OK, big confession of the month (year?): I am happier without a CGM on. I am not proud of this, because I know I should be basking in the latest and greatest tools available to me, but it is the truth.
I do not like wearing the CGM sensor. I do not enjoy the skin irritations, the incessant beeping, the relative inaccuracies (lag time!), and the constant nagging obligation to keep track of yet another device that not only needs calibrating and charging, but also poops out every time it’s more than 10 feet away from my body and needs to be restarted. {insert exasperated grunt}
I do not enjoy the insertion process. Or the fact that I often see numbers quite significantly different than what my fingerstick meter is telling me. Gotta go with the plasma blood from fingertips, right?
My poor skin is already riddled with “overused sites” from my insulin pump and no, Viki, I have not figured out a permanent solution to my medical adhesive allergy issue.
Overall, wearing my latest CGM continuously was a LOT of fuss and discomfort, for very little value-add — as long as things are going well. By that I mean that the CGM has been a real life-saver for me when I hit a bad patch, like last winter when I suddenly seemed to be hovering over 200 BG all the time, no matter what I did. Suddenly, nothing made sense any more! I wanted to cry and scream and stomp on my stupid diabetes tools. But in fact, wearing the CGM then gave me the reassurance that: 1) I was able to do something to address this diabetes disaster, and 2) I could detect if I was getting dangerously high — over the 200s — and might be heading towards ketoacidosis. Yipes!!
When things go that sour, of course I’m willing to do anything to get a grip on my bouncing BG levels. Good to know that the CGM is there to call upon if and when you “need an anchor in your roiling seas,” as fellow T1 PWD writer as Riva Greenberg puts it. But for now, it seems both Riva and I have decided to set the CGM aside for a while.
To be precise, I took mine off the day I heard my father-in-law died. It was at the AADE Conference this summer in Las Vegas, and it was hot and sticky and my two insertion sites were itching like mad. When I called my husband and he dropped the news that this beloved man — more a father to me than my own father was — had passed away, I sort of “lost it” and ripped that thing right off my skin. I was coherent enough to know the pump couldn’t go… And thankfully, my glucose levels remained pretty steady and sane despite the volcano going off in my head.
Photo: Jana Beck
Anyway, I thought I’d put the CGM back on in a few days, once I was feeling better. But gradually, I noticed that I was feeling better in part because it wasn’t on me.
It itches, and beeps, and gives inaccurate readings (or at least numbers that don’t match my other tools, due to the infamous “lag time” issue). It pulls out and conks out, and actually says “ERR” at those times — which is just how I feel then, just like Riva (ERR!!!).
As Riva says: I wanted to love you CGM, truly I did. But for now, you are relegated to my emergency back-up plan.
I am sorry you find the CGM such a hassle. For me it has been a lifesaver. I feel lost without it. I have been a T1 diabetic for 35 years and never have my A1Cs been better. I, like many PWDs, was never good at logging BS but having the feedback from my CGM has made all the difference. I am a MiniMed pump wearer and have been for 18 yrs so I use their CGM. Although not perfect,..differences in fingerstick and CGM, beeping, vibrating….etc. I truely find it one of the best new tools for me.
I totally agree. The CGM was significantly wrong for me 90% of the time, even given the “lag time.” I also found that waiting on the phone for Medtronic to respond to “my very important” call was taking up to 1/2 hour. None of it is worth it until the CGM gets more accurate and the response time from the company improves.
Trish
And then when they do answer, they want 90 minutes to troubleshoot the problem.
I feel the same way. I use the CGM for rough patches, but otherwise choose against this technology for my own sanity. The addiction of watching the numbers change on the CGM actually make me FEEL those numbers (or trends) and makes me more physically and mentally of aware of whats going on inside….its all good for changing things that need to be changed, but not so much for my mental health!
I completely agree with Kelly and Amy. The CGM makes me stress about every moment I am above a certain number, even when it is clear that I will go down to where I should be once my insulin peaks. It makes me more angry that insulin doesn’t work instantaneously, and that my highs are the result of technology that doesn’t yet exist, rather than anything I should be doing differently. I have a Dexcom and have been wearing the sensors sporadically and mentally, I am better. My A1cs are always within range whether I wear the CGM or not, so for now, most of the time, I’m not wearing it.
Thank you! Yes!
