18 Years with Diabetes: A Diaversary Post

Today is my 18th diaversary. That’s DOC slang for the anniversary of my diagnosis. I used to think 18 years with diabetes sounded like a looooong time. Growing up, most of the people I knew had diabetes for about as long as me, because most of my D-friends were the same age as me and were diagnosed around the same time as I was (at age 8). Now that I’m older and have had the privilege of meeting so many wonderful people with diabetes, 18 years no longer seems that impressive! I know people who have had diabetes for 30 years, 40 years, 50 years — and last summer I met a man who has had diabetes for 85 years!

Most people I know have a sharp picture in their minds of when they were diagnosed with diabetes. They almost always know the year, usually the month, and sometimes the day. I remember my diagnosis very clearly, even though I was only 8 years old. I remember waking up with an ear ache, complaining to my mother and begging to stay home from school. I remember her deciding to take me to the doctor to get checked out. I remember sitting in the waiting room of the doctor’s office. I remember listening to my mother tell my pediatrician that I was going to the bathroom a lot. I remember the low yellow light of the bathroom where the doctor told me to go so I could pee in a cup. I remember waiting at home for the results. I remember the phone call came at 4:00 in the afternoon and I remember my mother flipping through the yellow pages looking at hospitals to take me to. I remember my dad coming home, and I remember looking up at him while I laid on the sofa in our bonus room, and I vividly remember remember telling him, “I’m a diabetes girl now.”

December 1993 – One month before my diagnosis

I remember starting to feel nauseated. I remember the drive to the hospital and how I couldn’t eat or drink anything except water before being admitted, but we didn’t have water in the car and I was very thirsty. I remember the Intensive Care Unit. I remember throwing up all over myself and the nurses. I remember my first endocrinologist standing at the foot of my bed, with my mom on my left and my dad on my right, explaining to us what the hell just happened.

The next day, I remember watching the clock from my bed, telling the nurses what my friends at school would being doing that day. Reading, Writing, Math, Recess. I’m sure that was really fun to listen to. I remember having to go to the bathroom in a little plastic bowl because they needed to measure it for… something. Ketones? That I don’t remember. I just remember that I hated doing it! I remember my parents coming to visit, and I remember the workbook It’s Time to Learn About Diabetes by Jean Betschart Roemer (whom I interviewed many years later!). I remember the nurses teaching me how to prick my finger and I was terrified. I think I made them do it at least two or three times each themselves before I had the guts to do it to myself. I remember injecting insulin into an orange. And I gotta tell you, I remember thinking that my skin and an orange were very, very different.

I remember being discharged from the ICU and staying in a regular hospital room. I remember the nurses waking me up every four hours to test my blood sugar, and I remember being very excited when it dropped from the 300s to the 200s! I remember the other girl who was in my room. She’d had several heart surgeries and she had to pee into a bag because she couldn’t walk. I suppose being her roommate gave me a bit of perspective on my situation.

I remember being discharged and going home. I remember going to school on Monday, not to go to class but so that we could teach the secretaries about my diabetes. The principal was there, too. I had an awesome school staff and it is one of the many reasons I think I turned out as “normal and well-adjusted” as I did. I remember checking my blood sugar in front of everyone and I remember the secretary gasping, “It’s dropping!” But in reality, she was just watching the meter countdown the 45 seconds it took to get a reading (those were the days!). I remember laughing and going, “No, no! It’s just the timer!” I remember calling my best friend Jenny and telling her that I had been diagnosed with diabetes. Her mother immediately started buying Diet Coke to keep at their house, and Jenny still blames me for her Diet Coke addiction (I plead the Fifth).

Summer 1994 – six months after my diagnosis

I don’t remember much after that, actually. The diagnosis is a very clear, distinct series of memories that occurred over a period of maybe five days.

Later memories all blend together: I remember phone calls to the doctor-on-call late at night. I remember my mother accidentally mixing up my morning and evening dose once. I remember my parents arguing about whether or not I needed a snack. I remember my first trip to camp, and I remember my first insulin injection in my stomach. I don’t remember my first low blood sugar, and I don’t remember even hating diabetes that much at the beginning. Although I remember a doozy of a temper tantrum that came when I was about 12 years old, and I do remember crying occasionally when an insulin injection stung just a little too much.

It might seem strange, but most of my memories of my childhood don’t have much to do with diabetes. Well, maybe a little bit. When I think about school, I only have a few memories of diabetes. I remember telling my gym teacher I was low so that I could get out of playing tennis. I remember having an insulin pump site fail and shooting up to 500 mg/dl and thinking I was going to die or collapse or something. I remember my friend Julia bending over to check the time on my insulin pump. I remember my friend Josh asking if he could try one of my glucose tablets and he liked it. I also remember him asking me if you could put heroin in an insulin pump. To which I replied cautiously, “I suppose…”

Oddly, I don’t remember diabetes on the day I got my driver’s license. I don’t remember diabetes at either of my school proms (although the guy who took me was a PWD whom I’d met at diabetes camp, so, you know, there’s that). I remember that I had a two-piece prom dress, and the top part was a corset, so we clipped the pump to the back of the skirt and it just sat there. That’s all I remember. I don’t remember diabetes on my graduation day, although our Senior Night party involved a ridiculous amount of ice cream, candy, and snacks and I’m pretty sure I floated around 300 mg/dl the entire time. I don’t remember diabetes on my first date (OK, again, technically a lie since my first date was the brother of a guy with diabetes, and his father was the former President of our local JDRF chapter, but, you know, minor details). And the only reason I remember diabetes on my wedding day is because I knew I’d have to blog about it.

The older I got, however, the more I remember my diabetes in my life. Diabetes became a “hobby” when I was about 16 years old. I started getting involved in diabetes advocacy stuff. I remember finding out I was selected to go to JDRF’s Children’s Congress. I remember meeting Mary Tyler Moore. I remember thinking about my own mortality more and more. I remember being frustrated with my diabetes in college, and I remember how much I didn’t remember how to take care of myself. I remember how it introduced me to friends and how it got me my first job, and I remember how I slowly started appreciating the fact I had diabetes, because it actually brought some good into my life. I remember how my father told me that my diabetes gave me purpose. I remember thinking that was true.

I also remember most of my diaversaries. I don’t think the date would have made an indelible mark on me if it weren’t for the fact that the first was the day my mother finally said that I could get my ears pierced. Now listen, I had spent weeks working on my mother so that she would let me get my ears pierced. I can’t remember what her rationale was for preventing me from doing it, but I remember her being very insistent that I should not get my ears pierced. I remember that night I was sitting in the car, listing out (again) all the reasons why she should let me get my ears pierced. I remember our car suddenly pulling up in front of the piercing salon and being so excited — and yes, I even remember how much it hurt.

And that’s how the tradition of celebrating my diaversaries began. It didn’t even occur to me, after several years of doing this, that other people might not want to celebrate their diaversaries. I remember on other diaversaries, my parents would include a card with a little gift, and inside it would say something sweet about how proud they were of my ability to take care of my diabetes every day for the past year. That’s really the point of celebrating the day, you know. It’s not to celebrate the fact that I have diabetes. Having diabetes blows. But living well with diabetes? Managing the everyday minutiae of testing blood sugar, counting carbs, and dosing insulin? Having an awesome life, never letting diabetes hold you back and accomplishing all your dreams?

That is totally worth celebrating!

January 2012 – 18 years after diagnosis

So, whether your diabetes diagnosis was January 27, like me, or whether it’s another day of the year or even a day you don’t remember, happy diaversary to you too! Here’s to long life with many happy memories.

Thanks Allison – sending lots of DOC love your way!