So with all of this talk about travel and safety and doing the right thing, I’m still not a consistent continuous glucose monitor user. Here’s my confession:
I don’t want to be a CGM user.
I hope my endocrinologist isn’t looking at this today (she does look in every once in a while). But she’s already familiar with my resistance on the subject. Let me see if I can explain this. I’m sure all of the points I’ll make here can be shot down with common sense wisdom that just about anyone living with diabetes can understand. But there are a few reasons why I haven’t made CGM use habitual.
When I first started using an insulin pump five years ago, I also started wearing a CGM all the time. The CGM I was using was horrible; it had accuracy issues, and it was always painful to insert. It was so frustrating that after about nine months, I gave up on it. I won’t go into it anymore, but I think that was where my reluctance started.
Actually, the biggest, most overriding reason for not wanting to wear a CGM is that I do not want one more thing attached to me 24/7/365. That’s not to say that showing a CGM transmitter in public, at the pool or in the shower at the gym, would cause me embarrassment. Those days are long over. I couldn’t care less about that, and I certainly didn’t have a problem with it when wearing a CGM during clinical trials.
No, the problem of “one more thing” is bigger than that. It’s not only wearing something else all the time. It’s having to plan out site changes for two devices rather than one. It’s having to pack supplies for two devices rather than one. It’s fighting with insurance profiteers over coverage of two devices (and supplies for those devices) rather than one. It’s having to carry around a receiver in my already overcrowded pockets. It’s dealing with real estate issues earlier because I’m constantly violating my body in two places at a time instead of one.
I think there might also be, hidden somewhere deep, an aversion to gathering data for my endocrinologist to go through and find fault with me. My current endo is not like that at all, and I know she would never shame me if my numbers didn’t look so great. However, old wounds take time to heal. On the other hand, this would probably be the easiest place for me to give a little. In reality, I know this would not be an issue, so why should I continue to make it one? Patients are not always perfect either.
After going over my concerns with my endo, she suggested that instead of wearing a CGM full time, maybe I use one for ten days or two weeks in between appointments. That way, she could at least get a little data on how my BGs were trending throughout each day. This seems reasonable, and not too intrusive. But has that made me start the process over again? No. Old wounds take time to heal, and old habits die hard.
I’m not sure I’m solving anything here. But this is how I deal with issues like this: I talk about them, to myself, family, and friends, and in doing so, I often talk away some of the concerns (read: fears) of change. I know that CGM technology is better, and with the rollout of Nightscout and Dexcom Share, many people are able to add an additional layer of security in the advent of a hypo away from home. Why wouldn’t I want to make that a part of my care too?
I don’t think I’m there yet. But I’m getting closer. Secretly, I’ve even made lists of who I would share my data with… even “backups”.
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Comments
The Friends clip was a great start to my day and thx for sharing it. Totally apropos to CGM “back-ups.”
I find the physical presence of my Dexcom to be much less intrusive than my pump gear. I only change my site every two+ weeks and don’t carry a backup around town. When I travel, I throw an extra sensor in the suitcase. Because it has a built-in inserter, no other gear except a SkinTac wipe is required.
But the mental impact of the Dex can be overwhelming. There is no doubt it keeps me safer and improves my time “in range.” Since starting the G4 over two years ago I have not once needed help with a low BG and have not once asked my husband to get me a cup of juice. But it’s a constant companion which often wakes me at night, which is usually accurate but not always, which interrupts my life with lots of alarms. (Most of the alarms are unfortunately correct and are a constant reminder of how difficult it is to “control” Type 1.)
Interesting post, Stephen.
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Thanks for your honesty. I dont think there is any one best way to manage your diabetes. Both my kids have T1 and both are in their 20s so I no longer have any say in thier care. My daughter swears by her pump and her CGM. My son uses pens and will have nothing to do with a pump or a CGM. His A1C is lower than hers. I think you have to figure out what works best for you and go with that.
Maureen
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I don’t think I would be able to manage my diabetes very well without a CGM or a pump. It would take constant blood sugar checks and too many injections, both of which I find more intrusive than wearing any kind of gadget. Some people have it differently, and they’re able to manage just fine without it. I wish that could be me, but alas, it is not. I think as long as you’re doing what’s best for your health, you’ll find no argument for me. But if your health is suffering because you don’t want to be “inconvenience” well sir, you run the risk of being even more inconvenienced down the road… ::cough cough:: I say it with love. 🙂
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Thank you for this… sometimes I need the tough love.
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Agreed, on whatever fits your world best in managing D. There’s more than enough headache and hassle, so adding one more thing that you’re not 100% on is definitely not worth it. I had that same sense a number of years ago, about a certain “not so good” CGM sensor that went with my preferred pump. Hated it, and became anti-CGM. And at the time, the other CGM wasn’t as good as the one we have now; although I did find it better than the one I’d hated. So, I didn’t use. But then I came back to it after a scary driving experience where I’d pretty much “done everything right,” and that was a game-changer for me. Still, I often go long periods without using my G4 for the exact reasons you’re mentioning… because I just don’t care to have something else attached, or go through the process of all that. But I am glad to have it, when traveling or whenever needed. The data point is a concern for me, too, but my endo’s the same way and doesn’t dwell too much on that — I tend to use my linked meter less than I should and rely on CGM sometimes, so that gives a better data picture for him. But in the end, it’s all about whatever works best for you and adapts to your life.
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You don’t ever have to use a medical device you don’t want to use, and you certainly don’t have to justify your choices to us. Keep on doing what works for you and what makes you happy!!
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How’s your A1C? How’s your day-to-day diabetes life? If both of those answers have positive valence…..pffffft. As much as your endo wants you to wear it, sounds like you don’t NEED it. Of course, if you aren’t happy with your A1C or you feel stressed out by erratic BGs, maybe it could help.
I’ve been in a similar boat, and that’s the approach I’m taking now. I went over a year without a CGM. Then I had several days of kooky BGs and thought, “Whelp, maybe I’ll give this a shot.” Wore the sensor for a week, it was okay, went without for 2 weeks, now back on. So, much like your endo’s recommendation. It works for me….like the other comments, do what works for both your body and your sanity 🙂
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Do you know why I love this post so much? BECAUSE IT’S REAL! because it’s honest and truthful and I agree with it.
Why has it become the thing now to be attached to pumps and cgms as the only way to manage diabetes?
Just because we have the tools available doesn’t mean we have to use them.
There’s something to be said about our own sanity and if wearing and managing another device and another insertion site is damaging to your psyche then why feel forced to do it?
I’m on your side. The side that does what is best for oneself.
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This all makes perfect sense to me Stephen. More devices, more data, more decisions…. it can all be too much.
I think whether a CGM works for you really depends on how you plan to use it. I use mine for real-time decision making all the time, but not for “post-game analysis”. So, personally, I wouldn’t find an on-again/off-again use to collect data to be beneficial. One week varies from the next as one day varies from the next, so what good is a mere snapshot of historical data?
Conversely, using it in real-time like I do leads to upwards of 10 small boluses a day, regularly, as well as being awoken in my sleep — regularly. One has to question whether all that extra effort/annoyance really has any appreciable payoff.
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Thanks Scott… It’s been interesting seeing everyone’s thoughts on this.
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