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Lupus

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penelope10

Senior Member
What is the name of your state (only U.S. law)? TX but my daughter lives in OK

Hello all, my eldest, Sissy who is 26 was recently diagnosed with Lupus. She has two different forms of Lupus, one is SLE and the other is Discoid . The disease has really taken a toll on her since she was diagnosed a couple of months ago. She weighs probably now only about 90-85 pounds and has a terrible rash on her face and head. Plus she has hair loss. She has extreme muscle aches to the point that sometimes she cannot get out of bed. What are the steps that can be taken in order for her to get disability. The disease has progressed very quickly and she literally looks ten years older than she did at XMAS time.

This is a person that was once extremely athletic, ran track, swam, was on drill team, and was a high school cheerleader. She has also always been an extremely hard worker, but now can barely function. I am thinking seriously about having her come home--she is rapidly becoming too weak to take care of herself. Any suggestions of where to start since it is becoming very evident that she is not capable of working and her health is not good at all. She is under a Dr's care, but her health is not improving.

Many Thanks,

Penelope
 


penelope10

Senior Member
SSI comes to mind if she's really that bad.
Thanks CC. Do you have any idea how to get the ball rolling on this, where she needs to go etc.? None of my family has been on SSI, so I'm not sure of where to suggest that she start. (She has not thought of this herself). She came into town for a funeral this weekend and her appearance and behavior scared the crap out of myself and friends.

She literally now looks like she's 36 instead of 26. She confided to my best friend that there are days that her muscles are so painful that she can't even get out of bed! When she was here over the weekend I personally witnessed how painful it was for her to get out of bed on Sunday morning.

Also she brought home some paperwork for me to look over. I was shocked because it seemed pretty easy and she has always been a very smart girl. So her thinking does not seem to be as clear as it once was as well as other physical symptoms....

The Dr. told her that she has the CO2 levels of a heavy smoker. (And she does not smoke)
 

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