Tag: gastroparesis
by Becca on January 3, 2021
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
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Tagged as: Baystate Home Infusion back in 2015, brain tumor, chronic intestinal pseudo-obstruction, chronically ill, daily IV fluids, diabetes insipidus, dysautonomia, end stages of small fiber autonomic poly neuropathy, first appointment with Dr. Rose, G tube to drainage 24/7, gastroparesis, global dysmotility, high heart rate, hypothyroid, importance of advocating for self, increase doses of Florinef and Midodrine, Jeff being a sweetheart, life threatening chronic illness, low blood pressure, Mass General "Patient Gateway Portal", Medical Arts Complex in Pittsfield, medical PTSD, Muscles Harford, nephrology appointment, Port-a-cath, Sick, skin punch biopsy of less than 1%, Small Fiber Autonomic Polyneuropathy, spoonie, total digestive tract failure, tubie, wasting time waiting for chair van ride, wheelchair van ride paperwork
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 29, 2020
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
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Tagged as: being underweight, central line, Chronic illness, complex care team, dehydration, diabetes insipidus, dysautonomia, foley catheter, gastroparesis, GJ tube, hypoglycemia, hypokalemia, hypotension, IV fluids, J tube versus G tube, lethal heart rhythms, low blood sugar, low potassium, Mass General Hospital, nasal airway, nausea, neuropathy, nursing home abuse, nursing home neglect, ombudsmen, pain meds, Port-a-cath, Sick, Small Fiber Autonomic Polyneuropathy, spoonie, trauma room, tube feeding, tubie, ventricular fibrillation, ventricular tachycardia, vomiting
by Becca on November 2, 2020
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
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Tagged as: Chronic illness, conversion disorder, degenerative disease, dysautonomia, gastroparesis, GJ tube, hospice, illegally invoked healthcare proxy, IV fluids, IVIG, lethal heart rhythms, mother daughter bond, nerve injury clinic, never give up, ombudsmen, psychiatric nurse practitioner, Sick, Small Fiber Autonomic Polyneuropathy, spoonie, terminal illness, tubie
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 December 19, 2019
Ever since I was ten years old I had carried a diagnosis of a chronic, incurable disease called gastroparesis. Really my issues started at age eight and become undeniable around age nine, but back then everyone wanted to blame my GI symptoms on things like stress, control issues, behavior problems or even eating disorders. At that point, there was no mention of any pituitary tumor.
At age 19, I found out that I also had a brain tumor growing on my pituitary gland. My kidney doctor, Dr. Green, had ran test after test on me, swearing she’d figure out what was wrong with me until on a whim she ran a 24-hour urine collection for cortisol and creatinine on me,
She didn’t expect to find much, as my blood levels of cortisol were normal, but she had exhausted all other options and knew something was wrong with me. Dr. Green … Find Out What Happens Next
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Tagged as: benign tumors, blood tests, brain tumor, Chronic illness, crappy veins, CT scan, difficult IV stick, endocrinology, gastroparesis, malignatt tumors, Mass Genertal hospital, MRI, neurosurgery, Port-a-cath, pre-op testing, Sick, spoonie, tumors, type 2 diabetes
by Becca on December 8, 2019
My Safety Net
My safety net was what my whole life manageable. My life was pretty much one big medical issue. Luckily I had two parents and two brothers to support me. My safety net was made up of two people, my mom, and my dad.
They didn’t always make the best decisions for me, in fact, sometimes their decisions messed things up for me really badly, but they loved me 100% unconditionally and always tried their hardest to make the best decisions for me.
It all started when I was eight and began dealing with muscle fatigue, then when I was ten I first got diagnosed with gastroparesis (a paralyzed stomach) and had to have emergency surgery to have 2.5 inches of dead bowel removed and then had to have an NJ tube placed.
My NJ Tube
An NJ tube is a tube that goes in through your nose … Find Out What Happens Next
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Tagged as: borderline personality disorder accusations, brain tumor, Chronic illness, cortisol, denial, family issues, gastroparesis, hospitals, Mass General Hospital, mother daughter bond, MRI, nausea meds, neurosurgery, pain meds, pituitary tumor, ptsd, Sick, spoonie, testing
by Becca on November 30, 2019
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
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Tagged as: ACTH, adrenal glands, anesthesia, brain tumor, Chronic illness, conscious sedation, cortisol, dysautonomia, femoral artery central line, fluid and electrolyte issues, frienship, gastroparesis, high cortisol, inferior petrosal sinus sampling test, interventional radiology, invasive testing, monitored anesthesia care, neurosurgery, overproduction of cortisol, pain control, pituitarry tumor, Sick, spoonie, stress hormone, surgery
by Becca on September 16, 2019
I’d had a rough ride through childhood and had spent it going in and out of hospitals due to gastroparesis, an inability to maintain a normal heart rate and rhythm, blood pressure issues, frequent passing out, hypovolemic shock, frequent infections, and dehydration. For much of my childhood, I’d been dependent on an NJ tube for feedings. I’d been followed by an adolescent medicine doctor, a gastroenterologist, a cardiologist, a psychiatrist, a therapist, an infectious disease doctor, and a nephrologist (kidney doctor). It was a couple of days before my one-month follow-up with Dr. Green, the nephrologist, but on July 2nd I was celebrating my nineteenth birthday and I was also celebrating my graduation from high school and the end of my first year at Holyoke Community College. My family and I were too busy to worry about how disabled I was, we were celebrating two major milestones in my life … Find Out What Happens Next
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Tagged as: bezoar, birthdays, bowel obstruction, caregiver abuse, Chronic illness, CLEP tests, college, disability, disabled, disease, feeding tube, gastroparesis, graduation, highschool, homeschool, hospital neglect and abuse, MassRehab, medicaid, motility disorder, office for students with disabilities, ptsd, Sick, social security, spoonie, SSDI, SSI, tubie
by Becca on September 15, 2019
On July 2nd, my parents, paternal grandparents, maternal grandmother, cousins, and a few friends from my homeschooling groups, and college were all gathered to wish me a happy birthday and celebrate my high school graduation.
This was a day that back in the sixth and seventh grade no one was sure would ever happen. Yet here we were, with me already having completed a year of college, and maintaining a GPA of 4.0.
To your average Jane Doe, completing a year of college and turning nineteen might not seem that monumental (well I’ll toot my own horn, maintaining a 4.0 GPA is pretty impressive), but when you have a degenerative chronic illness nothing can be taken for granted. I was diagnosed with gastroparesis at the age of ten and my health has just steadily gone downhill from there to the point where more of my childhood was spent in the … Find Out What Happens Next
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Tagged as: birthdays, celebrations, Chronic illness, college, daddy's girl, dumping syndrome, family, father-daughter moments, gastroparesis, graduations, high GPA, homeschooled, NJ tubes, parties, Sick, spoonie, starbucks, teenager, tubie
