Guest guest Posted November 4, 2007 Report Share Posted November 4, 2007 I have a sister who goes from not wanting to be around me because she is afraid she might catch what I have to thinking I am faking the whole thing. She tells me I am not sick enough to be on disability or use the placard. LOL I am in a wheel chair. She tells her friends I will be fine shortly. As soon as I work more at it. If I am tired she asks if I stayed up all night or went to a party. I totally understand this. I have 2 sisters and until my older sis had to go back and forth to Sac with me a bunch of times, she didn't get it either. Boy was she humbled when the neurologists first comment about my systemic sarcoidosis was that he truly hoped it wasn't "neuro." Jann asked why-- and he said "we don't know the cause, and we don't have anything to treat it with, so the progression is life threatening. But your sister already knows this.. Hopefully we can get it to slow down-- and that's the best we can do." Fortunately for me, we have slowed the progression--and I'm still much more functional than many. Can I work, no. Do I do something today, and need to hole-up for the 3 or 4 days-- yes. With our family, I think that it is important to order several copies of FSR's sarc brochure, along with the one on Sarc and your heart and share it with them. Get the booklet from IDA Ivisible Disabilities Advocate also. There is no reason that we have to put up with our families deciding that we are faking it. Their denial doesn't have to be our issue. Educate them, beating them over the head with the brochures if necessary.... Sincerely, Tracie NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
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