Tag: motility disorder
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
Help make my last dreams come true, share this:
Like this:
Like Loading...
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 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
Help make my last dreams come true, share this:
Like this:
Like Loading...
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 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
Help make my last dreams come true, share this:
Like this:
Like Loading...
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
Help make my last dreams come true, share this:
Like this:
Like Loading...
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
Help make my last dreams come true, share this:
Like this:
Like Loading...
Tagged as: attitude, bullying, Chronic illness, family, feeding tube, gastroparesis, hattassment, middle school, motility disorder, NJ tube, perseverence, persistence, positive attitude, spoonie, teasing, tubie
