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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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Hello all! Just feel like venting tonight - went to a great concert Saturday night (Elton John, Billy Joel - floor seats), but the arena was waaaay too hot and I started feeling awful amost immediately! MY entire body/face swelled to alomst twice their normal size and I was almost too weak to climb the stairs!
My best friend and poor hubby were with me, so Mike and I took a cab home while I iced down my face the entire time.............marked change by the time I got home, but it was so upsetting! Why on earth do I swell so much if it gets above 70 degrees? Do you guys have that as well? My whole face turns beet red and is enormous.........almost unrecognizable - ......eyes almost swollen shut.... ![]() Anyway, after that my entire weeked was shot......I stayed in bed with fans on me and took cold showers - still no change. I was planning on heading to work today, but that didn't work out - still to weak....... ![]() ![]() Dr. I told me that heat would always be my "enemy" - no joke! I used to tan all the time and was always cold and now I just cannot get cool enough...... Please don't misunderstand me; I know I am very blessed and lucky. I know that having my thyus removed was the right decision.It took YEARS to really get sick, so I know it will take a while to really feel better, but right now I am somewhat limited in my options, although I can (and do) work from home.....but my hubby and son suffer b/c they don't want to go anywhere without me - and I feel really guilty about that........... Heat just kicks my butt! No doubt about it! I need to move to a colder climate soon - very soon! Redtail - I don't know how you do it! I would love to visit Australia, but it is just too darn hot! Do the rest of you experience this extreme reaction to heat? Erin ![]()
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Erin . |
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