A Comparison of Diabetic and Non-Diabetic CGM Readings: questionable science at it's finest

CGM's are great.

There's nothing quite as useful as being able to see trends and get alerts if your blood glucose level (bgl) is going low or high. Ask any diabetes doc and they'll tell you that CGM's are a game changer, and ideally something every diabetic would have access to.

As I've become increasingly active on diabetes support servers and groups, there are a couple less-than-good things I've noticed related to CGM's. Most notably, newly-diagnosed diabetics who get a CGM almost immediately often fixate on the numbers and focus really hard on being "in range", i.e. keeping their bgl in a non-diabetic range. Which, when your pancreas isn't working the way it should, is simply not possible.

Something else I've noticed is that "old diabetics", that is, those of us where were diagnosed long before CGM's became available, tend to be much less obsessive about staying in-range at all times, instead focusing on long-term trends. I would argue that this attitude is a result of years of relying on finger sticks to get our bgl readings, and thus not being able to actually see the post-meal spikes or rapid raises or falls caused by food, exercise, and stress. Sure, we care about the numbers, but (anecdotally and based on observations) are more inclined to manage based on how we're feeling first, and the actual number second. 

In short, I would argue that diabetics should be able to manage their disease sans CGM before being given one, if only because the data overload results in some very stressful and unhealthy behavior that can lead to serious mental health struggles.

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Anyways.

I put a Libre on Ev. Part of it was straight up morbid curiosity about how a fully-functional pancreas behaves with the same food (and exercise) that fucks my shit up. And part of it was wanting to force the man who's agreed to spend his life with me (and has for well over a decade) to experience a few days in my life. Or at least, as close as a non-diabetic can get.

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A couple things that I knew but didn't really know until watching Ev's numbers for 9 days....

• Non-diabetics fluctuate throughout the day (yes, even fasting).
• They have some fairly impressive deltas (changes between readings, aka the slope of the line).
• They auto-correct thanks to that handy functioning pancreas, so their spikes and drops are kind of impressive, but less prolonged than the ones us pancreas-impaired folks get.
• Pizza gets everyone (also, it turns out that it takes 6 hours for my body to deal with it).
• Rice, Chinese, and Thai food result in a second spike after the meal, even when you produce insulin.

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We started off trying for a scientific approach - ya know, eating the same thing and doing the same exercise. Because pizza is a Diabetic's nemesis, obviously we started with that. 

The Pizza Experiments: Me on the left, Ev on the right

After pizza (where we learned that Ev has a bit of a spike a couple hours later, but nothing super crazy, and my slow-emptying stomach means I feel the pizza-effects for a solid 6 hours), we moved on to breakfast treats, aka muffins and donuts. This was not at all related to there being donuts in my office.

The Breakfast Experiments: Proof that donuts are bad for me, and muffins make Ev's bg spike

Given my propensity for issues with hypos during runs, we also did a comparison after eating oatmeal (I did my overnight oats mix, and he did regular oatmeal because apparently overnight oats are not his cup of tea).

The Running Experiment: Me on the left, Ev on the right - note the oatmeal spike and drop when the run started

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The pseudo-scientific approach stuck for two days, and then Ev got curious and started eating all sorts of carb heavy things that we normally would only eat sparingly. We discovered a couple things during this adventure. First, Thai food is amazing (duh), but does, in fact, give him a fairly substantial (for a non-diabetic) post-meal spike. Second, the initial spike was dealt with very quickly by his pancreas. Third, there was a second spike that aligns pretty closely with what I've encountered eating similar foods.

You heard it here first: some foods have delayed absorption resulting in multiple blood sugar spikes, regardless of if you're diabetic or not. For the record, this is not actually earth shattering or new information, but it was fun to see it in action with a functioning pancreas to compensate.

The post-food spikes were impressive, as were the post-meal drops... and the post-Thai Food spikes were real.

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All in all, it was a fun little science experiment, if only because it gave him a little insight into the stuff that goes into managing/monitoring your bgl and wearing the hardware every day. 

