At this time in our story, the school year was winding down to an end. I was coming to the end of grade 11 (which really isn't that great a feat), and Kyle was coming to the end of grade 12. This, of course, means graduation, and diploma exams. I was less interested in his diplomas (I'd actually done my Chem 30 diploma in the Fall semester, after an MRI, so they were really nothing new), but I was pumped about his graduation. It's not every day that your only sibling graduates. I used it as something to look forward to, to keep pushing towards even though I was still in pain. Obviously my world doesn't ever work out how I want it to though.
I was about 7 days into my steroids for the meningitis when my knees started hurting. They were too bad, kind of like how it might feel if you went running, except instead of running at a nice pace you stomp each step for an hour, and your knees start saying 'eff you' for the next couple of days. By this point I was used to a little random pain here and there, so I thought nothing of it. Sleep that night was really uncomfortable, the pain got a little bit worse and I was squirming like mad trying to get in a spot that would make it either hurt less or not make it hurt more. I finally did, and got to sleep. When I got up in the morning, it was even worse. I had no idea what was going on, but I am fantastic at denial, so I decided I was fine. I got through the day and went to bed that night.
That night was terrible. Sometimes people will say they were up all night doing stuff, and usually that's an exaggeration; they probably got to bed at about 3 or 4 am. I was up all night in pain. I've always had insomnia, so when 2am rolled around and I wasn't asleep I wasn't very worried. It was the same as the night before, but worse. There were no positions where it didn't hurt. I stopped looking at the clock after 2, because that always makes it worse. I didn't realize how bad it was until the sun started coming up.
After I saw that the sky was pretty light, I chuckled to myself. At this point I had already realized that I never seem to do things the way normal people do them. I shimmied to the edge of the bed and leaned over the edge. I used my arms to lower myself to the ground and started crawling to mom and dad's bedroom, dragging my legs behind me (which was probably better than dragging them in front of me). I knocked on their door, they said come in, I opened it, dragged myself in, and said 'Hey guys! I think we might need to go to the emergency room!' We chatted about it for a minute or so, and then we all went to get dressed (I needed a little help).
We got to the hospital and got put on a bed immediately, either because of need or because there was pretty much no one in the emergency room at 8am. They put some liquid Ketoralac in me before they even started an IV. Then I got a bunch of tests done. I'm not going to really talk about this part, because this is really the only point of my story that I've actually disagreed with what they did.
Eventually they realized something happened with the steroids. To check, they asked me to have a bone scan. I don't remember how long it was between the emerg visit and the bone scan (two days maybe? Actually it was probably the same day) but soon enough mom and I were waiting in the hospital for the bone scan. First they have to put the radioactive dye in you, and then you wait a half hour, and then they scan you. Mom rolled me in in a wheelchair (I still couldn't walk because my knees hurt so bad), and they gave me the dye. We rolled out and went to the cafeteria for a half hour. When we went back they told us they had to wait. Apparently the girl in front of my was refusing to get her dye because she'd had an incident where someone had stuck a needle in her neck, making her justifiably afraid of needles. We sat down on a couch outside the room (by we sat down I mean mom sat down, and I transferred from the wheelchair to the couch), and Mom tried to get me to go to sleep while we waited. Eventually they called us in.
I got to lie down on this huge table that had a massive camera over it. They gave mom a chair beside it and put some cartoons on the TV (the perfect thing to occupy a 16 year old's mind). And then they taped my legs together. If you've seen me now (and I know some of you haven't), if you know something is hurting me you'll see me squirm. I try to be subtle about it, but I tend to crack my joints or move as if I'm stretching a muscle when I'm hurting. When they taped my legs together and told me not to move, it was as if a tiger was seeing if my face would fit in it's mouth without me being allowed to flinch. Mom was holding my hand, I was trying to hold back tears...it was terrible. The camera was being moved around my body, and it took an insanely long time. At the end, I was exhausted, and both Mom and I were in really low spirits. Whenever she sees me in massive pain it gets her down.
We were rolling back towards the emergency room when mom sees a computer on it's screen saver. She's like 'oh look!' and points at the image of two cute kittens hugging or something. At the same time, we both go 'awwwwwwwwww.' Then the image changed to a picture of some horses. At the same time, we both go 'oh.' Then we both start laughing. Like mother like daughter!
We roll into the emergency room and wait. Some doctor, I can't remember who she was, some on call person, comes out to talk to us. She tells me that I've gotten a rare side effect of the steroid called Avascular Necrosis. This is where the blood flow to the head of the joint has stopped, causing the bone at the head of the joint to die. Eventually, the body eats the dead bone, which can make the joint collapse. The "hot spots" that showed up in the bone scan were my knees, hips, and shoulders. I can tell you now, after having had it for a few years, that I also have it in my elbows, wrists, ankles, some fingers and some toes. The pain feels like bone on bone pain, or like a person sticking a needle into the raw part of the bone. That's actually pretty accurate, the feeling comes from the dead bone rubbing against the live bone I think. If you've never had the pleasure of that happening to you, imagine the feeling of someone pinching a really small amount of skin, you know the tiny amount that hurts the most? Then imagine that inside your joint. It's a permanent thing, and they don't have a cure. She leaned in and told me that there's a chance I won't be able to walk. Cue the world crashing down around me.
She left and Mom and I sat there in shock, looking at each other. This was pretty bad news. Then my neurosurgeon comes trotting down the hall with a big smile on his face. He says hi and starts joking around with us. We told him the big news. I don't really remember how he put it, but he made it seem nowhere near as serious as the other doctor had said, and made it pretty clear that I was going to be walking again pretty soon. He asked where it hurt and I told him, right under the kneecap in both knees. He goes "here?" and squeezes my right knee on either side of my kneecap. I half laughed, half died (oops I mean cried), and he starts laughing, and mom goes 'stop!' In hindsight it was pretty funny. He told me he was refering me to an orthopedic surgeon in the children's. In slightly higher spirits, life went on. I still had the headache, all day every day.
I'm going to take this moment to tell you that as of right now, I have nothing against my doctors, and I didn't, don't, and never will want to sue these people. It's true that there were complications with the brain surgery that caused my spinal cord to be inflammed, but that was my own body that caused that complication, not the doctor. It's also true that I got a side effect that they did know about and didn't tell me about, but had I not taken that drug, I'd be dead. They weighed out the need for the drug against the possible severity of the side effects, and the need won. I'll never feel resentment for that, and I hope that none of you will either. When it comes to my health, if I'm in a do or die situation, I'll almost always take the do.
The story continues...
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