Diabetes in the Wild: Doggie University Edition

I’ve enrolled my dog, Violet, into Doggie University.

You see, Violet is a perfect pup…except for the fact that she is highly reactive. If she sees another dog on a walk? She barks. A person? She barks. A car? She sometimes barks. A leaf blowing in the wind? Yes, she’ll bark even at that.

Her extreme observation skills are impressive, but not exactly what I’d call acceptable behavior in terms of how a well-mannered dog should react to any external stimuli. So I decided to start formally training her with the help of a local trainer.

Violet loved her first day of school (in which she spent the full day playing with other dogs and getting introduced to some basic commands), but I wanted to be more hands-on with her training. That’s why I got a 1:1 lesson with a trainer so we could work together with Violet.

And it turned into a completely random and unexpected diabetes in the wild encounter – just as they usually tend to be!

Here’s my sweetpea, demonstrating her mastery of the “place” command!

I walked into our lesson and the trainer asked me, point-blank: “Do you have diabetes?”

I was surprised. How did she know? The blank expression on my face must’ve been obvious to her, because she then pointed out that she could see my pod and Dexcom on the backs of my arms. I was literally wearing my diabetes and completely forgot about it.

I said, “Yup, I am! Do you know someone who uses either of these devices?”

She nodded eagerly. “My sister has type 1 diabetes, too, so I’m pretty familiar with all the technology.”

I smiled warmly at her; after all, it’s always nice when a diabetes-in-the-wild interaction is as pleasant and straightforward as this one. We chatted for a couple of minutes, in which I told her about my job working for a diabetes nonprofit, and she shared with me that she’s aware of some of the bigger diabetes organizations out there and “all the great things they’re doing for people with diabetes”. I loved how she acknowledged that, and how seamlessly we were able to transition from a casual diabetes convo to putting my pup to work.

All in all, it was a great lesson for both me and Violet – in terms of how quickly Violet caught onto things and how well that quick diabetes talk went. I enjoy it when people feel free to ask me about my diabetes upfront rather than bemusedly ogle at my devices. It’s a reminder that even when it feels like the diabetes community has a long way to go when it comes to combatting stigma, there’s still plenty of allies out there who really do get it.

Is a Bleeder a Reader? My Take on Bloody Dexcom Sensors

This blog post was originally published on Hugging the Cactus in 2019, and again in 2020. I’m sharing it for a third time because 1) it’s one of the most popular posts I’ve ever written and 2) it’s STILL an issue debate among the diabetes community! My opinion on bleeders being readers hasn’t changed. Read on for more (and be warned that the topic might make you a little squeamish, if you wince when talking about blood).

I placed the new Dexcom G6 sensor on my abdomen, hovering my index finger above the large orange insertion button. I pressed it, exhaling as I felt the minute needle pierce my skin’s surface. I looked down, and started to rub the adhesive in circles to make sure it was stuck, when I saw blood. Not just a drop, but a decent-sized pool forming beneath the sensor. Before long, just about the entire surface of the white adhesive was soaked in red.

Yeah, this was going to be a no-go.

Previous iterations of this post featured some kinda gnarly bloody Dexcom imagery. This time around, I’m sparing you (and me) from that.

It’s pretty rare for me to experience blood at the site of a Dexcom sensor. If I had to put a number on it, I would say less than 10% of my insertions draw blood. An even smaller amount – like, 2% – have caused me to bleed as much I did in the scenario described above. But I know I’m not alone in my bloody sensor experiences – it’s something that many other T1Ds who use a Dexcom have gone through.

There’s a bit of debate, though, that I’ve noticed in the past on Twitter threads and Instagram posts. What to do with a bleeder? Keep it and assume that it’ll read blood sugars normally? Or change it immediately and call Dexcom for a replacement?

Are bleeders readers? Or does it depend?

I’m going to go with…it depends.

Obviously, in that situation I described in the opening of this post, I decided that it wasn’t a good idea to keep the sensor on my body. There was too much blood and I didn’t trust that it would adhere well to my body. I didn’t know how long it would take for the blood to stop (only a few minutes, but still), and I couldn’t be sure that it wouldn’t mess up my readings. On top of that, I wasn’t trying to stain my clothing, if I could help it.

