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  Old  June 15th, 2018, 11:35pm     #16
serendipity is offline
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My daughter was just diagnosed with lupus last year.. at 17. That was so hard to hear as a mother. I wish you the best of luck.. please share what works for you.
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  Old  June 15th, 2018, 11:58pm     #17
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Welcome back, Good Luck, lots of wins and hoping your health will improve and you feel better.
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  Old  June 16th, 2018, 12:07am     #18
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Welcome

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  Old  June 17th, 2018, 4:51am     #19
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I've had Lupus for eleven years now. I couldn't keep up with the demands of work, so I stopped working after four years. I went on disability after eight years. I can't imagine working now. I wouldn't last a day. For one thing, I need 10-12 hours a sleep a day, just to ward off flares. I had to stop taking Plaquenil after ten years, because I failed the annual vision exam. I'm getting ready to take CellCept, my second try at immunosuppressants.

The worst part of having Lupus, in my experience, is getting it through your family's and friends' thick heads that just because you don't look sick doesn't mean you aren't. After eleven years, I'm still trying to get them to see me as disabled, not simply retired. They still take it personally when I say no, I can't do this or go to that. It's frustrating.
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