A TV special on me. (I'm serious)

[Plaidman]

So, tonight on MTV, 10:00 pm pacific time is a show called True Life. The one I am talking about is titled "I have NF". Its a special on the same disease I have called Neurofibromatosis. You'll be able to see what I go through everyday due to this disease.

I haven't seen it yet, but I will warn you now, its very very likey that some of the teens on there will be /horribidly/ disfigured looking. I have a relativally /low/ version, though tumors still appear throughout my body, both inner and outer. I'm betting that there will be some really hard cases. In anycase, as I grow older I will get more and more and more tumors all over, including my face. I can't do much about it since the tumors grow back. It's a mutation of my genes.

In anycase, Please watch if you can. Look it up. Please. You'll see what alot of customers see when they see me, and a good cause of my insults. Why I have so many other imperilments and scars.

At least glance over it if anything.

MTV, TONIGHT April 12 2010 at 10:00 PM. (I'm sure everyone can check their guides to see which True Life I'm talking about. Again, its titled "I have NF".

It would mean alot of anyone watchs it, even for a few minutes, for me. And If they show older people that have that many (Dozens and dozens, sometimes hundreds) of tumors all over their body, including face.

[Cookie]

I don't have a TV. Would any of this be available online?

[Evil Queen]

I have TV but not cable. I'll be sure to watch it on Hulu tomorrow though. Thanks for telling us! I look forward to it.

[RetailWorkhorse]

I'll watch it online, too. MTV isn't allowed in the RV (per my own request, seeing as I'm the one paying for it).

[Green_Fairy]

first person to find it online needs to post a link

[Andara Bledin]

It would appear that MTV has the full episodes available on their site a week after they air, so people should be able to take the time to watch it online on the 19th.

^-.-^

[Nurian]

For you, Plaid

[Cookie]

For you, Plaid

Thank you. I've started watching it. I really wasn't aware of this condition before and I want to know more.

[Plaidman]

Thank you Nurian for putting it on. That's three I owe ya.

Sorry for the short notice everyone, but my NF group only got the email shortly before it was to air.

Some of them do have it bad. You should see what some of my NF group looks like. They are incredibly nice sweet people.

One of them is a older woman. She runs alot. She's married. She does alot of volenteer work. But her face is rife with tumors, along with her neck, arms, legs. Just everywhere. So yeah, she does get alot of stares and insults due to that. She told us one time she was working at a school with young children. One little girl ask her what was wrong with her, and she told her. The little girl said that alot of the other kids were calling her ugly, but she thinks she very beauitful. Even gave her a hug. That made her so happy, that she nearly broke down in tears. (she did on way home). Other one of my group is in a wheelchair due to her spine. Our leader of the group, a eldery lady started this group because her daughter had it, and no support group was around, so she started it.

I remember once, back at my old store, a man came in with his son. He had NF. I could tell right off. So when he came up, I asked him if he had NF. He said yes, and I told him I had the same disease. I got his email, and he joined our group. He is a very religous person, and even quit his higher paying job to drive kids to church, and help run a bible church. He has numerous ask me to go to church, but ... Well, I just don't like religon. Our group does alot of marathon racing to raise money for NF, as about two years ago the funding for NF was greatly reduced. Not just tens of thousands, but hundreds... As such what was a once a month deal is just now once every two or three months.

There use to be a person at my bus sto that had it. I always tried talking to him, but he just ignored me, and told me to even fuck off. Despite me saying I had NF too. He started getting on the bus at a different stop to ignore me. Likely because he might have thought I was making fun of him, when it was the opposite.

NF is genetic. There is a 50 percent chance that any kid I have will have it. However, mine was a mutation of the gene. I'm the only one in my family to have it. Mom told me that when I was first diganose with it, (at 1 or 2 years old) she was in such a state of shock and confused that she went to her sister rather then her moms. Her sister being my aunt Rena. (She's the one whose granddaughter passed away last year). Rena is a bit of a grouch, and not to many of the other family got along with her. But me and her never argued. We always got along, and its not secret that she's my favorite aunt. Even the spoiled aunt, who belives that even God should bow to her, doesn't argue with that fact. (Seriously. That aunt took her son to disneyland when he stole 300 dollars from grandpa, my aunt's own dad, because it meant that he obviously didn't spend enough time with her, her youngest son had the shit beat out of him by her foster daughter's friends, in her own home, and what does she do? Send her son to live somewhere else, because the state pays her alot to take care of her). She's my favorite aunt, and my aunt has said I'm her fave cousin. So mom went to her. My aunt got on the phone and got all shorts of information while my mom was just staring at me, and the tumors that had started to show on me. (The first of the many that would grow).

Needless to say, I have many. Not to many people have heard of it. The bulk of my doctors never even heard of it really until I became their patient. Which is why when I was being interviewed by a doctor during my stay at the hospital I was shocked when I told her I had NF, and she asked NF 1, 2, or Schwann). I had to give her a compliment after that which she barely smiled at.

Do I get made fun of this? Oh yeah. Not the tumors themselves, though I do get asked. Just my eyes which looked greatly disfigured of it. I wore a shirt to a swimming pools, because of the tumors and spots on my chest/back. I got less insults or jeers over that. Ether some people laugh at kid wearing a shirt at a pool, or a stares and looks of eww without it. Even asked once if I was contatgious.

I hate this disease. It causes to many problems, disfigurment, spine problems, behavior problems, (Depresssion, some paronia, learning disabilities). Mom always told me that I cannot blame the disease for me to not learn. I had to work harder at it. Never really worked. I do blame the disease on how I look. No amount of haircuts, or nice clothes can ever hide what I look like. All I can do is keep my hair long enough to cover my head tumors.


Sorry for rambling on. I just, glad that it was shown on MTV. I do wish they had shown people that were more disfigured, as it shows what it can do. It doesn't change how people can act, alot of people with NF are sweet and kind. Others, like me, are very bitter and hateful, because it gives alot of ammunation to be stared at. If I didn't have this, I might have been with alot more friends, maybe even married by now. But whatever. I know not all people only go out with people that are pretty, but it wouldn't hurt to be able to at least talk to someone so they can get to know me, but with this, is hard to do because they just looked disgusted by me alot.

I really hate this.

[Nurian]

De nada, amigo. Happy to help.

[RetailWorkhorse]

Watched it. Fairly optimistic kids. Philip's a cutie!

[Green_Fairy]

those kids are so strong! bekha seems like she wants to punch her tumors in the face. definitely one of the better "real life" episodes.

[Plaidman]

those kids are so strong! bekha seems like she wants to punch her tumors in the face. definitely one of the better "real life" episodes.

I've done that. I tried to cut mine off. Burn mine off. I just want them gone.

[telecom_goddess]

I didn't get the notice in time to dvr this on tv but I will definitely watch it online at home. I'd watch it here but my work blocks it.

Now I understand why you seem depressed more than the average bear

I have to admit I looked up the disease today out of curiousity and found out it was genetic.

So yeah I do want to watch that show I also just like watching those kinds of medical type shows or profiles on people anyway.

[Andara Bledin]

This type of show is hard to watch, but I'm glad someone's taking the time to make it, even if half the people watching are probably in it for the "freak show" aspect.

Maybe it's just my non-maternal side talking, but I don't understand why a person would opt to have a bio child when that child would have a 50/50 chance of going through this.

^-.-^