I had been at Hillcrest Commons (Or as I liked to refer to it, Hell-Crest Commons) for 3 months. Jillian, the nurse practitioner overseeing my care, decided that we needed to have a meeting with all of my care team and my parents.
The meeting was an absolute disaster.
Every time I tried to talk to Jillian she insisted that my disease wasn’t as bad as I said it was and that she could get me off of most of my meds, off of the IV fluids, get my port removed, get me eating again, get my GJ tube removed, and get me walking with no assistive devices. She had shared this viewpoint with my parents and got them so full of hope that they were willing to do just about anything with me or to me in order to get me there.
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
A meltdown in my room of Hell-Crest Commons, the nursing home I’d been living in for three months, had prompted that awful nurse practitioner, to send me to the hospital to get evaluated by psych crisis. Jillian was my primary care provider at the nursing home.
Who wouldn’t have had a meltdown after that meeting though? At the meeting they told me that I was faking all of my illness because I liked being sick and that she was going to stop my IV fluids. My IV fluids were keeping me alive. They were one of my main treatments, but that wasn’t even the worst part of the meeting.
At the meeting they had dropped the bomb on me that I was never allowed to go back to living at home.
After the meeting I went back to my room where I couldn’t stop crying. Tanya the social worker, and … Find Out What Happens Next
The crazy primary care provider at Hell-crest Commons, the nursing home I had been living at for a little over three months was in the process of killing me. She was trying to wean me off of my life-sustaining IV fluid infusions that I ran all day and night through my port-a-cath in my right chest. Over the last two weeks I had been weaned from 2 liters too 1.25 liters and each drop made me sicker and sicker.
Three days after Jillian took me down from 1.5 liters of my special combination of IV saline, potassium, dextrose, and multi-vitamins to 1.25 Liters a day, they had to rush me had been rushed lights and sirens to Trauma Room One of Berkshire Medical Center. It took them a while too stabilize me in the ER, but once they did they brough me to my room in the ICU.
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
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.
Life is a funny thing, you squeeze onto it too hard and it slips out of your grasp.
Starting from when I was eight years old I’ve been sick.
I had my first hospitalization and my first feeding tube and my first surgery in the year 2000 at age 10. In 2012 I had a tumor removed from my brain. In 2013 I was life-flighted from my local hospital to Mass General Hospital to have a brain bleed repaired. In 2014 I became so incapacitated by a mystery illness that obviously went deeper than just gastroparesis alone or just a brain tumor alone, or just a neurogenic bladder alone, that I spent 5 months at Mass General hospital getting stabilized and getting tested until we figured out what was wrong with me. In the spring of 2015 I had spent three months at my local hospital for a bowel obstruction … Find Out What Happens Next
As time went on at Hell-Crest Commons, the nursing home I’d been living in since July of 2015 I was slowly settling in. I would work on classes for college online (I was only a couple classes short of graduating with a degree in Professional Writing Studies and a GPA of 3.98 from Elms College), I would go to some of the activities groups, I had gained privileges to wheel myself around the grounds of the nursing home by myself and I would go to the coffee shop and chat with various visitors, people from my unit that I met down there, and people from other units. Some days I would go down to the lobby to sit on the couch and read or work on a personal writing project or make personal phone calls to friends from Facebook or family.
