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Tag: severe small fiber autonomic polyneuropathy

When You Handle More Than You Thought You Could

My friend Laura came to pick me up and bring me to the synagogue (Shul) every Saturday for the Jewish Sabbath services and every Jewish holiday. When she came to pick me up the day after I’d been promised by Tanya, the social worker at Hell-Crest Commons the nursing home I’d been living at for almost six-month and Jillian my main provider at the nursing home they would figure something out, I was far from settled.  I had been forced to take a break from calling places, and asking questions (because it was the weekend), but I was still busy making lists and doing more research, and worrying my brains out of my head.  It was like my brain was a washing machine set on the highest spin cycle and someone had put too much laundry soap in it so it was spraying bubbles everywhere.

I had plateaued in therapy … Find Out What Happens Next

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Shifting Relationships and a Poor Prognosis

Tuesday morning, I woke up early. Usually, I tried to sleep as late as possible because there wasn’t much to do in Hell-Crest Commons, the nursing home that I’d been living in for months now. The only times I’d get up early was if they for some reason scheduled PT or OT early. This time I had an appointment that afternoon with the Nerve Injury Clinic. The Nerve Injury Clinic was at Mass General Hospital in Boston. They were the ones that had done my skin punch biopsy while I’d been at Mass General for 5 months in 2014. Dr. Hurrowitz who was my primary neurologist there was the one following me. He had been the one that had originally come into my room at Mass General to tell me that he knew what was wrong with me and had proceeded to explain my new diagnosis to me.

This appointment … Find Out What Happens Next

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