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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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06-14-2009, 06:50 PM
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Hello all! Well, yesterday I was feeling GREAT, so I decided to "take on" my closet - BAAAAAAAD mistake!When am I going to learn? Seriously? I mean , I know if I try to undertake something that big, I always pay the price, but when I FEEL GOOD I don't want to lie around like a big old wart hog! Do you guys know what I mean? I TRULY miss how GREAT I felt @ 80 mgs of pred - there was no stopping me, and now a closet just does me in.......hating MG today!
 Granted, @ 80 I was manic as heck, but I so miss being able to get everything "done" in 1 day! I always know when I am doing better cuz' my OCD kicks in and I go all out trying to finish up everything I haven't been able to do in a while.....I do have someone here to help me clean my house, but I miss doing it MYSELF! I truly do not know when my neuro is going to clear me for 20 mgs of pred every other day, b/c I will not settle for this being the best that my MG is going to get! I refuse! I'll even be a guinea pig if that's what it takes - and I am dead serious about that!  Heck, I'll even go back for more of the dreaded plasma exchange if that's what it takes.....I do know that most people go into remission 1-2 years after their thymus is removed and I am right @ 1 yr, and then I'll read Brennan's posts and feel so hopeful! I know remission isn't going to happen to everyone - I do know that, but I would love for it to at least be a possibililty!It has been a crazy weekend here@ the Hermes house! My ex has been staying with us, as he lives out of town, so my son is very happy, but it drives me CRAZY! It's just like having 2 unruly boys living here - my husband is a saint! This is the first time ever that I do not have a follow up with my "boyfriend" AKA Dr. I - ever! I do appreciate that! I think it is the heat that is really doing me in. I can't even step foot outside for more than a few min without getting really, really tired........ Sorry for ranting! 2morrow will be better - come Hell or high water! Big hugs! Erin PS How many of ya'll are type A personalities? Do you feel the overwhelming urge to get it all done in a day as well?
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Erin . |
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