Ev commented that he found himself checking his bgl a lot (it's kind of addictive, as I can attest to), and adjusting his diet to try and keep his numbers level. 

It's also worth noting that he had a legitimate hypo one night, where the Libre read 58 mg/dL, that his body corrected (yay liver!). 

The highest number he hit was 168 mg/dL after one of his Thai food adventures. In general, his range varied from 75 mg/dL to 150 mg/dL. It's also worth noting that he had an a1c done with some regular blood work 6 months or so ago that came back at 5.1% which is a solidly non-diabetic number.

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When all was said and done, I walked away from this adventure with a bunch of screen-grabs of a non-diabetic that I can (and do) send to people wondering if their totally normal blood sugar response is actually normal. 

I also want the record to reflect that even us broken-pancreas people can do a passable impression of a non-diabetic.... as long as we ignore the difference in target ranges.

I want the record to reflect that, while Ev and his non-diabetic self is capable of 100% time in range, I managed an 82 hour streak in-range and a very passable impression of a non-diabetic. I am a god.

In closing, I was amused when Ev lost his Libre the same way I lost my first Libre: to a climbing rope in a rock gym.

The Dark Side of the Mind - the mental side of living with diabetes

I've talked before about the complexities of having a chronic condition and mental health. As a teen, I struggled with depression. Some of it, I'm sure, was the usual teenage angst, some of it probably should have been medicated, and some of it, I can only imagine, was related to having a chronic condition. Before I get into details, the ADA has a Mental Health Provider Directory to help match people with therapists that have experience treating diabetics. I strongly encourage you to use it if you need someone to talk to. 

People talk about grieving for the loss of "normalcy" when diagnosed with a chronic disease. I, too, preach it, but because diabetes is the only normal I've ever known, part of me questions whether or not I'm even allowed to grieve for something that I never had. Intellectually, I know I'm entitled to feel resentment and sorrow about the things that were denied me as a result of this disease; My life has been very different than most people's, and my diabetes is a large contributing factor to that. But when I went to therapy for my depression, I can't recall the role my diabetes played ever coming up. Looking back, I think at least one of my suicide attempts was a direct result of a feeling of helplessness and complete and utter lack of control over my body and its response to the world around me. I can't help but wonder if talking to a therapist who specialised in chronic conditions (or diabetes) would have helped me develop better coping mechanisms.

I am not alone in my battles with the mental health side of diabetes. My friend Kenneth also struggled growing up. He was able to lie about his health, miss injections, sneak food, and falsify logbooks. By the time his parents found out what was happening (which took a huge amount of effort on their part), they had to take him to the hospital for a DKA episode. Looking back, he thinks the reason he wanted to hide his struggles was a combination of guilt and depression, both of which can be helped by early identification and intervention. As we've talked, he's commented that he thinks therapy would have been beneficial, even though he wouldn't have wanted to do it at the time; it would have helped him understand that his parents were struggling as much or more than he was, and made it easier to understand their reactions.  

So what I've attempted to do here is break down some of the mental health stuff that we grapple with again and again. Some of it is pretty dark, all of it is based on personal experience (be it mine or someone I know), and a lot of it is uncomfortable. I am more than happy to talk about part or all of this with you, and point you in the direction of more information or help if I can. Because there is no way to sugarcoat it – diabetes is a bitch. And of course, before diving in I must state that I am not a medical professional and these are my thoughts, research, and personal experiences, not actual medical advice. While many of the terms (including diabetic distress and burnout) lack clear-cut diagnostic criteria, they are legitimate medical conditions and should be treated as such. Please refer back to the ADA resources listed above or talk to your medical provider.

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Control (or lack thereof) - Management vs. Survival

At one point, my parents took the entire family to a child psychiatrist. Because I was... difficult (Mom's word, not mine. Also absolutely true). At the end of the session, the psychiatrist asked my parents if they could learn to enjoy the chaos. They looked at each other and thought he was insane. Fast-forward to the present day and my parents agree that that response was not useful. But over the years, they learned to appreciate the validity of the comment – you can't control the diabetes and the kids, but if you can embrace the chaos, enjoy the ride, and smooth the bumps the best you can to have the best outcome possible. Keep in mind, it took them many years to realize the validity of the theory. You can't control it, so make it work. 

