It has been almost 30 years since I was diagnosed with what at the time was commonly referred to as Juvenile Diabetes. Being 18 at the time, I felt that distinction was rather, well, juvenile. They have since renamed the two forms of the disease to simply Type-1 and Type-2 because more adults are stricken with Juvenile Diabetes, and more young people are diagnosed with what used to be called Wilford Brimley Disease. The point is, more than half of Type-1 cases now occur in adults, so calling it “Juvenile” made no sense. No doubt many doctors spent hours in meetings to come up with this new numbering system while countless diabetics suffered.
While there are many factors that contribute to someone getting diabetes, like family history, diet and even geography, sometimes shit just happens, and so at 18, I was a normal, healthy college freshman and I suddenly became ridiculously thirsty all the time. I was actually carrying cans of soda around in my pockets because I was literally always thirsty. And as a result, I had to go to the bathroom constantly, too. I had lost a ton of weight and was tired all the time, but college freshmen don’t generally take good care of themselves, so I didn’t bother going to the doctor. One Saturday morning, my mother finally insisted that we go to the walk-in clinic. They took some blood and told me to eat better and sent me home. By the time I got home, they had analyzed the blood and told me to get to the hospital because my blood sugar was over 800. That is not a typo. Most people have a regular blood sugar of about 80. Around 500 is sometimes considered coma-level. The soda that I had been living on was obviously full of sugar, so I had basically been killing myself.
I was in the hospital for about a week, and met with several doctors and nutritionists. I distinctly remember one very nice nutritionist explaining to me, multiple times, that sugar had to be eliminated from my diet, and she kept repeating, “No more cookies, no more cakes, no more pies.” I kind of thought it was funny that she felt that I ate so many pies that she had to include them in the list. Not Skittles or ice cream.
It was a whirlwind of learning how to inject myself, test my blood sugar multiple times a day by pricking my fingertips, and stick to an eating schedule (which actually became the biggest headache.) This was 1995, so when I pricked my finger and dropped the blood on the test strip, my glucose monitor would take a full minute to produce a reading, and back then, the tiny needle-things that I had to prick myself with were actually quite a bit sharper than they became in the ensuing years, and the amount of blood required for this thing to get a reading was not insignificant, so my fingertips were quite mangled all the time. I was on two kinds of insulin, and in fact, I still am. One was what they called fast-acting, which took 30 minutes to even start working, and the other was long-lasting, which was supposed to sustain me all day.
So, in a nutshell, my entire life now revolved around taking multiple shots and eating 3 balanced meals every day, constantly keeping my blood sugar in the range of 70 to 100, working out to make sure that my insulin traveled throughout my body at a decent rate, going to classes, and oh, weirdly enough, checking my feet. Yes, you may have read this somewhere, but a lot of diabetics who do not take care of themselves have to have their feet amputated. Basically, your circulation isn’t great, so if you cut or develop some sore or blister on your foot, and you don’t feel it because, well, diabetes, it can get infected and result in the foot having to be amputated. Plus, a lot of diabetics can develop a heart condition later in life, so watch out for that. Too much sugar flowing through your eyes can damage your retina and cause blindness, and there is the little issue of making sure your sugar doesn’t get so out of control that you fall into a coma. And I can’t eat pie anymore!
I was 18, slightly overwhelmed, and yeah, very, very angry all of the time. A low blood sugar can cause a normal person to get irritable, what some people now call “hangry,” but I was angry all the time.
Here’s the real kick in the pancreas, though: I was told by multiple doctors while in the hospital that there would be a cure for diabetes in… FIVE YEARS! Five! I don’t know if they were being optimistic or try8ing to cheer up a teenager stricken with diabetes, but that’s what they told me. In 1995. And like a fool, I believed them. Now I’d like to tie them to a chair and prick their fingers multiple times a day for the next 30 years. And then not let them eat candy for the rest of their lives.
I’m exaggerating for dramatic effect (I’ve actually taken to eating Airheads to treat my low blood sugar, so I have had candy. Maybe even more than I should, but it beats being comatose), but seriously, a cure in five years? That seems a little optimistic. In fact, according to this article, in 2017, there were 1.3 million new cases diagnosed, which apparently suggests a leveling off after the number of cases had risen steadily for years. Leveling off is nice, but that doesn’t sound like a cure to me. In fact, here’s a direct quote from an article published on DiabetesStrong.com just last year:
“We’ve made huge advances, but we’re still nowhere close.”
Cool.
Ok, they have made huge advances. The insulin pump allows diabetics to administer their insulin more easily. And I now wear a Continuous Glucose Monitor which uses an app on my phone to tell me what my blood sugar is. It’s definitely an improvement, but the term “continuous” is a bit of a stretch, as it does fail a lot. Each monitor is supposed to last 10 days before it has to be replaced, but I think over the last couple years, I have only had a handful that have gone the distance. Dexcom, the company that makes the CGM actually boasts an 80% success rate, which may be accurate, but for a complex medical apparatus that could mean life or death, that 20% is still a little more of a gamble than I want to take. But my fingers are now less mangled.
Apparently, the doctors who told me that there would be a cure in five years 30 years ago weren’t lying. They genuinely thought this was happening, so much that it was common for diabetics back then to be told this. The cures were working fine in mice, but they wouldn’t work in humans for any length of time. The science behind it is actually quite interesting; it is not so much that a diabetic’s pancreas is no longer producing insulin, which is the common misconception. In fact, it is constantly producing it, but our immune system is constantly attacking the beat cells that our pancreas is producing. Which is why my blood sugar was constantly out of whack back in 2011 when my immune system was completely compromised (Check out my article about my 2011 hospital stay for a fun romp on how diabetes actually saved my life Funny thing, if you have one auto-immune disease you are very likely to get a double-whammy.) They are now working on a cure that involves placing a tiny capsule under the skin that contains pancreatic beta cell precursors, which would, in theory, not require immunosuppression. It’s going pretty good so far… in mice.
I know I sound like I’m still angry (because that’s my secret, Captain.) but I have learned to live fairly comfortably with this disease for the last 30 years. I have never actually been in a diabetic coma, that I know of. My vision is pretty good for a 48 year-old diabetic. I still have both my feet. And the truth is, even before I was diabetic I was a pretty angry, and hangry, young man. And obviously, it could be a lot worse. But if they do get that cure, I’ll be right at the front of the line for it. Maybe I’ll even have some pie.
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