We talk a lot about diabetes technology here in the abstract -- but there's no substitute for the real-world testimonials of the people living with this stuff attached to their bodies 24/7.
Today our friend and fellow type 1 diabetes writer Dan Fleshler shares his very personal sentiments on wearing a CGM (continuous glucose monitor).
If I had used a continuous glucose monitor in June 1986, I wouldn't have muffed easy grounders because of low blood sugar in a fiercely competitive softball game. And I (probably) wouldn't have snapped at my team mates when they complained, and they wouldn't have been furious at me and I wouldn't have been in a bad, self-deprecating mood for days.
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I think about that embarrassing episode (trust me, I was a damn good shortstop when my brain had enough glucose), along with many others in my extensive hypoglycemia chronicles when I read or hear PWDs asking whether they should try a CGM.
When marketers of CGMs, medical researchers and PWDs tout the device's benefits, they understandably focus on its ability to warn about severe lows and highs and generally enhance diabetes management. Those are the main reasons why it is outrageous and unforgiveable that, as of now, Medicare won't cover CGMs. But another benefit deserves more attention: I've used a CGM (Dexcom G4) for about seven months, and it has made me a little happier, able to step through life a bit more easily. That's because the gizmo beeps and alerts me in time to prevent mild hypos, the kind that reduce my ability to function at my best and also cause the kind of crankiness, anxiety, and dim-witted lethargy that used to screw up my work and play.
I can recall too many times since the Kennedy Administration when mild hypos prompted behavior and moods I've regretted, and there are probably hundreds of incidents that I can't remember. It's difficult, of course, to identify the line where one's personality ends and where the antics or temporary mood disorders caused by low blood sugar begin. And it's impossible to know precisely how often a CGM would have prevented those antics and disorders.
But I'm fairly certain that if I'd had one of those monitors and it had signaled that I needed to pop candy in my mouth before that game in 1986, I wouldn't have looked like a slow motion circus clown with a baseball glove. If I'd used a CGM, I'm pretty sure I wouldn't have alienated a good friend when, because of low blood sugar, I growled at him with too much fervor for not visiting after my daughter was born. During a business meeting with executives at Continental Tire, I wouldn't have called their company "Firestone" twice. I wouldn't have told my daughter that I didn't feel well, I was too tired to help her, when she asked for advice about her algebra homework, and subsequently wouldn't have needed to apologize to her.
Taken separately, each of these was unpleasant, yet not a very big deal. But having added up a lifetime's worth of erratic actions and crappy feelings due mainly to low blood sugar—and having factored in the 12 times I've fainted because of severe hypos—I know my ride would have been would smoother and easier with a CGM sensor in my gut.
It has certainly made it smoother and easier recently, and not only because I've experienced fewer mild hypos, but also because it's diminished the stress of constantly wondering about BG levels. I still have to think about whether I've eaten too much or not enough, or taken the right amount of insulin, but there's much less inner tension, much less worry. My CGM does the worrying for me.
I asked my fellow Joslin Medalists (most of whom have had T1D for 50+ years) on our private Facebook page if any of them felt the same way about their continuous glucose monitors. Carol Malcolm certainly did, and gave me permission to share her response: "I find myself much more relaxed since starting a CGM. I don't have to wonder and debate whether or not to poke my finger nearly as much, and it has kept me from the ER at least three times in less than a year! I think I am more pleasant to be around because I'm not so tense and hyper-reactive to people and my environment."
Ditto, Carol, especially the part about being more pleasant to be around. I'm not saying anyone should cue the soundtrack for the old Coke commercial, and videotape PWDs wearing CGMs and crooning "I'd like to teach the world to sing in perfect harmony..." But it stands to reason that the device can have a subtly positive impact on the people who come into contact with PWDS. When asked, my wife says she's noticed I'm "maybe just a little easier to live with" since the CGM entered our lives. Not exactly a ringing endorsement, but when you live with a curmudgeon like me, even the possibility of a small improvement.is welcome news.
The decision makers at Medicare probably aren't going to change their minds and cover CGMs because the device would have prevented infield carnage in a softball game 28 years ago. I didn't mention that game or memories of other mild hypos when I wrote to the Centers for Medicare and Medicaid to explain why CGMs save lives and money by cutting down on emergency room visits.
But I have too many unhappy low blood sugar memories. And I'm going to use them to keep myself motivated while PWDs fight this particular battle, and other battles to bring the benefits of CGMs to more people (some private insurers still won't cover them). I also believe that in the to-and-fro about CGMs on the DOC, their contribution to emotional well-being needs more emphasis. PWDs don't just deserve to live without trips to the emergency room when our blood sugar levels plunge or we have ketoacidosis. We also deserve to be happy, and anything that helps to make that happen should be encouraged.
Thanks for sharing this perspective, Dan. We're so glad to see more emphasis on the psychosocial side of diabetes lately! We look forward to hearing from others in the DOC about what happens in their heads in conjunction with CGM use, too.