Tag: chronic illness blog
by Becca on January 26, 2022
Trying to Maintain Normal Vital Signs
My life has never been what you would call easy or simple. Every day was a struggle to even attempt to maintain normal vital signs. Doctors unfamiliar with Small Fiber Autonomic Polyneuropatny had no idea how to treat me. Over the last few years, I had been losing more and more mobility. At this point, I was wheelchair-bound. I needed one or two people to help me stand and pivot to transfer in and out of my wheelchair.,
Because of my gastroparesis, I could eat nothing by mouth and was on tube feeds 24/7. My body was starting to reject the tube feeds. The problem was, I had such a poor immune system that the doctors were reluctant to start me on TPN (IV nutrition). Because of the high sugar content in TPN, it is a breeding ground for infection. In addition to the … Find Out What Happens Next
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Tagged as: Chronic illness, chronic illness blog, dysautonomia, end stages of small fiber autonomic poly neuropathy, gastroparesis, hospital
by Becca on December 7, 2020
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.
This was a big problem.
The top … Find Out What Happens Next
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Tagged as: bad family dynamic, Berkshire Health Systems, Chronic illness, chronic illness blog, conversion disorder, department of mental health, Dr. Anne Oaklander, family issues, father daughter relationship, feeling abandoned, gastroparesis, GJ tubre, IV fluids, IV nutrition, loss of mobility, malabsorption, Mass General Hospital, neglect of a disabled person, nursing home, nursing home abuse, nursing home neglect, oxygen dependent, Port-a-cath, Sick, Small Fiber Autonomic Polyneuropathy, small fiber neuropathy, spoonie, TPN, tubefeeding, tubie, wheelchair bound
by Becca on November 30, 2020
After having been at Hillcrest Commons Nursing home for three months and having a meeting about my progress I was feeling devastated. I had just found out that my parents were kicking me out of the house because I too was sick and that unless I found a way to get rid of my GJ feeding tube my port-a-cath, my oxygen (that I used overnight and occasionally during the day), to stop using catheters, and got out of my wheelchair than I would not be allowed home. According to the top specialist in the world on my condition, I was just going to continue getting sicker and I would never be able to eat by mouth again, would continue to lose mobility, would never be able to urinate on my own again, and would need oxygen more and more as my disease progressed. This meant I would never be allowed … Find Out What Happens Next
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Tagged as: abandonment issues, ambulance, anxiety, bad family dynamic, Berkshire Medical Center, blog, chronic illness blog, chronically ill, depression, desatting, emergency room, EMTs, family issues, feeding tube, GJ tube, Jonestown massacre, low blood sugar, medical PTSD, mental health eval, mental illness, nursing home, nursing home abuse, nursing home neglect, oxygen, oxygen dependent, Port-a-cath, psych crisis, ptsd, Sick, spoonie, tubie, writing
by Becca on November 25, 2020
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
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Tagged as: bad family dynamic, central line, Chronic illness, chronic illness blog, dehydration, electrolyte imbalances, emergency room, family issues, health care proxy, hypotension, IV fluids, low blood pressure, low blood sugar, low magnesium, low phosphate, low potassium, nursing home, nursing home abuse, nursing home neglect, ombudsman, oxygen dependent, Port-a-cath, POtS, psychiatric crisis, Sick, Small Fiber Autonomic Polyneuropathy, small fiber neuropathy, spoonie, suicide precautions, tachycardia, tubie, wheelchair bound