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Tag: nausea

A Trip to the Edge of Life

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

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The Magic of a Little Clout and the Softening of Jillian’s Heart

I had been living in a nursing home that I had not-so-jokingly been referring to as Hell-crest Commons for months, with its’s evil nurse Ratched (Ahem, I mean Jillian) the nurse practitioner who was my primary provider and in charge of my care there.

After spending 5 months at Massachusetts General Hospital in 2014 I had learned that I had a severe and rare condition called Autoimmune Small Fiber Autonomic Polyneuropathy (Autonomic SFN) and would require IV fluids and tube feeds or TPN (IV nutrition) for the rest of my life.

Flash forward a year, I had spent three months at my local hospital for what started as a bowel obstruction and then just morphed into a whole bunch of other issues. During that hospitalization I just got so sick that there was no way I could just go home from there, so I had been transferred to Hell-crest Commons … Find Out What Happens Next

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Thyroid Issues and an Elusive Diagnosis

My birthday had been a momentous occasion. Ever since I was eight years old I had been suffering from a rare, degenerative, life-threatening chronic illness where tomorrow was not a guarantee (Just a few days after my birthday I’d had severe anemia and an underactive thyroid added on to my growing list of health issues), so my nineteenth birthday was something to be joyously celebrated.

I also was basking in the glow of having graduated high school and finished up my first year of college simultaneously. I had been homeschooled through half of middle school and all of high school so I was able to take college courses for both high school and college credits.

After my birthday and graduation, I suffered from what my parents called boredom or anxiety or a letdown.  They had a new theory every day. In my opinion, which eventually got backed up by Dr. … Find Out What Happens Next

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