharge. I wonder how long that will remain. I can't wait to wear pretty underwear again with no protection!

~ Clementine
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List of Thanks 07-05-2004 - 10:02 PM
I have done nothing all day today except sleep. Occasionally, I would wake up and read a few pages or eat a little something, and then I would close my eyes and wake again a few hours later. I finally woke around 7pm and have been up since, but I'm getting tired again. I cannot believe all the sleeping I've done today. My poor husband is getting frazzled. He's working all week and we're leaving Saturday for our month in Wisconsin. He and DS will be driving and babyE and I are flying (1 1/2 hour flight versus 10 hour car drive). I've been making lists and am planning to pack very lightly this year. Since I won't be able to pack or unpack the car, I need to make it easy on my DH. Plus, I need to make it easy on myself since I don't want to be in bed the whole trip recovering from overpacking! I guess there are advantages to the fact that hardly any of my clothes fit over my swelly belly!

I think that my pain is a little better after all the sleeping. I plan to take it as easy as I can all week. Thank you so much to everyone who gave support today. Really. It was the highlight of my day. Well, next to the comment my DH made when I was lying in bed in my nightie with all the covers kicked off because it was HOT today! He said, "It's too bad you're hurting so much, because you look sexy. It's like having a Ferrari in the garage and not being able to drive it." Now, who wouldn't like to be paid a compliment like that when you feel like you've been run over by a truck and are so swollen none of your clothes fit? :rofl

Northlights, thanks for sympathizing and letting me know I'm not the only slow healer.

Moonchime, thank you for always writing positive words, and for being the original inspiration for my journaling.

AudreyS., thanks for correcting my drug induced memory lapse .

EileenJ, thank you for your stories and words of good cheer! They are always a great joy to read!

TxRiss, thanks for always offering encouragement and for experiencing everything I am experiencing... tee hee.

PraireLakeLady, thank you for your wisdom and the empathetic nature of all of your comments, always; remember that you too need rest!

icare4bunnies, thanks for always saying nice things to me, even while you are struggling with your mother's illness, your wacky thyroid, and a teenage driver!

lostincanada, thanks for your words of encouragement... everything will work out fine for you.

gemsab, thanks for always helping me keep things in perspective. BTW, aren't we practically neighbors?

hunnybunches, thanks for being a sweet sympathetic friend.

kim308pl, thanks for being such a sweetheart and always making me feel okay; those ladies who come to your dinner parties are the losers, because they are missing the greatest opportunity in your friendship.

californiagal, thanks for always being so real... I have grown through reading your journal and comments.

deegeorge, rest honey... you have been through so much, but everything will be okay; thank you for always remembering me.

ceedeewho, thank you for always injecting humor and comic relief into any situation, while still maintaining grace and sympathy.

Jmac35, thanks for your always kind words that seem to hit the right spot every time! Now, drink your water!

solana2, thank you for being such a good cheering section... now I want to rewatch "Seabiscuit" and look for your DH and FIL!

floppsy, thank you for sharing that you too had a longer time healing... it's ALWAYS nice to know I'm not alone!

If I missed anyone, thank you too. Each and every one of you play an integral role in my peace and sanity during this trying recovery. You are all strong and amazing women!

~ Clementine
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Can't Even Believe the PAIN 07-05-2004 - 11:24 AM
I fully admit that I had two days where I overdid it. The first day was Friday. In the morning, I drove 15 minutes to a toy store to buy a little magnetic dollhouse that I can take on the plane to keep babyE occupied when we fly to Chicago next Saturday. Then back home. Later in the day, fueled by my energy and feelings of well being, I drove babyE to Walmart. We parked right in front of the store, walked to customer service to return the non-Strawberry Shortcake panties that Super babysitter "K" picked up, and then back to the car. No shopping at all there.

Next, we went to Toys R Us. Again, I wanted some type of portable suitcase dollhouse that I could put babyE's dollhouse people and furniture in for the trip. BabyE is a dollhouse and doll nut. Every day she devotes hours to her dollhouse world and so I wanted to be able to have something besides just the furniture & people for her little community... their own vacation cottage, tee hee. We will be gone for 3 1/2 weeks and I need to bring long lasting toys that won't fill the car! I found exactly what I was looking for and paid for it. Directly next door to Toys R Us is a grocery store. I went in to pick up some bread, milk and strawberries, and then right back out to the car and home. Each time babyE needed to be put into a cart, I had someone else do it or me. I walked slowly and didn't linger anywhere. I was very sore the next day, as I wrote, but rested the whole day.

Yesterday, my DH and I went to the movie. Again, he let me off at the very small theatre, we walked in, sat down for the 2 hour documentary, and then came back home. I rested before the barbeque at our friends' house, and while I was there I sat. DH brought me food and I didn't clean or do anything strenuous. I was more passive than I would have been at home.

So why is it today that I feel like I've been beaten up all night long in my pelvis? I seriously feel like someone very strong punched me about twenty times in my lower abdomen. I woke in tears and had to break out the percoset AND the motrin. No vicodin for me today; too wimpy. Last night my DH and I watched "Seabiscuit" in bed and I loved the quote where Red, the jockey, was talking to Seabiscuit, the horse. Both were injured, and he told the horse in a reassuring tone: "You know what Hadrian said about Rome... brick by brick..." That's my new motto.

But still, I am discouraged at how very badly I feel. I feel first week bad. My DH is reassuring and told me that I can't put all the blame on myself. I should talk to my doctor and maybe I need to have an ultrasound to determine if everything is okay. I have my checkup this Thursday (at 5 weeks since I'll be gone at 6). My hunch is that everything is okay. I went into this surgery the weakest I've ever been in my entire life. I had just suffered through an almost continuous 2 year period of chronic daily pain. My recent health history goes like this:

May 11, 2001 - Laparascopy to remove endometriosis (after 6 months of serious pain); Dr. couldn't remove all.
May 31, 2001 - Feb. 22, 2002 - Pregnancy & delivery of babyE.
April 24, 2003 - Laparascopy & appendectomy to remove endometriosis (after 8 months of extreme pain)
June 4, 2004 - TLH with LSO and removal of endo & adhesions.

I needed to look at it like that. It helps me to keep things in perspective and realize all that my poor body has been through in THREE years! I think I said once that I've had 3 surgeries in 4 years, but it's really been 3 surgeries plus a baby in 3 years! If this were anyone else I would be the first to tell them of course they would have a slower recovery. Why is it always easier when it's someone else?

And now my new mantra... brick by brick.... ~ Clementine
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Invitation to my Pity Party 07-04-2004 - 11:09 PM
I feel so utterly lousy tonight. Yes, I know I overdid things the other day with my brief shopping jaunt. I rested all day yesterday. This morning I rested until we went to see the movie and then rested again before the barbeque with our friends. Even there, I didn't do any of the things I normally would do, like clean or chase children. I just sat, ate, and we left fairly soon. But my pain level is so high that not even the percocet is touching it. I'm trying to wait as long as I can to take the next one because my head feels so foggy and achy from all the pills I've had today, compounded by the humidity. To describe the pain: it's an all over, swelling, lower pelvic pain. When I'm not laying on the heating pad, my lower back hurts as well, and my inner thighs are hurting too.

I received an e-mail today from a friend/hystersister who recently had her surgery and is still in a lot of pain (not unusual). Her doctor told her that she shouldn't hurt since the surgery was a week ago and refuses to give her any pain medication. How can doctors do this??? My sweet friend, who is always so thoughtful... I could feel her pain in her words. Isn't there something we, as women who have had this surgery, can do to change this "no pain pills after major surgery" nonsense so many doctors inflict upon our hystersisters? I feel so helpless. Here I am, four weeks out and in so much pain even the percocet isn't working, and my friend is one week out and told to take motrin. Do they want us to kill ourselves in a fit of pain?

My barbeque was okay; better in some ways and worse in others from what I expected it to be. (Sanguiness, californiagal, TxRiss, Moonchime, Eileen, Jmac & ceedeewho, thank you for your supportive encouragement about my going.) My husband's colleagues/friends are all nice men and very sympathetic. One of the wives is also sympathetic and has been very kind throughout this month. She watched babyE on the day of my surgery for us. She has, when babyE was born and last year during my laparascopy, brought us dinner. This time she didn't because she had to go out of town for her son to have special surgery. She has six children of her own, so her concern is more than enough.

The other woman, the one I thought I was good friends with, did nothing. She had just forgotten my birthday and then was out of town when I found out about and had the surgery. But she never phoned to say hi (though she knew from her husband, who brought me flowers from his flower garden) and when she did come back to town she finally called and asked, "Are you feeling better?" as if I had a sprained ankle and it's almost better. I know I've written about this once before, and don't want to rehash all my old hurt feelings, this is just the Cliff Notes version .

What hurt about it is that I thought we were better friends than that. I know from reading everyone's journals, and posts, and even the comments from my last journal entry, that we have all experienced this from one or more "friends" after our surgery. I can't avoid this woman completely because she is the wife of a good friend and colleague of my DH. What I'm striving to do now is to redefine the relationship in a way that I am comfortable with, but at this point I still feel a lot of hurt. I felt awkward tonight. She hugged me hello and I gave her a hug when we left and thanked her, but we did not talk more than politely. It was sad for me because we used to share confidences and she always wanted me to come over for tea or to talk or to give her advice about decorating. It would be so easy to slip back into it, but I want friends who give as well as receive. I want friends who care. My mother tells me to turn the other cheek, but she has slapped both and I'm not up to another beating at the moment.

The third "wife" at the party is a vixen. (I've never used that word to describe a fellow woman; only read it in old romance novels, but it applies here! ) I have never done anything but be nice to this woman, but from the beginning she has said negative, bitter things about me. She even told my DH before we got married that he shouldn't get too involved with my son because he's not her problem. Lovely, eh? I used to go out of my way to say hi to this woman or engage her in conversation. The result was always a negative, cynical reply and no inquiries into me or my life. Eventually, I stopped saying anything beyond, "hi." Today I couldn't even manage that, especially given the fact that she made no move to acknowledge me or my presence whatsoever, though she was very friendly to my DH. He says that no one likes her and they all put up with her because they like her husband. Still, she talks to the other two wives and buys their children presents. She won't even talk to my children... and the most baffling things is that I have no idea what any of us has ever done to deserve her contempt! Well, besides being a divorced single mother and not a once married woman like her.

So, given tonight's climate, and my pain level, I'm feeling a little teary right now. The good wishes at the party from the kind people even felt a little overbearing... I can imagine how people with cancer or AIDS might feel. Most people don't know how to deal with illness. Suddenly, people who have known you for years act flustered and self conscious when they talk to you. They ask every ten minutes how you're feeling... It's well intentioned, I know, but serves as a reminder that I'm less than physically whole right now. I'm still the same person. I still have other things I think about and like to talk about. Oh, I'm going to sleep before I break out the streamers and cupcakes for this pity party!

~ Clementine



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Fahrenheit 9/11 07-04-2004 - 02:51 PM
My DH and I went to a matinee this afternoon to see "Fahrenheit 9/11." It was the one movie that I really wanted to see and I so very highly recommend it to everyone. I'm not going to get political here, but I have always liked Michael Moore's documentaries. This documentary was profoundly moving. My husband and I were both in tears several times (and he's not a crier) about scenes from 9/11, the war, our troops, families of our troops, and the citizens of our country.

When I taught English my students read the novel "Fahrenheit 451," which, if anyone doesn't know, is a novel (written I believe in the 1960s) that is about a futuristic society where everyone has televisions that fill their walls and has music and voices that they walk around listening to on headphones. In the novel, books are banned and the firemen are sent to burn the houses of anyone who is found to have any: no free thinkers allowed. Everyone lives in a state of fear. Anyhow, when I taught the novel I had my students make short videos depicting any scene. I had a group of 4 remarkable boys who put together an amazing video (they spent 80 hours on a 10 minute segment) and the video was chilling. The bizarre thing is that two of the songs my students used in their video for "Fahrenheit 451" were in the movie "Fahrenheit 9/11."

I hope everyone is having a good holiday. Thank you deegeorge, Moonchime, Eileen, gemsab, PraireLakeLady, TxRiss, hunnybunches, Jmac, and floppsy, for your concern and uplifting comments. It helps so much to know you care. I'm not really feeling much better today, but it's a holiday so I'm trying to put on a brave face.

We are headed to a barbecue with some friends... two of the three women were some of those friends we all have who we realized after our surgery are not really friends at all. Never called to inquire about me or offer help, etc. My DH doesn't fully understand how hurt I am by this and how it is too soon for me to go socialize with them and pretend everything is normal... Yet, the husbands are good co-workers of his (in fact they showed more concern than their wives; one of them even bringing me flowers). So I told him we should go for an hour, eat and come home so that I can rest up for the fireworks tonight... He doesn't want to go to fireworks after having seen the movie, but I believe that fireworks celebrate the citizens of our country and not necessarily our government. If I lose the belief that each of us can make a difference, then I don't know how I would get the motivation to go on. I still believe that the honest, hardworking people can succeed.

~ Clementine
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Happy 4th of July! 07-03-2004 - 11:00 PM
Happy 4th of July, Sisters!

First of all, before I write another thing, I have to thank you thank you thank you to everyone who wrote in and reassured me, offered advice, shared stories, and just generally comforted me today about my "O" fears and discoveries. Sanguiness, californiagal, hunnybunches, Moonchime, jeanette, floppsy, solana2, TxRiss, ceedeewho, & Jmac, I can't tell you how especially comforting your comments were. So many of you sound so much like me and have even had similar experiences that I feel so less stressed now about having sex again.

I am glad that I experimented before the "big night" with my husband, not only because I know everything still works, but because without the subsequent journal entry I would not have received all of your feedback. I believe you all that things will get increasingly better each time and also that as my pelvic floor and abdominal muscles grow stronger, so will my pleasure. Thank you all so very much for taking the time to reply. I feel so reassured!!! In a way, we are all "virgins" again after this surgery; not knowing what to expect, being nervous, and having to learn how these new bodies work! I told my husband that now he married a virgin !

All day long today I have paid the price for my shopping extravaganza of yesterday. I've been laying down a good portion of the day and my pelvis feels so incredibly SORE (the way your stomach would feel if you did 300 situps, but, of course, all I did was walk!). I've heated up my heating pads so many times today I can't even count them all! My legs are sore too. It's amazing to me how drastically a month of rest can affect one's body. A short walk is a major excursion! I need to continue the walking, but not go overboard. I think moderation and gradual increases will be the most gentle way to get this body working again.

I've been having weird sensations in my spinal cord today, near my SI joint. I had several injections and even some nerves burned at the Pain Center last fall and the feelings I've been having are in a similar area and even mimic the feelings I had when the neurologist "jolted" me with electricity to find the proper areas of pain. I wonder if these feelings are the nerves regenerating in my spine, or if they have something to do with the surgery. The don't hurt exactly, but they are odd and definitely distracting; it feels almost like a shooting pressure. I wish I had never done all those "experiments" at the Pain Center. Supposedly, the injections work for some people, but they never worked for me and my advice would be to tell people in my position to avoid them. There can be long term damage and consequences and I pray that I will not have any of them.

It's late and I must finally rest. I love you all; you are so kind to me and I care about all of you and your lives. May everyone have a beautiful tomorrow, whether you are celebrating the 4th in the US, or just having a normal Sunday elsewhere on our planet.

~ Clementine
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Freaked Out! (very personal) 07-03-2004 - 08:49 AM
About once a month or so, for as long as I can remember, I have these erotic dreams where I wake up in the middle of an orgasm. The content of the dreams varies, but the end result is that I get so excited that I wake up with a bang (tee hee). Anyhow, last night I had one of those dreams and when I woke I felt so close but... nothing happened. More than that, it felt like nothing could happen, like there was an absence of something deep inside that used to contract during the grand finale (something like, say... a uterus).

I was so upset I couldn't get back to sleep. I went downstairs at 5am, had a bowl of cereal and played with babyE's toys (anything to get my mind off of the imminent). My doctor had told me during my pre-op that sex might feel different, especially if I have contractions that involve my uterus, which I knew I did. So I went into this knowing that it would feel different; but I thought I would still be able to reach completion.

This morning, completely groggy from being up half the night, and extremely SORE (I way overdid it yesterday; so badly that I cannot even confess to you all the details yet... let's just mention the words "Toy Store".... "Walmart".... "ToysRUs".... and "grocery store" and you get the idea) I woke up as my husband was getting ready to leave for work. I told him what happened, expecting him to shoot me a look of pity, or horror, or something akin to what I felt inside. Instead, he gave me a loving kiss and said that my body has been through a lot and it's just going to take some time to figure out how everything works again. He added, "I'll help you." That moment is now in the top 10 wonderful, romantic things he has ever said or done for me; a snapshot for the life album of my mind.

Later this morning, I just couldn't stand not knowing... I set aside some time to see if my body could still do this wonderful thing for me, or if it is something I needed to add to the list of things I need to grieve (fear not, all external stuff here). Let me tell you, I had to pull out every fantasy in the memory banks, I was so freaked out about things not working. I can completely empathize with men who become impotent having "performance anxiety." And then finally.... a real orgasm. It's true it was different... for one thing, it didn't hurt and I'm not having horrible cramps now. It was smoother, a little less dramatic (probably because of the lack of pain, which had become such a part of my everyday life), but still fulfilling and complete.

Now, I'm sure paying for it. My muscles inside, which haven't been used for a month are saying, "Hey, what the heck just happened? We were sleeping!" And I think maybe that's why things took so long... I am so out of shape and injured from this surgery. Now that I know it all works, I'm content to let things rest awhile. And I need to rest too. Yesterday felt restful enough; it didn't feel like I was overdoing things, but clearly today's pain is an indication that I was. Thank God for heating pads....

~ Clementine
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4 Weeks Post-Op 07-02-2004 - 04:14 PM
Wow! I can't believe that it has already been four weeks since my surgery. In some ways it feels like it was only last week, and in others it feels like an eternity ago. Time has ceased to have any meaning to me. I use June and July interchangeably, and I have also noticed several times when I've proofread my writing that I typed overy when I meant to type "over". Hmmmm.

But I am still not bleeding today! I am spotting, but it is light and I hope that's on the way out too. My pain level is at times fantastic and then other times (like now) bordering on torturous... I'm telling myself it's okay. I distinctly remember hurting (a lot) for 3 months last year after my laparascopy to get rid of the endo and appendix. I figure this should be at least the same. The difference, hopefully, will be that when the hurting finally stops the endo won't come back.

Oprah had a show that ran this week with Dolly Parton. She (Dolly Parton) said that she was depressed when she turned 40, not because she was 40, but because she was "fat and 40." Tee hee. She also said she had "female troubles" that were partly responsible for the weight gain and that she was forced for the first time in her life to slow down and take time off.... wonder if she's a hystersister? Code word for "female troubles" = hysterectomy when it's accompanied by the words "take time off." Anyhow, it was encouraging because she is so vital and active now. I can't wait until I'm vital and active again! I can almost touch it sometimes, it feels so close. In a way, it's more frustrating now to have glimpses of feeling well, because that makes me want to do do do. When I was bleeding and in pain I wanted nothing more than my bed, so the choice was a lot easier!

~ Clementine
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Place: Chicago.... Date: ??? 07-01-2004 - 11:42 PM
I cannot even believe how many people agree that we should all get together! kim308pl, Sanguiness, gemsab, PraireLakeLady, Jeanette, Moonchime, TxRiss, SweetyTweety, empresse, Northlights, californiagal, icare4bunnies, ceedeewho, and, of course those are just the ones who replied! I definitely think it's something we should look into for the future: a Hystersisters Journalers Convention! Chicago works for me too since that's where my entire family lives . Can you even imagine the scene...? Not a moment of silence, I'm sure! Of course, anyone who is ever in or near Rochester, New York, please know that I want to meet without question! And if I'm ever going to be near any of you, expect to hear from me, begging for a rendezvous !

Sisters, I am sooooo happy tonight! All day long and NO BLOOD!!! I felt so good that my DH and I even went for a little walk in the neighborhood (I kept it to a quarter mile, as instructed by Dr. Expert). Still no blood, and it felt fantastic! Our cooler weather is gone, leaving the temperature in the 80s today, but with a gentle wind. This is the time of year when wildflowers are exploding everywhere. Yards that a few weeks ago showed patches of dirt are now filled with leaves and color. The trees tower above the houses, their leaves waving in the breeze. Oh, it felt so good to be alive today!!! I am still going longer between pain pills too. And still taking the vicodin instead of the percocet, which is SUCH a relief! I feel like yesterday and today I have turned a corner in my recovery (knocking on wood as I write that... ).

I'm beginning to prepare for our annual 3 weeks in Door County, Wisconsin. My husband teaches up there (some years I do too) and the rest of us relax and vacation. Door County is a tiny peninsula in Northeastern Wisconsin that is surrounded by water: Green Bay on the left and Lake Michigan on the right. The terrain is rocky and the climate cool, and it is common to go from meadow to deep woods to rocky cliffs within miles of one another. The white trunks of the birch trees litter the forests and the old, tall pine trees give the air a fresh, cleansing scent. Original stone walls can be seen everywhere, marking forgotten boundaries from over 150 years ago.

In the 1970s, when farmers struck hard times, many artists moved in and bought land, setting up their studios, so the area is rich in culture (music, theatre, and art). It is a special place to me for many reasons. My father discovered it in the 1940s as a teenager and when he married my mother they honeymooned there. She too fell in love with it and they bought land there; we went a few times a year my entire childhood and adolescence (my first trip was at 6 weeks old). Because it was our vacation place, it holds many special, happy memories for me.

When I was 19, I moved to Tucson, Arizona and lived there until I was 30. At that point, I knew I wanted to move closer to my family in Illinois, and I decided to pursue my lifelong dream of living in Door County. I bought an old Belgian brick house and set about renovating it. I lived there for an entire year, and eventually was offered a teaching position elsewhere in Wisconsin. Yet, I kept my home in Door County and visited frequently. For four years, I spent my entire summers there. It still feels like my spiritual home. There is a certain crisp moistness to the air and, even though it has become too touristy over the years, there are still niches of rocky, breathtaking wilderness that call to my soul. It is also the place where I met my husband. So now, every year when he returns for work, it becomes our romantic getaway.

Because the distance is 14 hours by car, babyE and I are flying into Chicago; my DH and DS "W" will drive and meet us there. The kids and I are forgoing the first five days to visit with my mother and will then all drive up for the remaining 2+weeks. This year we have rented a little cottage (sadly, I sold my house when I moved to NY and married my husband-- it needed too much fixing for a long distance property). The wonderful home we usually stay in was rented before we could put our deposit down (we dragged our heels because of the uncertainty of my surgery).

In the end, I think the cottage will be better for us this year. It's smaller with no stairs and I will enjoy the closeness and rustic quality. But here's the terrible news: no phone! No phone=no internet!!!! Egads!!!!! I've already worked it out, however. I will write my entries in Appleworks and save them. Then, each day I will walk to the library (near the cottage) and can download my entry while still having time to read all the new ones pouring in. Whew! Thank God for libraries!!! As much as I look forward to the time away, I think I would be sad without the daily company of you, my Hystersisters.

~ Clementine
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Why Don't You All Live Closer??? 07-01-2004 - 02:47 PM
I love you all so much and have really come to think of this journal haven as my safe place. I feel that I know so many of you and you are always here for me when I need a good cry or have a setback, or even when I have a good day. In many ways, you are all more supportive than many of my tangible friends. So, why don't you all live closer?

~ Clementine
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Lazy Morning 07-01-2004 - 10:09 AM
I am being incredibly lazy today! It's nearly noon and I have not been downstairs yet. My son "W" has been helping with babyE. My husband fed her before he left for work and "W" has been playing with her all morning, building her a castle out of legos for her Playmobil people to live in, and otherwise keeping her engaged. They've both been upstairs several times for visits. The house is small, so I can keep track of them fairly easily. For instance, when he tortures her and she cries, the wails creep up the stairway .

