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Am I paranoid? Or just cautious? Am I paranoid? Or just cautious?

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Unread 07-16-2003, 12:16 AM
Am I paranoid? Or just cautious?

Hi, all!

Well, ladies, Friday is an appointment with both my GYN and my neurosurgeon for the neck thing. I did listen to all you ladies a few weeks ago, and do have a note written that I will fax my doctor prior to the visit (GYN this time).

Here's what I'm feeling, and bear with's a little weird, and there's a lot going on:

It feels as though my intestine is sitting on top of my bladder. When it's "full" I have bladder pain and difficulty emptying...and some vaginal discharge . As my kid would say, "like, what's up with that?". And I had normal intestinal function for the first six months after surgery -- but now it's back to the pre-op pattern that I experienced with the giant cyst pre-op. I've got the fullness with EVERYTHING I eat, and have lost some weight (gee, only 10 lbs to go! ). Honestly, my body feels very much like it did prior to my surgery, including the signs and symptoms of anemia (constant arrhythmias, shortness of breath, paleness, and loss of energy -- and the bruises!). I've also got some suspicious gall bladder symptoms (been THERE before!).

My legs are constantly swollen and mottled -- this hot weather doesn't help. I've got some auto-immune thing going on, with facial rash (in spite of cutting out all supplements and even fluoride from toothpast) and joint pain.

That's the gist of the GYN visit. And close reading of my path report does NOT ever identify a left ovary -- the presumption is that it was "destroyed" by the endometrioma. But we all know about pesky ovarian "scraps" especially in the setting of stage IV endo.

Now, here's the paranoid part: I had a high CA-125 prior to surgery, which I'm aware can be due to the endo. We checked it, when I was feeling good at six months out, and it was 9, which I thought was pretty good. But I'm honestly beginning to wonder -- at the least, this is adhesions (and the bowel obstruction has to be diagnosed and relieved). At the most...well, I'm trying REALLY hard not to go there...but I will ask for a CA-125 prior to my visit.

Beside that, my herniated discs are getting to be a problem...I've been unable to sit for more than an hour at a time (or lay on my right side much). I ALWAYS pay a price for typing...pins and needles in the right hand after 20 minutes, and not in the carpal tunnel distribution, either. Now my right leg starts to weaken and feel numb (and swell even more than the left) after a lot of walking, and I begin to limp. I was, six months ago, running three miles (hills) three days a week. This is most unwelcome.

Now, just for kicks and giggles, let's add in the two root canals that I've needed for over two years, and the fact that I am fighting my way through workman's comp on the neck issue and battling the IRS . I'm trying very hard to keep my stress level down, but it's hard. I've been tempted to leave my DH, frankly, just to try to get my own "stuff" sorted out so that I don't have to keep going on the home front too -- it would be temporary, but I need a break from something!

The thing that's kept me going through all this is that the pain levels aren't THAT high. I walk around at a 3 or 4 most of the time...the weakness is more troublesome. Most days, I can make it on two 1/2 doses of extra-strength Vicodin -- I'm very careful of the NSAIDs because of my ulcer history and the fact that I had kidney failure and liver failure twice in my life, once due to toxemia and once due to a virus.

We do not have an internist, and I'm going to talk with the cardiologist I work for tomorrow to try to get an appointment before the end of August with someone to start working on those other issues. And I try to keep my two jobs and the commute. I'd almost welcome a note from my doctors saying that I need some time off. That actually would also get the IRS off my back. The neck injury is likely to be career-ending for me, and unfortunately, that also is going to take a lawyer to deal with.

Needless to say, my paperwork skills are terrible, and my energy levels even worse. I finally broke out the Welbutrin that my GYN thoughtfully provided (we considered it a contingency plan, back when I didn't need it, "just in case") and am praying for the strength to go through whatever lies ahead for me.

I don't know how you guys do it through everything. I guess it's like one of our household mottoes: "you do what you have to do". Just, right now, it seems overwhelming. And in all of this, I've never taken a "sick" day in three years, other than the planned days due to my hyst.

Thanks to anyone who made the effort to wade through this "megillah" (a long story, in Yiddish). And I truly welcome any advice as to what to do first...

Giant hugs to all my friends who live through all this with such grace. I hope some of it rubs off on me...

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Unread 07-16-2003, 01:41 AM
Am I paranoid? Or just cautious?

(((((Audrey))))) I'm so sorry you're struggling with all these demons at once. First off, I've got to say, please, please don't worry about news you haven't gotten. There is no benefit in that, and you have enough stressing you out already.

I have to say, looking at your symptoms and when they've occurred, that I wonder if it isn't all hormonal in origin. So many of those aches and pains can be caused by low estrogen levels, as well as palpitations and lack of energy. It can also make you feel anxious and agitated, which can cause you to feel much less able to tolerate the little day to day hassles of family life .I know you are being super cautious about your dot because of the endo, but I'd encourage you to explore using compounded estriol instead so you can up your estrogen and see if it helps with the pain.

