Monday, October 29, 2007

My Reasonings

I've decided to start making this blog so that I can write freely about how I am feeling about having NF, (Neurofibromatosis) mostly just to get it all out without knowing if people are going to read it.

My story and why I walk on stars: When I was born there was a weakness in a bone in my left leg, my parents believed it to be broken, I was taken to the doctor, and they found out that I have Neurofibromatosis type one, also known as NF1 (not sure how many test, if any, were done, or how many cast were put on to help heal my leg, or how many doctors I'd seen) I had 5 surgeries before I was two and a half years old. From stories that I've heard, I had pins and rods put in it, bone taken from my right leg and hip to try to fuse the bone, many body casts, my mom tells me that my foot didn't even look like a foot anymore, it looked more like a club, because of all the casts and surgeries, my mother made a very hard decision... to have her baby girls leg amputated. It was that, or go through who knows how many more surgeries. I had two more since then, one was to fix the growing sharpening bone, and another to make a "bridge" and to fix the nerves so they wouldn't be so sensitive. During the last (6 hour surgery) they removed two neurofibromas (benign tumors.) This was the first I heard that I could develop them, I really hadn't done any research on NF, I now know that I can develop them anywhere in/on my body, that I know of I have at least 5, but I have no idea how many I really have, without getting testing done.

One of the last prosthesis that was made for me they put stars inside it for me, and I once told one of my online buddies that, and he said you walk on stars. and started calling me star walker. Them having done that, it made me feel better about the whole thing :)

I'm the youngest of three children, the only one that has NF, no one in my family has any signs of it, I have tons of café-au-lait spots, most are freckling and there isn't anyone else in the family that meets that criteria, thankfully.

Growing up having NF, a fake leg, was really hard, I really didn't see my self as different because of this disorder, but other kids did, I was made fun of a lot as a child, but I stood my ground, in my eyes I wasn't all that different, People would ask about my spots, a lot comment on them being ugly birthmarks (I always had to correct them, because thats not what they are, and I was proud that I knew that, and proud that I could say such a big phrase.) I was always told that I couldn't do this and couldn't do that, my leg didn't limit me that much when I was little.