Being home from the hospital felt great. It felt like it had been years since I slept in my own bed. My head still hurt really bad, so I had to have extra strength Tylenol every four hours and extra strength Advil every six. Mom would make sure, and would literally wake me up at night to give me some. This may sound excessive, but if I didn't have it I would wake up from the pain and have to wait for more pills to kick in. I would nap a lot.
School at this point wasn't really feasible. I was still in grade 11. I was really lucky they had those workbooks in most of the classes, because I was able to do most of the classes at home. The school knew about my situation, so my teachers were all extremely understanding and were willing to help me finish the semester. Right when I returned home and found out that I wasn't able to finish school, I was pretty upset. I wasn't going to be able to see my friends everyday. I'd already gone almost two weeks without seeing them, and I was needing some support from them. So I tried to get some of them to come over.
First a couple of guys that weren't in my main group of friends came over. Before they got there, I was really wanting to feel up to seeing people. I got dressed, put my makeup on, everything. Then, about two minutes before they showed up, I threw up again. It was the same thing as always, where I had to flex every muscle in my body in order to handle it, and then after I was extremely exhausted again. Mom put me in her bed and laid me down with a cold washcloth on my forehead. When my friends got there, Mom told them to wait a few minutes in the living room because I wasn't doing great. Then she helped me down the stairs (which I almost fell down). They weren't here for that long, probably because I looked like death on a couch, and after they left I had a long, awesome nap.
A couple of days later, two of my best friends came over. They brought a couple of things to make me feel better, like a giant card that people signed, and a six pack of mini-cokes. It went well, until the end where they told me that I had gotten too skinny and looked like a skeleton, so they didn't want to see me anymore because it scared them. That was a pretty big shock to me, and that's actually the reason that I find it really hard to get close to people now when I'm going through health things. These people were my best friends, the ones who promised they'd be there for me, and they told me that they were scared of me and didn't want to see me anymore. It hurt worse than the headache.
Once again, I'm extremely happy for my family, and for the friends of my family that supported me so much. I'm not going to name names for privacy reasons, but I really couldn't have done it without all these amazing people by my side. My parents and brother (Kyle) and I all got really close. I remember Kyle coming home from school and playing guitar with his amp on while I was sleeping in the room next to him. I'd always be like 'aaaaargh!!!', but I found it a little funny, and he was actually good at it so it wasn't so bad. He could have been trying to learn to play the violin. It's the small victories. When I would get upset and cry, at least one of them would always be with me, crying with me and trying to make me feel better. We even stopped eating fish, because for some reason the smell of salmon cooking would make the nausea even more pronounced. Thank god that didn't last long, because my family cooks a mean salmon.
Shortly after I got home, my mom noticed that I was still throwing up a lot, and was just generally not doing well. This is usually how it works for me; I don't ever notice if I'm looking terrible or am doing worse than I should be, someone always needs to tell me. So Mom decided we were going back to the hospital.
We walked back into the Children's, and instead of taking me to the emergency room, Mom dragged me right into the neurosurgery clinic and told them that my surgeon needed to see me. They said okay (because no one will get in Mom's way if she's on the warpath) and sat us down in the room. This was a pretty funny appointment, because I mentioned the bed being kind of high and Dad tried to step on the little thing to make it go down. Instead of going down, it made this huge bang and did nothing. Dad then tried to figure out what went wrong and tried fixing it (I get this from him, by the way). We had to make him sit down so I could get on the bed before the doctor came in. Once he came in, he took one look at me and said "somethings wrong." He tried to take my temperature, but couldn't work the thermometer (it was also pretty hilarious). Eventually they just decided that it was time to admit me and get this fixed.
I was put back in the neurology ward of the Children's (unit N, I think). They had to start an IV on me again. To do this on kids, they sometimes freeze it with topical freezing, but it can make the veins hide, so I didn't get it this time. Instead, I got a warm towel wrapped around my arm for a while. They came in and tried to start an IV. They started trying in my hand. Every time they put the needle in, the vein would roll or dive, and they couldn't find it. They tried three times before they decide to wrap my hand again and call someone else (they can only try three times a person). That person came in and tried it on my hand closer to my wrist. They got it! She asked if it felt okay, and I said yes, so she taped it and walked about. About five minutes later she came back and I told her it was a little sore, so she unwrapped my hand and my wrist looked like a balloon. The vein had blown. They took it out and got ready to try again. While they were setting up, I asked if it was okay if I slept while they tried to put it in again. The nurse looked at me like I was crazy, but said yes. One the sixth try, the IV finally stuck and I was allowed to sleep.
The next day, my surgeon and another guy came in and told me I was getting a spinal tap. To do a spinal tap, they have to freeze your spine, and then put a tap in between a couple of vertebrae and let the spinal fluid drip out. If the guy misses, it hurts like sticking a giant needle in your spine without freezing. Probably because that's what happens. So we got all prepped. I had to push my back out to separate my vertebrae as much as possible. I had to put my feet on Mom's feet, which were on the bottom bar of my lunch table tray (I swear I'm shorter than half the kids in that place) and push as hard as I could to get them separated enough. He put the freezing in first. I'm not sure how to describe how painful it was. It hurt at the spot he put it in, and then as the fluid moved in me the pain spread up and down my back, and all over my head. Once that kicked in, I had to push back again so they could tap it out. Thank god, he didn't miss. My legs were shaking from pushing so hard for so long, because it takes about a minute to tap it all out. I'm sooooo happy I couldn't see the tap, because Mom said it literally drips out and that just sounds disgusting. They went off and tested it. It came back saying I had non-bacterial meningitis. This happened because my spinal cord became inflamed.
As I was there, I was told I couldn't take Tylenol or Advil because it hid my fever. After not taking it for a few hours, my temperature went up to 39 degrees, which is pretty close to hyperthermia (the opposite of hypothermia). We had cold washcloths papering my face, and we got a couple of fans brought in to cool me off. I, of course, looked freaking awesome. I was given a steroid, Decadron, to help get rid of the meningitis. After my fever went down, I went home and felt about a zillion times better. I had more energy and I wasn't throwing up as much, and my headache was actually feeling better (though it didn't go away completely). I was put on a 21 day round of this drug, and you have to ween up onto it, and then ween down off of it, which is included in the 21 days. At this point it was about half way through May of 2004.
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