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Old Mon Oct 5, 2015, 01:37 PM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
I don't have any good suggestions to help you through all of this. Our circumstances were much different back in 2002 when John was diagnosed. He was employed at the time and I had really good health insurance from my employer. John was lucky enough to have long term disability insurance which helped a lot.

Regarding SSA disability...it usually doesn't kick in right away unless you are expected to die within the year you get disabled. So it's difficult to get it in the year you are diagnosed even if you are diagnosed with cancer. It usually takes one or two tries with SSA and may need the help of a SSA lawyer.

Getting people to understand is not so easy. John too had his peers complain that he got special treatment because of illness....he was allowed to work from home at times and was on a reduced schedule. He got the normal....you don't look sick or maybe you need take some iron, etc. People have a difficult time understanding illness unless they have a personal experience with it.

This is not an easy disease to deal with and it's not cheap to treat either. Depending on how often you see your doctor, you may be able to push those appointments further apart. Maybe get your lab work done at a lab that has weekend hours. And maybe, depending on your lab work, you can forego a doctor's visit as long as they get the lab results.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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