So in that circumstance, I did change my sensor right away, and was glad that the second try resulted in a much cleaner, blood-free insertion. I called Dexcom, explained what happened to the customer support representative, and got a replacement sensor mailed to me.

However, just about any other time I bleed upon a sensor insertion, it tends to be a minuscule amount of blood. I usually don’t even notice until it’s time to replace the sensor, and there’s a bit of dried blood left on the site. Other times, I’ll see small beads of blood forming underneath the spot where the transmitter snaps in. And there’s been a couple of occasions that I’ve bled a fair amount and been totally unaware of it until I caught my reflection in the mirror and noticed the blood staining the white adhesive. And in all of those cases, I’ve kept the sensor on for the full ten days, without noticing any discrepancies in my readings.

All that considered, in my inexpert opinion, I think that bleeders usually are readers and that they’re safe to continue wearing. Of course, there will be exceptions, like when there’s just too much blood to salvage the sensor. But every time I’ve kept using a bloody sensor, I’ve had the same amount of success with its functionality…so yes, I think that for me, bleeders are indeed readers.

5 Reasons Why I Took a Break from Continuous Glucose Monitoring

today because it’s a great reminder that diabetes isn’t a static condition – what works for a person with diabetes one day might not work the same way the next. So when I decided to take a Dexcom break, it was a much-needed change in my diabetes care routine that worked wonders for my mental and physical health. I just might take another one after reading this post again…read on for the full story.

I’ve decided to take a break from continuous glucose monitoring. This means that for an undefined period of time – maybe 3-4 days, a week, or a few weeks – I’m not going to wear my Dexcom G6 CGM.

Initially, I wanted to give myself a break because I was just burnt out from wearing it all the time and feeling so dependent on it. But as I started thinking about more, I realized that there were some other really great reasons for me to take a break from my CGM:

1 – I wanted to wear one less device. It can be tough to wear two medical devices 24/7. Sometimes I get super self-conscious of them. Other times they just aren’t comfortable to wear, such as when I roll over one the wrong way when I’m sleeping at night. So it’s nice to feel a little more free with one less device stuck to my body at all times.

2 – I was sick of the constant data feed. All those alarms going off whenever I cross my high or low threshold are straight up annoying!!! I know I could just turn them off on my CGM receivers, but the point of them (for me) is to try to maintain as tight of a control on my numbers as possible. But now that I’m intentionally not wearing my CGM, I’m realizing how much I appreciate the reprieve from all that buzzing and beeping. There’s lots of reasons to take a break from continuous glucose monitoring, but sometimes one is enough.

Taking a break from my Dexcom was a much-needed change in my daily diabetes care routine.

3 – I have some new blood glucose meters to try. The only way that I can really put my new meters to the *test* (lol) is to use them – and goodness knows that I have very little desire to do manual finger stick checks when I’m wearing my CGM.

4 – I’d like to hold myself more accountable. I rely on my Dexcom heavily at all times. I look to it before I start exercising, before I eat something, before I do anything, really. I bolus using the data it provides and trust it implicitly. But I’ve recognized that by developing this habit, I’ve become lazy. I don’t measure out food as much because I figure that if I bolus too much or too little for it, I can just watch what my Dexcom tells me and treat from there. It’s kinda sloppy, in my humble opinion, so I’m trying to put more of the trust back in myself for my diabetes monitoring.

5 – I’m trying to reacquaint myself with my body’s cues. Before CGM technology, I was really good at recognizing high and low blood sugar symptoms…but then I started using a CGM and found myself reacting to highs and lows (e.g., treating them prematurely), even if I didn’t feel those high/low symptoms. So I want to retrain myself so I can make sure I never lose that ability, because I think it’s important to know exactly how my body alerts me to various blood sugars, rather than depending solely on a piece of technology to do it for me.

A Rookie Mistake

You’d think that 24 years of living with diabetes would turn anyone into a seasoned veteran of the condition, but even the most experienced people with diabetes slip up and make mistakes every now and then…

Case in point? Me, because I neglected to make sure I had a way of monitoring or checking my blood sugar when exercising…and then experiencing a scary low that I probably could have caught sooner, or maybe even avoided, if I hadn’t been so careless.

This all happened because I inserted a new Dexcom sensor just before taking off for my 3-hour self-defense class. I knew that the sensor’s warm-up period would end and that my continuous blood sugar readings would begin partway through class, so I felt fairly comfortable going without a blood sugar meter as a back-up. After all, my Dexcom sensors almost always start up without any issue, so I was trusting that this one would follow suit.

