What do you want others to know about lupus?
I'd like to be part of a program, similar to Undercover Boss. Speaking with others who have Lupus, finding out what they do and don't understand, bring to them educational tools available for them to involve their Family, Friends, or other Caretakers/ as their importance needs to be addressed as well.Go region to region around the country where there are chapter
Why is lupus a cruel mystery to you?
I've been disabled since 2006.I had back surgery and thought it ruined my life. I never actually healed or there were multiple issues manifesting themselves . It seemed easier to just leave it at Fybromialga! I quickly defied that DX. I wasn't going to be tossed in The Menopausal Crazy Lady Folder and put away. I was soooo angry, I brought my husband with me so I wouldn't go to jail when my Physician looked at me and suggested it could be bi-polar-Really?????? Trust me, only singular Polar necessary. I got up told him I have Lupus. Fibro-Not my major DX. I blew a gasket , I told him Very clearly what I thought using every colorful word I had. He said Oh my!! I said don't give me that crap. I;m pissed and no one wants listen because I'm not the doctor. I was frustrated. They didn't know what to do with me or what tests to run because there isn't a Specific Test to determine if you have Lupus.If this miracle occurred, it would certainly assist Lupus Victims a better shot at a full life and spare them some of and Depression that goes with Flareups.
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