26 years of living with diabetes and “what I wish I had known...”
We’ve had both excellent news (Dexcom G4 Platinum approval) and very disappointing news this month (the termination of Reata and Abbott’s phase 3 BEACON trial for bardoxolone methyl). Lots of highs and lows. And coincidentally (or maybe not), late this month marked my twenty-sixth year of living with diabetes. On days when bad news comes out, where it’s easy to get disheartened and feel like we’re not making enough progress, it can be good to look back on how far we really have come. Anniversary dates offer a natural opportunity for reflection, and I can still picture vividly October 17, 1986. I was learning to put insulin into a syringe and then to put a syringe into an orange. "Did you learn how to give yourself your morning and evening shots?" an attending doctor asked. "Yes. Yes, I did!" I wanted out of that hospital, even as I suspected a long, arduous journey lay ahead of me. And as I reflect on the past 26 years, I wish I could go tell my teenage self some things about just where that journey would take me and the things I would learn along the way.
I wish I had known that syringes would become very tiny and wouldn't really hurt an iota (I feel many people still today don’t know this and I so want to shout it, to exclaim, this is so easy). I’m so glad for this.
I wish I had known that one day, I would consider NPH a curse word. I wish I had known that more stable insulin would be coming in 1996 and beyond. I wish I had known that it didn't make sense to take six units of NPH in the morning and at night and six units of regular in the morning and at night, faithfully, religiously, no matter what my blood glucose was, what I was planning to eat, what my stress level was. I wish I had figured out earlier to adjust my doses based on how I felt.
I wish I had realized I was lucky and that even in 26 years, lots of people would still have to take sub-optimal insulin because they couldn't afford anything else. I wish I had known that hypoglycemia wouldn't be so scary with the introduction of a device that would beep me when a low blood sugar was imminent, and the device would keep beeping me until I addressed it.
I wish I could tell my teenage self that when I heard about pumps, I should jump on one and that "more physiologic" would become a really magic phrase. I wish I had known that for me, getting a pump, a CGM, and GLP-1 would feel like Christmas.
I wish I had known to express gratitude to my doctors for going into the field. I wish I had known that CDEs existed. I wish I had known how much better life was going to get and how lucky I should count myself.
I wish I had known that treating my diabetes would get much better and easier (from a low base) and that my family would inspire me so much to get as better as I could while we waited for the open loop, the closed loop, biologic cures.
I wish I had known that I would live in the most inspiring world that I could imagine.
I wish I had known to say thank you to my parents.
I am now beginning my 27th year. My 26th year was wonderful, full of hopes and dreams for our field, and full of worries as well, but always with the belief that things will get better for all of us. I'm sending karma that the next 26 years will go just as well as the last 26 and that I'll be around to pen a letter like this once again. I'm already thinking about what I might say: “Remember when there was hypoglycemia? Remember when insulin didn't always match blood glucose? Remember when incretins had just been invented and remember when we went through that really rough patch when payers didn't yet realize they wanted, always, to invest in better, earlier, optimized treatments…”
Past, present, and future, we always live in hope.
Kelly L. Close