And that was my biggest mistake: trusting my technology.

Any time I make a rookie diabetes mistake, my palm goes straight to my face in embarassment.

When the warm-up period was complete and the class was taking a quick water break, I decided to check my Dex to see what my first blood sugar readings were. I was surprised (and instantly annoyed) to see that instead of a number, my Dexcom was displaying a request for a blood sugar calibration – just like the old G5s used to ask for upon insertion of a new sensor. I couldn’t understand why this happened, but I knew that pondering the matter wouldn’t make any difference…the only thing that would get my Dexcom running normally again was the finger stick checks, which wouldn’t be possible for me to do until I got home from the class because I was without my meter.

So I had no choice but to rely on nothing but my instincts and sensations in order to get a sense of where my blood sugar was headed for the remainder of the class.

And let me tell you, I can’t remember the last time I felt so vulnerable in terms of my diabetes. I was running on zero information, other than the fact that I typically can feel oncoming low blood sugars and that I tend to feel thirstier when my numbers are on the upswing. It was disconcerting – even more so when a little while later I started to feel shaky and dizzy, like I was starting to go low.

I knew I could either 1) treat what I thought was a low blood sugar and deal with the potential consequences (high blood sugar) when I got home, or 2) take a chance and ignore the low symptoms because I couldn’t confirm whether or not I was actually low. I hate to admit it, but I let a good 15-20 minutes pass before I decided it was better to correct what felt like a low rather than run the risk of passing out in front of the entire class. Turns out that I made the right call to treat my low: I felt much better after I ate some fruit snacks, and my blood sugar when I got home that evening was in the low 80s, indicating that I probably avoided a pretty nasty low in class.

While the whole incident could’ve been easily avoided, it did remind me that I ought to take some of the trust that I have in my technology and distribute it a little more evenly between it and my instincts. I proved to myself that in emergency situations, I don’t need a meter or a CGM to pick up on low blood sugars (though I obviously would prefer to have that equipment at my disposal at all times). Instead, I need to trust my instincts more and procrastinate less when it comes to taking an action – because if I had waited longer than those 15-20 minutes, the situation could’ve escalated and then I would’ve really been kicking myself for leaving my meter at home.

Rookie mistakes suck when they happen, but at least the silver lining is that there’s always a lesson to be learned (or reinforced) when they do.

The Dexcom Site I’d Never Try Again

This blog post was originally published on Hugging the Cactus on February 26, 2021. I’m sharing it again today because I see folks trying new Dexcom sites all the time, usually with a lot of success! I thought it was worth it to share my experience with the forearm site because it was the polar opposite of a win for me – read on to learn why.

I don’t usually regret trying new sites for my Dexcom and OmniPod.

But recently, I discovered the one area that I wish I hadn’t tried…and that is my forearm.

The forearm Dexcom site gets a big old NOPE and OUCH from me.

For a couple years now, I’ve seen forearm Dexcom sites all across social media. People lauded the location for how comfortable it is and the accurate readings it produces, so I figured, why not give it a shot? (LOL diabetes humor.)

Plus, I wanted to give my stomach and the backs of my arms a break. I put both pods and sensors in those locations and while I like them a lot, I’m wary of scar tissue building up.

So with little fanfare, I tried putting my Dexcom on my left forearm (my non-dominant arm). And I knew immediately after hitting the orange button to insert the sensor that it was a bad choice because it STUNG. It stung something fierce! I remember wincing the moment it pierced my skin, and fortunately, the pain did go away…but resurged with a vengeance about half the time I made any arm motions. It didn’t matter if I was flexing it up or down or twisting it to reach for something – any movement could trigger varying degrees of pain. Nothing incredibly intolerable, but enough to make this site uncomfortable.

My face says exactly how I feel about this site: It’s not a winner.

And this pain didn’t altogether disappear one day: I still felt stings 24 hours after I put the sensor on. Maybe I hit precisely the wrong spot (I noticed a very small amount of blood discoloring the white adhesive of the sensor), but I asked the diabetes online community and it seems that the general consensus is that this location sucks. The half-dozen or so people who messaged me said that either the pain was too much and they took the sensor off early, or they toughed it out for a full 10 days and never used the site again.

