Alright. Let's do this. As my friends and family know, I've been in one hospital or another since May. I know a lot of you have a lot of questions about what I've got and how I'm doing, so I'm starting this blog to help keep everyone in the loop about my progress. Since it's my blog, I'm also going to be sharing a few of my own thoughts about what's going on. Be warned. I may get a little raw from time to time.
To answer the big question: I have a fun and rare little auto-immune disease called "polymiositis" (sometimes spelled polymyositis. I don't know why it has two spellings, either.) What it means is that for whatever reason, my immune system decided to attack my skeletal muscles. As in, the muscles you need to do things like move and breathe. Oh, and there's no way to prevent or predict any auto-immune disease; they can be triggered by something as harmless as a cold or just crappy genetics. They're also often difficult to diagnose, and tend to just get progressively worse without treatment. Yeah. Now how comfortable do you feel shaking the hand of that guy who you just know didn't wash his hand after he sneezed into it?
As far as I can tell, this whole mess probably started in late March. Both my knees started to ache. I'm not deluded, I know I'm quite overweight; so, I didn't think too much of it. Achy knees come and go when you're heavy, and besides, I'd spent most of the previous night on a friend's carpet either kneeling or sitting since he didn't have any chairs for our little get-together. That's pretty hard on anyone, really. I'd also just started on an anti-depressant called Celexa to help deal with my worsening anxiety attacks and oncoming depressive episode. The side effects for that drug just so happen to include pain, so I figured it had to be the Celexa when the knee pain didn't go away after a couple of days. Still no big deal, right? I just took some Tylenol and mentioned the side effects I was having to my doctor the next time I saw her.
Well, the pain not only started to get worse, but it began to spread into my upper legs and my knees started to get a bit stiff. I thought it was still just a side-effect of the Celexa, so my doctor switched me to another prescription in the same family of drugs. It made no difference. I was starting to have trouble with stairs. Not serious trouble, but it was taking more of an effort to get up them, and I was tiring out faster. My legs were starting to become really riddled with pain, too; bending my knees for any reason, whether to lift them onto a stair or just to sit down, began to feel like I was tearing the muscle in half.
I managed to finish my school semester, but handing in my final project was an ordeal. I managed to drive myself there. Driving was fine. Getting out of the car? A little painful, but not too bad. Tracking down my teacher? Exhausting and painful. I had to go up and down several floors several times to try to find him because everyone I asked knew he was in the building somewhere, and they'd tell me the last place they'd seen him. By the time I dropped off the project, my legs were so exhausted I felt like I might collapse right then and there. Luckily, I managed to limp back to the car and drive home safely.
Enter May, easily one of the very worst months to strike my household. We were starting to get a little worried about my chronic pain at this point, and my doctor was beginning to send me out for blood tests and the like since it was obviously not the Celexa. My legs just got weaker and weaker, and my shoulders began to go the same route as well. I lost the ability to get up the stairs safely on my own. I got stuck in chairs. I got stuck in a public toilet. I got stuck on the couch. For a while, I had to plan my bathroom breaks very carefully because I couldn't get out of a chair or off the couch until someone else was home. Dad bought me a power lift chair so that I could at least get up on my own; Mom bought me various implements to make basic tasks like picking things up easier. Both of them helped me up the stairs to bed every night, offering a hand to steady me at first, but having to pull me up one step at a time as the disease got worse.
We tried everything we could to halt the progression of it: eating healthier, getting light exercise, stretching. The last two seemed to help for a bit, but the next day I was always a little worse. A little weaker. In a little more pain. My doctor was doing everything she could, too, including booking an appointment with a rheumatologist for June 10. She'd never seen anything quite like this, especially not in someone my age. A twenty-something shouldn't be struggling to walk or stand up, and they sure as hell shouldn't be completely incapacitated when they trip and fall. And that did happen. Unless you've been in a situation where you've fallen and been completely helpless to even get yourself on to your knees, you really have no idea how terrifying that is. It just hammers home how bad things have really gotten, how helpless you really are.
