MyGlu.com, the online diabetes community for people with Type 1 diabetes, just came out with a cool new tool that allows you to compare your own experience living with diabetes to that of more than 26,000 other people who have Type 1. (Thanks to David and Ginger at Diabetes Daily for spreading the news!) You can see it for yourself at https://myglu.org/exploration (you need to have an account, which is free).
Among other things, it allows you to see how your current and average A1cs compare to those of the other people with diabetes who have responded to Glu’s questionnaires, what percentage of people use multiple daily injections versus a pump, and how many people are on CGMs. And if you want to drill down deeper, you can also use the “add a condition” feature to cross reference some of this information; for example, you could see how many people on a pump had a particular average A1c as opposed to people on multiple daily injections, to get a possible sense of how helpful and effective different treatments and technologies are, and perhaps decide whether you’d like to experiment with something new. I think it’s a fascinating tool, and could be useful both to patients and doctors (in fact, I hope doctors see it, since it might affect their treatment recommendations as well!).
While I’m looking forward to exploring the data more myself, my first instinct was to use the tool for a more psychological reason: I wanted to see how my own A1c compared to other people with Type 1 (and to other people who are motivated enough that they bothered to participate in MyGlu). As readers of my blog have probably figured out, I tend to be very self-critical and am often hard on myself, and automatically assume that everyone else is somehow coasting along just fine while I still find it a struggle to eat breakfast. (This leads to a fun round of questions: what do they know that I don’t know? Should I be eating differently? Is it wrong that I like strawberries? Is there any way I could avoid carbohydrates completely? Am I a weak and horrible person because I sometimes put a bit of maple syrup on my yogurt? Etc.) So I was surprised (and comforted) to see that, if diabetes were a high school class, I would be getting an A.
I mean, granted, diabetes is not a high school class, that grade would be on a curve, and the fact that I have a lower A1c than the vast majority of people does not mean anything about whether my degree of control is the healthiest it could be for myself (hah! you now can see why I’m in therapy!). But still: it did put things in context a bit for me, and helped me to recognize the fact that diabetes is really freaking hard for EVERYONE who has it. Often this doesn’t come across in public discussions of Type 1, in part (I think) because we feel such a pressure to show the world that we can do anything we want to that we act like diabetes isn’t a big deal. A quick look through the numbers shows what most of us know personally: that that’s simply not true.
Anyway, if you’re interested, I’d love to hear other people’s thoughts on what insights can be gleaned from Glu’s database. (Leave ’em in the comments!) As for me, I’m going to try to give myself some emotional credit for the fact that, while I’d always like to be doing better, I already am doing an extremely good job. (The question is why that’s so hard for me to internalize – oh, diabetes, you are such a cruel disease for perfectionists.)
An addendum to my mugging post (this has nothing to do with diabetes, but which I feel the need to share because it was so deliciously unpleasant): I happened to decide to replace my phone on a day when the Apple Store’s computer systems were down. (Yes, it was ironic.) Two hours later, the very nice manager who’d been trying to help me called a nearby Verizon store to see if they had the phone in stock. They did, and she got them to agree to waive the $30 upgrade fee that Verizon charges when you buy a phone in person (oh, Verizon, your customer service is right up there with Comcast!). So I go to Verizon, feeling almost hopeful that I will get the problem resolved, but as soon as I walk in I suddenly remember why I consider such stores to be deep circles of hell. First, their cheerful salespeople completely denied having spoken to anyone from the Apple Store (despite the conversation having taken place 10 minutes beforehand). Then they tried to upsell me a new service plan and, when I begged them not to push me (I was very close to punching someone), they tried to sell me a phone case, and then, when that didn’t work, they tried to sell me a replacement phone for my 92-year-old great aunt. Not kidding. While this was happening, I realized that part of the reason I was feeling insane was that, in addition to a dozen or so chirping phones, there were two different songs playing at the same time at the same volume (not mashups; two entirely separate songs on different stereos) — first Gotye’s “Somebody That I Used to Know” with Talking Heads’ “Once in a Lifetime,” then the Cure combined with Shawn Colvin’s “Sunny Came Home.” This was just too much.
“Doesn’t it, you know, MAKE YOU KIND OF CRAZY to have two songs playing at the same time at the same volume in the same store?” I asked the salesperson, who was busy trying to figure out if he could sell me earbuds.
“We just like to keep things lively,” he said, as cheerful as an elf. “Some people love it, some don’t!”
I gave him a look that my husband likes to refer to as “the poop face” (dead eyes, staring deep into his soul with silent contempt and disgust). Then, after he had sold me the phone with the $30 upgrade fee and without actually restoring my settings (requiring a later call to Apple), he bid me farewell, I kid you not, by saying, “Try to keep an eye on this one!”
It was too much. I reeled around, looked him in the eye, and snarled: “I was keeping my eye on my phone. A man got out of a car with a GUN and STOLE it from me.”
And then, as I left the store, I realized I should be grateful — not just for being alive, but that I wasn’t armed myself.
Anyway, thank you all for your comments and kind words — I really appreciate them.