The sensor is a fussy little device. It always wants attention– calibrations, bad connections, etc and it can freak you out about a high or low bloodsugar that isn’t really happening. I have to remind myself that I can live without it. You hear the beeping and think something is actually wrong! It’s such a little alarmist.
I never use a serter with my pump– I like to slide in a silhouette-like device from 45 degrees. The sensor insertion is stressful.
Plus a couple years ago I had high cholesterol and then I lowered pretty well but lost 20 pounds too much weight. I know this is going to sound crazy to some but I NEED some meat on my bones to hold the punp insertions in. So forget about the sensors! Two insertions competing for space on the little pockets of fat on my hips and butt?? Not working for me. I couldn’t keep doing it– I was afraid I’d have to go back to shots.
Now I’ve gained 10 pounds, need to gain 10 more, cholesterol’s slightly high, a1c is slightly high, and I’m going to wear a sensor temporarily to give my doctor some data.
How do skinny people maintain sensor and punp sites. If you look at a medtronic poster there’s always a girl with a sixpack stomach much tighter than mine wearing a pump. How did she get it in there?
Back to the sensor– sorry– yes, it truly taught me a lot about how foods work, it allowed me to anticipate bloodsugar problems, it logs much better data– it’s great- but it’s too hard to use the thing. Too high maintenance.
I’m about to go put one in and I’m not looking forward to it. Thanks for reading.
Like I said years ago. The CGM is a money maker that does not improve control. It provides inaccurate, thus useless, data. The fingerstick is much more accurate, and if used before eating, and after a bolus (1 hour) to see how good the carb “guess” was it has allowed me to maintain an A1C below 6 for many, MANY years. Use what works. It is not possible to manage a process successfully with bad data.
Unfortunatley, the CGM technology isn’t perfect. But neither are fingersticks. For all of you who strive for an “absolute” blood sugar…. good luck. Do your own experiment. Using the same meter and same blood draw, use four different testing strips in your meter. If any four of these are within 5 points of each other you are lucky. So why not gripe about that? Does your bg meter tell you that you bg is dropping while you are fast asleep? Does your bg meter warn you that you are dropping while you are driving? CGM may not be that absolute number you strive for, but it can show you trends of where you have been and where you are headed. I understand we want better, but the technology isn’t there yet. Crap. I wish I could get in my car and it automatically take me to the mall. Or better yet, what if I could just think where I want to go and POOF… I am there. There are no absolutes in bg meters or cgm…..
Amy, I really want a CGM, but I stop every time I get to this point: Using interstitial fluid to read BG is inherently inaccurate and you “calibrate” the device with one that is only accurate to +/- 20%, just sounds too wacky to me!
Thanks for giving us a bit of your reality,
Mike
People should use technology and not be ruled by it. Their goal should be to maximize the quality and the quantity of their lives. Sometimes we get so caught up in wanting the latest gadget we forget about the downside and how using it may affect our spirit. This device can be helpful for some people some of the time. Each person should understand the risk, benefit, and cost (both financial, time, and emotional) inherent in all these devices and make their own decision.
The thing I find most reassuring about today’s diabetes care is that we, to some extent, have choices. What works for you, like your insulin-to-carb ratio at breakfast, certainly may not work for me. The more choice (especially if tools become effective, cost-efficient, and equitably distributed), the better. My diabetes doesn’t look or act the same as it did 38 years ago when I was diagnosed. And a lot of that is due to the tools (and improved ways to use the data they provide) that have been developed over the years. Alive and kickin’ feels pretty good.
Amy,
First of all, I’m sorry to learn of your family’s loss…
In general, I have had great results with my Dexcom, as opposed the the Minimed I first tried. But like you, I find I need to take a break from it once in a while.
As time has gone by, more and more data is available to us, or maybe thrown at us is a more accurate term. Sometimes I think that all that data can overwhelm us, not only from the sheer volume of it but also because it is our nature to want to be “perfect” at this, even though we all know we truly can’t be.
I’d been diabetic for a decade before I even saw a glucometer and I wonder if it wasn’t a bit “easier” back then. Granted, the long-term results of that lack of data is probably not the best for us, today I think it is a damn good idea to take a break from it once in a while. I believe it is contributes a lot to the burn-out that we all go thru now and again.
