My dad’s arms were wrapped firmly around me as he held me while talking to the lady at the desk at the entrance to the pediatric emergency room. About twenty minutes earlier I had passed out in an elevator on the way out of Dr. Monroe’s office. The vampire lady in her lab had just sucked out her usual four tubes of blood from the crook of my arm. When she was done she gave me a unicorn sticker, and I stepped into the elevator. The next thing I remembered being aware of was my dad leaning over me yelling my name in a panic. He had picked me up in his arms like a baby, not the ten-year-old girl I was, and carried me out to the car. I didn’t fully wake up until we were racing down the turnpike toward the hospital.
Everything started at age eight when I stopped being able to eat lunch at school. If you ask a thousand different people with gastroparesis, “What do you do when your stomach fails you?” They will give you a thousand different answers. When I was in third grade my answer was to refuse to eat lunch and snacks anymore.
Of course, this made my parents very anxious, and started them asking me a bazillion questions. I almost wanted to ask them, “What would you do when your stomach fails you?” but I knew I couldn’t talk to my parents like that.
It wasn’t until the end of third grade and the summer of my nine-year-old check-up that my parents really went on high alert. But as soon as I saw Dr. Monroe, my pediatrician, she noticed I had fallen off the growth charts for weight and then was reminded that even though I had barely turned nine I was on the highly competitive level six gymnastics team. Instead of thinking, “What do you do when your stomach fails you?” She decided to plaster me with the eating disorder label and dismiss all possible physical possibilities for my stomach failing me.
I can trace my descent into chronic illness all the way back to age eight. Up until then, I was actually a healthy kid. Until then there was no mention of hospitals, tube feeding, IV nutrition, terminal illness, or unrelenting pain. None of that. Back then there was no talk about me having an eating disorder.
The first sign of any issues occurred in third grade when I began suffering from frequent pounding headaches.
Another early sign of something amiss was how dry my body was. If I went a couple of hours without sipping on a drink I could put a finger in my mouth and move it around, and my entire mouth would be bone dry.
My skin began to get very dry as well, and I noticed something odd, I no longer could sweat, no matter how hot the temperature was.
Even my eyes were super dry to the point where it made my vision blurry.
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