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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#21 | ||
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#22 | ||
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![]() Thanks also for sharing your experiences with docs - Sounds like the second doc needs a class set of those books you mentioned about in the reading thread! ![]() |
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#23 | |||
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#24 | ||
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#25 | |||
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I have done loads of thinking on all of this and have decided after last nights 2 mile run (which turned into more walking than running) that I am going to defer my January marathon at Disney and instead put the credit for the entry fee toward the Disneyland Half Marathon in September. While I am seeing progress I have to think more long term and have to accept that progress will be slow in coming. Being stubborn and impatient will likely only lead me down a road to failure and risk undoing the progress I have made.
I apologize if I came off as a bit of a jerk here. My long term goal is still to get back to life as it was before MG and I think in time I can do that. I will still make the trip to Disney in January as a spectator to cheer on my wife and daughter and spend time with all the friends that I have met through running over the years. There will be other races but first I need to try and heal at a slow and hopefully steady pace. Thanks for all your advice. You all have helped me learn so much and it has been great to go to the Docs with knowledge in advance of my appointments. |
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#26 | |||
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You were not being a jerk. This is a really frustrating thing to be going through. We are in the same boat. I feel like my life is being stolen by this thing and I believe that the rest of us do as well. The treatments working to help us get our lives back.
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Celeste |
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#27 | |||
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I was good at taking it slow on Sunday and Monday. Well, sort of.
Saturday I sang and played a gig. I was the lead singer. I put a tremendous effort out and it went great. I was able to sing well. I sat on a stool rather than standing. The audience was receptive and enthusiastic. I was able to present several of my original songs as well as a few standards. I even had a nice chat with several people after the show. I was glad that my husband drove me because on the way home, I ran out of gas. My tongue was paralyzed and I couldn't talk. If I had been pulled over, I would have been arrested for drunk driving. Then it because difficult to breath. I tried to relax and concentrate on breathing and it got easier in a few minutes. By the time we got home I was a lot better. (It was an hour drive.) I have been a bit wobbly in my gait and my ptosis has been bad since, but I seem to be feeling ok this morning. I am going off to work here in a bit. "You pays your money and you takes your chances."
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Celeste |
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#28 | |||
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I've tried to find another way to use my creative abilities so later in life I became an art major with an emphasis in painting, but by the time I graduated the economy tanked and I have a bunch of abstract paintings that I can't sell, especially in Arizona where Southwestern style prevails. I haven't painted in a while because I'm just too tired and I feel it's pointless to continue in this economy. Now, I've been trying to write a sci-fi/fantasy novel, and I'm about a third of the way done, but my mind is very dull lately. I try to write bits of the story here and there, but my memory of details are often obscured. I've made a calender of events in the story so that I don't get too far off track, and I'm writing bits out of sequence and will piece them together later. It's like I'm evolving all the time; searching for a niche that my body can handle. |
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#29 | |||
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It's really difficult, and you had to sort through things in your own way. One reads a lot of information and draws up plans in one's mind based on that info, but then one finds out how little MG concerns itself with plans. I don't know one runner who would do well with dealing with this. I am not. Have hope, though. I was unable to run a mile this summer, but now on 40 mg of prednisone, running is coming back. I have done two long runs, albeit at an excruciatingly slow pace. Don't give up!
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"Thanks for this!" says: | rogerm213 (11-14-2012) |
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