The Early and Uncontrolled Years

My first 5-6 years as a T1D are really shameful and heartbreaking to reflect on. I think about this period of my life often, but have never explicitly written my experiences down. If you missed my diagnosis story, click here to catch up.

For starters, I was never hospitalized upon diagnosis, even with an A1c over 15%. I have no recollection of the first few weeks after diagnosis. I only remember my doctor coming back in the room and saying there was a problem with my urine sample. I had type 1 diabetes. I didn’t get hooked up to any machines for immediate insulin delivery. Actually, I don’t even remember taking any insulin the first day. I’m not sure what happened. Did I go back to school? ….Sounds like I should ask my mom.

There are a few memories from early on that have always stuck with me. Sitting on the sidelines during gym is one memory. That was horrible; I was always athletic and loved playing sports. Being told I couldn’t was not cool. My eyesight went through phases while I was first being treated with insulin. I had to have my homework and exams printed with extremely large font. My vision was like looking through a tiny hole; I had no peripheral vision. No worries, that went away when I was back to “normal”. I also used to eat peanut butter by the spoonfuls, wait, I still do. But early on, especially. It was like a free food for me.

When reflecting on my diagnosis, and years in high school, I can’t clearly remember what I even did to care for my diabetes. I was 14, a freshman, when I was diagnosed. I do remember going to the nurse’s office before lunch to check my BG and bolus for lunch. That’s about it, and I think that was only for the first few months.

The biggest thing for me was fitting in with my new disease. Fortunately, I had a really great friend group that paid no mind to my t1d and how it impacted me. There are a few times though that they took something off my plate, that I had already bolused for. And they did this without realize the consequences on my diabetes. Kids, that’s it.

Much of my first 5-6 years with t1d were shameful. However, I believe there are two distinct, but also grey, sides to my story. There’s the lack of motivation and care that I approached my diabetes with, and there is the little expertise that my healthcare team could provide. Which had a bigger impact? I’m still contemplating this answer.

For starters, I was on pens for the first 6 years of my t1d life. I had no idea that there was anything else until I was about 17 or 18 and I heard about something called an insulin pump. But heck, who wants something attached to them all the time, was my ignorant opinion back in the day! I had very little control over my ‘betes. I rarely tested. I went based on how I felt. We all know how that goes. But I was convinced I didn’t need to test, that I knew my body, and I knew what to bolus for even without checking. How did I never end up in DKA?! Honestly.

There’s also the fact that I never knew I could inject for a high without eating something. For the first 7 years of my t1d life, I literally thought I had to eat something when I took insulin (Novolog). Why was this never addressed to me? I thought I would just keep dropping if I didn’t eat with an insulin injection. I learned this eye-opening fact from my endo, who I began seeing my second year of college, at 20 years old. My endo also asked me to keep a diabetes diary. I don’t remember my regular health practitioner ever asking for this. I was under his care for 6.5 years.

I had no control over my D while I was in high school, which I know I’ve mentioned in like EVERY paragraph so far. I’m just upset that I wasn’t influenced to care more. I know that no one could MAKE me care, but why wasn’t I manipulated into caring? Basic psychology says it should have worked. Here are my thoughts on how this could have been successful.

I was/am very athletic and enjoyed playing all sports (except basketball). I played ice hockey for 16 years, even in college; and I also played softball. I’m only going to toot my horn for one sentence here. I was really good in both sports, excelling to All-Star teams and catching the eyes of recruiters. Often I find myself daydreaming of how much more I could have excelled if only my diabetes care was better. Instead, my A1cs’ were never below 8% and sat often in the 10-11% ranges (a type 1 diabetic should ideally sit below 7%, whereas a normal person is around 4-5%).

Why didn’t my healthcare team frame the situation around hockey? Hockey was my life, literally the only thing I was truly passionate about. I should have been given steps to maintain great BG control, and given them in a way that told me I could perform better if I did this. Instead, I was often lectured. No one wants to be lectured. That just made me care even less. I needed support and care. They should have played those psychological games on me!

I think I’ll forever contemplate the two roles that were involved with my diagnosis and teenage years. How much could have changed based on my attitude; and how much was out of my control and in the hands of my healthcare team?

Thoughts? Were you hospitalized at diagnosis? If not, do you know why?

Thanks for reading this long ass post!