Note: Long and whiny and no reply is necessary. It just helps to vent once in a while.
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Things aren't going very well here in Boston. I've been on a steep downward spiral since August, and my docs have been unable to do anything to slow it down. On my bad days, I cannot walk to the bathroom without assistance, and the bad days are getting much more frequent. Over this weekend, Bob is installing a gate (a sturdy one) across the front stairwell, because I'm so unsteady on my feet that we're all afraid I'll fall, and with my osteoporosis (also markedly worse according to the latest bone density test), I'd break my hip or something. I've also asked that Bob install hand rails down our hallway, and I wasn't kidding around.
My latest X-rays show that the spine never did much healing beyond the original post-surgery X-rays. Happily, that also means I don't have to have the surgery again, since I won't heal and what's the point? I tease Bob and the kids that if someone tail ends the car, my head is going to fall off and roll down the street. (And that they should call one of those TV lawyers and collect some big bucks if it does) The spine, shoulder and arm are still very painful, and I didn't regain the full range of motion. I can't carry anything much in my left hand anymore, but I've worked out one handed bead weaving. It's slow, but I manage.
Yesterday I had an arrhythmia episode that caused me to faint while I was lying down. That leaves me in a bit of a quandary, since lying down is what I usually do to regain consciousness. The episode left me so wiped that I slept from 8 a.m. until 8 p.m., (after my night's sleep) with only a few short wakings to get a drink, then I went to bed for my usual two hours at a stretch before the pain wakes me. I can still bead for short periods, as long as I'm completely reclined in my chair.
My cardiologist and pulmonologist agree that I am not a candidate for any kind of transplant - I used to be too well for one, and now I'm too sick. The best we can hope for is to slow down the deterioration. At this week's appointment, my pulmonologist told me that my lungs were "semi-functional, and that's a kind assessment."
On a good day, I can go for a ride with Bob and perhaps go out to lunch, as long as I take a good long nap before and after. I have to use a wheelchair about 75% of the time when we're out of the house, and I usually have DD, Bob or P/T D supporting me when I walk. If I'm volunteering at the school, I sit in my chair and the kids come to me. We're considering taking the Bug off the road, since driving is now pretty much totally out of the question. (It's insured through January, and I'll make a final decision then)
The kids and I were listening to Alanis Morrisette, and I commented that her definition of ironic was more than a little off. Naturally, they wanted examples. I told them that I'm still gaining weight, even though I get too tired to eat (how whacked is that? eating exhausts me), but my heart is too weak to get rid of all the excess fluid. Gaining weight on fewer than 800 calories a day is definitely ironic. Becki - I'm drinking nutritional drinks (ugh) to make sure I get the vitamins/minerals/protein I need, as well as taking Flax Seed oil, MSM, a multivitamin and calcium. (The doc okayed that regimen, but I was warned against any kind of herb. Ever since I went into anaphylactic shock from Tom's of Maine toothpaste, we're all very wary of plant products)
BTW, the cardiologist and I are trying to find some kind of potassium sparing diuretic - if I get even a little low on potassium, I have arrhythmia problems, and taking potassium tablets isn't helping. Bob checked every brand of juice at the market, and I now drink the ones with the most potassium per serving. I don't do bananas: they have to be green, but not too green, and I trust no one to pick them out for me.
If I owe anyone email, snail mail or phone calls, please forgive me. It's just not happening right now, although I remain hopeful that things will get at least a little better sometime soon. Maybe when we get a frost, the allergies will stop triggering the asthma and I'll feel a little better.
Thanks for listening to me gripe and moan. I'd get up for a little whine with that, but it's too much of a PITA.
Kathy N-V