Dermatomyositis

Hello everyone I am a 21 year old female who was diagnosed with dermatomyositis at 13. I must say at that age is was pretty hard but I had my mother who supported me %100. Dealing with prednisone for such a long time I gained an extreme amount of weight and my face looked like a balloon . Being that age only a certain few understood my misery. In reality no one actually knows what you are going through unless you are dealing with it. It use to get frustrating. I was very insecure about my physical appearance that when summer came around I was the oddball wearing long jeans and so forth. But being 21 I have learned to deal with this disease and not let it beat me. I refuse! A couple months back I had a horrible flare up which included my skin(which I felt was worse than the muscle part). I think the skin part is what made me more insecure because of where they appeared. My face chest area and arms were all affected. As of now I can say I have it under control because I have switched my diet and stuck to it. I have definitely felt an improvement and hope one day my disease will go into remission. To everyone else with dermatomyositis don't let this disease beat us we can over power if we put our minds to it!
Notgonnabeatme91 Notgonnabeatme91
18-21
1 Response May 17, 2012

I understand everything you have been going threw i went threw the worst flare up so bad that i was shedding like a snake i wouldn't even go outside . I hated my self looking I'n the mirror was even more depressing . But over the years my skin clear but my muscles still continue the same I'f i stand my legs hurt within 2 minuts I'f i sit then try to get up my walking I's like baby steps for the first 5 minuts UNTILL my walking snaps back like a normal person . Thus I's a fight everyday i don't know how I'm gonna wake up most days i feel like I'f I'm cripple and u can't talk to anyone about this because no one understands you most even say i look to good to be sick even though inside i feel dead .