Just the other day, I didn’t recharge my dexcom and I noticed how much more relaxed I was because it wasn’t there reminding me of how Mexican food always messes with me. So I think that once this sensor dies, I’m going to take a week or two off; even though it has probably saved my life on more than one occasion from night-time hypos.
My CGM is an important part of my diabetes care toolbox. Especially important as I’ve become less hypoglycemic aware at nighttime and during intense exercise. As everyone has noted, it’s not a perfect tool, but neither is my glucose meter. It has definitely helped me smooth out the highs and lows I was getting using only my glucose meter, and frankly I’d rather have a false alarm for a high or low, than no alarm at all. That said, I’ve found mine tracks nicely with my glucose meter data. I especially find the trending data useful, and I truly appreciate having access to this technology. Your mileage may vary, but I’m sticking with my CGM.
Too, I always appreciate your blog and your honest and straightforward approach to the D-Life!
I often refer to my dexcom as “the little girl with the curl.” “When she was good, she was very, very good – but when she was bad, she was rotten!”
I think we each have to work with whatever works for us, individually.
I feel the same way! I find it so annoying. I know the information is valuable, but I try to just use it once in a while. Mostly to track trends, but it drives me crazy too.
1) I’m sorry about your FIL.
2) LOVE the looksie over here
3) We’re part time Dex users. That’s just the way it is. I slap it on when I really feel like I need to call in the troops for adjusting pump settings…other than that…it’s just not mandatory around here.
I wonder if it is because you get the sensors for free from DexCom. I fought with my insurance for years to be able to wear a CGM and I have to scrimp and save to afford the sensors.
Every moment I wear mine I remember how long it took me to be able to have the data and how lucky I am to have it.
YDMV
I have very mixed feelings about my MM CGM. I fought so hard to get it. However, whether it is an improvement is debatable. If everything is perfect, it tracks along with my meter and can alert me of impending lows while I sleep or drive.This window of near-perfection is rare and fleeting. Even more anxiety-causing than having one more area in my life where I strive for perfection only to fail most of the time, or the false alarms for highs or lows, are the times it doesn’t alarm but falsely reassures me I’m fine, or tells me I’m high when I’m low or low when I’m high. Yes, I know, test and trust the meter and my intuition. But sometimes I can’t test and I’m relying on this for my safety net. My life is already too full of instances where I have to weigh do I trust this info/person this time or not. All I know is, since July, I am testing even more frequently and my A1C is climbing, despite all of my efforts to do EVERYTHING right.
@Sara – this is not about who’s paying. If it were, I probably wouldn’t be disclosing all this. Just keeping it real — as usual!
I’m not sure you understood what I meant.
In my trips to Haiti we visit an organization that is building homes for people that either have never had them or whose homes were destroyed by the earthquake.
They could definitely provide them with the homes for free, but the families are required to pay $6.25 a month. After 5 years, they own the home straight out. Does the $6.25 a month pay for the home? No, but it invests them in the community being bulit around them. There is more psychological ownership.
It was just a hypothesis. If it doesn’t fit you… YDMV
I’m sorry to hear the CGM isn’t working for you. But as several people before me have said, your diabetes may vary. I, like Sara, fought for my CGM, and I love it. I haven’t had the inaccuracies you describe, nor do I have the irritation problems. For that, I can’t relate. I do understand the beeping issues, and when they bother me, I turn off the alarm. My A1c was 8.8 when I was finally approved for my CGM. Three months later, it was 7.1. That’s what it did for me. I’m sorry you had the trouble, but I think it’s a great tool to have. If you have any leftover sensors, perhaps you could donate them. I know “Houston, We Have a Problem” has to pay out of pocket for them, and she feels like they are a necessity for her young son. Thanks for the post! I wish you better luck in the future with devices and such. (And sorry for your loss).
My insurance doesn’t cover my CGM because my A1c is so low (ugh whatever) but I suspect I’d feel similarly if I had it. I can’t use the pump for it’s minor flaws and I certainly would lose patience with something as inaccurate as the CGM. It’s awesome, I just know myself (and recognize that others are different) and I feel like I’d be one of those exasperated by it half the time. Anyway, thanks for your take.
@sara – not sure you understand what I mean, either. This is not an economic issue. I know all about Perceived Value theory (studied it extensively in grad school).
I also REALLY WANT to wear the CGM and like it and use it to its best advantage. Unfortunately, the reality is that it’s very uncomfortable for me. Like I said, just keepin’ it real.
