There are some parts of my story that are absolutely not so much fun. When I was very little, I started getting these sores called ulcers around blood vessels in my mouth, and my eyes, and my heart, and my stomach, and my kidneys, and in other parts of my body that are more private. In April of 1999 my doctors finally figured out that I have something called Behcet's disease. It is a rare auto-immune disease, they said, that usually is not seen in children. They explained that auto-immune means that my body has become allergic to parts of itself. Just imagine that!
Besides having to put up with ulcers, my joints hurt a lot and I get tired very fast. Because of this strange medical problem, I have become a sort of expert about hospitals, since sometimes I have to go more than twice a week! One time I asked my mommy if the hospital for sick children always stays open. Because there is no cure yet for Behcet's, I try different medicines to see if they might help me. Unfortunately, because the medicines are pretty strong, I get a lot of side effects. Sometimes I worry about dying, but most of the time I try to have fun living.
This disease is not only hard on me. It's
very hard on my mom, too, since she takes care of all of us by herself.
Oh, except for Stephanie, my oldest sister. She lives nearby with her husband
and brand new little baby.
A couple times a week I get out of control, and I throw things and scream and sometimes even bite. None of us quite knows how to deal with all of this behavior, and believe me, it is tough on everyone. For example, the other day my sister Andrea-Kim started crying and told Mom that she didn't think that Mom loved her. She complained that Mom is always too busy taking care of me. Well, I guess that that is true, but what else can she do? My sister felt a lot better when my Mom reassured her that she has plenty of love to go around, but that it would never look the same to each person, sort of like getting different flavored puddings if you know what I mean!
Well, that's all for now. I hope that you
are happy you stopped by. I surely am. If you would like to learn more
about the disease, here's
a page that does a pretty good job of explaining it. Thanks for visiting.