Tag: Chronic illness
by Becca on November 20, 2019
When I woke up on the morning of December 13th, 2014, the first thing that I noticed was all the snow. It was coming down in snowballs, not flakes. The next thing I remembered was that I was making yet another trek down to Mass General Hospital that day. Dr. Swearingen, one of the top neurosurgeons in the country for pituitary tumors, was going to be meeting with me that day.
I had just been diagnosed with a pituitary brain tumor a month or two ago. My whole life I’d faced debilitating chronic illness in the form of gastroparesis, hypothyroid, anemia, SVT, POTS, A-fib, orthostatic hypotension, frequent episodes of hypovolemic shock, frequent episodes of passing out, muscle weakness, issues with electrolytes, and more recently, episodes of hypertension, bone loss, Type Two Diabetes, excruciating headaches, and fatigue.
My childhood had been swallowed by my chronic illnesses. Instead of going to school … Find Out What Happens Next
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Tagged as: Chronic illness, cushings, doctors, hospitals, neurosurgery, surgeries, 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
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 August 2, 2019
Looking like a five- or six-year-old when you’re twelve causes big problems in middle school. When you add to that the fact that the most popular girl in class, Natasha, got a hold of classified information that you spent a week and a half on a children’s psychiatric unit in fifth grade, that’s raising the problem level even higher. If you started sixth grade with a tube coming out of your nose to feed you because there’s something wrong with your stomach, that right there is strike three. It’s game over if you know all the answers to the teacher’s questions and usurp Natasha’s position as the “smartest kid in class.”
The year before, I finished sixth grade early because the teasing and bullying got too brutal for me. I was way ahead academically (despite a developmental delay in other areas) and could have easily skipped a grade or two … Find Out What Happens Next
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Tagged as: bullying, Chronic illness, conversion disorder, coping skills, crisis center, crisis survival strategies, denial, diet, dietary changes, dieting, dietitian, doctor, gastroenterologist, gastroparesis, gastroparesis diet, gi doctor, gp diet, hypochondriac, motility disorder, partial hospitalization program, pedialyte, pediasure, psych crisis, ptsd, Sick, somatization, spoonie, therapy, treatment
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
by Becca on July 16, 2019
If you wanted to look up the word sick in the dictionary, you would probably find a picture of me. Ever since I was eight years old and started struggling with muscle fatigue and appetite loss I have been on a downward trend in my health. By the time I was ten I had had my first NG tube. This was followed by my first surgery when the NG tube caused a bowel obstruction. Then I had to deal with an even thicker NG tube to suction. This was followed by my first NJ tube.
I spent a good chunk of fifth grade in the hospital, and went home from the hospital with the NJ tube still in place and a diagnosis of severe gastroparesis. The rest of my childhood was spent racking up frequent flier miles at my local children’s hospital. At age thirteen my heart rhythm disturbances took … Find Out What Happens Next
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Tagged as: adolescence, Chronic illness, family issues, feeding tube, gastroparesis, global dysmotility, homeschooled, hospital, hospital life, motility disorder, NJ tube, preteen, refeeding syndrome, Sick, spoonie, tubie, weight loss
by Becca on March 20, 2019
My very first symptoms started when I was eight and couldn’t stay standing up through the whole prayer service at my Orthodox Jewish Day School every morning. Also that year, I started having trouble with holding down food and drink. Between ages eight and ten the issues just intensified and turned into a monster that threatened to tear my whole family apart, including the lives of my two little brothers, Michael and Jonathan (names altered for privacy issues) who were having their own issues that got shoved to the back burners because my issues were life-threatening and there’s were just life-altering. My GI issues were so intense by the time I passed out in an elevator at age ten that I hadn’t even been able to hold down any food or drinks at all. Not even sips of Gatorade.
I had my first hospitalization after passing out in that elevator. … Find Out What Happens Next
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Tagged as: bezoar, bowel obstruction, Chronic illness, family issues, feeding tube, gastroparesis, monitored anesthesia care, motility disorder, new diagnosis, NJ tube, paralyzed stomach, pediatrics, refeeding syndrome, Sick, spoonie, tubie, vomiting
by Becca on March 19, 2019
At just barely eleven years old, I had finally crossed the finish line of a several-month-long marathon hospital admission to Schneiders Children’s Hospital due to what my parents had tried to insist were psych issues. The hospital, on the other hand, had proved it was gastroparesis and some other mystery ailments causing heightened levels of inflammation in my blood tests. Terms like dysautonomia autoimmune had been thrown around, but at that point, I had no idea what any of that meant.
My family had recently moved from New Jersey to Massachusetts. This way we were closer to our extended family, like my grandparents, aunt, uncle, cousins, and more. We just wanted a fresh start anyway.
When sixth grade rolled around I started up at a new school. No one was totally sure how things would work out. It was like we had just survived an earthquake and were now … Find Out What Happens Next
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Tagged as: attitude, bullying, Chronic illness, family, feeding tube, gastroparesis, hattassment, middle school, motility disorder, NJ tube, perseverence, persistence, positive attitude, spoonie, teasing, tubie
