Its late, 23 days late. The first day of my last period was October 19. I remember that date because it was the day before our Open House, held at my sister and her families church, also the church I went to when I was growing up. I woke up in the middle of the night, I didn't think I was going to start, but I was ready just in case, the day was really busy, a lot of different things were going on. We help set up, and I had to hurry and get ready, my sister and her family were getting pictures taken so I had no one to help get me ready, my mom was running late as usual. I was attempting to put makeup on (I rarely wear it so this is a difficult task). We'd forgotten my bra, my shorts that I wear under my dress (I'm also not a very girly person). So that was uncomfortable, I felt all icky and bloated, I was cramping horribly. Other then that it was a great night. We decided to make the trek home, even though our family didn't want us to risk it, the weather was fine through the usual bad weather parts, but then the snow hit, it was terrible, a white out, we ended up having to stay in Heber, we didn't want to chance going though the canyon. it was a nice room, cozy. Finally we went home.
Monday, December 10, 2007
Posted by Manic Insomniac at 2:46 PM
Monday, October 29, 2007
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.
Posted by Manic Insomniac at 4:31 PM
Whenever I read about NF it worries me, Like today I read about how some doctors have said that where you itch a lot you'll develop tumors, (itching is a symptom of NF) I don't know if I believe that though, I've itched like crazy (mostly on my back) for years, and that I know of I haven't developed any tumors there, It makes me feel so sad for the people that have horrible cases of NF, mine being very mild, I feel so horrible when I worry about my self, it could be worse, yes I only have one leg, but it could be worse.
When I see pictures of people and they have disfiguring neurofibromas (tumors) on their faces, backs, arms. and I think.. "How dare you feel bad about your self, you don't have the right to." I am really not one to complain, I never really knew how bad my NF could be, (could get) until the last few years, the net has so much information. I've tried talking to other people with it, but for some reason it seems as if they are talking down to me, like I don't know anything about what I've been though, when I mentioned that I had to have my leg amputated due to a "weak spot" or "hole" in a bone in my leg they would say "are you sure it wasn't a bowed tibia?" UGH no... it wasn't.
Joseph and I want to have kids, we've talked about it a lot. I want to have kids of our own, if we can't we want to adopt. But I'm so scared, people always say that they think that since I don't have it very bad that our kids won't either. and God won't give us something we can't handle. Although I believe that it still terrifies me, I get depressed sometimes because of all this.
Posted by Manic Insomniac at 4:28 PM