Yep. I went to Belize! My hubby was able to get the whole trip on barter, so we sayed @ the most beautiful place
www.aprivateisland.com and it was amazing! What wasn't so amazing was how sick I became once we returned.
My docs still have no idea what I caught - it still says "unspecified disease of the lung" on my chart. On the positive side, I do see my new pulm in a few weeks and am getting another scan with contrast - just to make sure my lungs are OK. Actually, I have great lungs - which is shocking since I smoked most of my life, but that's another story......
Mestinon can make you twitch. Did you know that? I had no idea until a few weeks ago.
Serious illness can really mess with MG. Really mess with it.
I know roids are awful. I know they are. But they can really improve your quality of life. Before them, I wasn't even able to get out of bed or walk unaided. Granted, I was really sick, but for me they have been a real blessing/curse. I'm still @ 60 and it has been crazy, but I am so thankful that I can take them. Don't get me wrong, they have caused wild mood swings, acne, weight gain, all of it, but I am just so thankful to BE HERE that I 'll take that any day - OK - most days!
Imuran has been pretty great as well. I take so many pills that I feel like a walking pharmacy, but I realize that this is what I have to do until I go into remission - something I pray for every day and night!
So, you live here, too? I just love Texas! We have a place down by Huntsville that I would gladly move to, but it's just too darn hot there! Plus my hubby has 2 children here and we just can't move until they are ready for college - 2.5 yrs to go!
Does the heat affect your MG? I've noticed that I wilt when it is hot! And my face blows up to twice it's size!!!!!!! Not a sexy look!
It was great hearing from you! I'd love to hear how you are and how your family is!
Hang in there!
Erin
Quote:
Originally Posted by Gdbyrd
You've been to Belize!? Sorry your trip there had a bad outcome : / I too seem to have gotten worse since being sick. This past november I had a small cold turn into pneumonia..for a long while I felt awful, and since I haven't been doing near as good.
Today I've had a lot of twitches in my arms, face, legs and neck. It's really annoying.
She has talked to me about the steroids..I really, really don't want to take them though. Getting steroid dependent at my age would not be good. My levels continue to go up and up. I think it's something I'll have to look into eventually. That and Imuran.
My problem with my profession is that taking any sort of immunosupressant could be bad. I'm around sick people my entire day and get sick enough as it is..I can't imagine it with a lower immune system.
Again, it was nice to hear from you! I live about 4 hours south of you Erin, in the Rio grande valley. Small world, despite the size of texas, lol.
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