Also, I have to wonder if some of the GI symptoms might not be due to a combination of your progesterone level and the vicodin. Have you tried VIOXX for pain relief? I found it to be wonderful after my colectomy, one pill a day and it's not constipating. I'm not sure if you can take it though, if NSAIDS bother you. But staying on the vicodin long term isn't good for your bowel function.

Maybe it's time for a complete set of blood work including hormone levels? And thyroid and adrenal function? I'd be willing to bet your adrenals are shot. I'm guessing your cortisol level is sky high. Being low in estrogen can make that problem oh so much worse... I've found that taking supplements to boost adrenal function as well as upping my estrogen a bit is letting me sleep better and deal with stress better, as well as have much less of those annoying joint pains we all seem to get.

Hang in there, sweetie, we're all here for you! Let us know how your appointment goes, OK?
Unread 07-16-2003, 07:33 AM
Am I paranoid? Or just cautious?

I'm sorry to hear that you've got sooooo much going on. I can relate to the fullness feeling. I just had a piece of toast (wheat free/yeast free/dairy free) to try and calm my nausea and feel like I've eaten a horse. For the last few months, and it keeps getting worse, by the end of the day I can barely stand anymore due to the swelling and pain.

I am glad that you have a doctor appt coming up so you can discuss what's going on. I will be ing that the doctor will have some answers.

Yes, you are correct my friend. We do what we have to do to get thru the day. Although I am still wondering how the heck I am going to do it when I finally am gainfully employed again.

Linda brings up an interesting point about the hormones. A few months ago my Osteo doc mentioned that perhaps hormones were part of my problem. We did some testing and they were indeed low. Maybe if I could remember my second dose I might see some improvement?????

Sending many s
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Unread 07-16-2003, 07:46 AM
Am I paranoid? Or just cautious?

{{{{{{{{{{Audrey}}}}}}}}]I just want to send some s to a special lady. Please let us know what the docs say. I am so sorry you are having all these problems and I pray you find some answers do NOT deserve to feel this bad!

Unread 07-16-2003, 09:06 AM
Am I paranoid? Or just cautious?

(((((Audrey))))))) With all of the issues you're dealing with, it's little wonder that your autoimmune system has gone into hyperactive mode When I had the CCRA (the canadian equivalent to the IRS) breathing down my neck, last year, was when the arthritic pain issues started!!!

Stress, as you well, know is a trigger for a lot of the issues that we, Road Dwellers, are dealing with. (((((Sweetie)))))) I don't think you're paranoid: one of the prices we pay for being well-informed is .... sometimes.... just knowing too much for our own good (I remember just how nervous, and sick, a room-mate of mine was when she was about to undergo tonsillectomy: she was a nurse and had been an OR nurse at one point in her carreer and she kept re-ashing all of the things that could go wrong... the rest of us, blissfully, were mostly unaware of those dire possibilities and just sailed through the day).

((((Sweetie))))) you need to concentrate on your health and, thankfully, that's what you're doing with your two doctor's appointments. As for the IRS issues, can your DH take over some of the burden? I know that some of it has to be handled by the person concerned, but, as a couple, he might be able to take over some of the paperwork.

I know that I can relate to the joint pains and the increase in problems with all of the humid heat we're getting, so can only imagine how bad it can get in warmer climates.

I think that a complete blood-work, getting all of your levels (include the CA-125, if that will allow you to relax a bit) tested and a good physical will hopefully some light as to what could be causing all of your symptoms. They might all be related or they could be a combination of several issues going on all at once. Hopefully the Wellbutrin will also help you feel better... and give you the courage to cope.

I'm also thinking that you need to rest, so taking a break for one of your jobs might be the way to go... at least temporarily.

((((Audrey)))) You know that you're always in my thoughts and prayers. Hopefully, things will work out for you.

(btw, I also don't know how I manage to cope, some days. In my case, it's not so much the pain, though some days can be bad, but the stress... I'm starting to really believe that the old saying is true: we're only given what we can handle.... because we can handle it.... it's just that some days... or months... or years.... are harder than others)
Unread 07-16-2003, 09:42 AM
Am I paranoid? Or just cautious?

Audrey, just wanted to join in and add my 's to everyone elses.....hang in there, things just have to get better and in the meantime, at least there's hystersisters!!
Unread 07-16-2003, 10:04 AM
Am I paranoid? Or just cautious?


Here is a big and I am so sorry you are dealing with all these symptoms...I will be praying for you on Friday that you can at least get some kind of answers... there is nothing worse than dealing with that "unknown issue"...