I'm trying to take it easy this morning because I was so active yesterday. This is my way to pamper my body and bribe it into forgiving the intense pressure I put it through yesterday. My pain is a little higher this morning than it was yesterday, but it's not unbearable (a vicodin day, not a percoset one), and so far no blood! (Hooray! Shhhh! I've got to say that quietly...)

I pampered my DH last night. He told me on our drive to Target that beneath his calm exterior lies a man who is stressed out and overwhelmed. He is getting nervous because he's teaching two camps right now and then we leave for our month in Wisconsin where he teaches two more. The stress of packing and planning is getting to him. He asked me to be extra sweet to him. The great thing, one of the things I love most about him, and the reason I married him, is that we have fantastic communication. We are able to communicate our needs and fears without alienating one another.

So last night I stayed downstairs and watched some shows we had Tivo'd. I have to say, it felt so fantastic yesterday to be living the way real people do . It was wonderful to walk freely around the house, leave the house on an errand, and go to bed after the kids! I had my DH soak his feet in the Homedics therapeutic foot bath thingy he bought me for Mother's Day and then I did the "pedicure" thing where I scraped his feet with a file. His poor feet are in terrible shape because he's been wearing these awful rubber sandals and even playing the drums in them . So I gave his feet some TLC and coated them with lotion and put white socks on them. He fell asleep (happy) during this treatment and today said his feet feel so much better. It was nice to be able to give after all of the receiving I have done.

icare4bunnies--- Happy Birthday! gemsab, californiagal, floppsy, ceedeewho, PraireLakeLady, Jeanette, and txRiss, thanks for all of your feedback yesterday! I would love to check out this e-book, "Happy Hysterectomy," but don't want to pay $22, so I probably won't! I agree with icare4bunnies... I would pass a book onto a friend, so why can't you do that with an e-book? The other book about women's hysterectomy stories:"Hysterectomy: best or worst thing that happened to me?" sounds like it might be a good read; I'll have to find a copy (thanks for the suggestion, gemsab!). In the meantime, there are always our stories that I continue to read each day!

And now, I think I've ignored my children enough for the day... babyE is in her bedroom singing songs to her dolls... oh, so precious! Enough of my self- pampering (for now, anyway).

~ Clementine
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A Better Day 06-30-2004 - 08:07 PM
Today I have felt better than ever! I was able to be awake and even do some normal stuff like cleaning and laundry. My DH and I took a little trip to Target to buy some Strawberry Shortcake underpants for babyE. They are the only kind she likes and she asks to wear them every day, so I bought out the store; all 4 packages off size 2T (3 panties per pack). My DH thinks I am obssessive compulsive, but with a toddler in training it is possible to go through 5 pairs of panties in one day!

My DH tells me I'm being negative lately. I was surprised by this because I thought I was being pretty positive... I think what I have been is insecure and I think I've been insecure because I equate my self worth by what I do rather than what I am. Since I haven't been able to do anything (including have sex) for nearly 4 weeks now, I've become a bit insecure. Does he still love me? Will he still desire me? He does not at all "get" why I think I might be less desirable to him because of my surgery. To him, my having or not having a uterus makes no difference whatsoever. I try to explain that he might feel insecure too if someone were to take his testicles, but the comparison is really not a good one. We can still have sex without our uterus and cervix. A man needs his testicles to have an erection.

I tried to do a little too much tonight because I have sensed my husband's stress over the large amount of work he has right now is overwhelming him (he's teaching two summer camps plus all the extra home duties). He ordered me to bed and told me that I need extra rest. He thinks my body is having a harder time recovering because this is the fourth year in a row I have had a major hormonal and surgical procedure (2 laparascopies, 1 vaginal birth, and the hysterectomy). He reminded me that I recovered within a month after my first surgery (I was also pregnant two weeks after it). I think it's true. My body is spent. Even when I've been healed from a surgery, I've had the chronic pain to contend with. It makes me even happier that I chose to have the hysterectomy now so that I can be finished with surgeries and begin a true path to health.

I know it's true that I need to make sure that I don't overdo it just because I'm feeling better. The doctor told me two additional weeks of bedrest type recovery and that was less than a week ago. Thank God that I have this site to keep me company . What would I do without you ladies? I do think we should talk more about that book idea... Northlights, jeanette, californiagal, icare4bunnies & anyone else who might think so but didn't read my last entry (I can think of several of you right now). It's true that there are no journal or story type accounts out there about hysterectomy that treat it in a positive light. I read one account by a woman who talked about how her lover (not her husband) told her that it felt like a "dead end" when they had sex...... I still have a fear of that one! Other women need to hear the honest and the bad, but, more importantly, the GOOD.

~ Clementine
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Blood, pain pills & listening to that inner voice 06-29-2004 - 09:54 PM
I know that I should write at least to record my physical day, but I've not been in the mood all day. I am so touched by everyone who wrote in response to my last entry about my dad. Ceedeewho, Moonchime, gemsab, empresse, PraireLakeLady, texrahrah, Northlights, jeanette, californiagal, and floppsy, your kind words and support were such a surprise and are still a comfort. I've reread the comments about three times throughout the course of the day and each time they make me feel better. Thank you.

I skimmed through a book today called, "Just As Much A Woman." I checked it out from the library before my surgery and thought it would be a great read. Instead, I found it very one sided and have a hard time relating to it. It had a heavy emphasis on fibroids and women in their 50s and 60s going through the surgery (if you are in either of those categories you might like the book). For me, it was too linear. Of the twelve women mentioned in the book none had endometriosis and, in fact, the author stated that hysterectomy is not necessary for endometriosis. I can't believe such an opinionated book was published. The book was basically one woman's journey and the advice she learned from her one doctor, and as I read some of the things she wrote I was riled. I'm old fashioned in that I believe an author has a responsibility to present all the facts about a topic like hysterectomy. Maybe we should all band together and publish our stories, eh ladies? We are all so diverse, yet share common threads. I have learned more here than through any book on the market.

I am still bleeding! I'm not bleeding an inordinate amount or even all day, but at least three times each day I go to the bathroom and bleed into the toilet water and wipe blood away from my vagina and bleed onto a pad. I have a distinct feeling that at my 6 week post op I will be getting a suture. It's okay. I know eventually this will heal correctly. Right? The good news, however, is that the pain if finally getting better. Nothing remarkable, but, rather, an extra hour or two between motrins or percocets... I've even been able to substitute vicodin occasionally.

And on the subject of pain medication, I am so sad for many of my Sisters when I read about the trials so many people have just to get pain pills! I think it is absolutely unconscionable for doctors to dole out medication in such minute quantities to women in chronic pain. I am lucky and apparently rare in that my doctor has never questioned my need for or limited my access to the medication I have needed or requested. I am not a drug addict (or maybe I am, but not for reasons of getting a high). I am a woman who has been in chronic pain. I can't even imagine the state I would be in if my doctor handed out a paltry 30 pills and told me that was it. I might be suicidal by now if I'd been forced to live with my pain and never have a break from it. I know that legislature in California is working hard to change doctor's knowledge and perception of patients in chronic pain; I believe they require classes for all physicians. I wish that kind of learning was mandatory in every state.

I found out something interesting about vioxx yesterday from my mother. We were both given vioxx on the same day (she pulled a muscle in her side). Apparently, people allergic or sensitive to sulpha should not take vioxx. Oops. Mom is allergic and I am sensitive. This explains why I felt so weird the day I took it; she also had a negative reaction. I am impressed with myself because I had a very strong inner voice telling me not to take it yesterday morning, and I listened to it!. The same voice told me to be wary the first day I took it, but I listened yesterday. We all have that voice. It's good to know that mine steered me in a positive direction. At least something is working right .

~ Clementine

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Physical Therapy NOT for 3 weeks post op!!! 06-28-2004 - 07:48 PM
I woke this morning feeling pretty good. The pain wasn't crippling me... in fact, there really wasn't any pain at first, even though it had been about 6 hours since my last pain killer. I was sitting with my heating pads when I realized I had a physical therapy appointment in 20 minutes.

Excited, thinking that I would have some extra pain relief, I drove myself to the appointment. I know, I know.... the driving prohibition, but it's only 5 minutes away, I drove verrrrrry slowly, and I stayed in the right lane and did not turn at all. My physical therapist massaged my lower back for about 30 minutes. It's always been such a huge relief in the past, but today I could feel the trigger point in my lower pelvis for the first 10 minutes. When she was done she hooked my back up to the interferential stimulator and had me sit with the super hot heating pads for 20 minutes. I became dizzy and when I left I felt like crap. Went in feeling okay; came out feeling 10 times worse. My conclusion: physical therapy is not a good idea for me at 3 weeks post op I cancelled my appointment for next week. I'll try again in a few months.

I came home and took a vicodin, which didn't help. Within an hour I felt even lousier, the vicodin wasn't working. I laid down for awhile and could feel a burning sort of itching feeling where my vaginal cuff is. My entire perineum felt swollen as did my pelvis, and I started BLEEDING again!!! RED.... AGAIN! I called the pharmacist and he okayed my taking a percocet for the pain even though I'd only taken the vicodin 1 1/2 hours before. Needless to say, I am so discouraged!

For those of you who think I may be a whiner, I'm really not. This is my third surgery in four years and I have been in CHRONIC (necessitating narcotics) pain for two years. All of my memories of happy times include a vivid recollection of how horrible I felt when they occured. My DH will mention an event or concert and I will think, "Oh, yeah, I remember how terrible I felt when we went there." Although I can remember that I was once healthy, active and athletic, I no longer remember what that felt like. So to me the bleeding does not just feel like a little set back... it feels like a big, huge Discouragement.

My DH is very encouraging and reminds me that we are in the home stretch and that next year I'll be all better. I'm chasing after that dangling carrot. He's working during the days and again at night and is only home from 12-3ish every day. He brings me breakfast before he leaves and then I put together a lunch for everyone. Tonight some friends brought over dinner. My DS "W" is great about helping with babyE. They play in the morning and then babyE and I take a long nap in the afternoons. I miss the days of having Super babysitter "K" but we are managing. Still, tonight the bleeding and pain are prominent.

Last night I missed my father so much. I read Sanguiness's journal about her father and it reminded me so much of my dad, who was also in computer science: he was a professor of it at a city college in Chicago in the 70's and 80's, before people even knew about computers. I remember going to the college and entering the huge rooms with the computers that filled the space. We used the old IBM computer cards at home as our "note" cards; in my mother's basement, with a box of memorabilia I salvaged from my father's things is a stack of those cards. [Sanguiness, if you read this, don't feel bad; I've been missing my dad a lot and your entry was merely the catalyst, not the cause, of my grief]. The strange thing is that I haven't really missed my dad so profoundly for a long time. He died of a massive heart attack when he was only 50 and I was 16, so I have lived more years without him than I did with him: 21 years now.

But last night the grief felt brand new. I could see his face and hear his voice. I could remember how he laughed and how popular he was and how much alike we were. My mother, who is introverted and a little prone to negativity, really sparkled with him as her companion. My brother tends to be more like her, so I've really felt like a bit of an outsider ever since. My family never really recovered. We are like a quilt that has been torn apart and patched back together again even though several pieces are missing; functional, but not nearly as beautiful or complete.

Those snapshots that stay in our long term memory kept flashing every time I closed my eyes: flying down the hill with my father when I was 5 and skiing between his legs... going on weekend ski dates with him... the sight of him sitting in the ice arena grading papers during my figure skating phase... the sound of his voice the last time I heard him minutes before he died, choking out, "Get mom, La,"..... the sight of his body on the table in the emergency room, cold and dead and the feel of his skin under my lips as I kissed him goodbye. God, I've forgotten how much I loved him.

My dad was a workaholic like my husband, only his passions were computers and skiing. It wasn't enough for him to be a college professor; in his free time he owned and operated a ski and sports store and was always running ski trips. I loved those days when he would rent a caravan of buses and I could take any friend I wanted to the Playboy club in Geneva, Wisconsin for the day and teach them to ski. In addition, my dad was a religious man. He headed up the CCD at our church, which was the Catholic name for cathechism. So many people knew him and loved him. My friends loved to come to dinner because he was so young at heart and teased everyone. His death was such a shock and tragedy that we had a two day wake and the room was packed both days. If I could go back in time and choose a father who would be alive for 40 of my years, or pick my father and know I would only have him for 16, I would pick him all over again.

My husband thinks that my grief and emotionalism stem from the hormonal imbalance from the surgery. I think he's probably right, but that doesn't make it any easier. Actually, it feels good just to have written it down here and to let it go again. Last summer we were robbed and the people didn't take TVs or VCRs or anything that could be replaced: they took my father's wedding ring, which I almost always wore on my thumb since the day he died, and the guitar he bought me when I was 12-- the only guitar I ever owned and the one I wrote all of my songs on. They were all I had left of him, so maybe I'm still grieving that newer loss. My mother gave me her wedding ring and insurance paid for a technically better guitar, but every once in awhile I am crushed to think those last connections to my father are gone.

I wrote a song for my father in 1999. I remember the day I wrote it. I was lying in bed with my son (then 6) and I kept thinking about all of the "if onlys". I got up and scrawled the lyrics on a sheet of paper, sitting on the bathroom floor because I wanted them all to be fresh; I didn't want to take time to go to my room. The next day it took only 10 minutes to compose a melody for the little vignette. Here are the lyrics:

If Only
If only I had known
I'd have savored your last smile
If only I had known
I'd have stayed a little while
If only I had known
I'd have memorized your touch
If only I had known
I'd have lingered, I'd have much
If only I had known
I'd have cradled you through the night
If I'd known I'd never see you again
I'd have treasured your precious light


~ Clementine


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Just the Facts 06-27-2004 - 09:29 PM
I decided to make it an ibuprofen day instead of a vioxx one... then logged on to find PraireLakeLady's comment about how vioxx becomes more effective over time... oops ! I may go back to it tomorrow, but there is a hesitancy since it is not as safe as ibuprofen for nursing. The facts say somthing like "Mother's need surpasses potential danger to child" or some such jargon, but it is still a class C, which means it's effects are not certain.

I was able to take vicodin today instead of percocet, though by night time I switched back to the percocet. I do think the pain is lessening, since the vicodin worked fairly well. My bleeding has diminished, though I am still spotting and sometimes after I go to the bathroom there is a trace of pink. So I'm trying to be good and resting a lot.

My mood today is low. Low energy, low optimism, low creativity. Blah! I wanted to go downstairs and play my guitar, but took up a three hour nap instead. It seems that everywhere I turn are other 3 weekers flaunting their successful recoveries... how great they feel, how much they are able to do now. And I'm still in bed and on narcotics. I used to feel this was the safe place to come and be supported in the duration and difficulty of my recovery, but today I feel like the Outsider. I'm weepy, bored, and lonely. I'm sure after a good night's sleep I'll feel more positive.

~ Clementine
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Grateful thoughts from my Sickbed 06-26-2004 - 11:10 PM
.....mooncHime
...........joYce
.......floppSy
..........norThlights
........prairElakelady
........empResse
.............Sanguiness
.............Icare4bunnies
........gemSab
.....jeanetTe
..........deEgeorge
......califoRniagal
.........copSwife123

Thank you to all of my Hystersisters (those listed here and those not, but listed in my ) for all of your kind words, thoughts, prayers, greetings, and, most of all, for caring! Your thoughtfulness and sisterhood has meant such a great deal to me. As you can see, these are the kinds of things I have time for now that I am relegated to an extra two weeks' bedrest !

Today I took vioxx for the first time. The jury is still out on its effectiveness. The ibuprofen is more effective for pain relief, though the doses I need to take are nearing toxicity, so I may give the vioxx another day's trial before I dismiss it. The pain today is much worse than it was yesterday before I went to the ER. All the pressing and being internally examined has left an aftermath of swelling and cramping, as well as transient stabbing feelings, so I'm back to the percocet.

The messy, dusty state of the house depressed me greatly this morning. I reacted inappropriately by placing too many expectations on my DH, who has been so supportive and has kept the family fed, in clean laundry, and happy, in addition to working and paying for all of the extra babysitting. He, in turn, became stressed and unhappy. Fortunately, I was able to shake myself out of it and realize that it doesn't really matter if the house is spic and span. I need to get over my obsessive compulsive fixation about that and be grateful for all of the blessings I have: a supportive husband, two wonderful children, a safe home, a job I like, good friends, etc. In the long run an unswept carpet or film of dust is not important. I apologized to DH (he accepted) and sent him off to play 9 holes of golf while babyE and I went down for our afternoon nap.

Tonight my DH grilled divine shishkebobs of chicken, onion, tomato, and zucchini with wild country rice. We all indulged in black cows (rootbeer floats) after dinner and while I put babyE down to sleep he vacuumed the living room (oh, heaven!).

This is a minor setback. Two more weeks of rest will be fine. This increased pain will lessen. These are my mantras. Meanwhile, my DH and I have fallen into a comfortable routine where we snuggle in bed at night, play a few games of cards and watch a DVD on the laptop. When I count my blessings the pain doesn't seem as bad.

~ Clementine

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Back from the ER 06-25-2004 - 11:15 PM
First of all, I have to say that I love all my Hystersisters!!! I'm too tired to acknowledge you all as you deserve to be, but know that you have all made me feel so important and special with the concern and care you have shown me.

My DH took me to the ER and we sat waiting for nearly 2 hours before we were even given a room. I was getting worried as the minutes ticked by because I knew that Dr. Expert was going on vacation... Finally, my DH said that I should call his office and let them know that I was there. So I called and they were surprised that I went to the ER because his office nurse had been trying to reach him so I could be seen at the office instead. I was confused because his OR nurse was the one who called me and I assumed that his office nurse was the one who paged her. [/i]We never did figure out who paged him with my number!!![/i] I didn't, his office nurse didn't... it is very bizarre.

Immediately, I said that I'd rather go to the office, that I could be there in 5 minutes as I hadn't been admitted yet, etc. But they told me to wait there and see a Resident and they could page Dr. Expert if he was needed. I hung up and this is when I broke down. This was also when a room finally became available for me. I cried as I went to the room. It was still dirty from the last patient and as I sat in a wheelchair across the hall I had a minor meltdown.

I started crying and couldn't stop. I NEVER would have gone to the ER if I thought I wouldn't be seeing Dr. Expert. First of all, it's $50, and secondly, I was adamant that I would not let anyone else do an internal exam on me. Part of this is because I have read too many horror stories on this site, but the biggest part was that I feel scarred. At that point I realized that I have certain issues related to this surgery that I have to deal with. I feel mutilated and different... like I would be the guinea pig freak show for some Resident who has probably never seen a vaginal cuff before. My DH handed me his handkerchief and I held it in front of my face because I was crying so hard that I didn't even want to be seen; I just wanted to hide. I kept repeating that I NEVER would have come to the ER... I seriously would have rather bled for a week than be seen by some novice whom I didn't know or trust.

Finally, my DH went outside to call the doctor's office again. He returned about ten minutes later and told me he had spoken with Dr. Expert's nurse who assured him that Dr. Expert frequently sends patients to the ER and that a Resident who works with him would see me. She said that if the Resident asked to do an internal to tell them no; page Dr. Expert. I decided that I could live with this arrangement and calmed down a bit.

About a half hour later a young female Resident came. She was cordial but a little cold and appeared to be about 12 years old. She asked about my symptoms and I explained about the bleeding on Monday and again this morning. She then listened to my lungs and heart and then pressed on my abdomen. Why does everyone always want to press on the abdomen? Dr. Expert has never ONCE asked to press on my abdomen throughout this whole surgical process. So she pressed and we determined that, yes, it hurts. She then told me that she wanted to do an exam with a speculum and insert a scope before she paged Dr. Expert. I said "NO." She seemed a little taken aback, but I again repeated no and told her to page Dr. Expert. My poor DH was being a good sport throughout this all; supporting every decision I made about my body.

So little miss Resident disappeared in a huff and a kind nurse entered who stuck me with an IV, took some blood, took the urine sample I had already done and otherwise made me feel that everything would be okay. About five minutes later I heard an announcement in the hall that Dr. Expert was on line 4. Moments later little miss Resident reappeared to tell me that he would be down in about 5 minutes. I was so relieved I almost cried again. It is relevant to mention here that it was now about 4:30 and I had not had any pain killers since 9am. I was in agony. They offered me morphine and I put them off. I wanted relief, not oblivion. They would not give me a percocet because they have a no food no drink rule in the ER, so I suffered.

During the entire escapade there was another young woman in the bed on the other side of the curtain. Not once in the hour I was there did anyone come to see her and she was all alone. My DH told me that if he ever has to go to the ER that he hopes I will come because he said you really need to have an advocate. He helped enormously by getting nurses, calling the doctor's office, bringing me a drink, and checking to make sure they remembered I was there when a half hour passed with no sight of anyone. He said, "You could die in here and no one would even know." The ER is a lonely place. It is cold and you are in a room for hours in between each little procedure and the entire time you hear a drone of voices in the distance. It's not like the TV shows, however, because none of the medical staff seems to be rushing or doing anything other than visiting with one another.

Dr. Expert arrived with a shuffle of his loafers, dressed like he was ready for dinner, and his calm manner eased my fears instantly. We briefly talked about the mix-up with the pager, but he reassured me by saying that it's easier to do the blood work in the ER anyway and it was fine. We had to move to a gynecological exam room where he took a few moments to get organized. I said, "It's kind of like being a cook in someone else's kitchen, huh?" and he agreed. He seemed to walk a little taller and exude even more confidence than normal and it occured to me that maybe it was a boost to his self esteem that I wouldn't let anyone else touch me. I wouldn't have thought someone in his position would need a self esteem boost, but I guess everyone loves to feel important.

Dr. Expert told me that at 3 weeks it's not normal to be bleeding red as much as I have and that's why he wanted to see me. He told me that he would insert a plastic speculum (all they have in the ER) and that sometimes they pinch, so to let him know if I was hurting. He looked inside and said that there was definitely more blood than should be there. He told me he needed to clean the blood in order to see the vaginal cuff and that it might be uncomfortable, which it was, but not unbearably so (he used a huge q-tip type thing to do this).

After looking at the cleaned area, he told me that, although part of the vaginal cuff was healing nicely, there was a mucosa, or an area that had separated and was bleeding. He said it's not what he likes to see, but that he believes with two weeks rest it will resolve itself. He said that he didn't want to cauterize it because sometimes that irritates things more. He also concluded that there probably never was a hematoma; that the bleeding on Monday was probably from the mucosa as well.

He said when I come in for my 6 week post op that if it hasn't healed he will put in a suture. Meanwhile, rest and no exercise, lifting, etc. should help it heal on its own. He is leaving tomorrow to give a presentation in Italy and take a few extra days vacation with his wife, but told me that if I start to bleed profusely to come back to the ER and tell them he said to pack it with cotton for 24 hours. Having a game plan for possible complications relieved me greatly.

After that, we were able to leave within ten minutes. The poor woman in the bed across from me still had not been seen and my DH and I wished her luck. Dr. Expert had approved me going to the retirement dinner with my DH as long as I sat the whole time, so I did go. It was two hours long and one hour too long. Although it felt lovely to be out doing things normal, healthy adults do, it was enough to convince me that I will be happy to stay home for the next two weeks. I'm just not ready. I hurt and ache and cramp and nothing is helping... not the heat or the pain killers. All of the pressing and prodding and scraping has made me inflamed. Yet I am glad that I went for now I have peace of mind. And I am especially glad that I stood my ground and didn't allow a stranger examine me and insert a "scope" (where would she have inserted it, I wonder, since I have no cervix?). Most of all, I'm happy to be home in my bed. While this is a setback, it is only a minor one and could have been so much worse.

Thank you again EVERYONE for all of your good wishes, messages, and prayers. I don't know what I would do without you.

~ Clementine
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1 step forward; 2 steps back... Blood again 06-25-2004 - 09:57 AM
It's ironic that the two times I have felt like I was really turning a corner, I have run smack into a brick wall! The first was Monday when I felt great all day and then had the hematoma at night that caused bleeding, pain and fatigue for two days. Yesterday, I finally felt the return of some energy and, more importantly, a lessening of the pain. The percocet seemed like it was too strong and I was able to go further and further between motrin pills.

