Tag: brain tumor
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 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
