Wednesday, March 26, 2008

The year of pain.

Well, I wanted to write a year-ending/new beginning post way back in January, when the new year officially began, but I've come to the realization that starting around December I head into brumation (the reptiles have it right!) and don't really come out of it until the start of March or so. Witness the pattern of my last 5 years or so of blog entries, and you'll notice big gaps in posting frequency, the presence of pale, humorless entries during my time of withdrawal, depression, brumation. (I wish I could be reptilian enough to not eat, not move much, and just drink a little water from time to time while waiting for the warmth and light to return to my life.)

So here's my philosophical year-end review. If you're at all medically squeamish, just stop here. I won't tell. ;-)

I call 2007 my Year of Trying to Die.
My Ulcerative Colitis had come out of remission in 2006, and I went to my doctor in SF, she did a colonoscopy, and prescribed me steroid enemas and a triple dose of asacol. (Enemas are evil. That's all I'm going to say on the matter.) (Have I mentioned I have what my friend likes to call a "feces issue?") By December or so, I was still hurting A LOT, but she ran a blood test and found no infection from the results of the blood test, and declared me well, except for some "irritable bowel syndrome" brought on by the "Inflammatory Bowel Disease" (UC--just so you have all the terms) and prescribed me Lomotil, an anti-diarrheal.

So, through December and January, though I was feeling worse and worse, and it got to the point where whenever I ate anything I would be in the bathroom constantly, I didn't call her back since I was "cured." In February of 2007, my GP told me he thought since my symptoms were worsening, that I obviously WASN'T better, and would I go to someone local for a second opinion. I agreed, and said specialist decided to schedule ANOTHER colonoscopy (can I just say here, how bloody unpleasant these are?). He found that I had, indeed, active disease 20 centimeters up my descending colon. Now, it was obvious that the Asacol was not working, and I would NOT do the ever-so-painful steroid enemas again, so he decided that before we brought out the so-called "big guns" of Remicaide or Humera, that we should try oral steroids.

Mind you, I was diagnosed as a bi-polar 10 years or so ago, about a year after the brain surgery (old history--it's just that it's all daisy-chained together, so if you don't know the past you won't understand the present :-/) and that's when it became known that steroids were contraindicated in my case. In other words, steroids are a BIG BAD thing. (I ended up in the hospital with Steroid Psychosis after the surgery, because they used megadoses of them to try to shrink the tumor and compact the tumor to make it easier to remove. Or something.)
Nothing like an extreme psychotic episode while dizzy, disoriented, and partially deaf, to really make your day. Week. Year. Life.
But, I digress. back to the gut.

Since a new form of oral steroid had come out that was supposedly 80% absorbed in the liver after it did its work (and so kept from being "systematic"), Dr. Denigris put me on that. I think TTK and I knew, even before a week had passed, that this was Not A Good Thing. Not only was I weak and in pain, I was snappy, vicious, (more) unpredictable, and generally heading psychotic on the little red and brown steroid bus. This was now about March of 2007, and I was so exhausted and weak that I had to quit my classes a the JC. I was pretty much housebound at this point, and my food options had narrowed to about 8 things. Milk, milk, and more milk, with protein powder and Ovaltine (we call them "Provaltines), baked potato, rice, and fruit. Nausea was a constant companion at this point, as was pain and depression. Thanks, steroids, and body!

I tapered myself off of them, to the dismay of all my doctors, and refused to take them again, EVER. Which now meant that we had tried all the low-level options, and we could now press my insurance company to cover the Remicaide (ahh, now you see! It's all about the money!). Considering the stuff is about $600 a vial, and I need 4 at a time, plus the $5K per visit at a specialist clinic, it's understandable that money would rear its ugly head.

By June I had lost about 25 pounds, and was almost completely homebound--in our filthy little hovel, since I had so very little strength to clean or even walk across the room.

Paperwork still processing...July, August...
September. I was down 40 pounds from 190, to 150. I was weak and dizzy and depressed. I was also FINALLY approved for the Remicade.
First infusion was in September. Second one was 2 weeks later, third one is was the 6 week mark, and now it's every 8 weeks for a year.
By October I was having no blood, no infection/mucus/icky bodily functions 5 times a day, basically all FABULOUS news.

I started gaining a little bit of weight even--stabilizing at 157.
I was still exhausted though, and I asked my GP for a blood test. Seems we hadn't done one since March...turns out I was SEVERELY anemic--to the point that my doctor said that if I was 10 years older he would have insisted I get a transfusion.

So I was put on iron supplements, 3 times a day. My energy started picking up, to the point that we could actually go down to family for Thanksgiving in November, after my infusion.
We went to see ttk's grandmothers and family for Christmas (we actually flew out xmas day, to Texas, which was quite surreal) next infusion was January 20th, and the most recent one was March 12 or something.

In January of last year, we were given a gift of stock from ttk's parents, and we decided we could finally afford to buy most of a house (and get a loan for the rest!) the time we sold the stock, I was already heading down so far health-wise, and we were only able to go out and look twice before I gave up with the body battle.

Until you've been seriously ill, you can't really know what it's like, IMO. Just like I'll never know what pregnancy and labor is like. I really withdrew and closed off--I think I had TWO people come and visit me the entire time I was housebound. None of my family even came to visit me. It may be because I never really let on how sick I was. Maybe. I mostly blame the pathetic littleness of our current house, since there's not even any room for company to SIT since either end of our couch functions as TTK's desk, and my desk. Mostly.

So, that was my year. Our cats Needles and Tasha both died--the former from old age, gently, and the latter from a violent accident. Two of my favorite little chatty ridiculous chicken died--one crushed accidentally by me knocking over a piece of plywood, the other by ttk accidentally dropping a bale of hay on her. So many deaths. Sad thing is, I can't remember if it was last year that both Fizzbnn and Atlantis died. The year before it was Daisy, Azrael, and FatBoy. All ferrets...all who I promised would have a great room to play in when we moved to our new house--this place was supposed to be a temporary stop before we bought our own place. We moved in here March 2002 ! We figured we would be here for a YEAR and it's now been SIX crowded, crude, dirty little years.

My goals for this year?
Move to our new place without losing my mind, melting down, or hurting any of my friends and family who have offered to help.
Start a garden and start getting regular exercise.
Figure out (and maybe solve?) this damn insomnia bullshit--perhaps by going to a sleep study center.
Get all my critters into nice cages.
Throw a party or three!
Purge excess baggage.

There's probably a lot more that I could write, but for now I'll leave it here.

ps the spell check on blogger doesn't recognize the word "colonoscopy." Or "brumation."
Sigh. The dumbing down of America.

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