This morning was the first time I woke with an absence of major pain. Elated, I went to the bathroom, only to discover that I had bled through my pad and onto my underwear. Again, bright red. As I sat, more blood dripped into the toilet water and when I wiped, blood showed on the paper. I am so discouraged!!! I phoned my nurse and she told me that I might need to have my vaginal cuff cauterized and to phone back in two hours to let me know if the bleeding stopped. Well, it has slowed, but not stopped.

Now, I'm waiting to hear back about what I should do. Dr. Expert is in surgery today and is then on vacation for a week, so I don't know if I will be able to see him. I'm terrified of seeing someone else. I trust only Dr. Expert. Maybe that sounds silly, but it's true. He is the one who is the most qualified about these things... the one who goes to conferences and presents information and is up on all the current trends and beliefs. He is the one who women travel from other cities and states to see. I know there are other doctors in the hospital who are probably quite competent, but they are not him.

Instead of taking a percocet today I took a vicodin. I don't have the stabbing pain, but I do have a dull cramping, as if a big period is on the way. I wonder how much more intense that would be if I wasn't on 800mg. of motrin and a vicodin... My DH and I are scheduled to have our first real date tonight. We have Super babysitter "K" coming to watch the kids and we are supposed to go to a retirement dinner for a colleague. I want to go!!! I feel well enough to go, in spite of this setback. I'm sick of being sickly. He's sick of me being sickly too; he's sick of doing both our jobs and he's exhausted. He's being good about it, but I feel guilty. He thinks that I caused the bleeding because I overdid it, but I don't think I did overdo it and I don't think the bleeding has anything to do with my being active or not.

To compound the situation, my DS "W" has been in a funk for about a week now. He's alternates between being an absolute angel to being a sassifrass. You never know which "W" you will get. This morning I don't have the patience to play the guesing game. He's also on what we call the "world revolving around "W"" mode. He's upset because he can't have a play date this afternoon because I might need to go to the doctor. I'm trying be compassionate and realize that to a 10 year old this is a big fat drag (it's no fun being in a house where someone is recuperating, period), but the other part of me feels like he's being awfully self-centered and I thought I raised him better than that (I know, I know, all kids are like this, but still...). I nearly had babyE down for a nap (and me too) and he came barreling into the room and plopped down on the bed to ask a question. At 10 1/2 years old he should know to come in the room quietly and whisper when I am putting the baby down. So now she is awake and raring to go, and I am impatient. DH is teaching a lesson downstairs and then he will be able to take over.

Sorry to be such a pill. I'm going to nap awhile and when I wake hopefully I will feel stronger and less afraid. I don't want to be cauterized!

~ Clementine

P.S. Today it is three weeks since my surgery.
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A Better Health Day 06-24-2004 - 01:32 PM
Wonderfully, today I woke feeling so much better physically than I have for the past few days! I even went 8 hours between my 800mg motrin pills before I started to hurt again. I also went 5 hours (instead of 4) between percocets and when I finally needed to take one I felt a little "high", which is a first for me. I'm wondering if that's a sign that I'm ready to move down to the vicodin? I asked my nurse (Dr. Expert's right hand woman whom I adore) and she told me that I shouldn't worry about becoming addicted but rather listen to my body and do what needs to be done.

Today I feel more the way I felt on Monday morning before the whole hematoma episode. Today I feel that maybe there will someday be an end to the pain; I feel hopeful. I felt so sad yesterday when I read the comments from Moonchime, icare4bunnies, Sweety Tweety, Jmac35, EileenJ1960, and ~LRF~. I wish that I could offer my physical therapist to all of you, for she is a wonder worker. I feel for anyone who does not have a good doctor or who has not been led to alternative methods of dealing with the pain like physical therapists or acupuncturists.

My physical therapist does work specifically with women who have gynecological issues, but there are some beneficial things she does which could be done by any physical therapist, and would be covered by insurance. She has done internal "acupressure" inside my vagina to release smasms. Obviously, you wouldn't want just anyone doing that! But the most beneficial thing my PT has done for me is to methodically massage my lower back and extending that into my gluteus maximus and thighs. Sometimes, when the pain is horrible, the spasms will move to the next large muscle group: the stomach. She has taken 30 minutes in the past to simply massage my stomach and the relief is astronomical. I hope that maybe all of you who suffer can find a physical therpist and explain that these are things you would like done. I believe that massage therapy would be beneficial as well, but the main difference is that my PT will massage ONLY the affected area for 30-45 minutes straight. It's like being in heaven.

My nurse is phoning in a prescription for vioxx today. I will try that in lieu of the ibuprofen, which has been causing me a lot of stomach pain and I'm at the point where I'm worrying about the negative effects taking so much ibuprofen for such a long time (2+ years) will have on my liver. I don't want to trade in one set of problems for another. My friend's husband, who is a pediatric oncologist, is the one who told me to try the vioxx; he said it's a miracle I haven't had a gastro-intestinal bleed by now with all of the ibuprofen I've taken. I'm praying the vioxx works for me. Jmac35 recommended celebrex (thanks, Jmac!), and my nurse said it's similar to the vioxx and to try that first.

I'm wishing everyone a healthy day and a great physical therapist!

~ Clementine
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sooooooooooooo MAD!!! 06-24-2004 - 11:06 AM
Okay, I haven't writen about my follow-up on "W"s school issues for a while (being "deported" on Immigration Day and not making 5th grade Safety Patrol). I have, however, been doing something about it. I talked with his teacher, who said he would talk to the other 4th grade teachers whose room this happened in and make sure it doesn't happen in the future. I've also talked with the principal twice and she met with the 4th grade teachers about Immigration Day and also with the teacher who chose the kids for Safety Patrol. Both were very kind and agreed that it goes against their philosophy of putting children first to exclude some from activities or leadership roles.

Changes, however, are slower in coming. While the principal agrees that Safety Patrol should be available to all children (as long as they comply with agreed upon standards of academics and behavior), she wants the P.E. teacher who is in charge to be the one to make the change. Instead of asking him outright, she is "exploring possibilities" with him. Well, school is over now, so I'm not very confident in how quickly these things will be resolved or changed. I have spoken with other parents who agree that the Safety Patrol should be open to all children who are interested. If changes happen next year, that does not benefit my son for this upcoming year.

Anyhow... I had phoned the Superintendent and finally (5 days later) received a phone call back. I will not go into all the petty dialogue and discussion, but basically she took a very defensive tone with me from the beginning. I explained first of all that the teacher & principal were cooperative, but that the issues were serious enough that I wanted to call them to her attention in order to make sure that the issues are addressed. I emphasized that "W"s teacher was fantastic and that "W" has grown by being in his class. I also stressed that I have had positive interactions with the principal and commend her for doing a good job in a difficult position (she took the place of a 15 year retired principal who was well liked in the community).

I then told the Superintendent about "Immigration Day'... about "W" being "deported"... about a room mother teaching incorrect information to my son and taking his photo holding the sign and making him write a letter home saying he had been deported (BTW the teachers deny the kids were deported, saying they were only detained, even though I have a sign printed by an adult that clearly spells d-e-p-o-r-t-e-d). Her response was merely a very snippy, "Well the principal met with the 4th grade teacher and they'll do it differently next year." No statement that she thought it was a horrible occurrence, no aplogy that this happened to my son, no sense at all that she felt it was inappropriate; just a very bored-sounding tone that implied, "What do you expect me to do about it? It's been taken care of." Aaaargh!

The Safety Patrol issue did not receive a much better response. She basically said that change is better coming from within (which I agree with), but she didn't give her opinion one way or another, and basically remained very defensive and agressive in her tone. Instead of being received with empathy, understanding, and a feeling that things would be resolved, I was met with a smug playground bully attitude. I am not an unreasonable person, or a troublemaker; my points were valid as both a parent and an educator and I deserved better. I can't even believe this woman is the Superintendent of the school district!

I have taught HS before, currently teach college, and come from a loooooong line of educators (both parents, 3 aunts, an uncle, etc.). My family is "in education." I have known many Superintendents and the ones I have known have all been calm and empathetic. I suppose this is why I was caught off guard by this woman's attitude. All I needed from her was a sympathetic, "Gosh, I'm sorry that happened to your son in our school. It was a terrible thing. We'll make sure to resolve the issue." Instead I got, "Why are you bothering me with this? The principal already had a meeting and you can't push change." I, of course am paraphrasing here. But she made me so gosh darned mad! Every Superintendent I've known has had a way of diffusing difficult situations, not igniting them!

My DH has a way of calming me down... his voice is soothing and he is so eloquent and reasonable. He listened to me rant and rave (BTW on the phone I was very calm and non-threatening) and said he was sorry she was such a jerk, but that I shouldn't make this my life's mission. We need to advocate for our children, but not to the point of making ourselves sick over it. He told me to wait a bit and see what happens; that you never know what might transpire as a result of it. So I'm feeling a little calmer. It's just horrifying to me to be paying high taxes for a public school where, when I have a problem (and this has been my first in three years), I am not treated with respect and courtesy, but, rather, as a gnat on the wall... something that needs to be "dealt with" but not valued.

Sorry to take up a journal entry all about this very non-hysterectomy-related issue, but I needed to calm down and writing helps me to do that. I really do feel a lot better now. More later about my actual post op life, once I've had time to settle down completely. Incidentally, it has crossed my mind that I may be just a little hormonal today .

~ Clementine
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Recovery Blahs & Surprises 06-23-2004 - 03:26 PM
It's not been the best day for me recovery-wise. My lower back has been hurting a lot and of course that makes me scared that the endometriosis is returning. My DH just gave me a little back rub and said that he doesn't think it's endo. He said that my muscles are tight, probably from the pain and lack of exercise and, besides, I had my left ovary removed (the left side is where I hurt the most).

I phoned my physical therapist today and made an appointment with her for Monday. She does this wonderful massage work on my lower back and I'm craving it right now! She specializes in women with gynecological issues and works closely with my doctor. I have learned so much from her about the pelvic floor musles and how all the large muscle groups work together. I asked her if she does much work with post-hysterectomy patients and she said, "Yes." And I asked, "Do they get better?" She laughed and said, "Yes, they get better." I want to get better!!!

I also talked to my doctor's nurse about getting a different type of anti-inflammatory drug. The ibuprofen is doing a number on my stomach. We were all set to try Ultram, but she wasn't sure if I could take vicodin or percocet with it if needed and then she discovered it's a Class C, which means it's not the best choice for nursing mothers. She's going to talk with Dr. Expert tomorrow about possibly Vioxin or something else. Then big baby me started to cry and asked, "Is it normal to still hurt this much at 2 1/2 weeks?" She basically said that, yes, it could be normal if it's surgical pain. I don't know what other kind of pain I might be having right now, but this definitely appears to be surgical pain given the fact that I just had major surgery and am hurting in that area .

It's a beautiful day, cool but not cold, birds singing happily. I think I might like to try a short walk after dinner. A friend dropped off a care package a few days ago with spaghetti & meatballs and ratatouille. We had the spaghetti & meatballs yesterday and my DH is fixing the ratatouille right now. There is a great post yesterday & today about all the things that surprised people about their recovery, and I would have to say that for me the biggest surprise has been the support from people I never knew cared... and the lack of support from ones who I thought did! I have soooooo many thank you cards to write.

And while I'm at it, thank you to Moonchime, Jeanette, gemsab, texrahrah, icare4bunnies, Sanguiness, Jmac35, jrothhaar, and empresse for all of your kindness to me these past few days. My Hystersisters are the greatest surprise of all.

~ Clementine

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Lyrics for Moonchime 06-23-2004 - 09:03 AM
I wish I could play my guitar. I think it would feel really great if I could make some music, but my guitar is large and I think it would hurt to try right now. My father bought me a guitar when I was 12 years old. I taught myself a few chords and used to play in church, but that was about it. Still, I carried the guitar with me wherever I went and pulled it out about once a year to play the few songs I knew.

One particular day, when I was about 31, I ached to have some catharsis. I had begun dating again after a long, lonely relationship, and the dating world was frightening to me. I longed to play the piano, which had always soothed me during stressful times, but I didn't have a piano. I picked up my guitar and played the few songs I knew, but they weren't enough. I wanted to voice my own pain, frustrations, etc. That was the day I wrote my first song. That was the day I discovered my Voice. I have since written several songs and I used to perform in little venues until the pain of my endometriosis became too great and I couldn't. That is one of the things I look forward to doing again someday when I am healed.

Moonchime and I have discussed her granddaughter's agoraphobia. One of my cousins has suffered from the same and a few years ago I wrote a song for her. Of course, the song is the story of my cousin's birth & life and progression to agoraphobia, but I wanted to share it anyhow.


This Play

married in the park one day
she wore a silver locket
and a crown of daisies on her head
they built a yellow house where they could play
where they could play

years went by; those were happy days
they bought a farm in the country
with a garden and a pony
they made a little girl who liked to play
she liked to play:

London Bridge is falling down
My Fair Lady
London Bridge is falling down
My Fair Lady

as her mom grew weary of their simple ways
she moved the little girl to a townhouse by the bay
the girl missed her father
and wished that they could play

under her quilt where she would pray
she said, they think I’m resilient
but I’m aching every day
if life’s indeed a stage I don’t want this play

London Bridge is falling down
My Fair Lady
London Bridge is falling down
My Fair Lady

the girl grew up and she moved one day
she bought a house of her own
where she locked herself away
she couldn’t come out
she was afraid to play
afraid to play

London Bridge is falling down
My Fair Lady
Won’t you please come out to play
My Fair Lady
My Fair Lady
My Fair Lady


************************************

I still remember the first time I played the song for my cousin. I've been known to give my friends "bathroom concerts." This is when I write a new song that I haven't recorded yet, but am excited to share. I go to the bathroom where the acoustics are good, shut the door, phone a friend and play to my audience of one. Anyhow, when I first played this song for my cousin she cried and said, "How did you know that I used to lay under my quilt and pray?" That's what I love about writing and especially for me about writing songs. Words can provide a catharsis that can be so healing.

To Moonchime's granddaughter and anyone else who suffers from agoraphobia, or who knows someone who suffers from it, I hope that you can resolve your fears.

~ Clementine

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Magical 22 06-22-2004 - 10:32 PM
My mother has been phoning every day since her visit. It's very nice and our calls are warm and lively. We're in an "on" phase of our relationship; those are my favorite. We've had more "off" phases since my dad died when I was 16 than anyone should ever have with a parent. Anyhow, I told her that it's my anniversary today, and she said, "Mine too!" I had forgotten that completely, though don't know how I could have (percocet does terrible things to my memory!). June 22 was my father's birthday. And my parents' anniversary. And my anniversary too. I wanted to pick a magical day for a magical union.

The 22nd has a long history in my family. My father's mother was born on November 22. He was born on June 22. I was born on May 22. My son "W" was born on November 22. BabyE was born on February 22. Our anniversary is on June 22. Coincidental? My husband owned our house and a boat before we married. The NY tags on the boat are "2022". Our house is off exit "22". The other day I noticed that the license plates on the car he bought last fall are "6822". I haven't any clue why I'm writing about all of this; I just think it's very interesting. None of the births were induced, by the way. BabyE was late and I had even tried taking castor oil TWICE, but that only emptied me of everything BUT the baby! She came into the world the evening of February 22 and the next day big beautiful snowflakes fell lazily to the ground. I watched them from my hospital window like I was inside of a snow globe.

My doctor told me I didn't have to come in to the office unless I continued to bleed bright red blood. I haven't, but I feel lousy today. I hurt, my back hurts, my front hurts, it hurts when I stand up straight. I'm so incredibly frustrated. Moonchime wrote that the hurting bones might be due to a hormonal imbalance, and icare4bunnies wrote to someone about the thyroid being out of whack after surgery, which my doctor had also told me. I'm afraid that my hormones and/or thyroid are frazzled this week. I know it's silly, but I just thought I could prevent all that by keeping a good attitude. I want my first week back. I felt so calm and warm and wonderful, in spite of the pain.

I know that my hormones are working. I provide milk for babyE, which is how I gauge the function of my ovary. My poor little flower, floating all alone in a swollen sea of blood, wondering where its friends have gone, struggling valiantly in spite of their absence. I don't want to feel so sub-par still. It has been 18 days. 18 days of jello, metamucil, water, sleeping, hurting, feeling isolated. I'm beginning to miss the world. I miss yoga. My doctor told me I could do it whenever I felt I was ready, but I can't even stretch without feeling a painful tugging in my abdomen.
I want to be a big baby right now. I want to cry. Maybe I can get it all out and be better tomorrow.

~ Clementine
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Happy Anniversary! 06-22-2004 - 09:04 AM
Today is my three year wedding anniversary! I slept so poorly that my husband was the first to say, "Happy Anniversary!" I had completely forgotton; so very not like me. We had tentatively planned to go to dinner tonight like we usually do, but I told my DH that I just don't think I'm up to that right now. I'd rather stay home and celebrate here with a special home meal.

He fretted because he hasn't had time to get a proper gift. Now, normally, I'm all into the gift thing, but today I really don't care. He is my gift. Every tender, thoughtful thing he's done for me these past few weeks are my presents. So I told him I'd be really happy if he got me a certificate for a massage or a pedicure and one of those lovely potted flower arrangements they have at the farmer's market down the road. I did not go overboard either: just got him a certificate to hit golf balls a couple dozen times at the golf range (I know he'll love this!). This year I want a simple anniversary to mark our simple wedding in the chapel across the street.

The heavens just opened and the rain is pouring from the sky... There. I just opened the door to the sleeping porch. Have I mentioned how much I love the rain? It's cloudy, dark, and foreboding out there: perfect weather for sleeping and reading a good book, which I shall do as soon as I finish here. Musn't waste this golden opportunity...

My pain was pretty severe last night, all through the night. For a few hours I couldn't even stand up straight because the pain was knife-like in my pelvis. The bleeding, however, subsided into a rusty occasional spotting. This morning the pain feels more normal (how strange to write that: a normal pain, as if ANY pain could ever be NORMAL, but you know what I mean... given the circumstances, etc., etc.). I don't want to go to the doctor's. I don't think I need to; I think it was just a hematoma like he said and all will be fine now. But I did phone the office to report my condition and am hoping that I will not be summoned...

My DH took babyE to work with him today! Oh, glorious day! I nearly cried last night when he told me that he wanted to have the 14-year-old girl come again. I'm sick of people in my house. It felt so liberating and comfortable yesterday being home alone with babyE. And I hate that whoever is here watching things-- whether they are 14 or 64-- feels inclined to "peek" into my room without knocking whenever they get the urge, confident in their post as "nurse" I suppose. And I did not want babyE farmed out to friends. She is so easy, really: even-tempered, snuggly, independent and good, that I just wanted to keep her with me. So, what a wonderful surprise that he suggested bringing her to work! She's still with a parent, having a great time, and I get a bit of truly alone time (what a luxury!).

Thank you everyone who wrote with concern or hugs last night. It helped keep me from being too scared when Sanguiness told me that she'd had blood too, and that texrarah's doctor forewarned her about possible hematomas at 2 weeks. Moonchime, you could never outstay your welcome... don't go! And icare4bunnies, jrothhaar, and empresse thank you so much for the blessings, prayers and hugs... I really needed them!

I had to laugh this morning when I read empresse quoting PraireLakeLady about training our DHs to meet our needs. My DH always says, "You write the script and I'll say it." I used to become hurt over some of the seemingly insensitive things he'd say or do, until I realized that there is never any malice intended. He is merely a man . They truly have no idea about some of the things that will upset us because they are different.

The "script" thing has worked very well for us. I say, "Honey, if you would instead say ........ instead of ....... it would make me feel so much more ....... (fill in blanks accordingly)." Or even simply, "I love it when you ......." He confided a few days ago that the reason he's been keeping the kitchen so surprisingly tidy is because his esteem soared when, the first time I can downstairs after my surgery, I said, "I appreciate you keeping the kitchen so clean for me!" A wise woman understands the differences between men and women and knows how to accept them and work through them!

I've noticed since my surgery that my BONES hurt at night. I know that sounds odd, but when I go to sleep I am in so much pain that I remain in the same position for several hours. Eventually, I wake in agony, with my bones feeling as if they will break. I have to ease myself out of my position and shift to a new one, until I wake again a few hours later and have to do the same thing all over again. I wonder if anyone else has experienced this? I think I'll put a post up tonight about it. I've noticed here that only other journal writers make comments. I wonder if this means that others don't read the journals, or that they don't know how to click on "discuss" to add comments, or maybe they don't think they're welcomed. Well, if anyone is out there, I welcome opinions, come one, come all !

It's time to curl up in a ball, read my good book, and drift off to the quiet rush of the rain. Even the birds are asleep. It's so beautifully uplifting...

~ Clementine
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Gushing Blood, Scared & Sad about Sassy 06-21-2004 - 06:48 PM
I was all ready to begin my entry and then I read Sassy Gal's goodbye. I feel so sad, for I feel like I've lost a friend. I don't know if she is just ending her journal or ending her association with Hystersisters, but it sounded like she was saying goodby to Hystersisters completely. I understand that the goal for all of us is to heal and move on. Of course that is what everyone here wants and prays for... I guess I just had the naive notion that even if we moved away we would occasionally visit and say, "hi," or write a few comments. I wonder if anyone else feels the way I do?

Today was my first complete day with no help. I stayed downstairs for most of the day and rested on the couch while babyE played around me, snuggled, and watched a little TV. I did manage to feed myself and babyE. I felt great in the morning, and active. I unloaded the dishwasher and straightened up a bit, but I was very slow and careful not to bend or strain or hurt myself. Around 1pm we came upstairs and took a long nap together. After the nap is when things got tough for me...

I fixed a quick and easy dinner of quiche, ham, sweet potatoes and fresh salad, but I was in pain and moving was not easy. My DH had to go to an award's ceremony at his school and I was so disheartened about being left alone, but my DS "W" is a pretty good helper and he has been a trooper, assisting with babyE as best he can. Well, my pains felt bad for awhile; almost like a burning feeling, and I chastized myself for overdoing it, while bemoaning the fact that at the time it had seemed I was being so gentle and careful. Then babyE soiled her diaper... this was a huge bummer because she has not gone poo in her diaper since the first time she managed it on her potty. She actually seemed to prefer the potty. And I was so tired at that point...

As I was changing her diaper I could feel fluids begin to leak out of me at an alarming rate. It felt like the beginning of a period. I came upstairs and went to the bathroom to check, hoping it was nothing. I had soaked through my pantyliner with bright red blood. As I sat on the toilet, I could feel and hear the blood continue to pour from me. When I looked down, the red water confirmed my fears. Of course, I phoned my doctor, my DH, and put up a thread on the Post op forum.

My doctor phoned and we had a good laugh when I said, "You know how it feels when you start your period.... well, of course you wouldn't know that!" And he chuckled and replied, "No, but I've heard." He told me that it sounded to him like I had a hematoma at the top of my vagina. He explained that's when there's a small blood clot that pops. He said it is usually characterized by the symptoms I described: bright red bleeding for about 10-15 minutes that tapers off. He explained that they are fairly common, but that if the bleeding occurs again to the same degree I should head directly to the ER. He said if I simply continue to spot some red blood throughout the night I should come to the office in the morning. I didn't ask him if being overactive could bring this on... I should have, I know, but I still don't think I did all THAT much! [confession: okay, I seriously wanted to and thought about vacuuming, but I didn't! I was good!]

So, I'm laying down, still feeling crampy, waiting for my DH to come home and feeling nauseated and tired and sad that I'm bleeding and sad about Sassy Gal. Boo hoo.

~ Clementine
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The Sept. 11 Box 06-20-2004 - 10:49 PM
When Super babysitter "K" came tonight she brought her memory box from September 11, 2001. I felt honored to listen to her talk about her experiences: sitting in class, her pager going off, throwing clothes in her bag, having 3 hours to report to a post that was 5 hours away. "K" served our country for six years in the National Guard and for two of those weeks did active duty at Ground Zero. I know how scarred she still is from the experience, and that she does not talk about that time to many people. I have never asked because I could sense her sorrow, and I was surprised and honored that she shared her pain with me.

