While I probably should be sharing a blue ribbon or link to the foundation etc... Here is a video if me instead. I have Myasthenia Gravis. This video was taken at a show in San Francisco that my band BOTTOM played with the legendary DORO. I was just recently diagnosed with MG and just started taking two different medications to help me.
What you can't see in this video is that I am mid-myasthenia meltdown. Not a "crisis" that would send me to the ER to be assisted to breathe by intubation, but a meltdown--meaning I'm struggling at something I once found easy.
What you can't see in this video is that I can't look down, I can't fully see my hands. My arms, head, body and fingers, feel like I'm wearing a metal deep sea diver suit. My lungs are half of breath, my vision is blurry and double (to me the audience looks like a gel-ed over Salvador Dali painting), my friends helped me get my amplifiers on and off stage and I was popping pills before, during and after to get my muscles to work in efforts that I wouldn't end up in a myasthenic "crisis". What you can't see is that I just started taking prednisone and am experiencing the initial weakness brought on about 10 days into first taking the drug, this period last about a week before the steroid truly kicks in, before you feel better. What you can't see is that at this point, my husband was driving my around, taking me for walks in the park, my mom is in town helping me survive life, cook family meals, and take care of my 3 year old. I couldn't chew the over-cooked broccoli my husband made the night before. I asked my mom to stay 3 more weeks the day after. I am out of work on disability leave for three months at this point and really uncertain of how life will proceed from here. Well, for this rocker, the show must go on. So here goes:
http://www.youtube.com/watchv=JenOkS9U6Uk&list=FLuzyO4wgm7V59oVDOBabc8Q&index=1
I am Sina from BOTTOM. I have iron lungs and thrashing axe. I am Myasthenic.
