Surviors Stories

This page is for stories of how this disease has affected us in the Fandom and also those not in the fandom. I will be posting a new story here every week. If you would like to share your own story, send me an email at Thanks!!! ~Lia Jane

My diagnosis of Juvenile Diabetes – by Wrong13

I was diagnosed when I was six years old with juvenile diabetes, that’s what it was called then, not what it’s known as now, Type 1 Diabetes.  As best we knew, there was no history of it on my mother’s side of the family, but my father was adopted so that obviously left a huge gap of family history.
Since I was young, not a lot was shared with me of my diagnosis, other than how to treat it and take care of myself.  I was told to always have something on my feet and follow a special diet and take an insulin injection every morning.  I wasn’t told of the 10 - 15 years chopped off of life expectancy, the increased risk of eye disease, kidney failure, or the simple fact a paper cut almost always gets infected if topical antibiotic isn’t put on it.
When I returned to school, before every lunch, I had to go to the school secretary and she would take me to the old part of the building where the convent was, which, for the most part, was vacant.  I would pee in a cup and she would test my sugar.  Even at six years old it was humiliating.  Mrs. D was kind and caring and never said anything to make me feel embarrassed but it still makes me cringe to this day, years and years later.  This was long enough ago that it was before blood glucose meters.
I was diagnosed early October, spent ten days in the hospital and returned to school close to Halloween.
Being a first grader, our “big brother” or “big sister” from eighth grade would come down and take us on “parade” to the older kids’ classrooms.  After we finished showing off our costumes, we returned to our homerooms and Sister P told me to stay in the room by myself.
I sat there alone for some time, maybe a half an hour, maybe an hour.  When my classmates returned, they all had bags of candy to take home.  I remember wondering why I had to be different and couldn’t share in all of the fun and activities.  When I went trick or treating in my neighborhood that first Halloween, my parents had gone to all of our neighbors and given them packs of Carefree gum to put in my bag so I didn’t feel left out.  I still find irony in the name of the gum.
Looking back, I recall what (I imagine was) an intern, telling me a cure wasn’t far away.  Telling that to a six year old means a few weeks time.  In reality, decades later, I still have to test my sugar, take my shots, and monitor what I eat and be active everyday.  While the tools to do some of these tasks are better, the focus is primarily on managing diabetes.  I want a cure.  I wasn’t born with diabetes and I don’t want to die with it either.

ButterflyBetty Fanfiction shares the story of Sophie:

Last September, we noticed Sophie started to get thinner. Thinking she was just in the middle of a growth spurt, we pushed it to the back of our minds and went on with life. Except, she kept losing weight. She'd get in trouble all the time at school, was very emotional and irate. She began shoveling food down her throat, yet the weight continued to drop. She'd wake up almost every night have to use the restroom, sometimes three or four times a night. When she didn't wake up, she'd wet the bed, crying the next morning because she was embarrassed.

By Halloween, she'd dropped one whole pant size and we started to worry. Over the next few weeks, she started wilting away. Her collarbone stuck out, her ribs and spine were visual. She dropped down another pant size by Thanksgiving and had come home almost everyday to take two or three hour naps.

We set up an appointment with her pediatrician, knowing we were dealing with more than a mere growth spurt. I took her in on Friday, December 3rd. The first words out his mouth were lets test her for Diabetes. I knew then, but instead of sending us to the hospital, or even checking her blood glucose, he gave us an order to have some labs done.

Of course, the lab wasn't open because it was late in the evening and they wouldn't be open again until Monday morning. With the plan to take her in first thing, we headed home. By early Sunday evening, her legs and arms had began to cramp. She became lethargic and whiny. Knowing in my heart that we needed to take her in, my husband and I took her to the emergency room. Her blood glucose was 579 and she was dehydrated. They immediate admitted her to the PICU and started an IV. Giving her first of many insulin injections, they worked to get her number down and keep her settled.

The next few days, we learned everything we could about carb counting and how to make sure her life stayed as normal as possible. Now, almost a year later, she looks healthy and happy, having gained the almost 30 lbs she lost back. She attended Diabetes Camp over the summer and met other kids in our area who have Type 1 Diabetes. Just last week, we started pumping and have never been happier.