How do you deal with...Insurance, The Affordable Care Act and employment oh my!

[dizzydoll]

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.

[Marlene]

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.