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Member
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Join Date: Apr 2009
Location: Tenn
Posts: 554
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Member
Join Date: Apr 2009
Location: Tenn
Posts: 554
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Annie, this is a WONDERFUL thread. We are all so different -- in our symptoms, our abilities to tolerate treatments, and in our willingness to accept the side-effects from those treatments.
I was a teacher, too -- now on disability. I am only on Mestinon. I cannot take Prednisone due to steroid psychosis -- it makes me suicidal. I wanted a thymectomy -- my neuro tried to get me "strong" by using Plasmapheresis (I "died" -- bp dropped to 44/16) then IVIG (I developed aseptic meningitis). So, no surgery. I am allergic to almost everything -- have reactions to LOTS of meds -- antibiotics are a NIGHTMARE! Lymphoma and skin cancer run in my family, so no Cellcept. I have a double first cousin who had liver failure of unknown origin and had to have a liver transplant, so we are ALL afraid for me to try Imuran. It just goes on and on. At my last appointment, I was not so great, my neuro suggested that we just and see -- I was in total agreement. Neither of us wants to "kill" me again -- LOL!!
So far, I have managed to keep myself OUT of the hospital. I get a LOT of sleep -- drink water or weak tea CONSTANTLY -- try to remain as calm and stress-free as possible (hahahaha) -- stay AWAY from chemicals and PESTICIDES (my dogs now get garlic powder in their food instead of flea and heartworm treatments). I still go into exacerbations when I get sick OR stressed OR if I inadvertently run into a chemical or pesticide (like when the crop dusters fly over), but, otherwise, I am "ok". "Ok" means that I am NOT on a respirator, I am NOT in a wheelchair, and I am NOT in a hospital. (When I am in an exacerbation, I spend 3 months going from my bed to my recliner -- sleeping or napping most of the day.)
Actually, in the SUMMER months, I am "almost" normal. The sunshine does WONDERS for me (Vitamin D, anyone?) I have mostly Bulbar MG -- I NEVER can talk -- but, in the summer, I am even able to do "some" yard work!
Buildings are BAD for me -- my own house is ok -- but, I CONTROL the environment and air quality. At home, my ambulation is pretty good most of the time. About five minutes after I step into a store such as Wal-mart, I start dragging a leg -- and my DV starts in BIG TIME.
I have come to "accept" my life as it is -- and to see the blessings. A lot of MGers that I know ARE taking the BIG drugs and NOT doing any better than I am. Does this mean that they shouldn't take the drugs? That is NOT for me to decide. Does this mean that I SHOULD take the drugs? That is ONLY for me and my doctor to decide.
This is why I LOVE this discussion!! You have given us ALL a chance to say what we are doing AND why -- without pointing fingers or feeling obligations or feeling guilty. We EACH have the right to make our own choices -- to choose our own paths -- to live our own lives. We are all so different -- yet, this "disorder" makes us "kin".
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