Still here after 28 years

On this day in 1993, I was diagnosed with Type 1 (juvenile) diabetes.

Yes, March 3 always catches my attention. It’s more scary than anything, but it’s grown less so over the years.

A few years ago, I began reminding myself: if I had been told in 1993 I would still be alive with perfect vision and all of my limbs almost 30 years later, I would have been quite happy.

Because I thought for sure diabetes was a death sentence.

I CAN’T REMEMBER IF I’VE EVER blogged about this before, but — yeah — March 3, 1993, was not the best day of my life. I had gone to the local hospital’s lab for testing after a visit with my pediatrician that was brought on by a very bizarre evening at the Olean Center Mall. There used to be a McDonald’s in there and although I wasn’t old enough to leave my mom’s side in the mall, the number of times I was asking her to go get free water from McDonald’s led her to say “just go on.” So I did — again and again.

It was like there was a sticky film inside of my mouth no liquid could penetrate. I was drinking, but it wasn’t doing any good.

It continued through the night, coupled with frequent trips to the bathroom. All the symptoms.

So when I went to the lab for bloodwork and the technician met with my parents and they emerged from a room looking sad and asked if I wanted to go wherever I wanted to eat … I knew something was up.

I cried when they told me. I was in fourth grade, but there I sat sobbing in that same McDonald’s. At that age and in those days, you just assume everything is cancer.

THEY JUST TELL YOU STUFF TO SCARE YOU.

That’s what I would say today about the medical approach to diabetes in 1993. The care back then was primitive compared to how it is today: you basically don’t eat the foods a 10-year-old wants to eat. You don’t eat birthday cake at parties. You get one strip of bacon per week. Oh, and you check your blood sugar via some elaborate process triggering entire restaurants to watch what you’re doing before every meal.

All very trying situations when you’re 10, 11, 12 …

To top that off, your classmates are going to assume diabetes is contagious and their only chance of survival is avoiding you. One kid called me “AIDS boy” from fifth grade to sixth grade.

Forget sleepovers with new friends. Your parents will work hard to teach other parents what to do in case “x,” “y” or “z” happens, but at the end of the day, you’re not their kid and chances are they’re not going to want to deal with it. It’s much easier to just tell their son to not be friends with you.

Not that your long-standing friends with parents who are kind enough to care will be a walk in the park. Guess who’s still going to be calling to check every couple of hours? Mom. That’s embarrassing, but looking back on it, I can totally see why.

I think I was 11 or 12 when I stayed up all night at a friend’s house, then came home to sleep all day and woke up in the emergency room. Apparently I had slept through a low blood sugar and my dad came into my room to check on me and I was having a seizure. That night, I found the bent syringe on my desk next to the two vials that comprised a glucagon kit in those days. Yeah, back then, a person was expected to draw liquid from one vial, inject it into the powder in the other, withdraw the syringe, shake the vial, then put the syringe back in to draw it all up so it could be injected into a child having a seizure.

Poor Dad didn’t even get through the first step.

You can add three more instances of hypoglycemia-triggered ambulance trips to the hospital by the time I graduated from college. I once lost consciousness at a summer job while I was in high school and fell out of the back of a box truck, hitting my head on a concrete driveway. I once passed out while helping my parents close the pool for the winter. I once passed out on the kitchen floor after a night of partying (yes, I drank underage, all you people doing the math). I once passed out while working my job in college at an ice cream shop — 700 miles away from poor Mom and Dad.

So I guess that’s actually four.

Maybe that’s why the motto for educating kids with diabetes in 1993 was “scare the Hell out of them.”

THE TROUBLE WITH THIS METHOD is the same trouble with preaching abstinence. Kids are going to do what kids do. Children with diabetes are going to do what children without diabetes do because chances are, they are the only kid with diabetes they know. They want to be like the kids without diabetes.

I was there when Humalog insulin replaced “regular,” Lantus replaced “NPH” and was eventually improved still with Levimir. Those were game-changers. I went from needing to plan my entire diet around insulin doses (that had to be taken 30 minutes prior to eating) to being able to eat practically anything I wanted when I wanted. I no longer had dramatic, unexplained lows because my NPH had decided to peak earlier than it did the day before.

But I still screwed up with the new insulins — the trouble with injections is once the insulin is in you, it’s not coming out … so if you don’t eat the amount of food for which you dosed your insulin, or if the food’s carbohydrates didn’t last the four hours Humalog lasts, you were going to be in deep trouble soon. The problem there, I eventually found, is you didn’t know you screwed up your dose until you started to feel symptoms of low blood sugar … which become less obvious the longer you have diabetes.

I once hit less than 30. My glucometer just said “low.”

