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
I met Jeff at Side By Side Assisted Living and fell in love with him. After being best friends with him for 6 months we began dating. He decided to go so far as to convert to Judaism for me so that my family would accept him. At one point we thought he had a death sentence.
We had gone to his oncology appointment at UMass Memorial Medical Center with Dr. Swizzer. The doctor told him they had found a shadow on his liver. The shadow was possibly a recurrence of his liver cancer. They referred him to a more local GI doctor to take a better look at the scan. Dr. Xander’s job was to confirm whether or not it was cancer.
After Jeff’s oncology appointment he went to see his team coordinator for the liver transplant team. They explained that if Jeff had … Find Out What Happens Next
For the two days after I spoke with John, a very tall big man who walked with a serpent cane, all I could think about was meeting Jeff officially. John had informed me that he was really good at fixing computers and was in charge of the internet and computer system at Side By Side Assisted Living the place where I now lived despite the fact that I was only 24 years old. John had noticed the internet was down in my apartment and offered to fix it. We had a long conversation where he somehow picked up from me that I had a major crush on Jeff.
“Jeff and I go way back,” Jonh told me. “He’s amazing with computers himself. How about I bring him with me when I come over to fix your internet, and then the three of us can just hang out?” he suggested.
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
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
Feeding through a J port is supposed to help people with gastroparesis get much-needed nutrition that they can’t get by eating orally or by getting fed through a G tube. A person with gastroparesis has a paralyzed stomach so a J tube which goes straight into the Jejunum skips over that paralyzed stomach and goes right into the middle of the small intestine is a way to give the person.
Now that I had the tube feeds and the IV fluids, I was feeling a lot better physically most of the time as I wasn’t actively starving to death, but I would still have breakthrough periods where the pain would get intense, or I’d get nauseous and start vomiting huge volumes of bile and/or tube feed. The tube feed was going into my intestines through my J tube, which was supposed to prevent me from vomiting it up. Still, it … Find Out What Happens Next
Although I was born healthy, the normal-happy-kid-thing didn’t last long. At age eight, I started having trouble walking long distances and standing for prolonged periods of time. My legs would get all wobbly and the room would get swirly and I would just feel exhaustion sweep over me like a blanket covering me from head to toe. I would just want to lie down on my bed, curl up around my collection of teddy bears, and take a nap, and that was even before I developed a brain tumor.
Things had significantly deteriorated by the age of nine. By the age of ten things were so bad that I’d had my first hospitalization because it became physically impossible for me to hold down any food or drinks. I ended up with my first NJ tube and my first surgery. The diagnosis was gastroparesis. The rest of my childhood was spent … Find Out What Happens Next
As the holiday season was going into full swing and most people were worried about what presents they were going to get for their boyfriends or parents, I was busy worrying about my upcoming neurosurgery. Being sick and needing surgery was nothing new for me, but I had never had my brain operated on before.
At the age of ten, I’d been diagnosed with a chronic, degenerative form of gastroparesis, and as I got older it became evident that there was something further wrong with me as well, but no one knew exactly what. We certainly never had the idea that I had a brain tumor and would need neurosurgery to have it removed.
I spent my entire childhood, from 2001 to 2010 going in and out of hospitals for heart issues, blood pressure issues, hypovolemic shock, electrolyte issues, passing out, and complications from gastroparesis. When my blood pressure issues … Find Out What Happens Next