What’s more is that this site wasn’t as out-of-the-way as I wanted it to be. I roll up my sleeves dozens of times each day for different tasks, and each time I went to roll up my left sleeve, I had to go about it gingerly so I didn’t risk bumping into the site and prompting ripples of pain. This was straight-up annoying because my diabetes devices don’t usually inhibit my movements so much.

The one plus-side of trying the new site, and the only thing that motivated me to keep it on for the full 10 days, is that it was just as accurate as any other Dexcom site I’ve tried. My readings matched up pretty closely with how I felt and with what my blood sugar meter reported, so that was a saving grace. And I have to admit that even though I was worried that sleep would be impossible with the sensor in such a tender spot, it really didn’t interfere with my slumbers, which was a relief.

All in all, though, the accuracy wasn’t enough to convince me to want to keep forearm sites in my regular rotation. I’ll stick with abdomen and upper arm sites for now, with the occasional thigh site to further prevent scar tissue.

Battery Blues

Between this post and the one from a couple of weeks ago, this blog is rapidly turning into one in which I bemoan the battery life of my diabetes devices…

The fact of the matter is, though, that I’ve definitely had my share of battery issues lately. The Omnipod DASH problem was resolved (rather swiftly), thanks to the folks at Insulet. But now it’s my Dexcom transmitter battery that’s acting up…and resulting in a whole lot of lost data (and even more frustration) for me.

If I can’t have a working pancreas can’t my diabetes devices at least have everlasting batteries?

It all started about a week and a half ago, when my Dexcom app notified me that my transmitter battery would be expiring in 3 weeks. That was to be expected – Dexcom transmitter batteries last 90 days, and according to my records, the one I’d been using was for sure approaching the expiry date.

What I didn’t expect was that the waning battery life in my transmitter would trigger multiple false blood sugar readings and periods of no readings whatsoever. At least I think my transmitter is to blame – I hadn’t experienced any issues with sensors from my last shipment and the app usually never experiences errors like this unless there’s a problem with the sensor and/or transmitter, so logic led me to conclude that my transmitter was simply losing reliability as it came closer and closer to its expiration.

My workaround was to do finger stick checks any time I was untrusting of my Dexcom, or whenever it was giving me a “no readings” alert. Plus, I’ve got a fresh transmitter ready to be activated once this one stops working, so it’s not like I’ll be without a Dexcom for an unbearable length of time.

In spite of that, I still thought this was worth talking about here on the blog because 1) I can’t remember if I’ve ever had a transmitter fade so dramatically in the last 3 weeks of its lifespan, 2) it was an exasperating situation and I needed to vent, and 3) I’m wondering if this has ever happened to anyone else before, and if there’s a workaround.

At this moment in time, I’m not quite sure what a feasible solution would be besides ripping a sensor off prematurely and sticking to finger stick checks for a few days until my annoyance ebbs…which is exactly the strategy that I decided to go with. I’m definitely looking forward to new transmitter time…

An Onslaught of Alerts

Imagine receiving the same notification on your phone every 5 minutes…over and over again…nonstop until you actually do what it’s demanding to you.

Sounds maddening, right?

Well, that’s exactly what I experienced with my Dexcom app recently. Every 5 minutes on the dot, I got a “Calibration Alert” push notification that told me to “enter new blood glucose reading to maintain your sensor accuracy”. Doesn’t sound like too big of an ask, right? Why not just do it?

Of course I just did it – the first handful of times that it asked. But when this alert persisted to appear on my phone each day, around 24 hours after I’d calibrated my Dexcom sensor, I started to get super irritated. But I was also confused. I shouldn’t have to calibrate my Dexcom, like, ever. The G6 was designed to make it so calibrations are a thing of the past. I only ever even bother to calibrate it within the first few hours of wear if I feel that the blood sugar it’s reporting is really off, and that usually forces it to correct itself and show far more accurate readings fairly quickly.

So why was my Dexcom being so forceful with the reminders for me to calibrate?

Imagine seeing this alert pop up on your phone…every 5 minutes…for an hour…or 3. That’s a few dozen reminders too many.