As a diabetic, the lack of control you exercise over your life is staggering. I rebel against the narrative that you "manage" this disease, because management implies that you can find a regiment that keeps things in check. But one of the "joys" of diabetes is that you can do the same thing every day and get different results. You don't have control over every minutia; you may do everything right and have a routine that works most of the time but you're still going to have bad days and you cannot prevent them.  

It's devastating when you realize that you will never win. You cannot beat a chronic condition when your own immune system is out to get you. I don't know if it's even worth trying, because your quality of life will diminish. We all have enough to deal with as human beings, be it life, relationships, jobs, school... it all builds on itself. We get sick (the regular kind), and we have all the regular mental struggles, in addition to managing a disease that does not play by any set of rules but its own. 

When I say you don't manage diabetes, you survive it, what I mean is that you are always half a step behind. I'll adjust my life, my packing, and my plans based on how my body is doing that day. Runs get shortened, hikes get aborted, lawn work delayed, and long drives cancelled because my body will not cooperate. Diabetes forces you to adjust and manage and be flexible, and if you cannot or will not bend to the whims of your disease, your mental health will suffer. And anyone who tells you otherwise is selling something. 

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Guilt

There are a lot of vicious cycles with diabetes, but guilt is one of the hardest to overcome. I've struggled with it on and off for years, despite knowing that nothing I did caused this disease. I know my mom struggles with guilt, wondering if there was something they could have done differently, if there was some unknown environmental trigger that caused my younger sister to be diagnosed a year after I was, and my older sister 14 years later. The unfounded guilt is probably the most difficult cycle for Kenneth. He still struggles with it today, but has learned over time that in any non-emergency situation, it's best to work on the immediate problem in isolation from everything else and then only later (like, the next day) talk about what happened and what can be done to prevent that kind of situation from happening again. Even today, I feel guilty for the impact my disease has on my husband and the activities we do, to the extent that sometimes I make up excuses to bow out of activities so I won't hold him back. I feel guilty for feeling guilty, and for having insurance that actually covers my supplies, and a support system that is amazing... there is nothing rational about it, and trust me, I know that. But the guilt is often a precursor to other, darker emotions, up to and including burnout and diabetic distress.

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Burnout

Even diabetics who experience burnout struggle with feeling like their experience isn't "bad enough" to be worthy of comment. While we hear stories of people experiencing burnout and not checking their BGL for months, running infusion sites until they get infected, and not bolusing for food at all, there are just as many people who experience burnout and test once a day instead of five times, stop eating food with carbs because they don't want to take insulin, and don't bother to correct because why bother. We are all at different places in our lives, and what qualifies as burnout for one person at this moment is very likely going to be different than what qualified as burnout for them two years ago. But a common thread in diabetics experiencing burnout is an increase in negative feelings towards their diabetes. Anger, frustration, depression... managing this disease day in and day out, it is often easier to ignore how hard it is, and many of us have a tendency to let the struggles accumulate until they are all we can see.

Overcoming burnout is challenging, but the following steps can help:

- Set small, achievable, and measurable goals

- Adjust and manage your expectations – don’t expect yourself to be perfect, and don’t compare yourself to other diabetics

- Seek out support and ask for help

- Don’t let perfect be the enemy of good – there is no such thing as perfect diabetes management, and “good enough” keeps you out of the hospital and lets you live your life.

Like diabetic distress, burnout happens and is not your fault. Many people experience burnout that lasts months to years, but that does not make them a “bad diabetic” or ensure they will have complications. Remember that diabetes is a full-time job that has to be balanced with life. Finding a workable balance, even if it means decreasing your time in range, is critical for your mental and physical well-being.

