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Living with Illness Coping with disease, getting help, dealing with family, staying optimistic, quality of life, hospice care

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Old Mon Oct 5, 2015, 02:50 AM
dizzydoll dizzydoll is offline
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Join Date: Jul 2014
Location: Tx
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How do you deal with...Insurance, The Affordable Care Act and employment oh my!

How is it that people are somehow managing work and illnesses like Aplastic Anemia? What has helped? I'm having trouble finding a position that pays enough to cover medical insurance and bills, that is also flexible when time off is needed for labs and dr appointments? The Obamacare is a slippery slope when it comes to income...in other words the system is a catch 22 setup. I'm finding that its harder to find good employer supported healthcare that isn't HMO or structured for bare minimum standards. Any thoughts? My dr says I'm perfectly capable of working and I feel fine but its not that simple. One recent example...job interview reveals a position that has insurance options but its a private insurance set up and run by the company and it would cost almost half the paycheck before taxes. How to do people make it? I'm from Texas which is an employment at will state...no job protection as neither party is obligated. No one understands SAA. I hate to say it but if it were classified as a cancer it would be easier to get people to understand all the dr apts etc. I don't qualify for disability.
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Diagnosed SAA Oct 2013, HATG DEC 2013, Partial response, Relapse July 2014, stable on Cyclosporine. KEEP FIGHTING! And this same God who takes care of me will supply all your needs from his glorious riches, which have been given to us in Christ Jesus.Philippians 4:19
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Old Mon Oct 5, 2015, 01:37 PM
Marlene Marlene is offline
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Join Date: Oct 2006
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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 January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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