I'll never not be grateful to my parents and my fiance for helping me out during this incredibly stressful time. By the end of May, I had gotten so weak that I could no longer dress myself, get out of bed, or get off the toilet by myself. I was becoming quite depressed and anxious as well; I'd lost my independence. I felt robbed, even cheated, and we didn't know what was doing it. I could see the fear and stress taking its toll on my loved ones, and that just fed into it. I became angry even as I began to resent myself. I saw myself as becoming an unfair burden on them, forcing them to strain themselves and worry. I felt like maybe I just wasn't trying hard enough, like maybe this was somehow my fault for not walking just that one extra lap around the main floor, for not trying just one more time to stand up. My anxiety, which normally just makes me feel uneasy, got worse: I was hyperventilating for several minutes during an attack.
On May 24 around 11 pm, I fell backwards while attempting a practice step and hit my head. Thankfully, there was a rail nearby that I'd grabbed, so it was a very slow fall, but it was a fall nonetheless. Dad and some family friends were home, so they immediately tried to help me up. My back and hips had become so stiff by then they literally couldn't sit me up properly, and I was far too weak to stand up from the floor. So, they laid me down and called Mom at work to let her know what had happened. When Mom got home at 11;30, she took one look at me flat on the floor and called an ambulance.
It took 7 hours of waiting and tests (including a spinal tap; that's a post for another time), but I was finally admitted into the ER. That's where they discovered that not only was my Creatinine Kinase level astronomically high (a normal level is between 0-400. Mine was 12 000), but there was so much crap in my blood that my kidneys were at serious risk of shutting down from trying to filter it! My urine even turned a solid pink, looking more like Pepto Bismol than pee. The hospital immediately began flushing my system with saline, which thankfully saved my kidneys. They also began, to my understanding, sending out my case to every other hospital in the hopes that someone would recognize the symptoms. Thank the gods, someone did: a neurologist at another, larger hospital. I was given IVIG at this point in an effort to bring down my CK levels, and quickly transferred to the neurologist's hospital.
I was subjected to multiple tests here, too, from CT scans to a muscle biopsy. Yes, I will talk about every one of those later. Within about a week, they had their diagnosis: polymiositis. I'd never even heard of it, and neither had most of the nurses and nursing attendents on the unit. It scared me, a little. I went from healthy to suddenly having an auto-immune disease that I'd probably have to deal with for the rest of my life. The damn thing had actually almost killed me by clogging my kidneys with my own loose muscle fibers. I still feel like I'd been pulled back from the brink. But things began improving from then on. With the IVIG, my energy levels began to return to normal. When we started on some prednisone, the pain in my muscles disappeared and my strength began to return.
We started seeing small improvements every day: the colour in my face returned, my voice became stronger, I could lift my arms off the bed again, I could raise my knees a little higher. I still couldn't walk or stand, but I was getting better. My neurologist, soon accompanied by a rheumatologist who had experience with this disease, was extremely optimistic with my prognosis. I was going to get better. I was going to be able to pick up my life where I left off. As my condition improved, I was transferred to a rehabilitation hospital to really begin my much-needed physio therapy.
I'm still here now. I'm still seeing small improvements, small victories every single day. Something is always getting easier, or something comes back. I'm still wheelchair-bound, but that chair gets easier to use all the time. I still have bad days, of course, but the good far outnumber the bad. And I know they're going to keep outnumbering the bad; this, as well as all the love and support from everyone around me, is going to keep me going through the next year. We don't know when I'm going to be able to stand or walk again; it could start to happen in a month, it could take a few years. But you know what? That's not that bad. I'm going to be able to walk again, and it's going to be relatively soon. I'm really damn lucky that polymiositis attacks the muscles, because muscles can grow back and you can strengthen it. There is a chance that I won't get it all back, but it will come back.
Until then, I'm going to take this one small step at a time, and I'm going to cherish every little victory along the way.
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