hey everyone! i found this forum from the boss man but over on another site.com so wanted to check this out and whatever info i can get and learn about its really helpful!

my name is amber and im currently getting very much back into the fitness world. (i love it!) i used to be a cheerleader for seven years, four years on a lil popwarner team and three years on an allstar squad. (there summers to learn new routins was like bootcamp for girls! but was great!) well anyways...all that has changed. i was diagnosed with a genetic disorder known as NF2 and ive delt with over 13 surgeries varrying from five brain (at least) and other big and small ones. (check out the link under my name at the bottom if you wanna see ALL of my struggles) mind you it all started four years ago and im now also deaf.

the reason im here? well...i got tired of sitting on my butt! hahaha i let myself go for a few years after being dx. but if you see the link you will also notice another event. im currently now in training for a half marathon in january of 2009! yes, im only walking it due to balance loss. altho im trying to improve that so any tips there is helpful! i walk like im drunk and i laugh at it all the time. (thank god im 21 now so i dont get arrested! LOL) but my love for working out is growing and growing. there is no cure for this disorder so its really up to me to improve my health and well being. what better way to do that then to workout and eat right?

i have been working out on and off for a good year but not NEARLY as dedicated as i am now. bc i woke up one morning and just thought about doing this half marathon....i doubted id finish it in time but i told myself "if im gonna do this im gonna do it right! and im GOING to finish!" so far ive been doing pretty well but the balance issue is still a pretty big problem. i can walk alone but being 'drunk' it kinda slows me down. i have a good pase on treadmill but thats holding on to center my weight off something sturdy. so one of my goals is possibly improving balance if thats possible to overbeat (even tho docs doubt it) i have a nac to proove ppl wrong when they give me a limit to something i probably cant do...ill tell you "let me try" i do have limits but always at least try it once. i dont give up tho if its something i really want i will work hard enough for it and try it again.

so even tho i may face something difficult and deal with these limitations day to day. (like deafness and balance issue and vision loss) after four years of being 'raped' of these things, its turned into a way of life and i learn to just deal with it. im still the same person. still love the same things even if i cant actualy do them. but the drive i have for life and things i wanna do and the appreication i have has grown ten fold. i cryed for a year and went down self pitty ally but now i wanna get back into shape and inspire other ppl you can really do anything you put your mind to. even if your facing something difficult.

ok sorry for the novel! great forum so far!

Amber
my story with NF2- supporting the childrens tumor foundration to raise money for research to find a cure
http://www.active.com/donate/nfdisney2009/The-A-Team

Hi Amber.

Firstly, I'd like to say, please don't apologise for anything. You should be incredibly proud of your attitude, courage, and willingness to talk about something clearly so very difficult, and obviously very heart wrenching at times.

The way you responded to your situation in the early months, was totally understandable, and I would think it would be very hard for anyone, to not show at least a small part of the emotion you showed, in that first year or so, and I found the way you have continued to deal with this, and to stay positive, and to laugh and smile inspiring, and in many ways the way you spoke about yourself, was not portraying you as someone tragic who needs pity, but as someone who is inspiring, courageous and emotionally beautiful.

I wouldn't be so crude as to say that I understand how you must feel at times, as to read what you said, is not to understand it deeply, but to understand enough, to empathise with your situation, and praise you for how you've coped with it. It clearly takes a special kind of something, to deal with a situation like yours so positively .

Again, you should be proud of wanting to make the best of your situation, and all I can say further is, that whatever we can do to help you, we will do what we think is our best, to help you achieve your goals.

Many thanks for choosing to come and see us at Steelmuscle. You are part of the family now, and we'll do what we think we can, to look out for you, and support you whatever the situation.

For now I send you lots of GOOD LUCK, and WARM WISHES, for as bright and positive a future as is possible, and I hope you enjoy your time here with us.

well THANK YOU! the funny part is, i used to be a very shy person. kinda back in the shadows bc i had some issues growing up just never knew why so couldnt say much about it. so i stayed quiet. NOW, i pretty much talk about my NF2 like its the weather. it really doesnt bother me bc now if someone wants to point something out thats wrong with me, i can defend myself bc most likly its bc of the disorder. i can talk about it very openly if ppl want to know, ill share. not many at all have ever even heard of it and its more common then like MD and other diseases combined. there is a video on the fundraising page promoting NF and a tad info about. but what ppl dont always understand, EVERY case is different.

like i said, im no different then any other person. i just have these lil "kids" i have to babysit inside my body. i like to poke fun at it in a way. this is a life llong babysitting job for the 'kids' (tumors) inside me. (i dont get paid enough for this job! LOL) i have to many tho but some kids are good and stay small and not dont cause to much trouble. (most are still sleeping right now ) there are some who like messing with things they arnt saposed to. like nerves and sometimes they grow so big...they get a name! haha when they get a name that means they have to go "home" and doctor dad has to come pick them up and get them off my hands. (surgery) its not always fun but ive gotten used to it. and yes your right, i really hate the pitty bc other then these tumors (at least three in my head and 15+ along spine...small tho) im PERFETLY healthy. i dont have any other issues like allergies or breathing issues or anything like that. i do know i could have it waaay worse! im thankful at least to have the issues i have instead of others. yeah, a chance of loosing more sight freaks me out seeing how i only have one eye to see out of and even that is cut off. but i rather live the life i want then to crawl up in a corner and cry the rest of my life.

i think its just a 'self discovery' to realize how much control you have over your life and what happens in it. its a giant mind game, you just gotta learn how to play it right in order to get through the hard stuff. but with the difficulties i was put through, i just gotta play a lil differently. i can do anything you can...just a lil diffrently

You have a really good attitude to all this, and I completely get what you're saying. It's not always easy for people in a situation like yours to see any positives, but if they can then even in a war you might not win, you can at least win a few battles .

exactly! im honestly not a big religious person but i like the saying about how god doesnt give you more then he thinks you can handel. my muscles may not be to strong (YET!) but my strength is messured else where. ive delt with more then seven brain surgerys....bring on the weights! LOL!