This is Me!

Yup, 33 years later and still no clue on exactly what is I have. I'm what's called, a Hemophiliac. I have a rare form of Hemophilia similar to Von Willibrands disease, Ward's Syndrome, and Platlet Disorder, all rolled into one thing. (There's still no name for it.) Over the years I've had my blood tested and shipped around the world to get some more info on it. So far, very little has been found out. What I do know is that this blood disorder causes me to have internel bleeding. This happens with various degrees of trauma, or just out of the blue. These are called spontainious bleeds. I used to get them when I was very young, but now I'm getting them again. To combat these bleeds I used to have to get Platlet tranfusions, where over a 4 hour period, I would have about 4 to 6 bags of platlets I.V.'d into me. But, over the years, and over the cours of many bleeds, I've become immune to them. Now I have this at home transfusion kit called Noro 7 (NovoSeven is a recombinant factor VII. It is a vitamin K-dependent gycosylated serine protease proenzyme), which I have to use sparringly so I don't build a tollerance to that too. (Update, I now take NovoSeven RT, A new treatment because my old one began to not agree with me.) Along with the bleeds, this blood disorder also causes my immune system to act all wacky from time to time, getting me sick alot. In addtion, I can't take most over the counter and prescription drugs because of bad side-affects to them. It was also once thought I'd grow out of it and the blood disorder would be less harmful to me. But again, they were wrong. It seems to be getting worse, not better.

This was discovered when I was almost 2 years old due to heavy brusing on my hands and knees from trying to crawl as a baby. (They thought my mom beat me, funny.) After a bunch of testing, they found out I was actually born with it. My childhood was affected by it alot. I couldn't go out and play with the other kids, I didn't have recess in school, I wasn't allowed to play sports. Even with all that protection, I still got hurt, and still got bleeds. I used to think I lived at Childrens' Hospital in Oakland, and I just came home to visit my parents. (I to this day still like hospital food!) I was the boy in the proverbial bubble. When I was finally let out a little, I took full advantage of it and got into things I shouldn't have. But, hey, I was a kid. I didn't really know the gravity of the situation, until I was about 8 or 9. I overheard my doctors say I'd be lucky to live to see 16. I confronted them of course, they said I heard them wrong. That left me feeling like I couldn't trust them or my parents. It really screwed up my head alot. On top of that, I had to deal with everyday kid stuff. Getting bullied and picked on. (I couldn't fight back then because one hit, I could've been dead.) Getting teased because I was a "freak". For the most part, I went through school without anybody really knowing what I had. (There's still people that don't know.) Everyone just thought I was this shy, quiet kid. When really I was quiet because I was in frickin' pain! I remember to help me fit in, my parents sent me to a Hemophiliac camp, but even there, I was a freak! The other kids couldn't really relate to me because my form of hemophilia was different than theirs. Although in high school (and jr. high) I did find a group of friends that were really my friends and I let them know about my blood disorder (sort of, they found out because I had car accident and I HAD to tell them.) They're still my friends to this day. (More like family, I love them all!) Being an adult with this is hard too. All my friends have these really good hard-working jobs. But due to the injuries I've had, and the fact that I can't have surgery to fix them. (The last major surgery I had was for my tonsils, I woke up to priest reading me my "Last rites".) My working days are pretty much over. (Of course people give me shit because I don't work, but until they have what I have they just need to shut the fuck up!) So I do have regrets, but hey! You have to move on. Now, I'm 33. In a way, I feel a little bit of victory because I am still here. I've had the best and worst luck with this. I'm still going to doctor's all the time. They're still trying to find ways to help me too. (Unsuccessfully) But the stuff that doesn't work on me, sometimes works on other kids with bleeding disorders, so, at least their research helps some people.

Well, in a nutshell, that's the life-threatening, unknown, bleeding disorder I was born with, that will almost surely kill me. Dramatic, Yes. Does it bother me? Sort of. Remember, I had to deal with this all my life. I'm kinda of used to it. (Plus I'm pretty sure I've lost a bit of my sanity over the years due to all the pain (and other things) I've dealt with, I just flat out don't care anymore.) (Sort of.)

The funny thing is, I'm actually happy. In the face of my impending doom, a part of me is sad because I'll never have that normal life I've always wanted, but a part of me is kinda glad to be done with all this. (As morbid as that sounds.) I don't want pitty or condolences, Hell, I don't even want to be understood. I don't think anybody could ever really understand. This is just me getting some stuff off my chest, before I can't anymore.

*Update* After reading this I found it sounds kind of like a suicide note. Don't worry, it's not. (It's actually the beginning of my very own snazzy blog!)