I knew that my best shot at finding the answer to this question was by going to the people who are intimately familiar with the ins and outs of Dexcom devices – no, not the manufacturers themselves. I’m talking about my colleagues, of course. (One of the best parts about working at a diabetes nonprofit is that my coworkers and I collectively have 100+ years of diabetes experience under our belts and constantly ask one another for advice or wisdom regarding various diabetes scenarios.)

When I asked them if they’d ever encountered anything like this, one person explained that the CGM can get a little confused if, when after the initial two-hour warm-up period, a super high or a super low blood sugar can trigger the system to get stuck – almost like it’s unsure of what it’s reading. This tracked for me because when I started up this particular sensor, the two-hour warm-up period collided with a particularly nasty low blood sugar of 35. That blood glucose value is low enough that the system can’t even pick up the number “35” – instead, it just shows that I’m “LOW”.

So as a result of this, my sensor was likely just in need of calibrations every 24 hours just to make sure it was working properly. It’s probably in the code of the software or something to prompt users to calibrate every day until the system feels more confident about what it’s reading. That makes sense and all, but dang, is it annoying. Sure, I could’ve silenced the alarms a lot faster if I just calibrated whenever I got the first alert of the day, but my schedule didn’t always allow for that. And besides, after 4 or 5 years of using the Dexcom G6, this T1D has gotten used to no more finger pricks; because of that, it’s hard to go back to old habits.

But hey, it has wound up being another diabetes scenario that I hadn’t experienced yet and just another lesson learned, so while it may have been a bit of a nuisance it was also educational. And I’m okay with that.

Diabetes Hurts (Sometimes)

“Gimme a sec, I’m multitasking right now…owwwwwww!”

I was talking to my boyfriend on the phone and changing my Dexcom sensor at the same time when I was caught off-guard by (and yelped in surprise at) the sharp sting of the sensor’s needle plunging into my arm. It was a sting that evolved into a burn that lasted a solid 24 hours, much to my discomfort.

Examples of just a few of the many needles that I’m constantly poking myself with.

People often ask me whether or not my diabetes devices hurt. The answer is almost always no, because I’ve grown accustomed to the constant pricks and pokes. But once in a blue moon, I have a sensor or pod insertion that hurts so badly that my eyes well up with tears or I have to deal with a night or two of uneasy sleep, because it aches any time I roll over onto the stinging site.

It doesn’t matter that I’ve had at least 30,000 (yes, I did the math) shots and site changes over the years – diabetes still hurts, sometimes, and that’s just talking about the damage it does physically.

Diabetes hurts mentally, too, though that type of scarring is a whole lot more difficult to quantify.

The bottom line? Diabetes doesn’t hurt all of the time, but on the rare occasions it does, it’s a painful reminder that this is just the way of life for people like me who’ve got no other choice than to deal with it.

The Worst Diabetes-Related Customer Service I’ve Ever Experienced

Roughly six months ago, I wrote a blog post in which I gave diabetes supply company Byram Healthcare a glowing review.

Now, I take back everything I said then (and have since updated the post with a preface).

I truly believe that Byram gave me the worst customer service that I’ve ever experienced as it relates to my diabetes…and maybe that I’ve ever had in life, in general.

I take back every nice thing I had to say about Byram six months ago.

It’s a long, messy story – one that spans half of this year – but I’ll break it down for you.

Basically, I found it in January 2021 that Dexcom would no longer be directly supplying their products to customers. I’d be automatically transferred to Byram Healthcare, a medical equipment distributer. However, I didn’t want to use Byram and called them after I got my first order in the mail a few months later to see if I could 1) return the supplies to them, 2) get a refund for said supplies once they were returned, and 3) cancel my account because I wasn’t going to be using them.

At that time, I was told yes to all three of those things. I got a return label from them so I could mail back the supplies, which I did within days of making that phone call to customer support. That way back in early May.

Imagine my surprise when I started receiving bills from Byram in June that stated I owed them $263 for those same Dexcom supplies that I had mailed back and was told I wouldn’t have to pay for because I never used them – I never even opened the original box!

So of course I contacted Byram. I was told to ignore the bill, that a note would be made on my account (mind you, the account that I’d closed) that I didn’t owe any money. Sounds like it was simple and easy to take care of, right? Oh, so very wrong. I received at least two more bills in the mail from them (which immediately reignited my anger both times). Naturally, I called on both of those occasions and was assured TWO MORE TIMES that I didn’t owe money and that I should ignore those bills because they were being automatically generated by their billing system, which was being falsely triggered because my mailed-back supplies weren’t checked in at the warehouse yet.