She forgot the box when she left tonight and I can't keep my eyes from straying towards its position across the room. Somehow, seeing photographs taken by someone I know brings it even closer. One photo in particular showed how the trees were littered with paper, like a heavy layer of snow. Except that it wasn't snow; it was bits and pieces of people's lives blown apart and out of context: a torn half sheet of a day planner beside an office memo beside the page of a book. All the sheets were burned around the edges but the text was preserved. You can still feel the layer of chalky dust on them. Dust from asbestos and concrete and wood and human ashes. "K" breathed in that same dust and has permanent lung damage from it (only paper masks were available to them, and those clogged up within minutes).

"K" told of the people trapped in the underground parking garages. How the firefighters couldn't reach them, how the search and rescue dogs they sent down never returned, how they filled the garages with water. She said that for days they could hear tapping from survivors who could not be reached; people who were never reached. She told of the people who looted, the necessity for security in order to prevent crime. She also told of the tremendous support from residents and the donations that flooded in from around the country. She told of the flags that hung from buildings everywhere. Hundreds and hundreds of American flags.

I won't go into more detail. I don't want to offend anyone or open wounds already mended. It was a terrible time for our entire country. Seeing it through the eyes of someone who was there has renewed my reverence for the people who protect our houses and towns and cities and country. It has reinforced again how thankful I am for everything I have, and how sorrowed I am for the innocent citizens of Iraq whose daily lives are marked with things similar to the contents of "K"s box. I pray for everyone tonight. I pray for a peaceful future for our children and the nations of the world.
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Feeling Better on Father's Day 06-20-2004 - 10:39 AM
It's Father's Day today! Rah rah rah! I'm not sure when it happened, but sometime in the past few years I stopped feeling sad on Father's Day because my own father is gone, and started celebrating the day as my husband's. I snuck out of bed this morning, herding the kids with me. We put together a mini feast of coffe, juice, waffles, and strawberries & blueberries and carted it upstairs. We rolled my rented hospital table around to my husband's side of the bed and piled around it, giving him our cards and presents. I am thanking my foresight that I bought those things before my surgery, because there's no way I could have done it since. And, boy, was he surprised! I love surprises!!!

Unfortunately, my DH has to work today. He's not upset about it-- it was his choice. He said working today will pay for all of the babysitting we've needed. I'm sad to think of him going to entertain other people instead of being spoiled by his own family, but he remains cheerful. As long as he doesn't mind I am okay. I would hate for him to feel the heavy weight of obligation and be burdened by it, but he's not like that. He actually likes to work, part of the Type A thing I suppose.

Super babysitter "K" is coming over today and taking me grocery shopping. She'll put babyE in a cart and I'll follow in one of those motorized contraptions. I'm looking forward to stocking my larder again! And getting out! Whoopeeee!!! I rode one of those carts last year after my laparoscopy and I have to confess I thought it was great fun. I do recall, however, feeling like I got a mini course in how hadicapped people must feel. There were people who avoided making eye contact or who refused to get out of the way to make my progress easier. It always surprises me that in this day and age there are still people who are so rude and clueless.

On a lighter note, my DH bought me a tube of the Neutrogena deep clean cream cleanser and a jar of the Nivea moisturizer that Moonchime recommended!!! I absolutely loooooove them both ! The cleanser made my face tingle and feel so gently cleaned! And the Nivea cream smells heavenly and spreads like butter. I feel so thoroughly spoiiled! Thanks, Moonchime for the suggestion!

I am feeling better today and less useless and like a weakling, largely due to all of the kind comments I received yesterday.

Anna, thank you for taking the time to comfort me even when I know you have been feeling so blue yourself.

Gemsab, thank you for reminding me it's not a competition; I know in my heart it's not, yet that's exactly what I make it when I get mad at myself for not healing as quickly as others.

Texrahrah, thanks for sharing that you needed stronger medication like me too-- it helps me feel like less of a drug addict !

Moonchime, your comments help soothe me, especially knowing how long your own struggle has been and how optimistic you remain.

PraireLakeLady, you always write the most thoughtful, encouraging and empathetic words to everyone; thank you for being such an angel to us all .

Floppsy, thank you for sharing your experiences; I can imagine that babyE will be reliving this story for months to come too!

Thank you, everyone, even if you didn't write but just sent a positive thought or prayer! Every little thing helps make a difference!

~ Clementine

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Feeling like a Sissy 06-19-2004 - 10:14 AM
It's a beautiful, overcast day. The door to the sleeping porch is open and a lovely, cool breeze has been billowing in all morning. The leaves are rustling in happy, excited chatter. I don't have much to say. I wrote the following in a post op thread and figured I'd paste it here since it's an accurate reflection of my post op recovery:

"I am thirteen days post op today and feeling blue. I have been browsing all the different posts today and it seems all I see are people who said they only needed ibuprofen for the pain after their surgeries. Well, I need ibuprofen (800 mg. every 6 hours) PLUS a percocet every 4 hours. Even then, the pain does not always go away. I thought this was fairly normal, but now, after hearing from everyone else, I feel like a Sissy and a weakling.

I'm still spotting a dark yucky brown gunk and yesterday I even had a patch of fresh red blood. I get up and walk around the house but get exhausted easily. While I do feel slightly better each day, it is a slow, slow process. I hear of people up and about after three weeks, or two, or even one and feel like there's something wrong with me that all I really want to do is sleep and be left alone."

I remember reading a post from someone who said at one week she was able to take care of her 2 year old by herself with no problems. Copswife123 was out and about at three weeks and at four sounds like she's doing just fine. It doesn't help matters that my DS, "W", has been moping around all morning saying he's sad. How can I take care of his emotional needs when I can't even stay awake right now? I'm grumpy and irritable and that just makes me feel worse. I look at the calendar and see that it's already June 18th and to me it feels like it should still be June 6. Where did the time go? I'm so frustrated.

~ Clementine
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PRAYERS NEEDED 06-18-2004 - 10:58 PM
To all who read this entry: I received an e-mail today from the DH of a special hystersister who I have become close to. We had our surgeries near one another, and it seems she is now in hospital with pulminary thrombosis. Please, remember her in your prayers, as will I. Unfortunately, this brings too close to home for all of us the serious nature of this surgery and the recovery. Please, newly punctured princesses, don't try to do too much too soon.
Please, everyone, say a special prayer for my friend tonight.

With love, ~ Clementine
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Two Weeks Post Op 06-18-2004 - 04:33 PM
Oh, I just love it here. It is like a living book with real characters; an interactive book. I get outraged when someone is hurt, happy when someone triumphs, and I can even get advice on skin & hair care and child rearing. (tee hee!)

I do have to say, though, to icare4bunnies and PraireLakeLady: don't worry about me pushing babyE about the potty training thing. Remember, I was the one saying I'd rather sit on the couch and have her mess her diapers! (someone else had a similar entry this week about feeling the need to potty train, t'wasnt lazy old me!) This was Super babysitter "K"s idea so I'm just going with it... I wholeheartedly agree that when they're ready they're ready. My son just one day was trained. Voila! I never put much effort into it, other than buying a potty and letting him run around naked (it was Tucson and unbearably hot). Surprisingly, babyE has used her potty all day with no accidents. DH came home and marvelled, "She's potty trained," to which I replied, "Yeah, we'll see tomorrow when it's your shift!"&quot.

Two weeks ago today I was awakening in the Castle... I continue to feel a little better each day. Yet I still have terrible pains and rely on my pain killers. I hate having a brownish yucky discharge, ick! For some reason, today I feel crabby. I don't know if it's hormones or the fact that I feel well enough to have the desire to do things but not yet the physical capabilities with which to do them. People who were so accomodating in the beginning are now calling and brightly asking, "So, how do you feel?," as if I am supposed to answer, "All better." I hate having to remind everyone that I feel much better but still have a long way to go. Our fast food society has such a short tolerance for things like illness and recovery. I want to go buy Moonchime's face cleanser and a jar of Nivea (I mean, come on, after all that great advertising ), but of course I can't. Everything I want I have to ask for... such a lesson in humility!

And now I have to go. Superbabysitter "K" left an hour ago and babyE just peed on the floor! tee hee hee!

~ Clementine

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More Horrors at the Elementary School 06-17-2004 - 07:11 PM
I'm tired and achy and in pain today. My back hurts, my front has cramps, and I feel like I'm going to get my period soon. That's one of the positive things about this surgery... no more pads!

Super babysitter "K" is staying into the night since my DH just left to work for a few hours (I know that somewhere out there in cyberland, someone is shaking their heads and saying, "Poor dear. Isnt' it obvious that her DH isn't working late all these nights, but that he's having an affair???" But he really is working. He's a musician and a teacher so he's always off playing gigs.). I'm so happy that "K" is here. She takes care of everyone as I have described and she made a wonderful chicken and vegetable dinner tonight and even cleaned up. Yet I miss the quitetude. We're a mellow family. Even babyE will frequently tell us to let her play alone and then will proceed to play "dollhouse," or puzzles, or read her books for an hour and a half. "W" likes to read.

By contrast, "K" is high energy and strict! It's funny because she's only 25, but her military training has her handling the whole household like she's our Captain. Sometimes I feel like babyE and I are the sisters and she is the mommy . Poor babyE is not keen on this whole potty thing, but "K" is bound and determined. It's not that I wouldn't love to have her trained, but "K" leaves us on Monday to begin a new job and I will be left, 3 weeks post op and swelly bellied with a baby who soils about 4 pairs of underwear a day... Not to mention all the time sitting curbside next to a little plastic potty. I'd rather lay on the couch, eat bon bons, put on "Dora the Explorer" and let babyE mess in her diapers. The funny thing is that I know babyE would like that too. This potty business is much too time consuming for her satisfaction. Am I a horrid, lazy mother or what? But "K" has put in so much time that I feel it is my duty to at least try... I mean, at least for a few hours, right... ?

I will miss "K" though. I thought I'd feel a little more energetic by now, but I'm still tired and I have times where the pain goes from a 2 to an 8 in mere minutes and I want to crawl into bed, surround myself with my heating pads, plug in the computer, or read, or sleep... visiting with people, even talking on the phone tires me out. "K" has done laundry, cooked dinners, and kept the kids clean and happy, in addition to tending to my needs. She's a wonderful wife . We have grown closer this week and more and more she feels like a beloved younger sister or niece. She feels the same way and has already been talking about making arrangements to see us and babyE even after her job begins (she'll still be available for evening visits). DH and I have joked with her than some people build inlaw apartments onto their houses, but we're going to build a "K" apartment!

"W" had another miserable day at school. Each year, a group of 5th graders are chosen to be Safety Patrols to monitor the halls and keep general order of the younger students. About a month ago, "W," who detests writing, penned a smashing essay about why he wanted to be a Safety Patrol (the interested students were required to submit an essay). Today, "W" learned that he was not selected. To make matters worse, about 10 other children in his class of 24 were selected. He said to me, "I want to cry. This has been the worst week of my life. First I get deported and then I don't make Safety Patrol." And, of course, to top it all off with a cherry, he has a sick mother.

I spoke with my mother for nearly an hour tonight and she is outraged at the whole of it. She just retired from a 35 year career as a 2nd grade teacher and is appalled that teachers would "deport" children and then take a photo of them, and single students out to be in a group or club like Safety Patrol, while excluding others. "W" told me that he thinks it's a popularity thing; the teacher in charge picked his favorite students. One of the girls who was selected only wrote a few sentences, whereas "W" submitted a 2 page essay, complete with impeccable spelling and grammar. In my opinion, every student who was interested should be allowed a few days or a week to do the job. Competitions like this do not belong in an elementary school. Grrrr. My mother urged me to complain to the principal and head of the school board (when a teacher suggests such a thing, you know they're really steamed ) My ire is raised over the whole nonsense and I feel a letter coming on...

Gotta go do damage control and play a few games of Uno with "W." By the way, I owe a debt of gratitude to Moonchime for posting her ghost stories this afternoon. They couldn't have come at a better time! Quick thinking me elicited the attention of my poor bedraggled son, who has a weakness and fascination for ghost stories. We read them together and he was so delighted that he made me repeat them to everyone else at dinner. Thank you, Moonchime!!!!!!! You are our for the day!

~ Clementine
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The Road to Recovery 06-17-2004 - 08:23 AM
I want to make sure that I continue to record not only my day to day emotional journey, but my physical one as well. There is a good possibility that I will one day have to have my remaining ovary removed and I would like to be able to reassure myself that it's okay when my healing is slow. Not to mention the fact that others out there may be going through the same thing and gain solace in the fact that they are not alone.

I continue to feel a little better each day, but this does not exclude the fact that I have days where I can hardly stay awake. I don't know if this is a result of the healing process or the pain medication, but I presume it is a combination of the two, and I willingly acquiesce to my body's demands. Yesterday, I was reading the Hystersisters book and got to the part where the "Blossoms" discuss the common occurrence of bleeding after two weeks. Not more than a few hours later, I noticed some fresh, pinkish blood, and have had a slight brownish discharge ever since. I think it has something to do with the stitches healing, but I'm not concerned since my doctor told me it would be normal to bleed intermittently during the first six weeks. He said not to worry unless I started to bleed a lot. "What's a lot?" I asked, and he replied, "like a period." Well, I feel like I'm getting a period; crampy, sore... of course, I know this will not be happening!

Unfortunately, I relate to other things written about in the book as well. Tuesday night when I went to my DS "W"'s violin recital, I pulled out one of my "expanding" skirts (I usually secure it with a discreetly hidden safety pin in the waistband at whatever size I happen to be). Well, the skirt required no pin whatsoever!!! I've been existing in my DH's boxer shorts and t-shirts during my recovery and have even felt sort of "slimmish" with my legs bared and my toenails painted. What a harsh crash to reality! The scale has stayed the same, but who cares if my clothes don't fit? Guess it's that "swelly belly." Too bad I didn't save my maternity clothes!

Last night was my favorite kind of night. We slept with the door to the sleeping porch open and a rainstorm settled over our town. The sound of the rain falling through the leaves of the trees, and the feel of the occasional damp breeze was so relaxing. It was even a pleasure to go to the bathroom, where I could hear the tapping of the rain on the skylight.

Today, it remains cloudy and cool and I am hoping for more rain. I love rain. I think my years of being without rain when I lived in Tucson have made me appreciate it even more. I remember when we would get the occasional monsoons there and everyone would run outside. It was the craziest thing; rain was such a rarity there that people actually wanted to revel in it when it happened. The monsoons were fantastic, flooding the streets and pouring from the sky like a great ocean being emptied all at once. If you were away from home, travel was dangerous, but in the safety of your home it was a grand sight.

It's not really a surprise to me that so many of us want to be writers. I mean... hello, we're all writing ! We are writers, naturally and instinctively, whether we desire to publish or not. It does help explain why I enjoy reading so many of the journals; they are like daily chapters of favorite novels that I read a bit of each day and savor. Each book has a different name, like "Moonchime," or "icare4bunnies," or "empresse," but they all belong to the same volume. To answer empresse's question, I do not know what type of novel I'm writing! I have done research all year about American history; especially the pioneers. I would like to write either a young adult novel or a romance novel; something that has a decent market for publication. It's an idea that continually takes shape in my head, but is not yet ready to be put down. It is the wine seasoning in the oak barrel; almost ready, but not quite. In the past I've written two and a half novels and several short stories, but I only once attempted publication. I will know when the time is right (no pun intended ). I would also like to explore selling some of my songs. I have no desire to be a travelling folk musician, but there is a good market for songwriting, since most of those "name brand" musicians don't really write their own music. I like performing my music occasionally, but would be happy to make royalties from other people singing my songs.

Thanks, Audrey S. and icare4bunnies for your kind comments about my house. It's a bit of a curse, being so over-obsessed with cleanliness. I often wish that I could be one of those people who live in comfortable clutter; there is a reassuring creativity in that, there really is. I enjoy visiting the homes of my friends who are carefree like that, but in my own home... well, we shan't go there...

Jeanette & gemsab, it's reassuring to hear your comments about your own darling husbands! It's true that it is much better to be with a clutterbug who is a kind and good man, than to be with a neat freak who is an unsupportive boor. I'll take my man, squirrel piles and all, any day of the week!

Super babysitter "K" is hot on the potty training mission this morning. Yesterday, poor babyE experienced her first 'accident" in her big girl underpants. They had been outside playing ball, and I heard babyE's screams as "K" carried her inside and up the stairs to the bathroom. I think the sensation scared her, poor little thing! We helped her into the bath and then I cradled her naked in her towel until she calmed down. It comforted me that when in crisis it was still mommy who she turned to. There really are times, for all of us, when only mommy will do.

~ Clementine

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The Honeymoon's Over 06-16-2004 - 09:48 PM
I realized tonight, as I walked throughout the lower level of the house, that it is beginning to show the wear and neglect of my being "absent" for the past 12 days of my post op. I felt like a citizen returning to its war torn country after a battle and assessing the damage. The cleanliness and order I established before my Castle visit no longer holds the same sparkling feeling. The floors show dirt, a light film of dust covers everything, dishes and silverware have been put into compartments were they do not belong, and the refrigerator contained certain rotting food items placed there before my surgery.

By far the worst, however, are the little piles of clutter throughout the house. I have managed to keep on top of babyE's toys and instructing my DS "W" to put his items away, but it is my DH who is the culprit. He is like a squirrel, hoarding little piles of paperwork or newspapers or who knows what throughout our haven. He has favorite spots, but no surface is sacred; wherever he happens to be at the moment will do. At times he will sort through these piles, which consists of his making six smaller piles out of the one larger one and leaving it in the same spot...

I don't mean to complain about my DH. He is marvelous and I am lucky to have him as my partner. We are wonderful friends who communicate and have great fun together. He vacuums, irons, wipes counters and has been doing a surprisingly impressive job keeping the dishes and pots clean and the laundry done. The clutter piles are part of his personality. I was well aware of it when we married and have managed to stay on top of things most of the time. I've become the organizer, which is fine. But without my physical presence, let the clutter begin. I realized that if my recovery were to be measured in stages, this would be the end of the "Honeymoon" stage, which is a sad state of affairs no matter what the occasion.

I spent about an hour tonight restoring things to their natural order. I began to feel some of that old familiar anger from my painful endometriosis days, which alarmed me. I don't want to be angry anymore. One of the greatest results of this surgery has been the calm it has left throughout my being. My relationship with my DH has been better than it has been in months because I have been appreciative and thankful for all he has done. This works very nicely because then he feels appreciated and wants to do more. He will even rub my feet (never before done; not even during my pregnancy), which makes me feel so happy that I will massage his arms or hands and rub his back while he drifts off to sleep. It's a wonderful cycle.

This gave me all the more reason to want to squash these angry feelings when they surfaced. I've decided that even though the source of the anger is gone (the endo), I still possess behaviors learned during that period that I need to change. I reminded myself of how fortunate I am, and of how hard my DH has been working. I mentally "walked a mile in his mocassins" as I wiped down counters and emptied the fridge, and could relate to how overwhelming things have been on his end. The anger, after some work, began to dissipate. I'm feeling calm and happy now and am hoping that this strategy will work again in the future.

One positive thing that I've been doing is Hystersisters. Oh, not just for the venting-in-the-journal-making-friends aspect, but for the helping others part. It really fuels me to read posts from LIWs or people who are struggling and to offer some words of encouragement and perhaps share a similar experience of my own. For so long I lived in the cocoon of my pain, and only truly became alive in the books that I read. It's refreshing to be part of the real world again, however minimal my contribution might be.

Gemsab, thank you for all of your praise about my writing. You have no idea how much I treasure those comments. I have wanted to be a writer since I was ten years old and started penning my first book about a girl named Elizabeth who lived on a farm. I completed my first novel when I was 15; just a frivolous romance that was never published, but at the time I sure was proud. At 19, I wrote another, tried for publication, was rejected and, indignant (in the way that only teenagers can be ) wrote to the editor telling her of her mistake. She graced me with a detailed letter offering specific critiques of my novel. It was one of the kindest things anyone ever did for me! I continued to write and participate in writing groups, but when I returned to college after a two year hiatus I knew intuitively that I never wanted my writing to become a chore, so it was not my major. It did, however, continue to be my first love.

After college, I actually pursued a year in graduate school taking creative writing, but when I realized how many unemployed MFAs in creative writing were walking around, I majored in something practical and useful instead. I had a little boy by then and someone had to take care of him! Obviously, school was too consuming to enable recreational writing, so it was put on hold.

During my status as a single mother I had many issues to deal with, but could not afford therapy. I began to write songs, combining my writing and my music, and immediately felt as if I'd discovered what I was always meant to do! I call it my "poor man's therapy." I performed for awhile, but with the pregnancy and birth of babyE, and the battle with endo, I have not written a new song in a long time. My main reason for wanting the laptop that I'm typing this on was because I wanted to write a novel. Of course, a laptop is not necessary for such an endeavor, but I thought it would be more convenient since I type faster than I can scrawl; almost as fast as I can think.

When I found Hystersisters and then the journals I was hooked. How perfect: a way to emote and come to terms with my illness, while practicing my writing, which has become rusty over the years. I apologize for my meandering in telling this long story, but I wanted to explain how such a generous comment about my writing made me feel inside. It brought tears to my eyes. Thank you, Gemsab, from the bottom of my heart. Thank you, everyone, for all of the kind comments you have made that I can return to whenever I need a bit of affection or reassurance. While given fleetingly, these comments remain a permanent and treasured component of this journal.

~ Clementine
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A Calmer Day 06-16-2004 - 12:41 PM
Today promises to be a much calmer day than yesterday. My pain from overdoing it has ebbed and after a good night's rest "W" was acting sweeter this morning. His teacher phoned and we talked all about "Immigration Day" yesterday. As mentioned, I love his teacher. He was surprised that "W" was upset because he said that "W" joked with all the rest; it made me feel good that at least "W" can manage his emotions among his peers, for that will get him farther in life. His teacher told me that 3 other teachers had planned the day and he also didn't agree with some of the concepts but, being a first year teacher, his opinion was not as valued. He too was horrified by the overzealous room parent "deporting" children. Anyhow, he had a talk with "W" this morning and I think all is better. One of the problems (there's always another side to the story, isnt' there?) was that "W" handed in his immigration packet late and was told, "How can you expect to get in the country if you don't have your papers?" But of course "W" didn't tell us that part . All's well that ends well. Thank you ~LRF~ and PraireLakeLady for your thoughtful remarks.

Wonder babysitter "K" is here again today. Sigh. Relax. I admit that I snatched babyE from her crib at her first sound this morning (don't worry, I "led" her out gently and walked her to my room). We nursed and had a good snuggle before she got wind that the funnest babysitter in the world had arrived! "K" put her in "big girl" underpants today and had her on the potty half the morning. I appreciate this as it was something I would have been doing with babyE if I hadn't had the surgery. I don't want to push her before she's ready, but I figured she'll never learn what the "urge" feels like if she doesn't associate it with wetness (they make diapers too well these days ).

On a more carnal note, in a fit of desperation last night I swallowed 4 tsp. of milk of mangesia. This morning I had a gentle relief like the old days. I think I've found my new miracle cure!

I uploaded some photos of the family into my member gallery today. The picture of babyE is so indicative of her personality! My DH printed a 5" x 7" copy and tucked it into a corner of the lithograph on the wall opposite the bed so I can feel her presence even when she's away. The pictures were taken on May 22, my birthday, when I was still a Lady In Waiting who thought she had to wait until December to be out of pain. It seems like only yesterday; it seems like a lifetime ago. How quickly life can change.

A lady from the church came today to give me Holy Communion. She came last week too. I find the ritual comforting and familiar. I have prayed more these past few weeks than I have for the total of the whole year. It feels nice; I feel nicer inside. We said a prayer together for all of the Hystersisters who are going through this now, will be going through it soon, or who have gone through it in the past. So, don't worry, Sisters, I've got you covered!

