When you have any sort of severe life-threatening chronic illness, there is a terrible feeling of being at the mercy of the medical system. If your doctor is in a bad mood it could be the end of your life. That is not an exaggeration.
I suffer from a disease called Small Fiber Autonomic Polyneuropathy, which is a very rare condition that most doctors have never even heard of, because of that I often get denied the proper treatment even though I know what the right thing to do is. The doctors don’t like to admit they don’t know something so they just plow forward with their ideas and I’m the one that gets hurt or sicker or almost dies (not an exaggeration, I’ve lost count of how many times I’ve almost died due to doctors who don’t know about my illness deciding they know more than me and going … Find Out What Happens Next
During a three month long hospital stay for a flare up of my autoimmune-mediated small fiber autonomic polyneuropathy I went downhill so fast that I couldn’t even sit up on my own, I could barely lift my head off the pillow some days, let alone bear weight and transfer into my wheelchair, I went in ambulance for an hour-long ride down to Hillcrest Commons the nursing home/rehab that I was supposedly going to for a few weeks or months for intense rehab, so that I would get enough strength to function outside of a hospital or nursing home environment.
Hillcrest Commons is located in Pittsfield which is in the Berkshires (part of Western Massachusetts) so it’s a very beautiful location. It’s right on the border of upstate New York and it’s near the Vermont border as well.
Living at Hell-Crest Commons was a nightmare. After a three-month-long hospital stay at my local hospital for a flare up of my autoimmune-mediated small fiber autonomic poly neuropathy (that was getting worse and worse every few months) I had gotten really deconditioned.
“You need a whole lot of PT and OT to get you back to a point where you can function at home and in the community,” the doctor and case manger both had explained to me months ago. My impression of the situation was that I was going to Hillcrest Commons for a few months for therapy and then going back home.
After three months at the nursing home, we had a big meeting and they dropped a bombshell on me. My parents weren’t going to let me come home. They didn’t want to take care of me anymore because they wanted their ffreedom. I was a burden … Find Out What Happens Next
