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
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
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
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
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
As a toddler, I spoke before I walked, but I walked right on time too. I hit all my milestones early. My mom had a Master’s degree in early childhood education. She consulted at multiple daycare centers and nursery schools. Some days she would bring me with her to work to show me off. I would ace all of the baby developmental screenings. The other teachers and educators would watch in awe. Back then there was no talk about me having an eating disorder.
In third grade, I began my descent into chronic illness. My skin, hair, and mouth became extremely dry. I started getting frequent pounding headaches.
From kindergarten to the first part of fifth grade, I attended a private Jewish day school, where every day began with a morning prayer service. The Orthodox Jewish Prayer service consists of multiple parts where you remain standing for prolonged periods of … Find Out What Happens Next
Trying to see things the way my mom used to, back before I got my medical diagnoses confirmed shortly before my eleventh birthday, was like looking into a totally distorted funhouse mirror. She thought my body was healthy and my anxiety was the cause of all my health issues.
The funhouse mirror my mom saw things through
My mom always fights for me no matter what, anyway, to make sure I’m doing ok. She would even stand her ground with the nurse and the doctors if she didn’t think they were right. After the elevator episode, she never left my side.
I’d had a weekly blood test to check my electrolytes that Dr. Monroe, my pediatrician kept warning me were “circling the drain”. Dr. Monroe wanted to blame it on an eating disorder. She was doing weekly bloodwork. It just kept looking worse and worse due to my intense vomiting, … Find Out What Happens Next
The whole genre of my healthcare had changed when I first woke up, swathed in warm blankets after my emergency surgery to have 2.5 inches of dead bowel removed. It wouldn’t be until almost a week later, after all of the testing was complete, that I would find out I had a disease called gastroparesis. The NG feeding tube formula they had been pumping me up with had congealed inside me forming a hardened mass called a bezoar. This in turn had caused a bowel obstruction. After four days of being ignored while I was supposedly being “treated” for an “eating disorder” in the children’s inpatient psychiatric unit, the obstruction had finally just ruptured causing my surgical emergency and the death of that 2.5 inches of bowel.
At ten years old I weighed 38 pounds. For the last two years, everyone had passed me off as a psych case. At … Find Out What Happens Next
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.
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
