A few weeks ago an old high school classmate sent me a message: “Hey Maya, I know it’s been 20 years since we last spoke to one another. I reached out because our 9-year-old daughter was just diagnosed with Type 1 diabetes…”
My heart sank.
“You’re the only person I’ve ever known with Type 1,” she continued. “I’ve been seeing all your amazing photos on Facebook. You seem so well adjusted. Maybe you have some advice, tips, or tricks?”
Well, I do indeed.
My own Type 1 diabetes story began 35 years ago when I was diagnosed a month shy of my 4th birthday. I’d contracted a virus, one I couldn’t seem to shake. My parents were concerned, especially my mom, who recalls me vanishing in front of her eyes, losing weight rapidly, constantly thirsty and dehydrated, constant urination, a bottomless pit for food, and yet despite all the food I was weak, nauseated, dizzy, and sick. I even wet the bed a couple of times, although it had been 2.5 years since I was in diapers.
My mom took me to our family doctor who casually dismissed her worries, claiming I had a lingering cold. “One of those nasty cases of flu going around,” he said. My mom didn’t buy it. No flu lasted this long. At the time she recalled some advice from the popular Dr. Spock books, about trusting your instincts as a parent. She also recalled reading about juvenile diabetes which fit the bill. Some of her friends with gestational diabetes checked their urine for glucose, she remembered, so she bought a test kit at the pharmacy. My urine had high levels of glucose in it and so it was my mom, not a doctor, who first diagnosed me.
I was rushed to the emergency room that day, in severe DKA, where I got the official Type 1 diabetes diagnosis. My life forever changed.
At the time of my diagnosis, in the 1980s, Type 1 was managed much differently than it is today. There were no CGMs, and doctors instructed patients to check blood glucose no more than 3–4 times a day. My parents, both engineers, soon realized that testing more frequently was important because more information meant better decision-making. I took fixed insulin doses and the dietary instructions were to avoid sugar and eat according to a strict “exchange system” of low glycemic foods for each meal. I ate on a schedule that was meant to match the insulin’s peak action times. I had to eat at specific times to avoid crashing lows. I had no choice in this matter and had to eat regardless of being hungry or not.
I was a happy child but not a healthy one. I was sick often and every common cold would drag on for weeks or develop into bronchitis or a sinus infection. Every wound took weeks to heal. I felt dizzy, nauseated, had headaches, tummy aches, felt weak, and was often sleepy. There were times I couldn’t play with my friends because I wasn’t feeling well. By the time I turned 8, I had bursts of anger and full-on depression. My mother suspected it was somehow related to my diabetes, but back then there was no evidence. Today we know that uncontrolled Type 1 can affect children’s brains and cause changes in mood and behavior. Things only got worse as I got into my teenage years. I was angry, deeply depressed, and full of anxiety. I was falling apart both mentally and physically.
In my late teens, newer insulin came to market. The new insulin came with the freedom to just eat whatever, whenever and cover the carbs with a big dose. That was when I completely lost control of my diabetes management and developed very disordered eating patterns (binging on food, skipping insulin shots, diabulimia) and fell even deeper into depression. I felt physically ill all of the time to the point where ‘sick’ became my normal. In my 20s I already had diabetes complications. Some I still suffer from today.
So when my high school classmate who was still in the hospital with her newly diagnosed child reached out, right away I wanted to tell her that there is a better way to manage Type 1 diabetes. What I went through––the constant out-of-range blood sugar levels––is preventable on a low carb diet. It wasn’t until I found Dr. Bernstein’s Diabetes Solution that I understood this. I stopped trying to fit ‘healthy’ complex carbs like oatmeal and brown rice into my diet. I was able to lower my A1c under 5%. And for years now I’ve been around 4.5%. My depression has lifted. My energy levels are like they’d never been before, I’m rarely sick, I heal quickly, no headaches, and I was even able to reverse some of my complications. My life stopped revolving around food too! I was finally free of the disordered, obsessive, and compulsive eating that had haunted me for years.
It’s crucial for people with diabetes and parents to understand that many of the foods we consider “healthy” cause high and unpredictable blood glucose numbers. It’s extremely difficult to simply cover carbs with insulin and match the doses for high carb foods. You might be able to match it now and then, but not consistently. Diabetes, after all, is a disease of carb intolerance.
I took a quick look at my high school friend’s Facebook profile and saw a photo of her newly diagnosed 9-year-old smiling. I couldn’t help but see myself in it and recalled a photo of my 3rd birthday, pre-diagnosis I was licking a lollipop. I can’t go back in time to save myself, but this bright young newly diagnosed girl has a chance to avoid all that I went through. Parents nowadays have access to the knowledge that my parents could have only dreamed of, and a great online community of other parents and all of us old-timers to support them on this journey.