Sorry about your father-in-law. The sad ironic truth is that this is probably the time when what the CGM supposedly does would be most helpful: guiding you through the highs and lows caused by stress, travel, guessed carb counts, etc. However, the device can only be calibrated to give accurate results when life and blood sugars are relatively flat. It works marvelously on non-diabetics or those whose lives are absolutely steady and whose pancreases work predictably. With LADA, who knows how much insulin our beta cells will decide to produce at any given time?
I understand taking a break from it. It’s one more thing to grieve (the loss of that dream), one more betrayal, one more stressor to raise your blood sugar.
Amy – Have you ever heard of dermatographia? It presents LIKE adhesive allergies, but is NOT. It’s an autoimmune condition (so we’re more prone to it) where with certain irritations to the skin, sometimes scratches, adhesive being on the skin, adhesive being removed from the skin, etc. cause a histaminic response where you literally develop hives from certain irritations to the skin. I thought for the longest time I was developing one adhesive allergy / sensitivity after another, and when I went for skin allergy testing, I was super allergic to mastisol and skin-tac, but not ACTUALLY physically allergic to the adhesives. Rather, my body was being super sensitive to the skin irritations of simply having certain adhesives on my skin and / or removed from my skin, and reacting by forming hives… For me, I take Zyrtec daily and that has helped SOME, but I do still have issues here and there from various adhesives – bandaids – YOWZA hives!!
Might be something to look into if you haven’t solved THAT particular mystery yet…
I’m glad to hear your opinion on this.
I keep thinking I should want to get a CGM, but I just keep putting off thinking more about it.
We did the iPro a while back and it completely traumatized my daughter. She is not used to having a medieval device used for insertion (like with some pumps) because we use the OmniPod. Insertion of the iPro was painful, she bled, and she screamed. Because of the insertion experience she says she does not ever want to wear a CGM.
I’m waiting for OmniPod and CGM integration because only then will I consider it. And that itself poses an inconvenience because currently she doesn’t have her PDM on her person every minute of the day. We only take it out of her supply bag when needed.
Of course there are times, like in the middle of the night, that I wish she had a CGM. But I also know how OCD I can be and I think it might be TMI for me.
wow, i am sorry to hear that. i wish you loved it like i do! i has lowered my A1C considerably. i can’t imagine what i’d do without it!
I wonder if part of your problem with lag time has to do with wearing the Dexcom on your arm (remember the issue with alternate site bg testing). Just a thought. For those who had a painful/bloody sensor experience, my patients do report that this varies considerably with brand of CGM. The comment about dermographia is very insightful.
Thanks. I learn so much from your blog.
I think I would rather have my CGM than an insulin pump. I wear both and love both but the information the Dexcom gives me is so much more important for my health.
I don’t even need numbers if I can see trends. It makes my fingerstick numbers come alive!
But as always, to each his or her own!!!
I have a love/hate relationship with my Dexcom. At first when I got it I had high hopes that it would make managing my diabetes lots easier. To some extent that is true. OTH…..many of the same reasons Amy has mention apply to me also. My skin is very sensitive to adhesives plus I’m just tired of having ‘one more thing’ to manage and keep track of. Maybe I just need a CGM holiday.
While using a CGM for 8 months last year, I felt like a volunteer in a trial run of a new product. Surely this could not be a device that was approved by the AMA. So many errors and such difficulties were involved. I could get reasonably close agreement with my glucometer about 60% of the time, but when I was outside my comfort range (70-130) the CGM gave me wild numbers most of the time. I wanted a CGM that would warn me when I was outside my range, but it was not accurate at those times, so I felt it was a useless device for me. False alarms at night that kept my wife and me awake forced me to turn off the CGM and use it only during the day. Then we were informed that our insurance would not cover the CGM as of November 1, 2010. It was almost a relief. I have not used the CGM since that time.
I am especially concerned about the automatic pancreas (AP) that I have heard so much about. Certainly a CGM will be an integral component of that device. The AP is supposed to feed us insulin when we are experiencing high blood sugar, and glucagon when we are experiencing low blood sugar. That sounds fantastic, but what is the component that will determine when we are low, or high? A CGM, of course. If the CGM component in the AP is no more accurate than the CGM I have used, then the AP could give us insulin when we are not high, and glucagon when we are not low. That scares me!!!