I am hurt right now and I am angry. I am also having a flare of my MECFS as the price I pay for trying to enjoy a semi-normal holiday weekend with my family.
I just read a facebook post from a desperately ill ME patient that had been turned away from the University of Pennsylvania. She has lost 20 pounds in the last four months and is at 83 pounds. The reason she was turned away: her diagnosis- Chronic Fatigue Syndrome. The hospital was even threatening to call the authorities as she begged for their help.
This post reminded me of the handful of times that I have been so desperately ill and beside myself with ME that I was suicidal. My obviously worried family would beg me to go to the hospital, but I had been down that path before. It would be a waste of hundreds of dollars for NO HELP WHAT SO EVER.
What will it take for ME to get the respect it deserves? It makes me think of the start of Vietnam when Buddhist monks would burn themselves in protest of the Diem regime. Is that what it would take?
I am starting to feel that I would be willing to give my life for this cause. This feeling coming from so much frustration at the discrimination I myself am facing as an ME patient.
I have been denied twice for SSD and have been waiting 16 months to see a judge. BCBSNC is trying to weasel out of paying for an MECFS specialist, and now to hear about the discrimination others are facing is too much for me right now.
I have a beautiful little girl that I can not leave, otherwise, I would consider this.