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
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.
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
