The summertime season is in full swing, and now that it’s here I’m thinking of the various ways my diabetes is more pronounced in the warmer weather. It’s much more visible, leading to many more questions, but what are the cues that give it away to others? I thought of four…
Visible sites. Shorts-and-t-shirts weather makes it much harder to place pods or CGM sensors in discrete locations. And if I’m going to the beach? There’s no way that I can even attempt to hide my devices. That’s probably why I make them even more obvious with…
…Pump and sensor art. I’ve written about Pump Peelz and GrifGrips in the past – they make adhesives and skins that are specially designed to fit pods, PDMs, pumps, meters, and more. The products they make are truly little works of art for diabetes devices, and I like to make sure all of mine are decked out in the summer months so I can show off tech that’s not only functional, but also stylish.
I’m looking forward to donning my best beach-y Pump Peelz on what I hope will be many trips to the beach this summer.
Gadget tan lines. Or if you’re like me, it’s more like sunburn lines. That’s because each summer, without fail, I somehow manage to neglect the space around my pod or my sensor, so when it’s time to remove it, there’s a huge red circle around the perimeter of where the device was situated. Maybe this year I’ll actually learn my lesson and take the time to apply sunscreen properly so I can avoid the very not-cute sunburn circles.
Travel coolers. This is probably the least obvious sign of diabetes in the summertime, but to those in the know, coolers meant to protect insulin are pretty recognizable compared to regular coolers. Whether it’s a Frio cooling pouch or another brand of insulin cooler, people with diabetes tend to carry these throughout the summer months in order to prevent insulin from spoiling due to heat exposure.
Peanut butter and jelly. Batman and Robin. Mickey and Minnie. Name an iconic pair, and…
…I can guarantee that it won’t be conference calls and low blood sugars.
Indeed, I can attest to how much the two DON’T belong together because I faced a rather annoying one the other day.
It happened during one of the many weekly meetings that I now attend virtually along with the rest of my department at work. Not only do I have to dial into these meetings, but there is a video component, as well. Fortunately for me, all that I’m doing is listening during these meetings instead of talking, so I can stay on mute for the duration of most of them, and occasionally make various facial expressions that show I’m listening.
So I was, indeed, on mute when the shrill BEEEEEEEEEEEEP BEEPBEEPBEEPBEEP of my CGM receiver started. And thank goodness I was, because that sound is enough to derail anyone’s line of thought.
But rather than address the low right away, I was a little stupid about it.
I turned off my webcam for approximately 30 seconds just so I could capture how agonizing the wait for my blood sugar to come back up was.
I decided to wait as long as possible before I corrected it.
I know, I know – that’s a dangerous game to play. But hear me out! My meeting was running from 12:30 to 1:30. I planned on having lunch right after the meeting, and it was already 1 o’clock when my CGM started shrieking. I thought I could wait to treat it with my lunch food…but that’s not what ended up happening.
I started feeling low, low. Like, shaky, sweaty, unable to focus on anything that my group was discussing, and ravenously hungry.
So I did what any person with diabetes would do when their blood sugar is that low – the only thing to be done, of course, was to whip off my head phones, turn off my camera, sprint into the kitchen, wolf down a handful of raisins, and jump back onto the call.
Oh, and turn off the camera again for another 30 seconds or so (in the 15 minute window of time it took for my blood sugar to stabilize) to capture a picture of myself on the struggle bus that is the recovery process from a low.
The whole ordeal stood out to me because it’s very different from the last low that I remember experiencing during a work meeting. That one happened when we were all still in the office, and I had to get up and dismiss myself from the conference room so I could grab a package of fruit snacks from the office kitchen.
That one was much more disruptive, but I handled it much more promptly than this one.
This one wasn’t even noticed by a single person on the conference call (and if someone did see me pop off camera for a moment, I’m sure they just assumed I was having connectivity issues).
This one I didn’t react to immediately, and I ended up being punished for it because I missed out on some meeting information due to my inability to concentrate and the need to finally treat it.
