As a toddler, my doctors were convinced I had hypoglycemia. I would be a normal child one moment and then I would morph into an uncontrollable devil with extremely destructive tantrums. After the destructive mood, I would become ridiculously emotional and be unable to stop my uncontrollable crying. This progression would happen normally under an hour window and would conclude with me “falling asleep” and not remembering any of my mood swings afterwards. My mom discovered that this ordeal could be avoided if I ate every two hours. I never felt hunger and was trained to eat according to a clock. The doctors called it hypoglycemia.Was it truly hypoglycemia? I went to one endocrinologist who did not believe a word my mom was saying. He requested a very cruel test to prove to her that I wasn’t hypoglycemic (I’ll save that story for another time). We saw him twice and refused to return.
Mom quickly found another endocrinologist. She spoke to the office staff explaining to them how she needed a doctor to play “Inspector Gadget” and look at all the evidence. The office staff assured her that this endo would do that.During our first visit, we explained to him the test that the other endo requested. He agreed that it was ridiculous and there were much safer ways to rule out hypoglycemia. He wanted me to wear a constant glucose monitor for a week. I’ve included an image below. The white part was attached to my hip, while the black box would clip to my pants.
My constant glucose monitor looked very similar to this. Photo from here.
In addition to wearing the monitor, I had to manually prick my finger and check my glucose levels four to five times a day and to record everything I ate with a time stamp. I was thrilled at the end of the week when I could have the huge black box removed from me and stop testing my glucose levels during school hours. A week later, I found myself back in my endo’s office with the results of the test.
Not Hypoglycemia. But perhaps…
“Amber, you do not have hypoglycemia. Your night glucose levels do not dip low enough.”At this revelation, I was mad. I began crying tears of anger. What?! No. I must be hypoglycemic. I’ve believed I was all my life. How dare you tell me different. What else could explain the lack of hunger, the dizziness, the anxiety, and the malaise? Am I imagining these symptoms? Am I imagining my pain? What is wrong with me?My endocrinologist calmly stated that there was another test that he would like to perform. He was bringing in a specialist specifically to run this test for a couple of his other patients. It was a more in depth blood test that would last two hours. He believed this test could provide me with some definite answers.What was wrong with me?See my mom’s response.
When people look at me, I want them to see me as different. But I do not want them to see me as different because I am diseased. I want them to see me as different because I am Clearly Alive.