BabyE is asleep beside me and I am going to join her and inhale her sweet fragrance before she awakes and abandons me for greener pastures.
~ Clementine
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Replaceable 06-15-2004 - 09:28 PM
It feels like a YEAR since I've last written, when in truth it's been less than 24 hours. This day has been long and exhausting both physically and emotionally. It all began with a beautiful, cloudy morning. It stormed all night, so the moist, cool air billowed in all day from the open door of our sleeping porch. I love the sleeping porch. I can sit on the bed, typing, sleeping or reading, and look through the open door where I see a collage of green beyond. I so much love trees and grass. I lived in the desert for 10 years and enjoyed it, but my soul really belongs to the woods, meadows & lakes.

My much beloved babysitter, "K" arrived as babyE awoke. Now, normally, babyE cries and fusses until whoever rescues her from her crib brings her to me. She likes a snuggle and a little nursing before she starts her day (baby coffee). Today, for the first time in history, she clung to "K" and when I approached she gave me a little push and burrowed deeper into "K"s arms. I laughed, understanding how much she loves "K" and how excited she was to see her, but it was a strange feeling inside. I felt replaceable. It was a feeling that was both horrific and reassuring. Reassuring, because it's comforting in a weird sort of way to know that if anything (God forbid) awful ever DID happen to me, my children would still be able to find love and nurturing.

"K" took fantastic care of babyE and of me, even cooking up a divine pot roast for dinner. She is only 25, but a "natural" maternal force; she can manage my entire family as well as I can. We have become so close this past year, with her watching babyE while I teach, that she feels like family. Later, DH, "K", and I joked that if it was pioneer times I would be picking her out to be the new mommy for my kids and wife for my DH. I never forget how fortunate we are, even with all of the medical mishaps, to have modern medicine available to us in all its glory. 100 years ago, I would probably be bedridden most of the day and would die prematurely from the pain. Now, I can spend a few months recovering from a surgery and possibly have a beautiful, pain free future... keeping my fingers crossed...

My DS, "W" had what promised to be an exciting day at school. The entire 4th grade class had what was called "Immigration Day." Each student was to arrive at school dressed in "period" clothes from 1905 and pose as immigrants from the country of their choosing. They were allowed a pillowcase of possessions containing the following: something to remind them of their country, a memento of their family, something useful, something to provide leisure, and something valuable.

We spent hours last night, laughing and planning. We researched online and discovered that glass marbles were a great value in the US from 1890 until 1920 because they were only manufactured in Europe. He brought a bag of marbles, a bag of stones (which he has collected from various places we've lived), a little Bible, some "seeds" for planting, a toy that he made last year at Pioneer camp, and two "black & white" photos of the family. My DH printed the photos last night and I decoupaged them onto card stock to make them look shiny and old.

Well, 3:30 arrived and "W" came home miserable and dejected. *A side note here to say that I discovered him at 2am playing Nintendo in his room (who knows how many nights that's been going on, but the Nintendo is no longer a feature of his decor) and I expected to have a grumpy boy.* It turns out that a room mother, who posed as an Immigration Officer, "confiscated" his photos and told him his marbles were useless. The students were given a "quiz" of US history ("W"s was perfect), but for no apparent reason, "W" was one of the students chosen to be deported. They handed him a sign that said "Deported" and took a picture of him holding it. The other students all laughed and my poor DS wanted to cry all day.

Now, I am an educator. I understand the reasons for the deportation thing, but I have so many problems with the way things were handled. To assign someone to be an Immigration Officer who has no knowledge of that part of history is NOT conducive to a positive learning environment. If the only goal of deportation was to show kids what it feels like to be ostracized, then it should probably be reevaluated. By the time kids reach 10 most of them have already experienced that a time or two in their lives. I know for a fact that many mothers spent time researching costumes and items for their children, yet these items were never shared with class. Wouldn't it have been nice if the kids presented the contents of their pillowcases and explained why they brought them? Wouldn't that have been educational? "W" was never rewarded for his perfect quiz. He was upset that his photos were taken and returned curled and folded. He was too tired and too emotional to understand that his friends were laughing with him and not at him. When he tried to talk to his teacher, he was laughted at and told, "I don't have time for you."

Now, I love "W"s teacher. It is his first year and he does most things right. It's been a pleasure to watch my son blossom under his tuteledge. But this man knows about "W"s medical condition... he knows I've just had major surgery... I was disappointed that he wasn't a little more gentle with my boy. As a teacher, I have in the past inadvertently done things that hurt my students, and I was always surprised to discover them later. I know that Mr. H. will be kind and understanding. But it was hard to do damage control... In the end, my DH and I laid on the bed with "W" and told him stories (he loves stories). I explained to him how important he is to his teacher because it is his teacher's first year. I told him how you never forget your first class. So "W" drank in story after story of ex-students from my and my DH's first year teaching.

Tonight, "W" had his first major violin recital. He has finished the first book in the Suzuki series and, together with 13 other students, had to play each piece memorized. It was my first (premature) outing since my surgery. It was excruciating, but I was also teary-eyed watching all those children make such beautiful music. BabyE had a few moments of acting her age, but overall it was lovely. "W", being exhausted and having had a bad day at school, was not appeased by the special Yugioh cards my DH bought for him as a surprise reward. He remained convinced that he was worse than anyone else (in actuality, he was one of the best, and I say that as a musician, not a mother). He sassed and had a mini episode tonight before we could get him to bed. Oh, I am soooooo weary. Two steps forward, three steps back.... two steps forward-- oops! Just fell down the mountain.

My DH went to my Dr.'s office today to pick up my refill prescription for percocet. Dr. Expert talked briefly with my DH and told him that the pathology report came back and confirmed the endometriosis. He also said that he would rather have me take my pain meds consistently and remain active, rather than rest too much. Now, why did he have to go and say something like that? I'm tired; all I really want to do right now is rest. DH assured me that the doctor doesn't advocate overdoing it, just continuing to walk a bit and not become too sedentary, so, Okay. It is reassuring to have the pros confirm that my pain was real. Last year, when the path from my laparascopy came in, I looked at my nurse and said, "Well, at least we know it's not in my head, don't we?" She laughed. Fortunately, Dr. Expert has never once doubted my pain, has always treated it as well as my endometriosis, and has done his best to help me conquer this disease.

I took an extra percocet when I returned from the concert. I feel a burning, stabbing pain in my abdomen from doing too much, my bach aches, and I'm sandwiched between my heating pads right now, beginning to feel the pain ebb and my eyelids droop. Tomorrow, tomorrow, I love ya tomorrow.....

Happy dreams ~ Clementine

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A Beautiful Quilt 06-14-2004 - 11:30 PM
Today Moonchime wrote about how we are all like a painting, our colors blending together into one composition. Actually, that's not really what she said. What she said is that we each "share our own bits of color and light to create a beautiful painting that inspires and uplifts each and every one."

The names of all the hystersisters who have been so inspirational and comforting to me becomes longer each day: copswife123, icare4bunnies, Moonchime, agreenberg, PraireLakeLady, deegeorge, gemsab, Sassy Gal, jrothhaaar, jmac35, shari43, silverfern, northlights, freckles_23, floppsy, empresse... Each comes to tell their own story and, in doing so, offers insight, information, humor, catharsis, and honesty (all free of charge and in the comfort of your own home!). This is laced with the outpouring of generous advice, validation, understanding, friendship, love, and cybers.

Each person is special and brings something different to the forum. Each is like the patch of a quilt, unique in its own fibre and being, beautiful in itself, but coming together to create a whole that is much more vibrant and stunning than a mere patch could ever hope to be.

Upon reading, we begin to glean more than just stories. We begin to see personality, character, kindness, compassion... you can almost imagine one patch as a satin sophisticated applique, another of calico whimsy; one of crisp simplicity, one of complex design and color, and yet another of woodsy delight. All are interwoven together to create a giant quilt, and it is this quilt that I wrap around myself snugly each night, sigh contentedly and close my eyes, knowing that my recovery will be just fine, because I have the most rare, beautiful and precious quilt to keep me warm and safe while I sleep and heal.

Much love to all of my Hystersisters, healed, healing, and yet to heal.
~ Clementine

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Feeling Helpless & Useless 06-14-2004 - 11:54 AM
Today my DH had to go to work and our dear babysitter is out of town, so we have a young girl watching babyE right now. She's a sweet girl, 14 (daughter of a family friend), and is doing a nice job playing with babyE, so I am turning a blind eye to the MESSY living room and the fact that babyE has conned the babysitter into giving her cookies and cheetos... I know she had a healthy breakfast, because I instructed it, and I just left her with a healthy lunch. No, please don't put on Finding Nemo because the last time she watched it she said "scary bubbles" for two months and refused to get in the bathtub... but overall, I have to be thankful that I have help, because I know I couldn't handle it alone yet. The fatigue alone is incredible.

Yesterday, I slept through most of the day. At night, I was in much pain and even had to take TWO percocets to relax my tense back muscles so I could fall asleep. I'm obsessed that each new pain might be an adhesion or a return of the endo. I wish that I had recorded something after my laparascopy and appendectomy last year, because all I remember was that I hurt for a very, very long time; over two months, maybe closer to three. I can handle anything, as long as it's not a recurrence of the endo. I'm almost out of percocet and wonder if I should ask for a refill; I wonder if I will be granted a refill. Maybe I should just see if the vicodin work. I'm one of the slower healers, I fear.

Saturday night, my DH worked and a friend of mine "Sh" (not to be confused with "S" ) came over and helped and watched the kids. She loooooves babyE and they played in the sandbox and then "Sh" gave her a bath. I told her to leave at 10pm even though DH wouldn't be home until midnight. The kids were asleep, I don't need a babysitter, and I don't want to wear out anyone's good will. I have so many thank you cards to write. I'm completely grateful for any help that I get, while also fearful that the helpers will be resentful or hold a grudge about having to help. I know this is probably silly, but I have such a hard time accepting help. I'm much more comfortable being the helper instead of the helpee.

I also live in constant fear that someday everyone will be exasperated and say, "Enough! Get up and do it yourself!" Of course, no one has given any indication that they would do this; rather, those are the fearful thoughts stemming from my helplessness. I wish that I was a millionaire and could just pay for help, instead of feeling like the charity case of the month. It's a precarious position, to say the least. "Please, could you bring me some jello?" "Please could you bring me some filtered water?" "Please could you pick that up for me?" "Please, please, please." I hate having to ask people for everything! I'm hoping that soon I will be stronger so that I can at least prepare meals. As I mentioned, I braved the Great Staircase today and made lunch for myself & babyE. It felt like a major accomplishment.

Last night, I made it through a two hour movie with the family. I felt it was important after my DS's day to try to maintain some semblance of normality. But, I ached the entire last hour. Is this NORMAL??? Is it NORMAL to hurt when I walk around too much or try to use my arms for normal little things like washing a dish or making a salad? Is it NORMAL to need a nap after a 10 minute shower? Is it NORMAL that if given the choice between my heating pads and my DH, I would choose my heating pads to be my sleeping partner? If this is normal, then I can accept it. It's hard not knowing what to expect from each stage.

Today, I grossed myself out on Pelvicfloor.com. I figured if I had graphics of what had been done, I might better appreciate and respect my body's inquenchable desire for sleep. At first, I looked at the picture of the uterus in the pelvic cavity, surrounded by its friends the ovaries, bowels and bladder, and I thought, "Oh, it looks so small and precious." I felt a twinge of sadness at having lost mine. Then, I switched to an image of the removal of the uterus through the vagina and thought, "That big, stretched out, ugly thing??? Good Riddance!" It looked like a large, deflated balloon made of pink-red rubber. Eeeek! And I know that mine was covered with endo, so at least I am sure that I did the right thing in sacrificing mine.

Since my painful gastric episode last Thursday, things have not been quite back to normal. I've been terrified to take gasX again, yet I'm becoming desperate. I hate the feeling of being constipated; especially when everything is so sore down there. I drink metamucil twice a day, eat about 2 apples per day, plus plenty of other fruit, salad, oat brain, and drink about a gallon of water. What will it take??? Well, I know what it will take. What I mean is, What will it take to have a normal, pain free release?

And now babyE sounds grumpy and needs a nap, as does her mommy.
~ Clementine
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For Gemsab, Moonchime, Anna, floppsy, PraireLakeLady & icare4bunnies 06-13-2004 - 10:24 PM
Thank you from the bottom of my heart!

I cannot even begin to express how surprised and comforted I was by your overflowing support today. I have read each of your comments several times, feeling less alone and so thoroughly understood with each word. What a delightful surprise to turn to this website for support with my surgery, only to discover that it has also healed so much more. I am humbled and awed by the depth of your friendship (for, yes, that's exactly what it is, even though we have never met). Thank you for taking the time to share your stories with me and to lend your kind words.

A hug to each of you:

~ Clementine
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I don't know how to help my son. 06-13-2004 - 02:16 PM
My poor DS is having a very, very bad day, and I feel powerless to do anything to help him. I never have said anything here until now, but he was diagnosed a few months ago with early onset bipolar disorder. He is only ten, but his biological father suffered from the same thing and, without going into my life with him, I am aching for my son to watch him going through this.

He sees a psychiatrist and an art therapist and is on a mood stabilizer, which has gelped GREATLY, but he is still prone to "fits". I cannot describe these fits accurately other than to say they are horrible. He first gets angry and violent and unreasonable... this is followed some time later by miserable weeping puncutated by occasional outbursts. During all of it, he is "not there"; his eyes look like a trapped animal, and he acts like one in the way he strikes out at anyone who tries to help. I have tried everything through these fits... tough love, soft love, leaving him alone. He hasn't had one for awhile, but I saw this one coming all day... in the way he walked around saying he was so sad, in the way he was so quick to lose it... and he is in the midst of a full blown episode right now, with my DH in his room trying to handle it.

My mother told me that she went online and found some great support groups for other parents going through this. I was frazzled with the end of the semester, pain and the surgery before now, but I think this is the time for me to investigate some of these venues. I don't know it anyone knows about this disorder, also commonly called manic depression. In adults, phases of mania or depression can last for several months each. In children, there is something called "rapid cycling" where they have these crazy fits, sometimes several a day.

My DS is a beautiful 10 year old boy and extremely intelligent (another trait of those with the disease). He has wanted to be a veterinarian since the time he was four and he still plans to, with a college picked out and everything. But lately he loses track of that goal and talks about how hard it is to live and how sad he is... even saying that he doesn't want to go to heaven because he doesn't want to live forever, because it is too hard having to "think" all the time. He is very sensitive and tends to think things to death. Sometimes I am upset with myself for mating with a man who I knew had serious problems, and producing this beautiful boy with these internal demons that haunt him. I was so naive to think that he would not have a genetic disposition for the same problems.

DS refuses to have anything to do with his biological father, who has vascillated between being somewhat functional for a few months to being homeless and depressed and abandoning my DS; he frequently displayed alarming teariness and instability in front of my son, which I'm sure was overwhelming to a little boy. They don't even know each other very well since I left him when my son was four, and DS made the decision when he was 7 -- two months after I married my husband -- that he didn't want anything to do with his biological father. He calls my DH "papa" and my husband treats him as his own, but I know that my DS must have anger and memories and feelings about his biological father that he doesn't understand. I know he is terrified that he will grow up to be like his biological father and not like my husband. We try to get him to talk, but another characteristic of my DS is that he has always keeps his emotions locked inside, like a bottle waiting to explode.

To the outside world, my son seems like the ideal child. He is well-behaved, polite, mature, funny, and he loves children and animals. We have friends who ask him to come over just to keep their 3 year old son occupied! He excels in school and is in all the accelerated programs, he is popular and he plays in the school orchestra. At home, he releases all of his pent up feelings (this is a common thing with children who have this disorder). I take comfort in the fact that at least he is doing reasonably well at school and in other arenas, though he has had a few incidents at school this year where we all worried. He has slacked a few times in his responsilities there and a few months ago punched a kid on the playground for calling him names... But when he is feeling level, he is a delightful child. He is helpful and caring and affectionate. He's always been a "mama's" boy and we're very close because of all the years we spent alone.

There are of course all the "famous" people who had this disease (Abraham Lincoln, for one!), and I cling to their names like a cloak of comfort in the storm... My son could turn out to be one of the successful ones instead of one of the tortured ones. Putting him on the medication at a young age has many benefits because he will never get to know the euphoria of a true manic phase (which is seductive to many), and he will hopefully not turn to drugs and alcohol to self medicate (like his biological father). I couldn't save his father and my greatest fear is that I won't be able to save him. It is the worst feeling in the world to watch your child suffer and not know how to help him. I'm sorry to write all about this; it's just one of the things that I need to vent about and explore and come to terms with. I have felt powerless for so long and have not sought counselling for myself over it because we are spending so much for his therapy. Writing has always been my "therapy."

Both my children are having a hard time today with my being in bed and tired. As I said, DS walked around sad all day until the episode, I think largely because he misses me. And babyE is crying a lot and glued to my side; she won't leave and wants to nurse every hour (which is ridiculous for a 2 year old... we usually nurse only at nap times). This is the hardest part of my recuperation. I can handle the laying in bed, the pain, the tiredness... but watching how it affects my children is very, very hard.

Moonchime, you wrote about your granddaughter's problems and I have wanted to respond for so long. I UNDERSTAND. And I know that you are hesitant to put her on medication, but sometimes, in special circumstances, medicine can make a world of difference (think of us, with our hysterectomies). I have a cousin who has suffered with agoraphobia (hers developed in her early twenties) and she is finally doing okay after a few years of medication and therapy. My son, who had progressed to having several episodes a day at times, now only has one every few weeks (we are still in the process of finding the right medication and dose). I know that my son was very relieved to begin medication because he just wanted to feel better. Be an advocate for her health. It has taken us a year and a half to find the right help for our DS, but we finally did and, even though the progress is slow, there is progress.

I also want to thank Moonchime, Anna, icare4bunnies, and PraireLakeLady for all of your absolutely wonderful and caring comments about my course evaluations. Your comments have greatly assuaged my sadness and today I am able to look at the whole situation with a much calmer disposition. It's unbelievable how close I feel to all of you, whom I have never even met, just through the sharing of our toughts and lives in these journals. You ladies are dear to my heart.
s to all of you and God bless your hearts for your kindness.

With love, Clementine
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Questioning My Career 06-12-2004 - 06:27 PM
Today in the mail I got the copies of the course evaluation sheets that my students filled out. I feel so upset right now I don't even know what to do. I taught two classes in the Spring: one honors section and one regular section. I loved both of my classes and thought that everything went exceptionally well. All semester I fought my disease, and I had to try extra hard not to take out my pain on the class; I thought I did fairly well. I made sure I was on my medication during class so I wouldn't hurt. I loved my students, especially the ones in the regular class.

The course I taught was an art class for non majors. I have taught a similar class at the University of Arizona and also at a community college in Illinois which were both much much harder and more involved (with textbooks, 3 tests & a final, plus art projects). This class had no textbooks, but I required about 10 hours per project (there were 5 projects for the semester: one in drawing, painting, printmaking, ceramics & weaving). The final project was to make a book (I taught them how) demonstrating their knowledge in each of these media. I designed it to be fun, but I had expectations that the students be in class every time (or bring a doctor's note) and that they do the work (I counted effort and participation as much as talent since, after all, they are non majors). I taught in the "all glass" classroom so all the other profs & the head of the dept and other students were constantly passing by and the feedback was incredible. I had other students not in my class complain to the head of the dept. because they weren't learning some of the things I taught during my class. I have worked very hard during my career to become a good teacher. I have designed ways to teach people who never thought they could draw to draw. The outcome this semester was particularly AMAZING. One of the best ever.

So I was incredibly surprised by the course evaluations done by my honors students. 6 out of 16 students said I was not only a poor instructor, but very poor. They scribbled hateful comments on the backs of their forms about how I expected too much and how a 100 level course shouldn't be so hard, and they took the class so it would be an easy A. They said I was too hard, always late (I WAS a few minutes late many times). And they wrote stupid things too. One student wrote that it was wrong for me to require a doctor's note, saying "What if I had to get an abortion?" And another said that he spent more money on art supplies for my class than he did on drinking for the semester, and he used to go to AA. These comments were so horrid that I don't even know if I can teach at this school again. And I was just offered a 2 year Asst. Professorship there! I had many students say they put in more work for my class than any other, blah, blah, blah. More work than a microbiology class? What kind of teachers do they have?

And to think that I thought they were PROUD of their work. To think I thought they LIKED me. I don't understand. This is a state university; of course there are expectations. I'm getting the feeling that this is a bit of a blow off school. I had some students tell me privately that they were glad that I had standards and didn't let the students walk all over me, but apparently they were in the minority. On a brighter side, my regular class said very nice things. 88% of 24 students said I was very good or excellent as an instructor. But even some of them complained that I am too hard. I don't get it. I went to college. I took classes. I don't expect any more from my students than I was asked to do. Have things changed that much in 10 years? Should their classes be a "blow off" or more easy when in the end they might achieve the same degree? Aren't there standards anymore? Has college become the new high school?

My DH told me not to be upset. He's an educator too and said it's not me; he said they were probably worried about their grades and venting (they all ended up getting great grades in that class because they earned them!). He said he's noticed the same arrogance with students not wanting to work for their grades. I have students who think that just because they pay tuition that they should get a passing grade; as if that's enough! I feel so utterly and completely disillusioned. DH said that one of the reasons the college probably wanted me full time is to try to raise the standards, but I don't know...

The ironic thing is that I've always had phenomenal evaluations at every other place I've taught... high school or college. The one thing I could always feel good about in my life was that I was a good teacher and my students liked me. I took so much personal pride and satisfaction in that. Now I don't know anymore. I feel like I was such a fool, walking into that classroom every day, thinking they liked me and were enjoying the class, when the whole time they were in cahoots about how much they despised me and thought I was unfair. I LIKED them, and the whole time they were talking about me.

This is such awful timing. I've been doing so well with this recovery, so well with my mood, looking forward to my new job this fall, but this has really winded me. I feel like I got socked in the stomach. 75% of my students in the honors class thought I was fair or worse as a teacher; how can I ignore THAT? And they were the students who I thought would be the exceptional learners, giving 110% in everything.

I'm sorry to vent here. I'm trying to keep it in perspective and listen to DH, who says they are just spoiled kids venting because I made them work for their grades. I wish you could see the beautiful work they created because that makes it even harder for me to understand. If I had a teacher who inspired me to create things I didn't even know I could, I would be thanking that teacher, not spitting venom at them. And they DID thank me. I had private critiques with each student at the end of the semester where we reviewed all their work, and each and every one acted like they liked me and the class and were happy they took it (this was just 2 weeks after they wrote the evaluations).

I wish my DH was here to give me a hug, but he's working until midnight so I have to wait. I don't want to be crying right now. I want to celebrate my recovery and feel good. ~ Clementine
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Advice from my friend, the Healer 06-12-2004 - 10:40 AM
I just put up the following on the Post Op forum, so excuse any redundancies. The following information was so helpful to me that I want it recorded in my permanent journal.

I just got off the phone with a very dear friend of mine who is a natural Healer. She is studying for her pharmacy degree, but has long been knowledgeable in homeopathic medicine as well. I always call her when I have a health question and she is always able to soothingly offer advice and explanations for why things are the way they are...

Anyhow, my wonderful friend explained some things to me that I didn't understand about surgery & anesthesia and the healing process. Some of you may already know this, but I didn't, and having this newfound information is such a relief to me that I wanted to share it with my Hystersisters.

When the anesthesiologist puts us under, essentially what happens is that all of the nerve endings stop sending signals to one another. Because of this, our brain doesn't automatically understand what has happened at the surgical site. The bowels, which under normal circumstances are constantly chugging, are also temporarily unaware of what is happening. The bladder is not able to utilize the muscles that enable urination, which is why a catheter is necessary. All of the nerve endings are reconnected again after surgery, and need to send the proper signals to the muscles and organs to ensure that they do their jobs properly and in coordination with one another. This is the reason why all the nurses and doctors are so obsessed with whether or not we are "making gas" and urinating after surgery. This is also one of the reasons why gas is painful and BMs can be excruciating (other reasons might be because the bowels were operated on, moved, or, in a laprascopic surgery, gasses are pumped into the abdomen).

