Browsing: Living With Life Limiting, Life Threatening Illness
by Becca on September 30, 2019
About four or five years after my heart problems had climaxed, my blood pressure took a surprising turn.
My whole life my blood pressure had run so low we worried about me tripping over it. This had always been concerning to Dr. Oster and my other doctors because with such a high heart rate and such low blood pressure it was too easy for me to go into hypovolemic shock. In fact, one of the reasons I was admitted to the hospital so frequently was due to hypovolemic shock. We referred to it as bottoming out.
When I bottomed out, I would turn bluish-gray, get really clammy, and if I caught it myself before it got too severe, I would call for my own ambulance from wherever I was. It was the worst when I wasn’t home and was in an embarrassing place. An embarrassing place was pretty much anywhere … Find Out What Happens Next
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Tagged as: a fib, atrial fibrillation, cardiology, caregiver abuse, child life, dehydration, eating disorder, EKG, electrolyte imbalances, headaches, hospital, hypertension, hypokalemia, hypotension, hypovolemic shock, ICU, kidney disease, low blood pressure, low potassium, nephrology, pediatric ICU, PICU, psychosomatic, ptsd, rhythm strip, shock, Sick, sinus tachycardia, spoonie, SVT, tachycardia
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
by Becca on September 4, 2019
My birthday had been a momentous occasion. Ever since I was eight years old I had been suffering from a rare, degenerative, life-threatening chronic illness where tomorrow was not a guarantee (Just a few days after my birthday I’d had severe anemia and an underactive thyroid added on to my growing list of health issues), so my nineteenth birthday was something to be joyously celebrated.
I also was basking in the glow of having graduated high school and finished up my first year of college simultaneously. I had been homeschooled through half of middle school and all of high school so I was able to take college courses for both high school and college credits.
After my birthday and graduation, I suffered from what my parents called boredom or anxiety or a letdown. They had a new theory every day. In my opinion, which eventually got backed up by Dr. … Find Out What Happens Next
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Tagged as: 24 hour urine collection, A1C, adult onset diabetes, blood tests, BSN, Chronic illness, diabetes, exhaustion, fasting blood glucose, fatigue, gastroparesis, headache, high blood sugar, hypothyroid, nausea, nursing school, spoonie, thyroid supplement, tired, type two diabetes, weight gain
by Becca on September 2, 2019
From the time I was nine my entire life had consisted of medical appointments after medical appointments. By the time I was nine and a half I had been misdiagnosed with an eating disorder, and at age ten I passed out in an elevator and was sent to the hospital for my first hospitalization and first feeding tube.
My first feeding tube was an NG tube. It stayed in the whole month that I was being stabilized on the medical unit. On the medical unit, I was put on specialized IV fluids, hooked up to a heart monitor, a blood pressure monitor, and an oxygen monitor. The hospital discovered that I had been in acute kidney failure and had to nurse my kidneys back to health.
After a month in the medical unit, I was finally pronounced medically cleared and was transferred to the pediatric psychiatric unit with the NG … Find Out What Happens Next
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Tagged as: 24 hour urine collection, cortisol, diabetes, EJ lines, EKG, glipizide, High blood pressure, high blood sugar, high glucose, hypertension, hypokalemia, hypothyroid, ICU, intravenous lines, IV access, levothyroxine, low potassium, Port-a-cath, stepdown unit, telemetry, V-tach
