In 2016, life with type 1 diabetes comes with plenty of challenges.
Daily and nightly blood sugar checks. Never-ending graphs. Carb counting. Cutting-edge diabetes technology to figure out. Insurance issues and the cost of diabetes on a daily basis. It’s hard work.
When I was diagnosed with type 1 back in the day — Halloween of 1977, to be exact — managing diabetes came with a different set of challenges.
Back in the day, a poster of the American Diabetes Association’s Exchange Diet hung in our kitchen and was constantly referred to for meals and snacks. The diet was strict and the portions precise, but my mother allowed me to pick from the exchange list as we prepped for dinner — and that made me feel like I had a choice. I felt empowered, and it helped me learn the exchanges.
To this day I can still recall many of the exchange values: Orange juice, 1/2 cup. Apple and grape juice, 1/3 cup. Half a banana was allowed. Apples, peaches, and pears were allowed, but only if they were small. Twelve grapes equaled one serving. (Who the heck eats just 12 grapes?)
Vegetables were considered “free” foods (those that wouldn’t affect blood sugar), unless of course they were potatoes. Then they were called starches and only allowed in limited amounts. Same went for bread, rice, and pasta. Cereals were allowed, but no more than half a cup.
“Free foods” weren’t actually free, I learned. My parents still had to buy them. But I could eat as much as I wanted of those foods, which included pickles, sugar-free gelatin, cucumbers, lettuce, sweet peppers, carrots, celery, olives, and diet soda in unlimited amounts.
Desserts were diet gelatin or diet pudding. Special occasions meant vanilla ice cream and rainbow sherbet. My birthday meant cake, any kind I wanted — and my parents watching me like a hawk.
Back in the day, we checked urine for sugar instead of blood, which was disgusting and cool at the same time. Disgusting because… well, it was urine. And cool just because my friends thought it was incredibly cool that I knew how to test my urine.
My parents’ bathroom was our science lab, complete with test tubes, droppers, and magic blue testing pills that fizzed a rainbow of different hues. Five drops of urine to 10 drops of water in my test tube, then I’d drop a light blue tablet into the mix. As the tablet boiled and bubbled, I made sure I held the tube from the top not the bottom, so my fingertips wouldn’t burn, while holding my breath and waiting for the colors to decide my fate.
Blue was called “negative” and meant I could let out a sigh of relief; all was well in Diabetes Town. Teal green’s scientific name was “trace,” and it meant my blood sugar, much like Mary Poppins, was practically perfect in every way. Bean green was more than OK. Putrid green meant things were getting tricky. Putrid brown made my parents’ blood pressure rise and immediately put me on the diabetes defensive. It also meant that my endocrinologist might be called, and an extra injection of insulin was required.
Orange equaled the most dreaded diabetes threat level. Orange in the test tube was to be avoided at any and all costs. Orange meant dangerously high blood sugar levels, required a call to my endo, extra insulin shots, drinking buckets of water, and my parents checking my breath to see if it smelled fruity — which meant DKA (diabetic ketoacidosis).
Back in the day (and before I was born), glass syringes were sterilized by boiling them, and needles were sharpened by hand using a flint stone. When I was diagnosed, plastic syringes had become the norm, but my parents continued sterilizing them, because my dad and two sisters had had type 1 diabetes since the 1950s and ’60s, and that’s what made them feel safe.
In the early 1980s, my endo mentioned something called “an insulin pump” (which I wouldn’t actually see until the mid ’90s), right around the time glucose meters finally came to be.
Glucose meters meant huge changes in diabetes management. They were more accurate than urine testing — but had some drawbacks. For me, the lancing devices were devices of torture. For my parents, neither the meters nor test strips were covered by insurance. The first meters took forever to calibrate, required ridiculous amounts of blood, and took four minutes to finally reveal your blood sugar. Our first “family meter” was the size of a VHS tape and was shared by all three of us with diabetes in the house. Learning to operate it required the entire family to take a class in the back room of our local pharmacy.
Back in the day, communication with my endo’s office consisted of my mom writing all of my “readings” down, along with dates, meals, and portion sizes, in a yellow legal notepad. Several times a week she’d call my endo’s office and report all the info in her notes and wait for instructions.
Back in the day, diabetes support systems were almost nonexistent. JDRF was in its infancy, there was no DOC (diabetes online community), no social media groups, and no T1 Everyday Magic.
Today when I’m in need of diabetes support, it’s literally at my fingertips.
Yes, things were incredibly different back in the day, and I’m so incredibly grateful for the diabetes technology that we have today and for the support I’ve found in the DOC.
I don’t know how my parents handled having four out of eight people in their immediate family diagnosed with type 1, but they did.
And I will always be thankful to my parents for it. For incorporating my diabetes into my childhood, by always encouraging me to be an active participant in my life. For seeking the magic in each and every day with diabetes, and helping me discover my own magic in the process.
About the Author: Kelly Kunik has lived with type 1 diabetes since she was 8. She is the founder of the #IWishPeopleKnewThatDiabetes hashtag and initiative. She’s the writer/creator of Diabetesaliciousness.blogspot.com and Iwishpeopleknewthatdiabetes.org, and she is a passionate diabetes advocate, speaker, consultant, and sometimes humorist.
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.