As we recover, our bodies not only have to internally heal from all of the sutures, stitches and surgical procedures, but the surrounding organs need to begin their normal processes again in a new environment (things are now missing or are "changed" and are swollen because of that). The bowels need to rev up again and the bladder is irritated from the use of the catheter (and possibly being moved during surgery). This takes TIME. This is why our doctors tell us a minimum of 6-8 weeks recovery, and even longer to feel completely up to par.

All these reasons are why we need to be especially kind to ourselves during our time of healing. We need to be gentle and not push ourselves beyond our capabilities or expect to feel better right away (or, even if we do feel better right away, why we need to make sure we continue to take it easy). We not only need to drink plenty of fluids, but we need to eat healthy foods. Diet, age, weight and general health will all affect our recovery. My DH pointed out to me yesterday that as long as I am on pain medication I cannot accurately listen to my body's signals (of course we will feel better with pain medication). When our bodies need no pain medication to get through the day is when we know that we can trust what we are feeling.

My dear friend also recommended several things to help soothe the digestive process, naturally and gently. Some of these are as follows:

1. drinking several cups of hot decaffeinated or herbal tea a day (the warmth helps stimulate the bowels)

2. drinking several glasses of water per day

3. eating a salad a few times a day (lettuce has benefits even apples don't have)

4. using different homeopathic remedies to aid your recovery (this of course should be discussed with your doctor, but, generally speaking, I've never had a doctor object to my use of homeopathy and I have had several doctors encourage it). The ones my friend recommended to me are arnica montana, and staphysagria (not to be taken together). She also recommended something called Liquid Liver by Enzymatic Therapy.


Some other things that have helped me are eating soft foods (I love jello), eating a few apples a day (I slice them up without the skins and sprinkle a little cinnamon sugar on them), eating high fiber foods like hot oat bran, and drinking metamucil once or twice a day (I personally found gas pills to be too invasive and painful). I also try to avoid foods that are high in fat, as these are harder to digest, though I do indulge in the occasional cupcake and toaster strudel .

All of this information helped me understand the healing process more fully. I hope that someone else might glean a bit of knowledge that is useful to them as well.

Good luck to all my Hystersisters, and may you have a happy, healthy recovery!

s ~ Clementine

P.S. Where is everybody today? Is everyone out enjoying the beautiful weather while I lay abed?
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I Can Handle This 06-12-2004 - 08:17 AM
One of my DH's best friends came over this morning with breakfast for all. He lives in NYC but is in town for a few days (normally, he would stay with us but is staying with other friends this time because of my surgery). Anyhow, he brought a dish of goodies up to the room. I was totally unprepared... uncombed hair, braless with thin white t-shirt, glasses on, slouched in bed (I'll have to talk to DH about making sure I'm PREPARED for visitors in the future!).

Anyhow, we got to talking, and it is so nice to see him, and he went to a special florist yesterday and brought over a beautiful flower arrangement. He is very thoughtful like that. I asked if he and his wife are thinking about having another baby and he said they're pregnant... didn't my DH tell me? Nooooo he didn't. I am genuinely happy for them.. They have one little boy and now are expecting a little brother for him. And yet...

I don't want to go there. Take a deep breath. Count my blessings. We thoroughly talked this over before the surgery and decided we didn't want anymore. I'm so lucky for all that I have. I'm so happy for our friends. I guess I just thought I'd have a few months at least before friends were getting pregnant again (silly, I know). Will I feel this twinge of sadness every time a friend conceives, or will it go away with time?

~Clementine
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Better Now (thank you, Anna & Sassy) 06-11-2004 - 09:59 PM
I felt so guilty for my self-pitying rampage in the prior entry... I logged on and found soothing, reassuring comments from Anna and Sassy.... Thank you, Anna & Sassy, and every other Sister who has come to my aid during a bad moment, or who has laughed with me during a good one. You are my living Angels

I am feeling better now. The kids are asleep, DH is home and I am snuggled in my bed, which is my favorite place to be right now. Heating pad on my front; heating pad on my back. Water and strawberry jello to the left and right and my computer in front of me on my rented hospital table that tilts (how convenient! I want to keep this thing forever!).

This simply has NOT been a good health day. I can feel the fatigue of my body, aching for sleep to aid my healing. Anna (Copswife123) had it right when she said that there is no one to blame for me being left alone... it is just a learning experience. Now we know not to do it again for awhile. I hadn't considered the fact that I might need to be in charge of diapers or emergency baths or other catastrophes. It is a lot easier to be helpless when you have a strong support group... tonight, when that was missing, I was overwhelmed at my defenselessness. My poor DS... he was awesome, running around, helping me and babyE. He really deserves a treat for how maturely he handled this whole thing. I couldn't praise or hug him enough tonight. He was my savior.

I'm currently reading a book titled Follow the River by James Alexander Thom. It is the true story of a woman named Mary Ingles, whose Virginia settlement was massacred in 1755. She was taken as a prisoner of the Shawnee, along with her two young sons, her sister-in-law (whose own baby son was cruelly tortured and murdered in front of her), and another man. This woman was 9 months pregnant when she was kidnapped and had to give birth on the trail with no water or sheets to clean up the blood. The next day she was put on a horse and forced to ride... As I read this book, I feel so fortunate to live in the world we live in today. The stories of our ancestors and other people who came here before us are those of incredibly brave and strong people. I thought of this woman, after I was done complaining about my own misfortunes, and felt a little silly for my pity party. I only had four hours alone; I had a wonderful boy to help me, and all the modern conveniences to be able to get the job done. It really helps me keep things in perspective when I read accounts like that of Mary Ingles (and when I get positive reinforcement from my Sisters, in spite of my moments of weakness!).

I have decided that I am going to be very very very good and rest while I can. I don't want to hinder my progress by overdoing it. I want to heal up correctly and completely. My DH pointed out to me today that it is impossible to "listen to your body" when you are on percocet and motrin. OF COURSE I'm going to feel fine when I'm on drugs to mask the pain. When I can get through a day with no pills and still feel fine, then I will know it is time to be more adventurous and active. Until then, I'm taking it easy!

I went downstairs tonight and laid on the couch while the kids played around me. It was lovely being down there with the TV and the Tivo. I have so many shows that I have taped that I can watch; and babyE was so excited to have me down there. Her two year old mind doesn't understand why I stay in my bedroom most of the time. She gets upset and angry with me, saying, "Come on, Mama, get up!" She doesn't understand and I feel so sorry for her. Just being downstairs for awhile tonight was a good thing for her. She brought her puzzles up to me and snuggled on the couch. It will probably be easier for her if I spend more time downstairs instead of always hiding away in my room. I can rest just as well down there as I can up here.

I'm growing soooo tired. It's time for me to sleep again. Thank you again to everyone who cares. Thanks for picking me up, brushing me off, and giving me s ~ Clementine
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Abandoned! 06-11-2004 - 05:56 PM
Today is one week since my Castle visit. I have been exhausted all day. I think I overdid it yesterday... I had to write a letter for work and it exhausted me having to think mentally; not to mention the fact that I walked around doing too much... I ached all night long and today I am still very sore and very tired and very weepy. It was so nice those first few days feeling calm, but today I just want to cry cry cry

Tonight my DH had to work for four hours. He not only did not arrange to have anyone come help with the kids, but he did not leave dinner for anyone! I don't mean to complain about him because he is generally very very good and this is out of character for him. To his credit, a few days ago when we realized this would be coming up I thought I'd be able to handle a few hours. I can't. Oh, I can't. I just want to cry cry cry

I slept all afternoon and was zonked out with babyE when he left.... I awoke hungry and alone and with Baby E and DS to take care of. Fortunately, my friend "S" called and quickly came by with dinner for everyone. Before she arrived, I had to change a poopy diaper and I felt like I pulled something in my abdomen; it hurt so bad. I can't even lift my own tiny daughter (she's only 22 pounds). It's so frustrating and I feel so helpless. It was so nice of "S" to come by and help... I owe her big time for this...

Anyhow, not realizing that babyE is not good with cups, "S" left her with a cup of chocolate milk... so the next thing I know babyE is crawling into bed with me soaked and stickly in chocolate milk. I had to have DS help me get her into the bath and I am so tired right now I can't even believe it. I can't even manage something simple like a bath. I feel utterly and completely abandoned. I still have 1 1/2 hours to go and I am feeling so overwhelmed and upset with DH for leaving me like this. I just want to cry cry cry..... I'm so sorry to whine. I just needed to vent so I can pull myself together and try to take care of these poor children.

Frazzled... Clementine
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My Dream 06-11-2004 - 01:24 AM
I just woke from such a beautiful dream, that I had to replay it in my head as soon as I awoke. I thought to myself that I should jot it down and then realized that I could type it much more quickly than I could write. Since I'm hurting and need to eat some crackers before I can take my pain meds, I took the time to record it for my future analysis. It's so exciting to have dreams again!

I dreamed that I was going to a potluck dinner with some friends. On the way there, somehow, I was afraid of something, so I began to ran. I ran so fast, without paying attention to where I was going, and suddenly I was airborne. I fell through the air, and before I knew it I had crashed through the water of a lake and then I was swimming, laughing because I was safe.

The next thing I knew I was at my friend’s charming little home. This was a new friend; someone I had never met before, but I liked her enormously. There were two other women attending this dinner and we each helped ourselves to the dishes brought (I don’t recall if I brought a dish, but think I did). I realized that each of us had brought something different to the dinner. Because I had arrived late, I spooned food onto my dish and heated it up in the microwave. While I was doing this, the other three women were laughing and having a fantastic time. They easily included me in their banter and we joked. I teased them that they had left me only a few tablespoons from the ice cream carton and we all had a good laugh because just moments before we had said there was plenty for everyone. The mood was jovial and no one really cared that there wasn’t enough ice cream.

Flash forward and suddenly we were all outside around a campfire, snuggled beneath blankets and talking. More friends joined us (again, new people but people whom I liked). My new friend (the hostess of the party) rented a beautiful brick house with a brick courtyard that had a little playground on it (just a slide, I think, and a free standing bell that could be rung with the pull of a rope), and was secluded by a partial brick wall; this wall was not solid, but more of a wind and privacy barrier and less for actual protection. It was very clean and well taken care of, with overflowing flower beds and grass. I overheard my friend the hostess telling someone how children often visited the playground, sometimes having picnics of their own, and she loved sharing the courtyard with them, even though she had no children of her own.

I left to go to the bathroom somewhere in the darkness beyond the party. As I left, I felt slightly afraid, realizing that I was alone in the night. I also recognized that I was in a place that was near a string of cottages where another friend of mine lived and where I myself had once lived long ago. I thought to myself how wonderful the whole evening had been. What a simple idea for each person to bring a single plate and share a complete meal. I thought that this was something I too could do, even though I was now a mother and not a single person anymore. My friends could bring their children and we could have a merry time.

I finished my business behind the bushes and began to walk back to the party. As I did, I was aware of someone else running near me, but along a perpendicular path in the darkness, and it occured to me that I should possibly be afraid, even though I hadn’t been just a moment before, and even though the person was running near me, but not towards me. I began to run very fast, and as I was running I heard the other runner laugh to himself that he had just beat his own record. I thought what a relief to know he had only been running a race against himself, when, suddenly, my feet left the ground for the second time that evening and I went plummeting over a hedge and crashing through a lake. I again laughed when I realized what had happened and that I was again safe; I just had to swim back up to the surface of the water. As I laughed and swam I realized that I liked the sensation of having that thrill of fear only to realize that I was safe. I felt like a child and thought that maybe I should try to do more childlike things in the future.

Sleepily, ~ Clementine
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I Love My Babysitter 06-10-2004 - 07:59 PM
Tonight, my babysitter is watching the kids while DH is working. I my Babysitter! She is the most mature, articulate, hard working, funny, thoughtful babysitter in the whole entire world. I found her last fall when I started teaching at the college; she answered the post I had for someone to watch babyE while I was in class (about 7 hours a week). She would pick babyE up at my office and drop her off afterwards; they would have all kinds of fun together on campus. She is 24 and took two years off from college to serve at Ground Zero, so her wisdom far transcends her years. She graduated this May but got a job in the area and-- best yet-- is able to help out these next few weeks. She will come help all next week during the day. (Right now I'm hearing DH's harried voice after a full day watching the kids yesterday saying, "I'll pay! I'll pay!" )

Anyhow, it is simply wonderful to have her here. She's a take charge kind of person, so in a way I can now relax more fully than I could with either my mom or DH in charge (mom is newly retired and becomes exhausted and DH is a man and gets frazzled). And, after a year together, I consider her a friend too. BabyE loooooooves her; they fingerpaint, go for long walks, color, and share a fascination with "Strawberry Shortcake." Living so far away from extended family, our babysitter is like an aunt to her.

Well, tonight I am weary, sore, exhausted and in terrible PAIN! I tried something different today with my normal regime: because I heard that Citrucel causes less gas than Metamucil, I had a glass of that instead. I chased it with a GasX, thinking surely this would help things along even more nicely (I've been averaging about one BM a day that is relatively painless). Well, this evening I became sick to my stomach. I broke out in a sweat accompanied by shaking chills. Then, the stomach cramps started. I could not believe how excruciating they were... it truly was akin to my labor pains. They started with waves of cramps all through my abdomen and pelvis and finally, after about an hour, I was able to relieve myself, but I thought I might die during the process. It was one of the most horrible experiences of my life. Shortly after, the entire process was repeated, although this time it was not as painful.

I have been okay for over an hour now, but I still feel fairly nauseated (passed on dinner and had strawberry jello and toast instead). I am craving water and have a dull headache. In a way, it feels good to be cleaned out, but at what a price! I don't know if this was a one time catch-up thing, or if I should nix the Citrucel and GasX completely and stick with the tried and true Metamucil. I mean, I don't want to be a masochist. But maybe this whole thing would have happened anyway, so I don't want to make quick accusations as to the source of my pain. I'll ask DH what he thinks later tonight. And I'd been doing so well too

The feeling in my pelvis is so heavy that I have an intense pressure on my perineum. It feels like things might fall out if I don't hold myself between my legs. I've also had some trouble going to the bathroom sometimes... takes a while to coax everything out. I'm having DH drop off a urine sample tomorrow with the Dr. just to make sure everything is okay, but I'm assuming it's just some "trauma" stuff from the surgery and catheter (and having interstitial cystitis too I suppose). I posted a thread today and got some reassuring responses that this seems to be pretty normal stuff for one week post op. Phew! I love this site sooooo much! I know I've said it before, but I really don't know what I would do right now without my Hystersisters.

Goodnight, Hystersisters! Sweet dreams ~ Clementine

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Life's Teachers 06-10-2004 - 09:51 AM
This morning is so beautiful... It rained all night and we slept with the door to the sleeping porch open, so the cool, misty air billowed in and smelled heavenly. Today is in the 60s and cloudy: a perfect day for sleeping and reading and generally lounging around. I've noticed that the house is beginning to look lived in again. I shuffle around with my "grabber", picking things up off the floor. Yesterday, after going to the bathroom, I lowered myself to the ground and wiped the floor all around me with some wet wipes (it's a small floor). Maybe I should ask my DH how he would feel about hiring a cleaning service once or twice during my recovery. I don't mean to be obsessive compulsive about the cleanliness thing, I just am. As heavenly as it is to have others bring me food and help with the house, I guess I'm a control freak because I have my own way of doing things and it's weird to have them done otherwise. For instance, DH brought me a bowl of warm oat bran this morning and a cut up apple sprinkled with my special cinnamon sugar. SUCH a thoughtful gesture... I praised and thanked, but the truth was the oat bran had too much sugar and the apple slices were thicker than I prefer... oh no! I really am turning into a Pampered Princess

It's so nice for babyE to spend this time with her papa. He just smoothed her hair into a ponytail and of course half the strands are still hanging down. They are going "shopping" today and she is soooooo excited. DS had a special field trip today to Fort Niagara and left early this morning, scrubbed and eager. My plans for the day are to shower and maybe-- if I'm lucky-- have a BM. Ah, the simple pleasures.

The very weird thing is that I sort of feel like I did after I had babyE. Those months after her birth were the best of my life (except for my summer study in Greece, but that seems like a lifetime ago). I feel calm and wise and appreciative of all that I have. I wonder if this is a hormone thing. I did keep the right ovary and I know it's working since I am still lactating. Or maybe it's because that horrid endo pain is gone (and with it the progesterone pills) and my body is relieved to be out from under that fog of anger.

At any rate, I'm finding it easier to be kind and more appreciate of every nuance. My DH has never been the kind of overly romantic, running-the-wife-a-bubble-bath- and-bringing-her-warmed-towel-from-the-dryer kind of husband (I've heard they exist... no, really!). But he does little things all the time that make my heart soar. Things like brush the snow off my car in the winter. Last night he set his alarm for 2am so he could wake to give me a pain pill (he didn't want a repeat of the night before). I find that so incredibly romantic. Maybe it's because I lived the alternative for so long; single mom, struggling to keep food on the table, dating (and discarding) men who wanted me but not my son, being lonely and having no one to share life's battles with. I have been there. I filled a CD with songs about that period of my life. But, like this surgery, that period made me stronger and, maybe even more importantly, more appreciative of the little things.

Now, lest you think I am all sweetness and goodness, I have to confess that I'm feeling very hurt about the actions of a friend. I'm not sure how I will deal with this. My DH and I are friends with her and her DH (our husbands are work colleagues) and we've been friends for just over three years. DH and I have had her & her young son over for her birthday two years in a row because her husband was out of town. Two years in a row she has completely forgotten my birthday, even after being reminded a few days before. I didn't have expectations... well, I guess I did, because I expected a phone call or a happy birthday. Then the surgery came up. I phoned a few times to tell her, but no one was home (they often travel). Last year when I had my lap it was the same story. Other friends called and cooked my family dinner and I never heard from "B." Yet I always have to hear stories about her best friend in her old town and how that poor woman has suffered through infertility and fibroids. "B" doesn't seem to understand that endo is a painful disease too.

The surgery came and went and finally "B"'s husband returned home and, being a very kind man, expressed his warm wishes. "B" is still out of town (visiting her real friends), but her husband, "C," is back with his mother (she is watching their young son while he works). "C" drove over immediately when he heard about the surgery, bringing a simple and perfect vase of flowers from their garden that his mother put together. He left word that "B" will call when she returns. I feel so hurt by this. I mean, we are not living in the pony express days here; this woman has a cell phone! Is it too much to call a supposed good friend and wish her well?

I have felt exasperated about the whole friendship; ready to wash my hands of it (which of course will never be completely possible because of our husbands' connection). And then my mother piped up about how everyone we meet in life is here to teach us something and what can I learn from this. I told her I can learn not to be a friend to someone who is not a friend in return, and she responded with, "turn the other cheek." My mother pointed out that "B" had an unhappy childhood with an unhealthy mother and does not know how to behave with the proper etiquette. But is that still a valid excuse for being a lousy friend when you are a grown woman of 40? At what point do we take responsibility for our own actions?

I still don't know how I will resolve this issue. It wouldn't be a problem except that I thought our friendship went deeper than this. I have certainly given more to her than I do to most of my other acquaintances, which is how I feel she has been treating me; as a mere acquaintance. I do have other wonderful friends who have surprised and touched me with their thoughtfulness and generosity... phone calls, prepared meals dropped off, babysitting favors. I know it seems so petty to obsess over "B" when I have so many blessings (I mean, why do I care?). I just needed to get this off my chest. Maybe now I will be able to let it go. Sorry for whining.

And now, I need a shower! I can't stand being in this dirty body for one more minute! Showers cure all ills

~Clementine
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Mr. Mom 06-09-2004 - 06:51 PM
Today was my DH's first day without the help of my mother. It is so amusing to watch him scurrying about, frazzled, doing all those normal things I do daily. At one point he said, "I feel like I'm on one of those Oprah shows where the husband has to do everything the wife does. You deserve a medal!" He cannot believe how exhausting a two year old can be, or how tiring it is to run around to lessons and school and doctor functions. DH and I have a very traditional relationship and it is no secret that I do most of the wifely, mothering things. This is fine with me; I accept my man as he is and enjoy our relationship immensely. And after this experience I don't think I'll ever hear another comment about how I have the life of Reilly

Today I am soooo sleepy and sore. I woke this morning after a 6 hour sleep and was in so much pain I couldn't move; all the pain killers had worn off. DH brought me my pills and a small glass or milk with crackers (which tasted like manna from heaven) and within an hour I felt much better. But today has been a slow one for me. I'm not surprised or complaining or depressed. It is what it is. I have no expectations from myself during this period of healing, which is very liberating. This is the only time in my life that I have held no expectations of myself. I do not feel that I have to exercise or write anything. I'm happy to go at my body's pace. In fact, it feels almost retreat-like to be able to relax. The journey I've had these past two years that brought me here has been physically exhausting and spiritually numbing. I'm finding that I enjoy just laying and thinking and existing. With the removal of my uterus I also felt a removal of all the anger I felt welling up in my soul; caused, I suppose, from the pain. Now I feel calm and peaceful and very hopeful. All the pain and stress that led up to the surgery are in the past and now I can finally look forward to the future.

I had a dream this afternoon (I rarely dream, so it's always exciting when I do). I dreamt that I discovered we had more rooms in our house than I had realized. There was an extra room upstairs that I thought would be perfect for a playroom. Downstairs, there was another room too that I thought would be perfect for a family room. I couldn't believe why I never opened the doors to these rooms before and excitement filled me. I wanted to move furniture and clean them, but was too tired and needed my DH to help me... This dream feels like a metaphor for my life right now. There are so many avenues of my personality that I have yet to unravel, that I have now discovered because I am released from the opression of my pain, but I am not quite healed enough to do it yet. I can wait. It's something to look forward to.

I made two trips downstairs today. We live in a Dutch colonial, enchanted little cottage: three bedrooms upstairs, kitchen, living room and dining room on the first floor, and a finished basement (music room & laundry) that you enter from the driveway because it is built into an ivy-covered hill. Our bedroom runs the length of the house and has a fireplace for cozy fires in winter and a screened in sleeping porch to let in the cool, summer breezes. It is comfortable and snug. But I've missed the first floor. It was nice being down there, looking at all the happy, potted plants I frantically arranged on our back deck the night before my Castle visit. (In retrospect, I'm happy that I cleaned and cleaned and planted because now I feel sort of like I'm on a spa vacation ). But I grew tired of being downstairs for long. My pelvis feels swollen and sensitive today and my vagina especially feels very heavy (maybe this is normal since he removed my uterus and ovary through there; or maybe it's normal for all women because everything is swollen from surgery). I'm not quite ready for the downstairs yet (or the staircase that leads me there!). For now I am happy to be up in my haven.

I have babyE to put to bed. It has been soothing nursing her and snuggling while I recover. Since my mother's departure, she has resumed her duty of being a mama's girl and she wants to eat from my plate on my portable hospital table and bring me books to read to her all day long. It takes extra energy, but I so enjoy her company. I feel so blessed to have her.

There is a winter storm brewing outside and the air smells fresh and crisp. I love storms and the feel of the cool air they bring against my skin. I love today. (Do I sound like I'm on drugs, or what? )

~La (Clementine)
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My Safe Haven 06-08-2004 - 07:05 PM
Today has not been so great for pain... it seems like yesterday I was doing better and today everything feels achy and sore. I wonder if this is normal. My bladder seems to be acting up a little too. I don't know if it's a result of the catheter or the interstitial cystitis, or the fact that my Dr. once again had to remove endo from near my ureter, but it is not always easy to urinate. It seems to take longer to get everything out.

I want to get to feeling better so I can get off this percocet. I don't like it. It makes me sort of dizzy and sleepy and dysfunctional. Of course, everything is always worse at night too, and it is night now. Almost time for the kids to go to bed.

