Tag: POtS
by Becca on March 26, 2021
People might think that living at an Assisted Living at the age of twenty-four would be miserable, but I was living in one of the Independent Living apartments, and it was like having my very own apartment. It was a huge improvement on the nursing home I’d been in for the six months prior. I had made friends with a man named Jeff, who was so cute and attractive and I was completely in love with him (but too scared to say anything), and I’d also made friends with a man named John. I had Lesley, a really kind and caring private aide, taking care of me every day, I was finishing my last few projects for school and then I would be graduating summa cum laude with a GPA of 3.98 from Elms College with a BA in writing.
John and Jeff would come over to my house in … Find Out What Happens Next
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Tagged as: being naive and missing alarming clues, being overpowered due to diability, being unable to fight back while getting molested, calling for help, Chronic illness, fighting against the molester, flashbacks to childhood abuse, gastroparesis, getting forced into sexual misconduct, getting molested, naive, POtS, set up appointment with PCP, Sick, Small Fiber Autonomic Polyneuropathy, spoonie, strip checkers, surprise early morning visitor, tubie, two new best friends, Visiting nurse, weakness, wheelchair bound
by Becca on March 21, 2021
I hadn’t even been living on my own for a full week, and already, disaster had struck. About five days earlier I had been discharged from the nursing home that I not-so-lovingly referred to as Hell-Crest Commons where I had been held prisoner for six months, I had then moved into the Independent Living section of Side By Side Assisted Living in Pittsfield. While I had been loving, living at Side By Side, earlier that morning I’d been molested by a man that I thought I could trust. I’d been molested by a man that I thought was my friend.
Not knowing what to do, I had called the main building, and Marina, the overnight staff had picked up and was on her way over from the main building to my apartment to help me out.
I just sat there in my chair waiting for her.
My heart was still … Find Out What Happens Next
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Tagged as: called for help from overnight staff at main building, called my mom about molestation, chronically ill, feeling defenseless and vulnerable, gastroparesis, GJ tube, global dysmotility, got molested, in acute post trauma phase, Port-a-cath, POtS, Private duty CNA brought me to main building to report molestation, reported molestation to CNA staff from assisted living, Sick, Small Fiber Autonomic Polyneuropathy, sore from physical grabbing of leg, spoonie, total digestive tract failure, tubie, vented to friend from Hillcrest Commons Nursing home, wheelchair bound
by Becca on February 15, 2021
In December of 2015, I was finally discharged from Hell-Crest Commons, the nursing home that I’d been living in for the last six months, and I had moved into the Independent Living Section of Side By Side Assisted Living where I would be getting something called PCA care which basically meant people that I chose myself, and that I was the boss of and would train would be coming into my apartment at Side By Side to help take care of me. because it would be 2 to 4 weeks before the PCA care kicked into effect my parents had agreed to pay out-of-pocket for a private duty aide until then.
Lesley, the CNA who was going to be my private duty aide, was right on time to meet Christy, my mom, and me, over at my apartment on the evening of the Tuesday I moved in. She drove a … Find Out What Happens Next
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Tagged as: anemia, atelectasis, body wide weakness, chronically ill, diaphragmatic weakness, extremely immunocompromised, first crush ever, gastroparesis, GJ tube, global dysmotility, heart arrythmias, hypothyroid, issues retaining electrolytes in kidneys, low white blood cell count, meeting new private duty CNA, neurogenic bladder, neuropathy, On G tube to drainage, on IV hydration, on Tube feedings through J tube, orthostatic hypotension, parapalegic, Poirt-a-cath, POtS, relpasing brain tumor, seizures, Sick, Small Fiber Autonomic Polyneuropathy, spoonie, straight catheters, total digestive tract failure, training new private duty aide, tubie, using supplemental oxygen, wheelchair bound
by Becca on January 27, 2021
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.
“That … Find Out What Happens Next
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Tagged as: chronically ill, dysautonomia, gastroparesis, getting to know my life partner, global dysmotility, Jeff's funny stories, Jeff's story of liver failure, meeting my first crush, my first crush, POtS, Sick, Side by Side Assisted Living, Small Fiber Autonomic Polyneuropathy, spoonie, total digestive tract failure, tubie, wheelchair bound
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
by Becca on September 27, 2020
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
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Tagged as: ambulance rides, atelectasis, autoimmune, autonomic neuropathy, dehydration, dextrose, diaphragmtic weakness, dysautonomia, family issues, fluid and electrolyte issues, gastroparesis, GJ tube, hospital, hypokalemia, immodium, IV fluids, IVIG, low potassium, nursing home, oxygen dependent, pepto bismol, POtS, small fiber neuropathy, therapy, tube feeding, tubie
by Becca on July 23, 2019
My pediatric cardiologist was extremely concerned about me by the time I was thirteen. He stayed in close contact with Dr. Kaye, my adolescent medicine doctor. When I was lying down on that crinkly white paper on the exam table, my heart rate was usually about 120. Sitting up it was usually about 135, and when I stood up, it was in the 150s. Neither Dr. Kaye or Dr. Oster, the cardiologist, ever said anything about those numbers being abnormal, but I read it right off their faces.
After they left the room I looked it up on my phone. A normal heart rate for a teenager is 60 to 100 beats per minute, and it shouldn’t fluctuate like that with changes of position.
Dr. Oster said they wanted to run a bunch of tests on my heart shortly before my fourteenth birthday. I was not surprised.
The EKGs and … Find Out What Happens Next
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Tagged as: a fib, adenosine, atrial fibrillation, atrial flutter, cardiology, cardioversion, Chronic illness, dysautonomia, EKG, emergency room, heart monitor, hospital, hypokalemia, hypotension, kidney issues, low blood pressure, low potassium, passing out, pediatric cardiology, pediatrics, postural orthostatic tachycardia syndrome, POtS, sinus tachycardia, spoonies, SVT, syncopal episode, syncope
