What I have is Adult Onset Still's Disease. It's also called Adult Onset Juvenile Rheumatoid Arthritis, a sister disease to Lupus but there are different thinkings about AOSD. The point being is that it was once an orphan disease but people are being diagnosed with it more and more and yet theres little research being done on it. Flare ups are sometimes sudden, sometimes short lived, sometimes dibilitating, sometimes long lasting but so miniscule that it just reminds me from time to time that it's around and I shouldn't do too much. Here's the fun part; I have secondary Fibromyalgia.
During the winter in Florida I'm in my glory! The humidity is low, the outside pressure is fairly steady, and I have to admit I love the cooler weather. The summertime however, (forgive the pun) not so hot. For those that don't know, AOSD causes me to perspire even if it's 70 degrees and my skin is cool (it's a lovely picture isn't it?) with pretty red blotches covering my hands and arms, legs and feet. I also get the added bonus of retaining water (Hoover Dam has nothing on me), as if woman don't do that enough so I get to take water pills and run to the bathroom quite often. And so begins the cycle of exposure to other problems... oh my dears, it's the never ending story.
Now for the good news and yes, there is good news. I've learned to appreciate. Each day is a gift with or without pain, my family is no longer an annoyance (did I spell that right?), and my 16 year old son can anger me all he wants because it just makes me love him more and remember what I put my parents through (sorry folks). As for my husband, until recently he didn't realize what I dealt with on a daily basis. He became ill, unfortunately and now he treats me a lot better but even so, even before that, I've always respected, loved and wanted to smack him "upside" his head (as the kids say).
A little humor goes a long way. My energy is running low, another aspect of both illnesses (lovely). I've had AOSD for 14 years now and FM for 10. I've finally been put on a drug for the FM and it's working wonders for me (Savella). Now I'm going to say this not as a self depricating statement but one of self respect and honesty... Listen to the Florida fat lady: smile, laugh and enjoy, you'll feel so much better!
Ellen