We've started tapering my prednisone dosage from 100 mg a day to 90. Considering that weaning off prednisone is known to cause serious mood swings and irritability, I'm guessing my mood today has been caused, at least in part, from my body saying "yes" to drugs. But of course, that's not the only reason I wish I could get a do-over on today. Oh no.
My damn CK level spiked. Again. It'd been hovering around 3000-3500 for weeks, but the blood test on Tuesday revealed that it shot back up to 5400. It could be just a fluctuation, it could be that the medication isn't working as well, it could be that my inflammation is accelerating along with damage to my muscles, or maybe I've been misdiagnosed. Not every auto-immune disease has been named yet, after all, and polymyositis is already an officially labelled "rare disease." All we can do is just sit and wait to see if the rituximab finally kicks in, or try yet another prescription to see if that does the trick. And you know what's going to be going through my mind the entire time? "What if I'm one of the unlucky few who still dies from this?" Again, that's possible: myositis diseases can cripple all of your muscles, including the ones you need to breathe and keep your heart beating.
On a rational level, I know the odds of it getting that bad are virtually nil by now, but since when has fear been a rational beast? Oh no, that son of a bitch has latched onto my gut and won't let me shake the thought that maybe we can't, or won't, get this disease really and truly under control in time to save me from it.
To top that off, I had a wheelchair skills assessment today. Being put through my paces like that just made me feel weak and helpless. My arms are still weak enough that you can seriously trap me in a room with a two-inch high barrier. I know I'm going to get stronger, but it's incredibly frustrating to have what you can't do pointed out to you.
We've also made the decision to move me to a long term care facility. It's only temporary, thankfully, because I just need somewhere safe and accessible to stay until my disease settles down enough for me to make some major progress. However, the rules here say that once that decision has been made, then therapy has to stop. We've been assured that they'll at least do maintenance therapy with me (ie: stretching me every day so I don't lose what range of motion I've gotten back), but that's all. My doctor is going to advocate for me to continue receiving therapy while I'm waiting for placement, though, because I actually am a special case. I'm going to get better; we're just waiting for my body to get through this tough phase. What worries me is that the wheelchair trials may be stopped, too, and I don't own or rent a chair. Insurance or ADL will help us with that, but I'm a bit worried that I might wind up stuck between chairs.
Bedridden. Again. Getting weaker and weaker with every day from lack of exercise, and all because one place couldn't lend me some wheels while we wait for a set to be made/become available, or simply because paperwork takes a long time to process.
Argh. Okay. Okay. I gotta get my mind off this. Gotta try not to dwell on the negative for the entire day. Okay. How about some positives instead?
We've been practicing sliding board transitions for a couple of weeks, and today's was definitely a bit easier. This means that I'm that much closer to not needing a mechanical lift to get in and out of bed, and that much closer to not needing help to get out of bed/my chair. I can also lean forward enough to rest my elbows on the table, so eating just became a lot tidier for me. If I drop something now, it goes on the table rather than my shirt.
My trial power chair also came in today, and I'm not bad at driving it. I'm still not allowed to take it around on my own just yet, but that should happen soon. Once I'm allowed to take it outside on my own, then I'll be able to just take off on short trips outside when I'm bored. I never thought I'd look forward to using a power chair, but after trying (and failing) to get up a ramp? Oh yeah. Give me a motor, baby.
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