to Jenny's page in cyberspace. I'm happy that you decided to read
about my life. I am fourteen-years-old (or at least I was in 2001, when I wrote this story!), and I consider myself to be a complex
person. If "normal" people were as easy to understand as watches, I guess
you might call me Big Ben. I am nice and very caring, though sometimes
it's hard for me to open up, especially the last few years, since that's
when a bunch of medical problems set up shop in my body.
My mom would tell you that the first year of my life was difficult, with some medical problems that were never really understood. When I turned one, though, it seemed that I was all better. Of course it was too long ago for me to remember crawling around as a baby, though I do remember having fun doing all the sorts of things you probably did when you were growing up.
My health troubles started when I was in seventh grade, right after Christmas. I was getting the worst migraine headaches almost every day. They hurt so much that I missed a lot of school. Naturally, I went to the doctor and I learned that not only did I have headaches, but scoliosis and high blood pressure as well. Yikes! The day after that appointment, I had such a horrible headache that my mom had to take me to the Emergency Room (ER), where I learned that I had a urinary tract infection. Then, a week later, I had to go back to the ER, this time in an ambulance, to find out that an ovarian cyst had burst (I had never even heard of one of those!)
I had to leave school to heal from all of those problems, but another problem was lurking below the surface that had everyone worried. My blood pressure was very, very high. I had to go into the hospital again for a few days, and after a million tests, the doctors told me that I have a tiny right kidney. They considered giving me medicines for the blood pressure, and I had to stick to a diet that contained very little salt.
Next the scoliosis. Well, my back looked like an "S", one curve on the top and another one on the bottom to try to balance everything out. I had a long operation this summer to try to fix things, and I woke up from it with rods along my spine to keep everything as straight as possible. Unfortunately, I learned that I'll always have a curve even though I had the operation, so I guess I'll always have horrible back pain, too. The pain comes if I sit or stand still for too long. Because of the rods, I am unable to bend or twist, so when I start to really hurt, the only thing left is for me to lie down, which is not an easy thing to do in school. After my surgery, it was amazing. I had grown three inches!!!!!! When I got out of bed five days after the operation, I felt like a giant, stretching out to a full 5'3" from my usual 5'(some giant, right?). I was really unsteady, so to help balance, I would put my hands out to my side all the time, and after a while I got pretty used to this way of getting around. It became such a habit that when I registered for school, one of my friends came up to me and was like, "what are you practicing to be on...a high wire?" I didn't think that was terribly funny, but my Mom was laughing so hard I thought she would die.
I left regular school to have my classes "homebound" for awhile since I just couldn't make it through the day sitting up. Homebound classes are those over the phone. Actually, I made two really good friends this way who were also doing homebound. We'd talk on the Internet, too. When I was in school, kids didn't know how to react to some of the things I'd say, like "my doctors think I might have a brain tumor" (don't worry, it turned out that I don't have one of those), but the friends I met in homebound would really understand what it's like to be sick.
In the middle of October I returned to school. It was hard to go back. I thought that I didn't have anything more in common with kids in my grade, and it was scary. Luckily, I was wrong about that. My classmates were really great. I know that they don't understand most of what I'm going through, but they did a lot for me. Because of my back surgery, it is really important that I don't fall. To help me stay safe, my friends would keep the ground clear and get me things I needed, particularly when I would get dizzy from my headaches. No one really teased me, thankfully, but they would ask me questions, which was fine with me. Some kids were jealous of me, if you can believe that, because of my homebound experiences and because at school I would be treated "special" by teachers. Of course I never asked to be treated differently, the teachers were just trying to help, but that's the way it appeared to my classmates.
More bad medical news, since right after Christmas, I was rushed to the hospital because I had the worst stomach pains ever, and it turned out I had a cyst the size of a small tangerine. I've also had such wicked migraines that the medicines don't even work for them.
Don't worry, there are some good parts to my life, too, thank God. For instance, my friends are great, and I talk on the phone with them all the time. The biggest problem for me is what kids 'don't' do. It's hard to make and stay friends because I'm always in and out of the ER, with doctor's appointments almost every week. I have a lot of friends at school, but few of them understand everything about me. That's really hard, because it's as if they don't know a part of me. Being sick isn't everything, but it is a part of me.
I love the Internet, because I can talk online with anyone, even if they're in Australia. I find that it's easier to talk to people on line when I'm not feeling well.
I love watching cartoons Saturday morning. and I like to hear about other peoples' lives, particularly their funny stories. For now, I want to learn to play the piano. When I 'grow up' I want to be a pediatric nurse. I think that being a nurse will fit my life perfectly!
My family is the greatest. My mom and little sister come with me to almost all of my tests. I know it's harder for my older sister to understand what it's like for me because I always look "healthy", despite all of these medical problems.
Pets are an important part of my life. I like to play with my dogs. especially my German Shephard! He's only a year old, but he's so BIG! Usually he takes me for walks, not the other way around. I have two other dogs, and the cutest black cat! So that he (Hank) won't get lonely, I got an all black gerbil, too. As you can imagine, I am surrounded by love!
I think that you should know that "sick" kids are still kids. We still like to play outside and go shopping, and we like to do most everything else that you like to do. It's just that it's harder for us to do it, and it hurts our feelings to be left out.
Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468
Last updated: November 16, 2004