So if you take nothing else away from this blog, please make it this:

All burnout counts. It may run a spectrum, but it's all valid. Everyone different and what we define as "not dealing with it" varies. Don't use other people as a benchmark to judge your success. Don't let perfect be the enemy of good. If all you can handle right now is the bare minimum, you are still winning.    

 

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Depression

Here's the thing (and I debated even talking about this here, but decided that it's worth the discussion, despite the topic. This is gonna be a lot, so feel free to skip over it):

Diabetics have increased rates of depression and suicidal thoughts. And at some point, be it a result of burnout, feeling beat down, or a spiraling depression cycle (because don't kid yourself, there's a vicious, self-perpetuating cycle where you hate being diabetic, hate feeling like you're not normal, that you have to do all this extra stuff to stay alive, that this disease is going to control your entire life anyway so why should you bother?), its not uncommon for diabetics to realize that it would be so easy to just take a big dose of insulin and no food. To be very, very clear, this is a bad idea and I hope you seek out someone to talk to if you're in that kind of place. But even with diabetes, our livers dump glycogen into our bloodstreams in an attempt to combat the hypoglycemia, so, while you may have a diabetic seizure from the low blood sugar, you often pull through. Our bodies want to keep us alive. 

Both Kenneth and I (and many other long-term diabetics I've talked to) at some point took large amounts of insulin in an attempt to find an easy out. Our reasons may have varied, but both of us were struggling with depression. He was going through extreme diabetic burnout, and I was (inappropriately) responding to an external event. I wound up in the hospital after having a hypoglycaemic seizure, and the doctors pretty much went "oh, too much insulin. We know what happened, blame the diabetes," and called it good. Nobody thought to ask how I had managed to take double my daily insulin dose (and I was on a pump at the time, so they definitely could see that I had) and neglected to treat it. Keep in mind, this required three separate doses because of the maximum bolus limit on my pump. Let alone why I had done it at night, when the odds of someone finding me were lower. At no point did anyone stop and go, "I wonder if something else is going on?" The reality, unfortunately, was that I had been assaulted and didn't feel like I was able to cope with it – in fact, it took another 7 years before I told anyone about it. 

The problem many of us run into again and again is that doctors try to blame everything on the diabetes. Weight gain? Diabetes. Fatigue and migraines? Diabetes. Seizures? Diabetes, definitely not epilepsy. It seems like it takes much longer than it should to diagnose other conditions when you already have a chronic condition because first you have to convince everybody that it's not the diabetes. 

So yes. Depression, regardless of its roots, is alive and well in the diabetic community. 

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To quote another life-long diabetic friend, Sam, diabetes is not a disease of the weak willed. You have to be constantly aware of yourself and your environment. 

Burnout and feelings of depression and negativity related to diabetes is not rare in any form. Having to monitor everything you eat, every action you take, how much medicine you take and when, what you plan to do that day, etc. is exhausting. Add in the normalities of life like going to the store, going to work/school, going even to friends houses can be an extremely arduous adventure. You are constantly monitoring yourself 24/7 just in case you miscalculate something. Diabetics make hundreds of small decisions every day related to managing this disease, and it's exhausting. 

But we do it because really, there isn't another option. We do it because this is our reality. We do it because living with a chronic condition toughens you and makes you grow in unexpected ways. 

So for all those who stumble across this blog in search of validation or support, just remember: we are stronger than this disease and we will survive it. 

But also, diabetes can go fuck itself.

Dexcom G6 Adhesive Reactions: A Guide to Dealing with Hell

At the end of 2019, Dexcom changed their adhesive formula for their G6 continuous glucose sensors (CGM). The changes are all approved by the FDA and contain "medical-grade, pressure sensitive acrylic-based adhesives" like the previous patch. Both the old and updated adhesive formulas passed biocompatibility and irritation testing and are not manufactured with latex, isobornyl acrylate (IOBA), phthalates, colophonim, or 12 other commonly known skin irritants. The adhesive was tested in several clinical studies prior to release. 

But at the end of the day, the adhesive change (which was intended to improve the wear time of the sensors) has caused skin reactions and adhesive burns on a subset of users. As one of those users, let me tell you, it is really awful.

