Jan7, 2013

I've never been afraid of my diseases. Sure I've been angry, depressed, and everything in between, but never scared. Not until recently. This post is kind of a downer and I'm sorry for that. In order to talk about why I am scared I am going to talk about my past. Most of you reading this don't know much about it, in fact most of my friends don't know about it. It's not that I don't want them to know about it, if they ask I will tell them, but it's not something I just bring up and start talking about.

When I was ten months old I was diagnosed with Muscular Dystrophy. The doctors weren't really sure what type, they often said different things. It was finally decided that I have Spinal Muscular Atrophy, but there are four types of that and they never officially said which type I have. They were confused because I could sit up on my own once someone sat me up, I could hold up my head, move my arms completely "normally", and even roll over, but I could not use my legs at all. I could move them but I couldn't even crawl. As the years went by it got harder and harder to lift my arms up over my head to the point where I couldn't do it anymore, I can't roll over by myself anymore, well I can roll over to my back if I am on my side sometimes. I can still sit on my own once someone helps me up, I can still hold my head up, and I still can't use my legs.

When I was a baby I started getting sick. I had pneumonia more times than I can count and have more memories of being in the hospital as a child than being out. I honestly don't remember a whole lot of the sick part, I think I blocked most of that out. I have been on vents numerous times, and have been extremely sick. My parents were told I wouldn't live past two, then it was four. The only "bad" thing I remember from the hospital was how many times they would have to stick me with needles to try and get an IV started. I remember one time in particular being so bad my mom had to leave. I was very young, there were multiple people surrounding me all poking me with needles trying to get one started, I was crying of course and screaming. I remember screaming for my dad, who stayed in there, asking him to help me get them away from me. I was so confused on why he wasn't helping me. I'll never forget the look on his face, or the pain and trauma I went through that day.

As bad as that was though, I had some really good times in Riley Hospital. I basically grew up there, as I said I have more memories of being in there than out. I remember on Sunday evenings, when it was pretty empty, going down stairs with my dad to the main lobby. He would let me go up and down the glass elevators as much as I wanted, he would get a manual chair and we would race up and down the halls, we would go into this room where there were statues and stuff and play hide and seek, he would take me upstairs to see the giant doll houses. I remember always wanting to go to the little library they had and the play room with all the toys, even though I usually wasn't allowed to because they were afraid of me getting more sick from the other kids. They would always bring me games and coloring books though. The hospital is where I got my imagination and my creativity.

When I was four, I kept getting really bad. They weren't sure how much longer I was going to make it. That summer I got to "make a wish". I went to Disney World with my mom, dad, and Megan. It was amazing of course, and I do actually remember bits and pieces. We also visited my grandpa while down there and went on his sail boat, while docked, and I remember seeing dolphins. I remember it very much. The sun was starting to set, and the sky was kind of orange. I didn't see the whole dolphins, just their fins as they went back under water and they looked like they were shining. I thought they were mermaids.  Now before you think I'm crazy remember I was four years old, had just spent days at Disney World, and The Little Mermaid was my favorite movie. But what was truly amazing about this trip was that I was actually healthy, and from then on I didn't get near as bad. Yeah I was still getting pneumonia quite a bit, but no more vents, no more staying in the hospital for a month or two at a time. It was to the point where my parents kind of knew how to prevent it or at least how to treat it so that it wouldn't get so bad. They both ended up going back to school to be respiratory therapist because of all this.

When I was seven I had my tonsils removed because I kept getting strep throat which would lead to a cold which would lead to pneumonia, or something like that. I then had surgery on my back. I had two medal rods placed in my back because of my scoliosis. That was the last time I was on a vent, and I was only on it because they were worried about putting me under for so long. I was only supposed to be in the hospital for a couple weeks, but toward the end of my recovery I got pneumonia again...shocker! So I was in there for a while longer, it ended up being over a month.

I got pneumonia multiple times after that but never bad enough to go to the hospital. At that point my parents were respiratory therapists and could take care of me at home. In a sense I missed the hospital, not that I missed being near death, but let's face it I missed being spoiled and I missed the fun times I did have while in there.

When I was fifteen or sixteen I broke my first bone, that I knew of. I had hurt myself numerous times before, especially my ankles, but never went to the doctor for them. This time it was my arm. I knew something wasn't right but I wasn't sure it was broken and nobody else thought it was broken. I went to school and couldn't use it at all because of the pain. My mom took me to the ER after school and when they said it was broken it shocked us both. I was then told that I have osteoporosis. Six months later I fell and broke my leg in three places. A year later I sprained my ankle. It was a long couple of years.

I also have tail bone problems because of my old chair. The seat wasn't comfortable and sitting in it for so long for five years really screwed it up. Apparently it's close to the skin. It's somewhat better now but I still have trouble with it once in a while. I also have been anemic a lot, have migraines often, and they're not sure but they have recently been talking about me having Lupus. This doesn't even cover my depression or eating problems.

I am in pain almost constantly. I don't even remember the last time something didn't hurt, some days are better than others but when I say better I mean doing daily things distracts me from the pain. This has been going on for years but I refuse to take pain killers. This is just one of the reasons I have been afraid lately. It's getting worse. It's bad, and it's not just my bones and muscles any more, it's internal. My stomach always hurts, my head always hurts, and even on occasion my lungs hurt. No one knows this. I'm afraid that if I start telling doctors then they will start doing a bunch of tests and honestly I don't want to know if anything else is wrong. I can imagine me barely eating is really making things worse. I know this, yet I can't stop because it's the only way I can really lose weight and if I was smaller than I would not only be able to move more but also feel better about myself. I'm also afraid of getting sick because I've seen it go downhill so quickly with others. It really terrifies me. I don't want to get so weak and sick to the point where I can't get out of bed.

I'm sorry this post is so long, I was going to write more but I will stop for now. If you actually read all this I appreciate it. I need someone to listen right now, even if I don't know you're reading it. I have wanted to talk to someone about this for a while now but have been too worried of what people would think. The only people who know about my eating problems are a couple of friends and those who read this, I don't want people to think badly of me because of it. I am working on it, I just don't really know how or what to do. I want to be healthier. I'm just scared and tired of putting on a brave face when all I want to do is tell someone why I'm really upset, which this is only part of what's been upsetting me. There's also school, the fact that I think I chose the wrong major, I am stressed beyond max, I can't sleep, and to top it all off I've like the same guy for over two years, and it keeps being brought up by everyone because apparently it's obvious even though I tried so hard to say it wasn't true, but I can't do anything about it, no matter how hard I try. But that's a post for another day. I don't want pity for the things I've said in this... I just want someone to tell me everything is going to be ok.

~Caitlin