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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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01-18-2023, 08:01 PM | #1 | ||
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My new Assisted Living place put me through the ringer since Friday. Maybe some of this stuff is usual but with my very undertreated body it is too much. The Administrator has been ignoring my doctors letters. Now in October this left me in tears when it ended in her barging into my apartment smiling and being chatty as her partner generously sprayed pesticides all over. On Friday she decided the whole thing was gonna be the same. I called my State Omnsbudsman and told her here we go again and that she is the only one with enough power to stop this! So I won and no spray this time. She had to send my doctors letter to corporate and THEY said no to her. So no wonder I have severe brain mush. Sculptor44
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01-20-2023, 09:33 PM | #2 | ||
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My biggest frustration is that I was gonna go to ER Monday for at least the 125 Solumedrol. I needed it 2 weeks ago. But the Administrator said ok no Pesticides but then she had to inspect my unit. I had to cancel the trip to tidy my place. If I had been aware of this 2 weeks ago the homecare here and I could have worked on this in reasonable pieces. My brain is still unusually poor.. Admittedly this is the worst I have been at tracking my meds. I hope my new family doctor on February 17 will work with me in a truly supportive way. My Thinking was so much improved by the IVIG. But that single dose was last March. I suspect the good it did for the new problem in my chest may be returning. My new Caregiver my daughter hired to do doctor visits with me has helped. She started in December. I managed to get one of my sculptures out in my new place. I so so needed that! Sculptor 44
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"Thanks for this!" says: | Lara (01-24-2023) |
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