I’m going to be writing a lot about diabetes over the coming month. Turns out, I have a lot on my mind about my chronic illness. Despite having had it for ten years, I feel like I’m still fairly unskilled at managing it. Basically, I know my readings could be better, and I’ve learned a lot recently about how to get where I want to be.
So why am I going to write about diabetes? Lots of reasons.
First, diabetes still has a lot of dark, mysterious corners. If I could have one wish — besides being cured — it would be to be able to predict with better accuracy what will happen from one day to the next. I hope to share helpful bits about what I’ve learned, what’s working, what could have gone better, and what still confuses me. And I hope to hear from other people with diabetes about what works for you.
Because diabetes is mysterious and evolving, it’s surrounded by misconceptions. If I can help any of my regular readers understand diabetes better, maybe I can prevent them from worrying so much about me. (Although I definitely appreciate all of your heartfelt concern.)
I want to contribute to a middle layer of knowledge on the web, a layer that fits between the insipid generalities that are too vague to help anyone but the absolute beginner and the overly technical information aimed at endocrinologists. I believe people with diabetes should be our own advocates, and that starts with having the courage to speak with our healthcare team members as peers rather than in the traditional doctor-patient hierarchy. Until we better understand what’s happening in our own bodies when we eat, take insulin, exercise, etc., we won’t be able to do that. And until we increase the visibility of what it’s like to live with diabetes, doctors are going to continue to discount our point-of-view.
(By the way, I very much put myself in the don’t-know-it-all-by-a-long-shot category. While I consider myself something of a “health geek,” I’m just a novice. I took an anatomy/physiology class many years ago. And while it was the most information dense and enjoyable class I ever took, it just scratched the surface of how a body works. Every time I read something in a medical book or article online, the depth of my ignorance becomes more profoundly obvious. But I’ll share what I do know, collecting shiny bits of diabetes knowledge here in my curiosity shop. :^) )
Sometimes I just have to write stuff down so that I don’t forget. On occasion this has saved my bacon. For example, on Columbus Day, while adjusting my pump settings at work, I managed to delete most of my basal rates. Fortunately I was able to call Lisa at home — unlike me, she had the day off — and she was able to tell me the values I had written in my journal for just such a “Holy shit!” moment. And, although logging might not be fun, it is useful. These dispatches can serve as persistent memory (not just shared memories).
And finally, for all of these reasons, my “control” over my own illness isn’t where I want it to be. My A1c of 7.6% (down from 8.6% a year ago) is higher than I want it. My ability to “follow the rules” (my own, much less my endocrinologist’s) is compromised by the knowledge that (for me) these rules are based on false assumptions about my insulin needs and sensitivity. So I flail around a bit, especially when it comes to exercise. Changing anything related to diabetes takes a lot of trial and error. Writing about it seems like good, inexpensive therapy. And if you’re in the same boat with me, maybe we can take this trip together.