I have spent many minutes of terror waiting for my blood sugar to come up after chugging a 20-ounce Pepsi from a vending machine. I would always look for a chair with a lot of cushion, preferably something similar to a recliner, and make sure it wasn’t near anything hard. I will never forget the time in college I treated what I thought was a “regular” low blood sugar, was waiting for it to come up, then woke up in an ER with a headache. I learned later I had a seizure on the stone floor of the restaurant.

I used to always tell myself, “Man … if only there were a way to know what my blood sugar is all of the time, this would be so easy.”

Then one day, there was.

AND WHAT I FELT TODAY as I retrieved a FedEx box from the front porch containing a three-month supply of insulin pump infusion sets was pure joy. It has been 28 years since I was diagnosed with Type 1 diabetes — a variation that comprises only 10 percent of all diabetics — and I am still here.

As difficult as it is to knock on wood while typing, that’s what I’m doing as I write these next words: I’ve experienced no major complications from diabetes despite sometimes being in terrible control.

Yes, puberty was horrible to my diabetes. And balancing diabetes with a diet that was mostly alcohol in college did not lead to great a1c readings. Even as an adult, I’ve gone through periods where I just don’t want to care so much about it — I just want to live my life.

For parents of kids with diabetes today? Things are going to be fine. I mean, I’m not a fortune teller or doctor, but based on my experience, it’s going to be fine as long as you never stop trying. I have Hashimoto’s disease now, which usually only affects pregnant women AND diabetics, and I went to a specialist-specialist-specialist eye doctor five years ago because I had a sunspot in my eye and really super intense testing revealed the very beginning of retinopathy (which didn’t cause the sunspot — it went away on its own), but it’s still not enough that my regular ophthalmologist can see it during my annual visits. Hey — it’s been almost 30 years with diabetes, so I can’t complain about these pretty minor “complications.”

Now, we’re good. We are all good.

Now I have a small machine that sticks to my arm that’s constantly reading my blood sugar. If it starts to go low or gets too high, my smart phone sounds an alarm … not that it’s really all that necessary. Now I also have an insulin pump. This isn’t just any pump, either — it’s the best of the best. It actually communicates with that device on my arm and automatically reduces the amount of insulin I receive if my blood sugar even starts to go low or is projected to do so. If my blood sugar goes high, it automatically gives me more insulin.

Don’t get me wrong — there’s still a lot I have to do. But I find myself worrying less. I didn’t realize how much of my attention had been on my blood sugar my entire life, whether or not I had a roll of Lifesavers in my pocket or where there was a vending machine that takes credit cards (because Lord knows I never carry cash). I still have to treat low blood sugars from time to time, but it’s rare that I drop below 60. As for high blood sugars? Forget it. I haven’t been over 180 in ages.

If my child were to be diagnosed with Type 1 diabetes (I know, I know … it’s not hereditary), I would feel much better about it than my parents probably did. Throw on a CGM, link the app to your phone and always know what his/her blood sugar is. Treat accordingly. Piece of cake.

So thank you, Mom and Dad (because I know my mom will read this), for never ceasing your care for me. Not only my immediate health, but also your mental support, compassion and determination to teach me how to care for myself. And as a stubborn adult … you pushed me to invest in my own health and buy this pump and CGM even though it costs as much each month as a car payment (with insurance). If I mess up and have to go a time without my CGM now, I’m terrified because I’ve become addicted to knowing my blood sugar at all times. I can only imagine what that must have been like in the days before continuous glucose monitors. NOW I know why Mom called all of the time.

I also had countless teachers in school who cared enough to understand. I had a school nurse who went to the ends of the Earth, at times, to make sure I came to her office to check my blood sugar and eat a snack; if a teacher took issue with this, that nurse became a Pitbull fighting on my behalf. She tragically died in a car accident a few years ago and it spurred me to think of the role she played in my childhood. There was so much uncertainty at school for me after I was diagnosed, but she made me feel like someone who understood was in my corner.

Finally, I had an athletic trainer in high school who was probably THE reason I was able to play football until I graduated and because of him, I’m able to apply and share with my kids the life lessons that can only be taught on a football field. Remember, these were the days before insulin pumps … so when I had practice, I couldn’t just take out the amount of insulin that was in my system to accommodate an intense conditioning. I got low when I got low — and if he was there, I knew my coaches would never question my need to treat a low blood sugar. I remember him asking me on the sidelines when games were tight if I was okay because he knew I was focused on the contest and not my health. When he was there, my head was in the game and not so much on my blood sugar. I knew if something bad happened, he would know what to do — and that was all I really needed. There have been things I cannot do because of diabetes, but playing football wasn’t one of them.

I’ve made it another year since 1993 and I still find that incredible sometimes. Here’s to seeing 2021.

Literally.