My mother went home today. I ached having her leave, as her presence was not only a great help, but a great comfort. BabyE took to her immediately and was even telling me "go to sleep, mama" sometimes when she wanted to be alone with her! My mother is totally into kids-- a get-down-on-the-floor-and-play with them kind of Gramma. She does it all: finger rhymes, songs, reading books, playing dollhouse... babyE was enchanted. For me too, having her chicken soup and potato salad served up on a tray every day soothed me with its ritual and tradition. DH is on shift now for the next few days, and he is not nearly as maternal . Today he told me how sexy I look and how it's hard to believe I had this major surgery since I look so good on the outside. Now, some might have been irked at their DHs for making sexual remarks while they are so recently wounded, but it felt marvelous to me knowing that he still finds me attractive... takes care of those doubts! I think that the uterus=feminity feeling is a woman thing. I think that for men as long as there is a vagina, you are a woman . Sorry, didn't mean to be crude.

I dont' know what I would do right now if it weren't for Hystersisters. This is my sanctuary. I've rarely watched TV and have not even begun a novel since my surgery. I just sleep, visit, read to babyE and do Hystersisters. Here I find a safe haven where everyone is kind and everyone understands. I have to admit that yesterday I was not sure what my new role was here. I burst into the scene as a LIW and before I knew it had 7 days to prepare for an unexpected Castle visit. Now, I am unable to post new topics in the Pre Op and I feel like all of my old friends are still in high school, while I have gone on into the real world. They don't yet understand my new world, and I don't yet have new friends in this new place. I posted a thread about Castle tips intending to answer some questions I knew my fellow LIWs had, and it got moved to Post Op. I still don't understand that completely, but I certainly don't mean to criticize this site in anyway since I don't wish to be exiled from my utopia , so I'm sure there is a good reason. Anyhow, I mentioned being in a maternity ward and how some people might not feel comfortable with this and should be prepared (I personally vascillated from being fine with it at first to being sad later as it reminded me where I was 2 years ago and will never be again; a premature loss). There were thread after thread of people saying how much they LOVED the maternity ward and I felt so lonely and misunderstood and--hey--big surprise after a surgery like this-- HORMONAL!!! My new friends don't get me. They don't feel the same way I do!!! I was, of course, being silly.

Today was a new day with my hystersisters and I explored new avenues I didn't have the time to when I was a frantic LIW. I e-mailed and pm'd some old friends and new. This place takes such a burden off the rest of my friends, many whom have wonderful intentions but don't understand. When I have a question or concern it is my hystersisters I turn to.

God Bless the Hystersisters! ~ Clementine
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Baby Blues... my aching womb... 06-07-2004 - 09:43 PM
I'm sitting propped up with a heating pad on my back and one on my front, waiting for the pain medication to kick in... I missed my dose of motrin at 9pm and then it was time for a new percocet and I am in A-G-O-N-Y! I know it will be a matter of time... they will work... and I had been feeling so GOOD too. Foolishly good, like thinking maybe I don't need to be taking these pain meds anymore, ha!

Of course, I'm only three days post-op and I need to be a little easier on myself. In some ways I feel so much better than I have in months. My mood is DEFINITELY better. I think this is because I kept an ovary and am finally OFF all that horrid progesterone. I have read from so many Sisters who are in pain today and I ache for them all; I know how hard that is. This pain feels different to me. It doesn't feel like my old endo pain; it feels like surgery pain. Like I have been cut up and stitched together... And yet I am soooo fearful that the endo pain will still be there; that it is masked by the percocet or the surgery pain and that in a few months I will realize I'm right back where I started. I don't allow these fears to entertain me too much, but I need to acknowledge that they are there.

I feel sad when I look at the world around me. Young people my age getting married and pregnant. I feel like I have unwillingly been thrust into crone-hood before I had lived the requisite amount of years. I don't quite know any other way to put it. One moment I am okay with the absence of my womb. I certainly FEEL better physically, and that in itself is amazing. And I have been blessed-- truly, wonderfully blessed-- with my DS and my DD, babyE. I have a great husband (type A, workaholic, but great when he's here; and thoughtful when he's not). And we didn't plan to have any more children. Well, I would have liked to emotionally, but it wasn't in the financial or life plan. We have two, I've been offered the dream job with terrific hours that enable me to be practically a full-time mom, DH is 47, I'm 37, etc., etc.

There's just something about no longer being physically able to conceive that still makes me sad. Maybe it's because this is still new. Maybe it's because I have nothing to do but lie in this bed (or walk around it), and I have too much time to think. Maybe it's because the maternity ward reminded me of when babyE was born and it's unbelievable to think that 2 years ago that was me and now THIS is me. I have faith that this pain will indeed be over. If it is, I think that I will be able to deal with this baby thing more easily in the future.

Why is there some part of me that still feels my ABILITY to conceive makes me attractive to the opposite sex (or not attractive, as the case might be)? Why do I care? I have a DH who is my soulmate and I don't want another! A colleague of my husband's sent me a small flower arrangement in hospital. He is a nice man who is (not happily) single. DH and I have encouraged him and counseled him a time or two in the past, but we are not great friends, so it was an extra special surprise that he thought enough of me to send this arrangement. Am I a terrible person because it made my heart leap a little to think-- hey, here's a man besides my DH who likes me even without the uterus?

Forcing my thoughts to the more positive... I am so lucky to have babyE waiting at home for me to aid my recovery. I found myself yesterday fearing that she might die (I know this is not positive!)... is this normal??? She and DS are all I have and now all I ever WILL have and somehow that makes them not any less precious, but more rare. BabyE has accepted that I am home again now and she is not angry with me anymore. Tonight she curled up beside me and I nursed her to sleep and then DS crawled into bed to snuggle with us. These are the moments I choose to cherish, for these are the ones that are real.

~ Clementine



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Home from the Castle 06-07-2004 - 12:10 PM
It is over! I survived! I didn't die and there weren't any horrible complications. In fact, everything was smooth sailing. When I first arrived at the hospital, the nurse in pre-op was a bit snippy with me, which brought on a bout of crying. When she realized I was crying, and then realized what I was in for, she suddenly became very nice... She told me that Dr. Expert's patients have usually been through quite a bit before they get to him, and that I must have been through a lot, "poor thing." She gave me tissues and numbed my hand with a novicaine prick before inserting the IV and told me that Dr. Expert is the best; that he has patients fly in from NYC and other places. It went a long way towards soothing my fears.

Dr. Expert came in before the surgery and I expressed my reservations about losing an ovary. He was much more relaxed than he had been at our pre-op on Tuesday. He told me that he had been thinking that my right ovary had endo, but that it had, in fact, only had a non-endo cyst last year. He said that if it looked okay he would leave it. He said that there would be about a 35% chance of recurrence, but that it wouldn't be immediate (if at all) and that I could hopefully get some more years out of it. Since I am young, and since my father died of a heart attack at age 50, he said the more use I could get out of it the better off I would be. I told him that I trusted his expertise and would leave the decision in his hands.

One of the anesthesiologists came to get me. He told me that it was like we were going to the prom and he was my escort. He led me from the pre-op room to the surgery and informed me that he had “slipped a little something” into my IV before we left the room (I thought, but didn’t say, that this was a very presumptious thing for a prom date to do). My feet got heavier and I got dizzier, and he almost had a passed out prom date! They laid me down on a very uncomfortable table, placed a squishy mask over my head that smelled like a new shower curtain, and the next thing I knew I was waking up and aware of being wheeled to a room. It was over...

I don’t remember this part vividly, but I do remember there was a period of time here where I was very uncomfortable... I was cold and couldn’t stop shivering and I was very sore. Someone placed a morphine pump in my hand and told me that I could squeeze it every six minutes to get an extra dose. I squeezed and squeezed and squeezed and they piled blanket upon blanket over me and after awhile I felt better and slept. I remember being given my pillow and having the wherewhithal to remove “Cheer Bear” who had been tucked inside and asking to have my son’s fleece “wolf” blanket placed over me. I remember the presence of my husband and his feeding me ice chips. I never asked for them; he just seemed to know when I needed more without my asking. After every spoonful I could feel him tenderly stroke my cheek, or my forehead, and I remember feeling more loved and cherished than I had in months. I don’t think he knows that I was aware of this, but it is now one of my most cherished memories of him.

After awhile, I became more coherent and my husband and a nurse or two were standing above me. The nurse checked my catheter, and when she moved it it hurt. Everything sounded very loud... my head felt like I had just left a very loud rock concert and my ears were ringing. I asked if this was normal and was told that everyone reacts differently to the anesthesia and morphine. I opened my mouth and “popped” my ears and that helped a little. No matter how hard I tried, I could not stay awake for long. I was happy that the catheter was in because it meant that I didn’t have to get up or walk. I remember someone asking me to walk once, but I told her that with interstitial cystitis there was no way I was going to walk while I had a catheter in, so that settled that and I was allowed to drift back to sleep. I finally woke later in the night, around 8pm or so. DH fed me some orange jello and more ice chips and then he left and I slept some more.

The entire first night was a repeated sequence of me sleeping for a few hours, waking and using the morphine pump and feeding myself a little jello and going back to sleep. I didn’t watch any TV, but my “Through the Land of Hyster” book had arrived the day before surgery so I read the post op stories in there a little, which was perfect timing. Because I still had the catheter in and wasn't walking, they kept these cuff-like "boots" on my legs to keep the circulation flowing. I also think these help prevent blood clots after laprascopic surgery. These boots covered each leg from ankle to knee and worked like a blood pressure cuff: they constantly expanded and contracted. Sometimes they were irritating, sometimes itchy, but for me they were a worthwhile trade-off to not have to walk before I was ready.

I had a roommate that first night, but there was a curtain between us, she was quiet, and I don’t remember much about her. When I awoke the following morning, I heard her order two cups of coffee and a bowl of cereal with 2% milk from room service and I thought how disgusting that sounded to me at the time. My DH later told me that she had gone on several smoking breaks the day before with her own husband. I couldn’t believe that anyone would want to smoke after this surgery (she not only had a hysterectomy, but an abdominal one!). I smoked for a few years in my twenties, but when I was sick I was sick... she must really like her cigarettes to be willing to walk so far to be able to smoke. For me, I didn’t even crave my usual sugary favorites. I wanted water and healthy foods and things that were easy to digest. I was in extra healthy mode! New body, new me!

My roommate left mid-morning that day; my Dr. arrived and told me that everything had gone well. He told me he had left my right ovary. He said it wasn’t the greatest looking ovary in the world, but that there was no endo, so he left it and part of the tube. He said that he wrapped it in some type of surgical bag that would dissolve withinn 10-14 days and that this would help prevent any adhesions, which usually occur 3-5 days post-op. A nurse finally removed the catheter and I used the bathroom for the first time. It was slow going the first two trips, coaxing the urine to come out, but by my third try things were much easier. There was a lot of blood at first, and we weren’t sure if it was from my urine or vagina (they said sometimes removal of the catheter causes a short term trauma); by evening the blood had stopped. I remembered my laprascopy the previous year and how sore I had been and how everyone rushed me to go to the bathroom and leave and how horrible it had been. In comparison, this was much more gentle and humane. I felt that I was allowed time to rest and recover and that I was able to move into things at my own pace. Every nurse was especially interested in my production of gas, and by mid day I was passing gas and everyone was cheering me on like I was a baby.

I have to say too that when I woke up that first morning I felt very calm. I was in pain from the surgery, but emotionally I felt very level and peaceful and sure that I had done the right thing. I also felt warmer than I had in a long time. Not hot, just an absence for the painful chills I had suffered from with the endo. I also noticed an absence from the typical endo back pain that I had suffered from. My right ovary still felt very sore (in fact, it felt uncomfortable to lay on my left side), but overall it felt better not having the uterus and left ovary, even with all the internal stitches and trauma. I ate breakfast and slept and then lunch and slept. DH and DS came to visit in the afternoon, but it was exhausting having visitors and I was happy to be alone again in the evening. I didn’t even want to talk on the phone much. I just wanted to sleep and read and sleep and eat and sleep. I missed my DD, babyE, but I was happy to have the time to recover and I intended to make the best of it!

They had taken me off the morphine pump in the morning and started me on percocet. This didn’t work as well as the morphine. There was an “edge” to the pain all day and by 10:30pm I was sick of being in a maternity ward. It had not bothered me much before then, but I told a nurse I thought it was pretty lousy to put hysterectomy patients in the same ward with new mothers and babies (she agreed!). I already have two children and felt fairly okay about being there, but my heart ached for all the people who wrestled with infertility before their surgeries and had to be exposed to the crying babies and laughing patients. My chest was starting to hurt and I was sick of the pain and the jovial nature of my ward and I called my nurse and asked for a beta blocker. I just wanted to sleep. I cried a little and she was compassionate and kind and took very nice care of me. I slept for several hours after the medicine and felt much better.

My Dr. visited again the next morning and pulled up a chair beside the bed. We had a wonderful talk about my surgery and some other unrelated medical topics (medicinal cures throughout history!). I told him that I was worried about the ovary hurting so much; that I remembered EVERYTHING hurting as much after my last lap (which did not reap long term results), and he assured me that it is normal. He said that the ovaries are incredibly sensitive and that it would probably bother me for a few weeks. This assuaged my fears that I didn’t do the right thing in keeping it. He reiterated that he felt it was a good idea for us to try to keep the ovary, even if I later have to have it removed. He also told me that they couldn’t find the external scars from my first lap during the surgery because I had healed so well. He said that internally I had healed well too. Three were some adhesions and some new endo on the uterus and ureter and pelvic walls, but he removed it all and felt that the surgery went very well. I asked him about the possibility of my ovary going into “shock” and he said that rarely happens. He said occasionally a woman has the blood supply to her ovaries come from the uterus and after a hyst. that can happen, but usually everything is fine fine with the ovaries afterwards. He left part of the tube with the ovary (he also said that removing the tube completely often causes the ovary to shut down, and that is why he left part of it).
My husband arrived about 30 minutes after the Dr. left and I was able to go home! I was surprised at how exhausting the trip from the wheelchair to the car was and was more than ready for bed by the time we had completed the ten minute car ride from hospital to home. BabyE seemed very upset when she saw me. She collapsed on the floor and started whining and wanted to be taken to me immediately. I laid down on the bed and nursed her and I felt so happy that I had decided not to wean her before the surgery. (My Dr. assured me that if I wanted to continue, there would be no medical reason not to. He told me that the pain killers would not affect her; nursing mothers have surgery all the time). I had tried to pump my milk in the hospital with no luck, so I was surprised to find that my milk production was intact! In fact, it seemed like I was producing better milk than I had before surgery (maybe because I am not taking the progesterone anymore to suppress ovarian function).

I have been home for 24 hours now and although I am very sore and tired, I am hopeful that my healing will continue. I can tell that it is going to be a long, slow process, but I am okay with that. I am still a little constipated, but am drinking prune juice, metamucil and plenty of water to combat that! I am so fortunate to have my mother here this week, helping with me and the kids. All that frantic work I did cleaning and gardening was worth it because now I can look out the windows and see pretty flowers in pots and I can lay in bed and not be staring at dust and cobwebs. ~Clementine



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Today is the DAY! 06-03-2004 - 11:27 PM
It's past time for me to be asleep, and yet I wanted to take the time to make one last journal entry before this monumental surgery. Today has been so jam packed that it feels like a week since I sat here last night, surfing and typing. In fact, this is the first opportunity I have had to be on the computer at all.

My mom, babyE, and I ran some last minute errands today. I rented one of those hospital bedside tables and am trying it out right now. It is AWESOME! It even tilts so I can set my laptop on it and type away... We filled TWO CARTS with food! The problem with this is that it took over an hour to pick it all out, and about three to properly unpack it (which, of course, entailed cleaning the refrigerator and pantry). My obsessive-compulsive mood has been in overdrive today. I finally planted those last minute flowers and herbs on my deck so I can sit and enjoy them while babyE splashes in her little pool and sifts through her sandbox. I also had to replant flowers in our window boxes, as some unknown force (probably my lack of water) caused the first batch to wither and die. Finally, DH and mom ganged up on me and ordered me to STOP! DH said I don't give anyone else a chance to help me... this actually make me take pause and stop.

I have to be at the hospital tomorrow at 10am. Surgery at 11:15. I am still vascillating about the ovary thing... I was all set to tell him to leave it, and then my good friend lovingly chastized me. Her DH is a pediatric oncologist and she told me he gets very upset when people don't follow his medical advice. I shared this anecdote with my DH and as he held me tonight he told me he thinks I should follow my doctor's advice and get everything removed. He wants me to be out of pain and said "95% sure sounds good..."

I remembered an outing we had last June where we ran into some friends. As I recalled the event I could vividly remember how much pain I was in. And that was a YEAR ago, and not even the beginning of this wretched mess. At this point, I just want to be out of pain. My entire abdomen is aching right now (and that is ON pain killers). My vagina is throbbing and I have shooting pains down the insides of my thighs. My price for overdoing it today. At least now I can relax. I have done all I can do and now I can focus on my recovery. Once I get through the surgery part, that is.

Trying not to let my fears consume me, ~ Clementine
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One and a Half Days until my Castle Visit 06-02-2004 - 11:02 PM
Although I am exhausted mentally, physically and spiritually right now, I'm hesitant to go to sleep. When I awake it will be my last day before the Castle... I made a list a few days ago (an impossible list) and was surprised today to realize that I have accomplished most of what I wanted to. The house is spick-and-span-spring-cleaning clean. We're talking vacuuming curtains, under beds, dusting celing fans, etc. Too bad it will be trashed again by the time I'm able to enjoy it!

My mother flew in tonight. It feels so comforting to know she is in the next room. I made a stunning realization tonight that the reason she keeps pushing the story of her friend "D" and her super-quick recovery from her LAVH is not because she is minimizing this surgery, but, rather, that she is trying to convince herself not to worry. The kids are in heaven right now. She's a Super-Gramma, a get-on-the-floor-and-play-and-have-the-entire-world-revolve-around-the-kids kind of Gramma. This makes it SO AWESOME that she is here. BabyE is such a mama's girl and even she is willing to ignore me to play with Gramma. This is what I want for my children, because it will not only comfort them, but distract them!

I went for Annointing of the Sick today. Cried through the whole thing. And when the priest told me I was absolved of all my sins I thought that was such a cool feeling. To start from scratch. In fact, I so took it to heart that when I later went to Target I did a remarkable thing. As I was loading my sundries in the car (well after tired, crabby babyE was already buckled in) I discovered a few greeting cards that were hidden beneath my jacket in the cart and had thus not been paid for. I unbuckled babyE and trudged back inside to pay for them, even though it was raining; even though I was in enormous pain; even though I had already spent a bazillion dollars and could have easily rationalized it as a bonus. And I felt great about it. Now, I hope people don't think I have a problem with cleptomania. I'm actually a very honest person, but it still felt good to be a little extra honest.
I want to keep my right ovary. recommends getting rid of it all. I understand all his reasons and even agree with them. So why am I so attached to this thing that has had cysts and that in all likelihood might cause a recurrence not only of the endo, but of the pain...? I wonder what I'll do in the end.

I wish I could do this surgery without having to go through the pain and the risks and the lack of guarantees. The priest today was spouting all the typical religious rhetoric about trusting in God's plan, and everything happening for a reason, and being a stronger person because of it, and blah blah blah. (It's not that I don't believe those things, it's just that the way they are said sometimes sounds so scripted).

Anyhow, I thought to myself that it's true. All of the things that have happened in my life, even the worst things... the deaths, the heartbreaks... have all made me a better person and have shaped who I am now. And, ultimately, I like that person. I think the fact that I joined hystersisters on my birthday, May 22, put up a post about my horrible pain on May 24, received warm thoughts and prayers, and was suddenly "in" on a cancellation should be the sign I take comfort in. I will release my worries, I will release my worries, I will release my worries......

~Clementine
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Oyster 06-02-2004 - 12:02 AM
Today has been a productive day! I went for the pre-op (more details than anyone could ever want to know in the previous entry). I also cleaned like a banshee.

My DS has been very worried about my impending surgery. He tells me "I missed you," several times a day, even if I have only been in a different room. This is NOT standard operating procedure for my very typical 10 year old. Anyhow, I allowed him to stay home from school today. We cleaned and organized his room and rearranged the furniture a bit. He was so excited and when we were all done he said, "Oh, I'm so glad I stayed home from school to clean my room! I feel so much better now! I can actually THINK in here."

My mother phoned and sounded very nice. She's arriving tomorrow night and I'm really excited. In spite of our tensions, she's my mom and I love her . I told her that I'd been cleaning the house and she said that I shouldn't worry about that because I could clean it after the surgery. For real! Apparently, she talked with her friend, "D", who had a LAVH a few years ago. "D" told her that she felt so great after a week that she was exercising. "She probably walked," I told my mom. "No," she replied. "She was working out at the gym." I find this so hard to believe!!!!

The good news is that she gave me "D"'s phone number, so I will ask her in person. Fortunately for me my DH has much more realistic expectations! He's even planning on buying me a plane ticket for our annual month in Wisconsin this summer (working vacation), while he drives the car, because he doesn't think I should do a 14 hour car journey a month and a half after surgery. He's being so so understanding and supportive.

Funny story... Today, during an innocent "spat" my DH asked me if I'd met another man online. I was too flabbergasted to laugh, which was my second inclination. I mean, here I am, in excruciating pain for the past 6 months, approaching a hysterectomy in three days, and he thinks I would have the energy to flirt! I explained that the "other man" in my life was hystersisters. Of course, he knows alllllllll about the divine sisterhood, but I guess he just didn't understand how comforting this site actually is to me (guess he figures only a romance could keep someone up and typing after midnight). I said, "Wait till I tell the Sisters what you thought!"

I whisked babyE off after dinner and stocked up on about 20 books from the library and an assortment of plants from Home Depot, which I want to plant tomorrow. I cleaned her closet too and unpacked the last two boxes from our kitchen remodelling six months ago! I want this house to be SUPREME!!! I want to really be able to relax during my recovery.

At my pre-op today I had a 100 degree fever. My pain has been so bad lately that I often run a low grade fever. I'm becoming less nervous that this is the right thing for me to do. I have worked through a lot of emotions since last Thursday and I'm looking on the bright side. It occured to me today that this will be the first (and, God willing, the last) time in my life where I have 6 weeks of excused, guilt free, relaxation time. No feeling guilty for not cleaning the house. No feeling guilty for not doing laundry or working in the yard or cooking yummy meals. Just time to read and rest and recover. When I'm not being sad or scared that part actually seems very appealing.

The lyrics to a song I wrote a few years ago have been swirling through my head all day. When I wrote it, I was thinking of some friends who were going through hard times. Today, for the first time, it completely applied to me. I found great comfort in it. I put the CD on while I was running errands, listened to it, and even cried. I think everything is going to be okay.

Oyster
when the world is your oyster
and it's swallowed you whole
and the life you've created
is out of control
when you ache to be held
and there's no one around
it's okay

you're exactly where you need to be
you have always been
exactly where you need to be

and all the tears that you've cried
will become a clear lake
and the pains that twist your soul
they'll no longer ache

when there's gravel in your knees
from your last fall
and no one is willing
to break down your walls
when you long to be loved
but there's none to be found
it's okay

you're exactly where you need to be
you have always been
exactly where you need to be

and all the bricks that confine you
will become a palace
and the rosebush that's choking now
will soon climb a trellis

when you haven't the strength
to rake up your dead leaves
or tuck in the loose ends
on the tapestry you weave
when you need a kind word
but there's none to be heard
it's okay

you're exactly where you need to be
you have always been
exactly where you need to be

so when you're tired of feeling
untouchable
unloveable
and you're weary from being
invisible
remember it's okay

we're exactly where we need to be
we have always been
exactly where we ought to be


~ Clementine
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All About My Pre-Op 06-01-2004 - 11:09 PM
The following was posted in a thread in the Pre-Op forum. I apologize for any redundancy, but I would like a record of this for myself and am including it in my journal for posterity.

Today, I had my pre-op with my endo specialist and I thought I'd share with you some of the questions I asked and his responses. Of course, this pertains to my specific case, but I thought there might be some useful info for other LIWs.