I have not been feeling well myself, but jusy chalk it up to all that I have been thru, as well as not having anytime for myself as usual...You are NOT paranoid, as you and us all here have been around the "DR block" way to many times.. I am thinking of you and hoping for resolution soon for you, me and all our sisters on this very windy road!!!

to you Dear Friend!!!
Unread 07-16-2003, 05:36 PM
Am I paranoid? Or just cautious?

's audrey and i'm so sorry to hear you are feeling worse. i've had extreme tiredness, bad aches and pains, and a host of other symptoms. i found a new dr that tested alot of hormones (including cortisol) and found that i was low on just about everything she tested. my thyroid was borderline, but she's treating it anyway and i just feel so much better. i had so many complaints that i just couldn't pinpoint which one to work on..but the thyroid has helped tremendously. i was also put on a diet similar to kim's...basically a no food diet , that is helping alot with the bloating. i am being treated for yeast (re:bloating, among other ailments) and am keeping a journal of everything that i consume. i've also had a complete hormone overhaul. i do feel that if we keep at it, we will eventually have success with our health. please know that i'll be thinking of you and hopefully your dr will offer some real help for you. more 's
Unread 07-16-2003, 07:41 PM
Am I paranoid? Or just cautious?

First of all, and thanks all for your comments.

I'm still shaking at the moment -- I was at the Santa Monica Farmers' market today half an hour before the terrible accident. I don't even know if the people who sold me my peaches, or my lettuce, are still alive . I am very grateful to G-d that I wasn't there...too close for comfort though! However, I am also praying for the families of those involved and for all the vendors (I've bought my produce from all these people for thirteen years).

Anyway, I've wondered about my diet, but I've eaten the same mostly fish and veggie diet for years now. I don't eat starchy carbs or wheat products nor do I eat dairy.

I do need a good internist as well, but everyone I call can only give me appointments at the end of August. It's hard to get into see anyone here quickly, they're all so overloaded. I was going to ask the cardiologist I work for to assist in some way (calling often works wonders) but the events of the day left the entire office shaken, as I buy produce for everyone on my weekly visits to this market.

Anyway, I'm going to ask for cortisol levels as well as thyroid (once again...been down that road waaay to often already, but what's one more time? ). And Karen, I can so relate to your statement "not having anytime for myself as usual." That's such a huge part of my problem, and I am sooo tired of my family not seeming to be able to handle things by themselves (but then, that's another post!). However, I started taking some "baby steps" by cutting out my Saturdays of working for right now. One less 56-mile commute in the week!

Dany, I do think of you often, and I am all too aware of the impact of stress. And after today, well...I'm still going to be shaking from this close call for some time to come. I'm very grateful that I wasn't there for so many reasons. But I know that many of my market friends will be suffering from PTSD for a long time to come. .

I need to find an internist, but the appointments aren't available until end of August/September. Today I was hoping to get my cardiologist boss/friend to try to get me in to someone...but then the events of the day overrode that. We overlook one of the hospitals that took victims, and there was a steady parade of ambulances. We're all pretty shaken!

Kim and Linda (and Cynthia): Hormones probably are a part of the equation, although I have to be so careful. I did cautiously increase my estradiol but backed down without much of a change in anything. I don't think this is endo, guessing is either adhesions, a hernia with some intestinal involvement, or some sort of ovarian "scrap". Kim, I think of your intestinal issues often, especially as I met a woman not too long ago who suffers from the same sort of condition. She actually was diagnosed with hypo-motility syndrome, and has sought help all over the country without much success. They just don't seem to have an answer for how to treat it, and there's little in the literature about it.

This just feels, well, mechanical, like the intestine is fastened to the abdominal wall and/or bladder in some way. My right sided leg weakness could be due to the neck discs getting worse...but I've had this before, once with my pregnancy (I was HUGE thanks to toxemia) and once when I had the "alien" that led to my hyst.

Hopefully I can get into CT without having to wait a month or more, and finally get some answers. C-T will be a bit tricky, as I had a delayed reaction to the contrast the last time, but I think it's worth doing (even with the oral contrast and its inevitable diarrhea). I just think that will answer so many questions...

Anyway, thanks for the s -- they are badly needed especially today. I don't know if I can easily eat the produce I bought today, not knowing if the people who sold it to me are among the injured. And, even if they were not, the mental injuries that were sustained today will last a lifetime...all these people are in my prayers.

Thank you all, my friends!

Unread 07-17-2003, 03:08 AM
Am I paranoid? Or just cautious?

Oh my goodness, Audrey...what a mire of issues you're having to deal with! s

I can only imagine. I've recently been dx with a mildy herniated disk (L4-5), which is also dessicated (a term I'd only previously used to describe coconut...). I can only imagine the pain you're in....I'm just praying and hoping you get relief soon.

Hang in there - you've provided amazing support here for a long time, and it's time to return some of that support right over to you!

Many s - you're in my thoughts


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