Self Advocacy

tiarawithoutsilver 001Even warrior princesses crash and burn sometimes….

 

Oh, the time it takes! I lost my grant to get through the part D ‘coverage gap’ or also called ‘Donut Hole.’ I have to be on “Straight Medicare” because I see so many specialists and even my primary won’t accept one of the “Medicare Disadvantage Plans.” He says they are necessary (“Straight Medicare) for ‘Survivability’ but then, Dr. Morton can be a tad dark.

But right now, so am I? How am I going to afford my drugs in the spring of next year?

When they talk about Mental Health Reform, they should start with the Donut hole, because if you get someone all fixed up with mood stabilizers or antipsychotics, and then the donut hole hits…they go all the way back to square one. It’s Sisyphean even. Rolling that stone up the hill over and over only to have it roll down again.

There has got to be some rich person out there who would love my tardive dyskinesia book to be published, give me a small grant so I can pursue that. I’m already hunting down sources so I can get metrics. But who is listening to me, anyhow.

Nord, National Organization for Rare Diseases, has blown off four phone calls and four emails.

Why?

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