Stupidly, I believed them and assumed that the whole nightmare was over when the bills stopped coming in the mail…but everything changed the day that I got the collection notice.

Yup, that’s right – Byram had a collection agency COMING AFTER ME because according to them, I had failed to pay the $263 bill THAT I NEVER OWED IN THE FIRST PLACE. The moment I read that notice, I felt pure rage roiling in my core. I couldn’t believe my eyes. I thought this whole saga ended months ago! Now I’d have to use time I didn’t have – because it was a workday afternoon and I was trying to get real-life stuff done before the weekend – to sort this mess out.

I was beyond upset. Life with diabetes is hard enough, but throw this BS into it and it’s just not fair that getting my regular 90-day supply of a key component of my diabetes toolkit turned into something so stressful and potentially expensive. I was determined to get answers and get reassurance once and for all that they were in the wrong here, not me.

I was able to look up the USPS tracking number for the mailed-back supplies which turned into the proof I needed for both Byram and their collections agency that I had, indeed, done my end of the bargain this past May. When I finally got into contact with their billing department after nearly 30 minutes of being on hold (oh, and after a first attempt to call them during which I “held my place in line” using that option on the service line, only to never get a damn phone call back), I heard the lamest excuse for the whole thing about how they’d recently switched warehouses for this sort of thing, which explained why the billing system wasn’t registering my returned order…

…how do you think I reacted to that news? Like that’s MY fault for their company’s obvious disorganization!?

Needless to say, I didn’t care about excuses, I just wanted assurance that this whole nightmare would go away as soon as possible and they’d do everything possible to accomplish that…which I received in a short amount of time after speaking with the customer service rep.

So yeah, to say that I am displeased and untrusting of Byram Healthcare is a bit of an understatement. I thought it was important to share this story here on Hugging the Cactus not because I want to damage this company’s reputation, but because I want to help anyone else with diabetes who gets Dexcom supplies to avoid going through anything similar. Take my experience as a reminder to advocate for yourself and always hold onto records and receipts from your supply distributors…

…because you never know when you might need them to defend yourself.

Sensor Snapping by the Seashore

Sensor snapping by the seashore…try saying that five times fast.

The past several weeks have been so busy that I completely forgot about an incident that occurred when I was away on vacation in July.

An incident that I’d never experienced in my decade of using Dexcom CGMs…

It was the second-to-last day of my trip. I was blissfully soaking up the sun’s rays – it was by far the best beach day of my entire week in Maine. That meant that the sun was strong that day…so strong that I was basically applying sunscreen every hour, on the hour, because I am as pale as Casper the friendly ghost.

During one of my sunscreen applications, I noticed that the Dexcom sensor on the back of my arm was looking a little off. I mean that literally – the transmitter seemed like it was jutting out at a weird angle. Upon further inspection, I realized that the grayish-purple prong that helps keep the transmitter in place was hanging on by a thread. I was pretty surprised to make that discovery, for a few reasons: 1) I didn’t know that could happen, 2) the sensor was only about 24 hours old and nothing went awry during the application process, and 3) I couldn’t remember bumping into anything that would’ve caused a plastic piece to break off my sensor. But the most surprising part was that it was enough to cause my sensor to stop collecting readings altogether – I was getting an error message on my Dexcom app.

My broken sensor prongs and me, sitting on the beach.

I didn’t know what to do other than carefully break the prongs off all the way – they weren’t going to do me any good now – and gingerly press my transmitter down into my sensor for several minutes to see if that did anything…and no dice. I resorted to plan B, which was to wait until I got back to the house I was staying at to do some more research into the matter.

Unfortunately, the internet had nothing helpful to offer me. I was somewhat relieved to know that this has happened to other people, but definitely bummed to learn that there wasn’t a real solution other than to apply a new sensor – which wasn’t an option for me since I had only packed the one sensor for my trip. Whoops. So much for me being the diligent, prepared T1D that I thought I was.

Ultimately, I decided to rip the sensor off and deal with finger stick checks for the rest of my trip; after all, I was going to be returning home the next day. I look at the whole incident as yet another example of why it’s important to pack extras of my extras, and as a reminder to expect the unexpected in life with diabetes!