March 27, 2024

Facts, Stories, Shame, and a Continous Glucose Monitor (CGM)

Why would I listen to my body when there's an app for that?

NOTE: Nothing in this post constitutes medical advice. I’m not a physician, have no training, and share this simply as a personal story.

I have inherited chronic kidney disease, and, as such, I get routine blood tests to measure my kidney function. It’s a normal blood panel, and so glucose is also covered.

A few weeks ago, I did some blood work, and my glucose was 120. That’s not great, but it’s not crazy. I learned after my nephrologist asked me about it that I’m supposed to fast ahead of these blood draws, so it made sense that my number was high, but he wanted me to do the more sophisticated A1C blood test to assess whether I was pre-diabetic or worse. I did the test. My fasting glucose was 74 (hurrah!), and my A1C was 5.5, which is on the high side of normal, but not wildly alarming.

My primary doctor thought it would make sense given the A1C for me to go on a continuous glucose monitor (CGM) for 10 days so I could see the trends and effects of my diet, fitness, and other behaviors. Sure. CGM’s are all the rage in the “healthspan” universe, and I was game to learn. Plus, I knew that, although my BMI is normal and my eating habits are pretty good, I do sneak some popcorn and an occasional fun size bag of M&Ms into my days.

I got the CGM ($60 with a prescription at Costco pharmacy for members, by the way), and I embarked on my education. This education, however, sucked. It was akin to the time during my freshman year at the University of Michigan that I challenged myself to take a grad school lit class. I sat through the first two classes, covering the book Slaughterhouse-Five, and I had no idea what anyone (professor, fellow students) was talking about. Actually, the CGM experience was worse.

My numbers were off the charts high. I won’t get into the data, and you can look at all the ranges online to educate yourself. Suffice it to say, my CGM was telling me loud and clear that I was way past pre-diabetes. I had full-on diabetes. My overnight numbers were what a normal person’s postprandial numbers were. When I worked out in the morning, I spiked to above 200. When I ate an entire orange (an entire ORANGE!!), things went nuts. One afternoon, I was especially hungry, and I ate a turkey sandwich (for the love of all that is perilous). I had three sequential readings of 258. You’re supposed to seek immediate medical care if you hit 300 two readings in a row. During all of this – especially when I wasn’t adding fuel to my own mental chaos fire – I was feeling physically fine. I knew that diabetes can be asymptomatic, but still. I just assumed this normal feeling is what happens right before something terrible happens.

So. It has been a horrible ten days. I gave up sugar entirely. I stopped eating all simple carbs entirely. I gave up eating full pieces of fruit unless I titrated them with green vegetables – the veggies brought my numbers into the normal range and seemed to give me “permission” to have a few bites of fruit. I spiked so much when I ate low fat plain greek yogurt (very low glycemic index, supposedly), that I bought flaxseed meal to sprinkle on top of it to make it more friendly to my CGM (not a terrible idea, and very delicious).

I emptied my entire pantry of all foods containing sugar or simple carbs. And, still, my CGM numbers were extremely high. It seemed there was nothing I could do to get anywhere close to “normal.”

I sobbed. I felt furious. I grieved. I shamed myself for all of the bad habits that landed me in this situation. None of this is right or just….it’s just what happened.

I wondered whether I would survive until my doctor returned from a spring break trip so that I could start on medications to deal with this situation. I marveled at how badly I must have been doing for more than a year without knowing it.

And then, on Day 10 (the LAST day) of my CGM’s life, I looked over at the finger stick test I had purchased two months prior for occasional glucose testing. I thought back to the 74 reading from my fasting glucose. And I decided to use the finger stick for a fasting glucose test. It was 92. At that same moment, my CGM showed 138.

I did ONE MORE TIME something I had done at least 20 times over the past 10 days: I googled why there might be a huge gap between my finger stick reading and my CGM. Most of the results said what I’d seen every time: that CGMs measure fluid and finger sticks measure blood, and they can be a bit different, especially at times where glucose is in motion (post meals, for example). They shouldn’t be that different, etc, etc.

But then…THEN…I saw one result I had not seen before: “Calibrating your Dexcom G7 using finger stick readings.”

What?! Are you kidding me?!?! I had assumed my finger stick meter was off, but is there a process to calibrate your CGM?!?!?!

Yes. There is. And apparently, this is well-known to diabetics. My friend Worth told me that up until Dexcom CGM version G5, you HAD to calibrate the device when you first put it on using a finger stick machine. But Dexcom had secured FDA approval to no longer require that as a mandatory step. If I’d looked harder at the app, I would have seen that you can in fact add a calibration at a time when glucose is steady. But I didn’t do that, and I had no reason to know this. Worth told me he just calibrated his CGM last week because his numbers were out of line. How did he know they were out of line? Because of HOW HE FELT. But I had no idea about any of this.

So, in the 12-hour grace period for my expiring CGM, I calibrated using the finger stick reading. I entered the reading for calibration purposes in the CGM. My CGM reading went from 158 1.5 hours after a meal to 127. Here’s a picture of the step change:

I cannot express to you the shift that took place upon seeing this. I had been following a story that looked incredibly close to fact (look how official this all is!). I had missed a critical fact that was obvious to my friend Worth, who has navigated Type 1 diabetes with élan since his early childhood. My CGM had been 20% wrong for 95% of its stay on my body. I figured this out in the 12-hour “grace” period. Grace. Indeed.

Upon seeing all of this, my entire system has relaxed. I’ve let go even more of the stories of how “wrong” I have been to let this all happen to me. I wish I could have let them go without “solving” this previously inexplicable situation, but, alas, I am mortal. I have still learned a ton from this experiment about what foods and behaviors lead to glucose spikes and how to avoid and manage those. I’m not out of the woods, and the trend data was incredibly informative.

I will not go back to my days of self-soothing with popcorn and cold brew caramel M&M’s. I may still get medicated if my behavior change doesn’t help me as much as it needs to. But today I will eat an entire Dekopon orange without a side of broccoli, shame, or fear. And that, dear ones, feels incredibly good.

As I sit with the waves of relief I’m experiencing, I’m wondering what the learnings are for me. First, after penning this, I realize that I want to take 100% responsibility for my own feelings and drama when I’m in it. It’s not an easy shift to make, but if I had stayed more present, I might have seen that this situation didn’t make sense. I might have found a way to ask more questions instead of just blaming myself.

Second, I want to stay vigilant about instances where I view facts as facts instead of as more malleable impressions or stories. I took less than 100% responsibility here by being in a victim consciousness and following the dictates and messages of a patch on my arm instead of interrogating whether the pretty data array in an app was, truly, trustworthy. I think I do that often, and when I do, I outsource my knowing and my power.

I wrote this post so you can know me better, and so that there is a higher chance  that someone else going through this might turn this up during a future search.

Any thoughts, feelings, or blurts? Share them here.

Sue Heilbronner

Sue Heilbronner is an executive coach, Conscious Leadership facilitator, and catalyst for change.

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