It Helps to Have a Hero

Mary Fran Wiley is the one person I look up to most in the world these days. I’ve never met her in person; we met in a Facebook ballet forum. She is the reason why I haven’t quit Facbook. She is a ballet dancer. She is a tap dancer. She works. She has CRPS. She quietly fights every day to maintain the sense of normalcy that most people in the world never have to think about.

As CRPS awareness month draws to a close, I realize that I’ve been a horrible messenger. I’ve been practicing the art of hiding my tears, my struggles, my frustration, and my pain. I’ve been practicing polite, concise responses to the questions about my leg (careful not to mention the blows to my psyche) as the nerve block wore off over the past few weeks.

So now, I ask (beg) you to please read her story. She explains so well about the challenges I face and what I will have to face in the future (she is about 4 years ahead of me on this road with the chronic, incurable condition). Mary Fran has brought me immeasurable hope that I can fight to have a “normal” life (and wear pants) again, despite being debilitated by CRPS.

What Do You Mean, You Don’t Have Health Insurance?

Well, I mean that I don’t have health insurance.

No, it is not by choice. And, no, I don’t have to pay a penalty.

The simple, absurd, hard to believe truth is that I don’t currently qualify for any form of healthcare.

I continue to be unable to work, so I don’t have access to employer provided health coverage.

It stands to reason that private insurance companies don’t want anything to do with little, old, broke, broken, jobless me.

What about ObamaCare? Yeah, what about it? Did you know that if your state governor did not sign the Medicaid Expansion, then you have to meet a minimum income requirement to qualify for ObamaCare (a.k.a. the Affordable Healthcare Act)? It’s true. One must have an income, a job, which I am not able (but really really want) to have.

So then, what about Medicaid? Here, too, one must qualify in certain states. I must first be approved for Social Security Disability before I can apply for Medicaid. I applied for Social Security Disability benefits almost two years ago. I am awaiting my final hearing date. I did some investigation a couple months ago. At that time, I was still about a year away from being given a hearing date. Then comes the hearing, then the decision, then (if approved…) I am allowed to begin the process to receive Medicare and/or Medicaid.

A video went viral last year about it.

After this video circulated, people made fun of the woman, attacked her political views, and said she was an anarchist. My opinion is that she was a little too inflamed, belligerent, and bordered on being incoherent. But, my opinion of her doesn’t matter. She was right.

Shame on you Rick Scott.

His response about supposedly “creating jobs” is irrelevant to those of us who are physically unable to work, those of us who suffered personal misfortune and are consequently being held hostage by “the system.”

Last year, when trying to apply for “benefits,” the AccessFlorida representative suggested that I should move back to New York if I wanted healthcare. I responded by telling her that I don’t have a place to live in New York. She said, “yeah, you’re in a tough position.”

I could further expand on the ridiculousness of “the system” (a system into which I paid, without questioning, for over 20 years), but it is time for my next dose of coma-inducing nerve slowing medication. For which, I  pay out of pocket ($7 per pill).

It’s CRPS Day…(but everyday is CRPS day)

Apparently it’s tell your loved ones about CRPS/RSD day. And supposedly November is CRPS/RSD month. So here you go. This is a brief article summarizing the condition that I have in my right leg. CRPS/RSD is why every day is hard for me, and why some days are so much harder than others.