I have suffered from endometriosis for about 6 years. I've had two laprascopies to remove the endo (and my appendix on the second one). I've tried progesterone therapy, physical therapy, dietary changes, acupuncture, and getting nerves burned in my spine in addition to the laps. Though I had relief after each lap (1 1/2 years the first time -- pregnant for 9 of them and not menstruating for 6 more; and 6 weeks after the second), the pain always returned, and always returned worse than before. I am at the point now where I have constant, severe pain in my lower abdomen and lower back. Sometimes the pain radiates down my legs and sometimes my stomach muscles seize up. I often have painful BMs.

I went to my Dr.s office today armed with questions about my ovaries and cervix. The bottom line for me is that my Dr. recommended removal of everything. He recommends removal of the cervix for endo patients because he said he has found that there is a strong recurrence when it is left. He said that the pelvic floor support theory is not true-- the cervix does not support the pelvic floor, the ligaments do. He said that in traditional LAVHs the ligaments are cut to release the cervix and then heal. He said this usually does not cause problems, but obviously scar tissue develops. He has developed a method where he cuts the cervix without cutting the ligaments, which he has found to provide better healing. He will then sew the vagina.

I worried that this will affect sexual pleasure for my DH, but he assured me that the normal male is not endowed enough to notice a difference (His wife had a hyst., so I figured he would know!). I asked about the cervix having more nerve endings and thus the removal causing more pain, and he said that this is not the case. As far as orgasm, he said that if I now have orgasms where my uterus contracts, that orgasm may feel different since there will be no more uterus. However, clitoral stimulation will remain the same. He said keeping or not keeping the cervix makes no difference for that. Since I had endo removed from my cervix during my last lap and since my maternal grandmother died from breast cancer that spread to her ovaries and cervix, I am going to opt to remove my cervix.


I am a little sad that he recommends taking both ovaries. Ultimately, I know the choice is mine, but I trust him when he says that the ovaries are the source of the endo and there is a 30-50% chance that the endo will return if I leave an ovary (my right one was unaffected when I had my last lap, so I had hoped to keep that one). I asked about HRT and he says he will immediately put me on a low does of estradoil (I'm sure my spelling is incorrect). I asked why I can't keep my own ovary if he's putting me on estrogen anyway and he said that the amt. of estrogen I would take is much less than what I would produce naturally, thus preventing menopause while still keeping the endo at bay. I asked if such a low dose of estrogen would make me menopausal, and he said no, especially since I have already been on progesterone which has suppressed my estrogen production. I did not think to ask why I couldn't just keep an ovary and take progesterone to keep its estrogen production lower, but I will ask when I am in the Castle. He also told me that only 1 out of 10 of his patients stuggles to get their hormone level correct, and that they are able to usually get it under control within 6 months. Some of his patients end up using an endo-testosterone combination and some add progesterone.

I also suffer from thyroiditis, which is a form of hypothyroidism. He said that often times the hypothyroid improves with hysterectomy. Because hypothyroid is negatively affected by estrogen production, he said it will be one less thing for the estrogen to mess with. He said endometriosis and thyroiditis are both autoimmune diseases and that I might get some relief with both after the surgery (an added bonus!).

One other question I posed was whether or not menses would increase his ability to see the endometriosis. He said that often times this is the case, but that he does not recommend actual menses during the time of the operation because that increases the chances of infection. He also said that with endo he does almost everything laprascopically, but that he does remove the uterus and ovary through the vagina; the transient nature of endo makes this an easier alternative, though he said doing it completely laprascopically IS safe too. He also does not recommend performing any other surgeries at the same time for me (bladder or bowel repair, for instance). He believes in dealing with one ailment at a time.

These are some of the questions I asked. Because I am in such chronic pain, my Dr. recommends removing everything (TLH with BSO). He believes the source of my pain is the endo (based on my case history) and that a total hyst. will offer the best chances for a pain free and happy life. He also said that if I were in my twenties he would really hesitate to do a hyst. because of its irreversible nature. He would recommend trying more conservative methods in an attempt to buy time.
In my Dr.'s opinion, the only possible cure for endo is a total hysterectomy. He said that 99.5% of his patients have no recurrence of endo. after a total hysterectomy. He said that 95% have a total relief from pain. He does have the 5% who still suffer from pain due to scar tissue and nerve damage and he said that, sadly, there is no way to predict who the 5% will be.

I am 37, my husband is 47, and, although I am sad to know that there will be no possibility of biological children in the future, we have a 10 year old son and a 2 year old daughter and we are blessed. We will be even more blessed if I can get healthy, pain free, and ALIVE again. For me, being in chronic, debilitating pain for so long, the most important thing is finding a permanent end to the misery. The thought of keeping an ovary and having a possible recurrence is not a gamble that I'm sure I have the strength to contend with. Maybe if I hadn't already had two surgeries and if I wasn't in so much pain I would try a more conservative surgery. It is my hope that if I have everything removed I will be pain free and will never have to have another surgery again.

I welcome any thoughts or comments from my Divine Sisters! I hope that maybe I will have answered some questions for other LIWs, because I know many Sisters have answered questions for me on these threads.

Best of luck to all my Sisters and may your recovery be healthy no matter what surgery you choose for yourself!


s ~ Clementine
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Starting to Hyperventilate about Friday's Castle Visit 05-30-2004 - 11:26 PM
I'm feeling crampy tonight, almost like I'm getting a period. More than just the usual front & back pain... that fluttery "something's moving" feeling. I think that I'd like to bleed. During my first lap Dr. Nice told me it was easier to see the endo right before or during a cycle... I asked Dr. Expert and he confirmed it to be true (though he did not ask for Aunt Flo to be there during my second lap). I want that endo to shine like a beacon when I'm at the Castle Friday so he can make it all go away forever.

I can't remember when I had my last period... I just switched from Nor-Q-Ds (double doses daily) to Norethindrone in an attempt to suppress bleeding, and my body feels so whacked from the whole thing. A few weeks ago (before the switch) I gained 10 pounds in a WEEK! I felt pregnant and my breasts were so sore I wanted to slug anything that brushed up against them! Then with the new pills I lost 6 pounds the following week and felt less bloated. I felt calmer for a few days, but only a few days... My poor body is confused... Maybe I should stop the hormones to bring on the flow. If I start bleeing Tuesday or so, I'll still be in good shape for my castle visit Friday... That seems so weird to say... my castle visit on FRIDAY... It seems like I'm dreaming, this is all happening so quickly.

I'm sitting here right now waiting for my beta blocker to kick in. I haven't needed to take one in months, but I've been having chest pains every day since that phone call saying, "...we've had a cancellation." I remember the days when I wouldn't even take an aspirin for a headache. Now I take my levothroid every morning for my thyroiditis, my norethindrone every night for my progesterone therapy for the endo, and my ibuprofen and vicodin for the pain... All "lactation approved" they say ("they" being the two doctors and two pharmacists I ask with the introduction of every new chemical). And, of course, I am a member of the "graduating class" of self-catheterers who nurse #2 has taught to administer the IC treatments to, so I can now do that in the comfort of my own home whenever I need to (though I really don't seem to have pain in my bladder~ guess I'll see if that changes after the surgery).

DH and I took a day trip with the kids today to visit a winery where he has a gig on June 12. It was a beautiful drive... It soothes my soul to be outside, and it is sooooooo breathtaking here with the rolling hills, lakes, assortment of evergreens, willows, maples, oaks, flowering crabapples, etc..... to breathe in the crisp, spring air and feel the wind caress my skin was 100% nature therapy...

I NY

DS snapped a photo of me which I put in my photo album to chronicle the "before" me. The manager of the winery gave us a private little wine tasting and that improved my mood even more and he gave me a bottle to take home to celebrate after my surgery. Very thoughtful.

The weaning thing is not going so well... I fell off the wagon tonight... babyE was sooooo happy... okay, me too.

Now that my mother is coming to help out for my surgery, she is in her martyr mode... only speaks when spoken to... doesn't want to talk about anything regarding the procedure "...I don't know anything about it.".... when I think of how close we used to be all those years ago I want to cry... How does a relationship evolve from being like the one I have with babyE to the one I have with my own mother...? Of course, I know the answer (her suddenly becoming a widow at 44 with a 16 year old daughter and 18 year old son to raise alone and turning to perscription drugs to mask the pain and falling deeper and deeper into a depression every year) but it does little to help. I wish I could help her but I guess we both made too many mistakes in the decade plus following my father's death.

I thanked her for coming to help and told her how much it means to me that she will be here even when it is inconvenient timing for her. I told her I love her. It's always so hard to reach out to her... there is this invisible electrical shield around her that makes me afraid to touch her lest I get zapped-- BTDT. Maybe seeing me in miserable pain will trigger some of those long lost feelings she once held for me... oh, the healing for me goes so much deeper than mere physical scarring...

...getting too
blue to write anymore.... gonna go pray... ~Clementine

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I Miss Me 05-30-2004 - 12:11 AM
I have been struggling with this disease for so long now that it has completely consumed my life. I can't even remember the me I used to be. Sometimes I call a dear cousin and ask to be reminded... "I really was motivated?"..."I really had THAT much energy?"... It seems like that was a different person in a different life. I miss that person. I want to be her again.

I don't know if it's the constant pain, the hormones, or the vicodin, but I have moments where I am an inflexible, intolerant *****. I really do have a DH, because two of our three years of marriage have been for "worse" and he still loves and supports me.

We have a man painting the exterior of our house right now and he irritates me. Oh, he's a really nice, polite, HAPPY guy, but he knocks on the door to use the bathroom a few times a day. The old me would have been generous and friendly. Now, I open the door, still in my pj's many days and I feel both guilty and defensive, like he is thinking: "Some life she has. Must be nice to sit home all day and do nothing." Of course, this is not because of anything he says; rather, it is my own guilt at how inactive and incapacitated I have become. I just want to be alone most days.

I used to dream of having a baby girl and being a stay at home mom. I finally have both of these gifts and I'm sleeping them away. I wish I had milk & cookies ready for my DS every day afterschool... that I went for daily walks with my DD, babyE... that I had a spotlessly clean house and invented fun art projects for the kids... I do have these moments, but they are not nearly as often as I want them to be. Now, about the only thing I do consistently is feed everyone. So many needs aren't being met daily. I have a friend who has constant back pain and has had a slew of health problems. She has six kids and she is always sunny and helpful. She never sleeps in the middle of the day; she just pushes the pain away. I feel like such a failure. When I am not sad about it, I am angry.

When I was 18 my first true love died from leukemia. The last year of his life he became so negative and angry that I couldn't relate. I didn't understand why he was so mean. I'd always heard these stories of selfless martyrs dying gracefully and I didn't get it. My heart aches anew for him as I now can understand what the pain (not to mention loss of hope) did to him.

Tonight, my wonderful, sensitive DS climbed into bed with me as I was putting babyE to bed. It was late, I was irritated, and I just wanted to be alone. I snapped at him and told him to leave. Some mother, huh? A few minutes later, consumed with the realization of how horrible my actions were, I went to his room. (The poor boy is scared about my surgery and instead of reassuring him I had pushed him away!)

"I don't mean to be mean," I told him. "I'm so sorry that I acted that way. Sometimes I hurt so much that I lash out at you and you are the greatest thing that ever happened to me and I love you so much." He cried and crumbled into my arms. I told him to come back to my room and I held him for 20 minutes. I know that I said the right words this time, but I'm so worried that it's the negative actions that will plague him as an adult. I want him to grow up with intact self-esteem. I do things like this and it adds to the tally of self-loathing that this disease has created.

I used to be full of energy and HAPPY and easy-going and CALM. I was giving and generous and funny. I used to be creative and draw and write songs and sing in coffee shops. 100 years ago I would have been one of those women with "female problems" in bed sipping laudanum until my premature death. Even ten years ago, many women with pelvic pain were told it was "in their heads." I need to keep focused on how LUCKY I am that at least I have options. I pray to God that this surgery ends my constant pain and irritability and that I can find the nice me again. She was really special and memorable, and I miss her so very very much. ~Clementine
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Bye-Bye "Night Night"... weaning my baby in a hurry... 05-28-2004 - 09:23 PM
I feel so selfish even writing this, because I read the posts from young women who ache because they will never have children through a pregnancy and I know I am so fortunate because even though I have endured enormous pain, I have two blessings of children to love.... Please forgive me if I offend anyone.

I just discovered yesterday that my castle visit has been moved from December to next Friday. I am coping with so many things right now, but perhaps the most heart breaking is that I have to wean my baby daughter. She is two years old, so it is not like she's an infant or anything, but I have clung to the nursing as a great comfort... my body's last great hoorah before I am surgically and irreparably altered. She loves it and I love it and we take daily naps together and snuggle for hours.

The hardest part is listening to her cry... I just spent ten minutes listening to her call "mama" from her crib... (I had to put her in there because she was even more upset when I tried to hold her and wouldn't let her nurse). That, coupled with my fear of death and of leaving her forever (and my 10 year old son too) put me over the edge and now I can't seem to stop crying.

My gyno told me that I can continue to nurse after the surgery-- he said it's not the uterus that makes nursing possible, but the hormones. But I can't imagine that I'll feel well enough to do that and so DH and I agreed that this is probably the best time-- now, before my castle visit. It's just so hard. I'll never have another baby again. I'll never nurse again. Even though we didn't plan to have anymore, it feels like such an incredible loss. And I will miss the intimacy and closeness that nursing provides with my daughter.

I actually tried counselling with a grief specialist in women's issues, but she was 7 months pregnant, healthy as a horse, and I couldn't deal... the next counselor was 25 ("Like, do you have a problem with that?" she asked. "Sorry, but yes," I replied). So how do you do something that you're not yet emotionally ready to do, but know that you have to?

Achy-breaky me, ~Clementine



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There are no Athiests in Fox Holes 05-28-2004 - 02:25 PM
Today I have been a poster child for manic depression. Since learning yesterday that my castle visit is now 7 days away instead of 7 months I am on emotional overload. One moment I am calm and optimistic, and even excited, the next I am a wretched, worried mess. I have thrown myself several mini pity parties throughout the day... (and been furiously cleaning the house in the interim!)

At the moment I'm feeling grateful and counting my blessings. I truly believe all the support I have found here through s and prayers have been instrumental in this sudden cancellation; especially since I had been sadly told that Dr. Expert rarely has cancellations. Thank you to everyone who has cared enough to send a positive thought my way. I'm also feeling grateful to my DH for giving me this laptop for my birthday, complete with a 20 foot cable cord so I can write from the comfort of my bed...

Although I have always considered myself a spiritual person, I have not been all that religious lately. I am the quintessential lazy Catholic, attending church sporadically (although part of this is because I'm in so much constant pain). For some reason, however, I have been feeling particularly religious yesterday and today. Random Bible passages have gone flitting through my mind and I even found myself calling my church to arrange for Annointing of the Sick and to have communion brought to me during my recovery. It seems that overnight I have turned into the little old, rosary-toting lady dressed in black and attending morning mass... (of course I'm not really old and I rarely dress in black, but still, the image is appropriate for my state of mind!)

I am reminded of the saying, "There are no Athiests in Fox Holes." Oh, how human am I!!!

I truly believe that joining this site, actually beginning to think through and prepare for my castle visit, and asking for support from other sisters has made a difference. I mentioned in one of my threads my disappointment in my mother's lack of support and her plans to continue with plans for her Florida vacation rather than coming to help her daughter and grandchildren. The sympathetic comments from strangers made me feel so much better. My cousin D. remarked that my mother's actions are just one more thing that will make me a better mother and grandmother. How true she is! I will learn and grow. I can't even imagine not being with one of my children during a surgery, serious or minor!

I believe the positive thoughts and prayers from my sisters have helped (Thank you, Sisters!). Yesterday, everyone I called was regretfully committed on the day of my surgery... today, I have had a cousin offer to fly out, a friend offer to drive 14 hours to be here, and my sister-in-law offer to fly out for 7 days!! Because I have only lived here for 3 years and have been in serious pain for most of that time, I don't have hordes of friendships in town, but those that I do have are with wonderful people and most have offered help of some sort.

I am choosing to count my blessings and be grateful for all that I have, rather than dwelling on that which I don't. Of course, that is subject to change in about 10 minutes, but hopefully I can maintain an optimistic outlook. ~Clementine

UPDATE: My mother just phoned and said she is flying out to help me and the kids for the first 7 days. See, there really is a God!
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PANIC... surgery moved from December to NEXT FRIDAY! 05-27-2004 - 09:09 PM
I awoke, groggy, from a long afternoon sleep to the sound of my DH whispering, "The doctor's office is on the phone. They had a cancellation and want to know if you can do your surgery next Friday." I quickly got on the extension, said, "yes, yes, of course, when do you need me?", hung up, and promptly panicked. I mean, I fell asleep thinking I had 7 months to mentally prepare for my castle visit and awoke to hear that I have 7 days (talk about a Sleeping Beauty moment!).

It didn't help matters that my DH doubled over and said he has a sudden, stabbing pain in his back and felt nauseated. I thought he was kidding, but he was seriously having a "sympathetic" pain moment! (Either that, or a premonition of something terrible going amiss... but I'll think positively and ascribe it as being a romantic, soul mate moment!).

I wonder if all the prayers and hugs you sisters have sent my way nudged the universe into taking action...

Anyhow, I am a mess (not to mention the house!). There is SO MUCH to do... cleaning, meal preparation, making arrangements for someone to watch the kids, finishing the quilt that I promised my DS's teacher I'd finish from the Colonial Quilt art project I taught last month, laundry, finding 20 great novels to read, hyperventilating, writing my last will and testament, writing a song for my DD, Baby E.

So, of course I watched "Oprah" instead, and her interview with Sharon Stone, who talked about her near death experience and described the afterlife as being "so near" and of feeling completely safe. It helped alleviate some of my fears of dying, which I know is so unlikely, but still, we all have our fears. It would be nice to see my dad if I died and meet my grandmothers, but I'd rather be with my DH and kids right now and for the next half a century at least...

I just reread this and realized how positively morbid I sound! My fears of living far exceed those of dying. Fear of surgical complications, fear of gaining 50 pounds, fear of never feeling like the pre-sick me again, fear of going through all of this only to have the pain remain or return, fear of never enjoying sex again (not that I'm enjoying it now!). I have 7 days to work through all of these fears.

I'm trying to hang on to the wise words of one of my friends who is a nurse practitioner. She once asked me, "If you had uterine or ovarian cancer would you hesitate to have the hysterectomy?" to which I replied "Of course not!" She looked at me and said, "It's the same thing. You have a disease and hysterectomy is the only cure."

I've struggled with this decision because the endo is NOT killing me, but in the end I've realized that although it may not be physically killing me, the pain and immobility have been slowly killing me emotionally and spiritually for over two years now... not to mention the potential damage all the pain meds are having on my liver and kidneys.

So, I finally have the castle in sight and am preparing for my arrival. ~Clementine


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My Story 05-27-2004 - 12:50 PM
The journal section of the hystersisters site is one of my favorite. I love to read "real" stories by real women. I've long been telling myself I should keep a journal to record everything I'm going through and to me this seems like the best format for such an endeavor. Maybe something I write someday will help a lone reader feel better, or answer a question, as reading other journals has done for me. If so, it's worth it.

Compared to many, my pelvic pain journey began late in life. My periods were always heavy and long, but I just assumed that's the way it was. I was on the bc pill from 18-24 and maybe that masked some of the symptoms. I do remember being prescribed special pain pills for my period during my early 20's, but they did the trick so I figured it was normal. I delivered my first child, a son, when I was 26 with no meds through natural childbirth. It wasn't until my early 30s that I began to have serious pain.

The first thing I remember is the "cramping" feelings I would have after intercourse. I actually believed it was normal, from good, hot, healthy sex! I kind of enjoyed the little reminder of my rendezvous. After a year, however, the pain because more consistent and would start with ovulation and not end until after my period. I also experienced other things I thought were "normal" but now know are not, like having painful bm's during my period. I went through two Dr. "I-don't-believe-yous" before I found Dr. Nice who immediately suspected endometriosis and scheduled a laprascopy for one week later. I had the lap, which confirmed endo and Dr. Nice showed me the ugly photos of my insides and told me he had removed all but the endo on my ureter, which he said could not safely be removed.

A few weeks later I moved to a new state, married my DH, and conceived my now 2 year old daughter. The pregnancy was tiring, my back hurt a lot and I experienced cramps (which I remembered having during my first pregnancy, and so assumed were normal), but otherwise was a healthy pregnancy. I had a midwife whom I loved and the birth was beautiful. I will never ever forget watching baby E. emerge and having her placed on my chest where I held her for an hour before they finally bathed her. It was the happiest day of my life. The next six months were the happiest of my life. The endo thing was something from my past that I thought was cured and didn't even think about until baby E. was 6 months old and I got my first period, complete with all the old endo pain. Within three months, the pain was nearly constant.

Do you know how frustrating it is to find a gyno when you are in a new town and don't know many people yet? I went to a referral, Dr. Pervert and then got serious about finding someone who would help me and treat my pain seriously and with the respect it deserved. I had to wait three months to see Dr. Expert but it was oh-so-worth it. He is a specialist in lower pelvic pain and immediately suspected a recurrence of the endo. He also hypothesized that I had interstitial cystitis and possibly pelvic congestion. I had to wait three months for the lap (this time I needed to fly in help for the kids, as DH is a type A very busy--though loving-- workaholic) and cystoscopy (to determine if I had the IC) and venogram (to determine if I had PC). In the interim, I received bi-weekly "catheter" treatments for the IC, and weekly physical therapy. Dr. Expert removed ALL the endo (including the endo on my ureter, which Dr. Nice couldn't remove). It was on my outer uterus, bowels, appendix (which was removed too)... you get the picture. I did not have the PC but did have the IC. Dr. Expert prescribed low dose progesterone pills (I was/am still nursing baby E)

The recovery was a BEAR. Finally, Dr. Expert referred me to a pain center. I was excited, envisioning a specialized treatment plan, but essentially all they were interested in was finding guinea pigs for spinal injections to "numb" the nerves in the pelvic region. I was an eager beaver and about three weeks after my first injection I was pain free! I walked and did yoga every day, had fantastic energy, and figured I was home free. In fact, I was so convinced of my recovery, that I forgot my post op appointment at the pain center. Two days after the appt my pain returned and within a week was as bad as it had been previously. The bad news-- I couldn't get another appt for a month.
I suffered, thinking it was just a matter of a few weeks, but none of the other spinal cord injections were successful. I even had some nerves "burned" in my spine, but to no avail... I now suspect that the 6 "healthy" weeks I experienced were a result of my lap and not the injection.

Back to Dr. Expert. Higher doses of progesterone, more physical therapy. I got serious about treating my IC, thinking maybe that was the real culprit. I read every book I could find, but my symptoms just did not seem consistent with IC and the catheter treatments didn't offer relief, which further supported my theory that my pain stems from my endo. Finally, in January, Dr.Expert sat with me for nearly an hour, answering all of my questions about diet, Christiane Northrup's recommendations ("Women's Bodies, Women's Wisdom&quot, lupron, acupunture, Chinese herbs, etc. He surprised me by his knowledge of alternative methods and his belief in the benefits of some of them. The end result of the conversation was that there are many different ways to "manage" endo, but the only potential "cure" is hysterectomy. I decided I was sick of the pain, the immobility, the depression, the pills, the life of hating the body I used to love. And now I await my visit to the Castle, chiding myself for not immediately making an appointment for this May or June (I naively thought that I could make the appointment in April). By April, Dr. Expert was booked until August, which doesn't give me enough recuperation time before I have to go back to my work as a part time college teacher. So, I am on a "waiting list" for a cancellation, with a final surgery date of December 13. Oh, it's a long, long journey to the castle...

In the meantime, I sleep, take even more progesterone, love/hate my pain medication, and try to treat myself nicely when I have the energy. My favorite smell is the sweaty gym socks smell of my heating pads, because I know how good they will make me feel. I see an acupuncturist, which does not really help the pain, but does help my depression and energy level. And I pray for an end to this nightmare of my physical life. ~Clementine
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