Adhesive reactions can manifest as localised redness, bumps and itchiness, and blisters, all the way up to full-fledged chemical burns. (I'm not embedding these reaction photos in this post because they're really graphic). Basically, they suck and tend to get worse with continued exposure to the adhesive that's causing the irritation. Besides discontinuing use of the CGM causing the reaction and/or rotating the insertion site to a different location, there are some steps you can take to help prevent reactions from happening. Steroid creams can help get reactions to go down faster, so I'd also talk to your doctor about your adhesive reactions. 

Because my body does nothing halfway (I've been told by high-up folks at Dexcom that I have the worst reaction they've seen), I've slowly developed (with help from the internet and Dexcom's own suggestions for dealing with adhesive reactions) a method for preventing adhesive reactions. 

Depending on severity of the reaction, you can build up to whatever combination of barrier wipes and films you need. 

Mild Reactions (redness, small bumps, itchiness)

Start with an over-the-counter fluticasone propionate nasal spray like Flonase. Spray it onto your clean skin and spread it evenly. Let dry completely before applying a second barrier wipe (IV Prep or Skin Prep are good). Skin Tac is a duel-purpose wipe — it serves as both a barrier and an adhesive wipe. 

Moderate to Severe Reactions

If reactions persist, inserting through a barrier film such as Tegaderm, in addition to the barrier wipes described above, is often sufficient to overcome reactions. If Tegaderm isn't enough, it's time to try a hydrocolloid barrier.

The main difference between barrier films like Tegaderm and hydrocolloid barriers like DuoDerm is that hydrocolloid barriers are impermeable, whereas barrier films will allow some air flow. The catch is, both barrier films and hydrocolloid barriers tend to not stick super well long-term, so adhesive wipes like Skin Tac are highly recommended. I strongly suggest using an over patch if you use a hydrocolloid barrier, since they really don't stick well on their own.

Severe Reactions, aka the nuclear option

At the end of the day, the best way to minimise adhesive reactions is to remove as much of the offending adhesive as possible from the equation. This means trim the excess adhesive from around the sensor prior to inserting. 

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Amy's Step-by-Step Guide to Avoiding Adhesive Reactions

The tool kit (left to right): alcohol swab, Flonase, Skin Prep barrier wipe, Skin Tac, DuoDerm (hyrocolloid barrier), Dexcom G6, Skin Grip over patch.

Step 1. Apply Flonase to site and spread evenly. Let dry completely (~3-5 min)

Step 2. While the Flonase dries, trim hydrocolloid barrier (DuoDerm) to approximate size of CGM adhesive. If using a barrier film like Tegaderm, trimming can be very difficult, and it may be worth buying a smaller size patch and trimming down the Dex adhesive.

Step 3. Start the sensor on tslim pump (not the phone app). If you don't use a tslim, go ahead and start the sensor on your phone or receiver. I suggest writing down the sensor code or taking a photo of it just in case.

  

Step 4. Trim excess adhesive from sensor, leaving some around the plastic transmitter clip.

  

Step 5. Mark location for the sensor.

Step 6. Apply Skin Prep barrier film to entire area. Let dry completely.

Step 7. Apply Skin Tac to area, leaving a small space around the dot where sensor will be inserted. Let dry 1-3 minutes until tacky.

Step 8. Place trimmed hydrocolloid barrier on sticky area, with the dot in the center. 

Step 9. Insert CGM in center of hydrocolloid barrier. Rub the adhesive in and around the plastic to activate the pressure-sensitive aspect.

 

Step 10. Insert transmitter and place over patch, being careful to overlap the adhesive around the CGM. 

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A few additional notes

I strongly recommend contacting both Dexcom (or whoever your sensor manufacturer is) and the FDA every time you have an adhesive reaction. Part of this is a bit of a "fuck you" to Dexcom, but also a favour to everyone else, since it creates documentation of the issues and, theoretically, can be used to motivate changes to the adhesive formulas.