This one and that one do have one thing in common, though: Low blood sugars absolutely do not complement meetings, conference calls, or any sort of work-related task, ever.
I hope that the moment you read the title of this blog post, Avril Lavigne’s smash hit from 2002 got stuck in your head (sorry, not sorry).
On a related note, it felt like it was the right phrase to use as a title for this post.
In the past, I’ve written how diabetes has turned me into a bit of a control freak (meaning that I don’t do well with the curve balls it sometimes launches into my path). I prefer a schedule – nothing too regimented, just enough to know what to expect in terms of diabetes issues in a day. And that’s not always possible; hence, I have some control-freak tendencies.
Lately, I’m also wondering if diabetes has made me more emotional.
The thought occurred to me when I was deep in self-reflection mode, a place I’ve found myself going to again and again throughout my quarantine. I started thinking about instances in which I let my blood sugar influence my mood, and I realized that it happens more often than I care to admit.
Life with diabetes sometimes means reacting like all of these emojis within a matter of moments.
I wonder if the tie between my emotions and my diabetes exists because my diabetes requires me to be so attentive to my body at all times that it’s also caused me to have a heightened awareness of my emotions and what may be causing them. I definitely allow blood sugars, both high and low, to affect how I feel when they happen. I let the successes and failures of diabetes technology influence my mood. And when I start to get down in the dumps about non-diabetes things, it often turns into full-blown diabetes burnout.
Diabetes is complicated on its own.
But to think that it interferes with my emotions, too?
Isn’t it enough for diabetes to impact me just physically and leave my mental state out of it?
On Wednesday afternoon, I signed a charter intended to bolster worldwide diabetes advocacy. The charter was launched by T1International and I’m sharing it here with you to encourage you to sign it, too. Here’s some more information on it, pulled directly from the T1International website:
Around the globe today, people with type 1 diabetes are dying because they cannot afford or get ahold of insulin, supplies, education and treatment.
To survive and live a full life, everyone with type 1 diabetes has the right to the following:
1. The right to insulin
Everyone should have enough affordable insulin and syringes.
2. The right to manage your blood sugar
Everyone should be able to test their blood sugar levels regularly.
3. The right to diabetes education
Everyone should be able to understand their condition, including adjusting insulin dosages and diet.
4. The right to healthcare
Everyone should have hospital care in the case of emergencies and ongoing specialist care from a professional who understands type 1 diabetes.
5. The right to live a life free from discrimination
No one should be subject to any form of discrimination or prejudice because they have type 1 diabetes.
In addition to magnifying diabetes advocacy efforts globally, the charter is also used to influence the actions of governments and organizations so that policies can be changed and the rights of people with type 1 diabetes can be prioritized.
It took me fewer than 30 seconds to sign the charter, and I put this blog post together in under 10 minutes. Join me by signing and spreading the word about it to help people living with type 1 diabetes have access to vital insulin, supplies, healthcare, education, and freedom that are necessary in order to survive and live full lives.
Have you ever been in such a hurry to do something within a certain period of time that it works to your disadvantage?
I guess there’s a reason why they say haste makes waste…
…especially when haste results in accidentally whacking your insulin pump off your arm.
I was reminded that this can happen the other day when I had my friend over for some socially distant hang time. Just because we had to stay six feet apart during her whole visit didn’t mean that I had to be a bad host, though, and I was in a rush to bring some Goldfish for us to snack on while we sat in the sun outside. I flitted about the kitchen, grabbing the bag, a plate, and some napkins to bring out with me. When I went to open the sliding door that would take me from the kitchen to the porch, I gave myself just enough room for my body to slip through it sideways.
I should’ve walked through the opening slowly; rather, I dashed through it like I was about to cross the finishing line of a race – and my pod was suddenly, a bit violently, ripped off my arm in the process.
“ArrrrrRRRRRRRggggHHHH!” (I think that’s a pretty good approximation of the sound that I made when it happened.)
I wish I had a picture of how absurd it looked to have my pod dangling from my arm; alas, taking photos wasn’t a priority of mine in this situation.
My friend, alarmed by my animalistic emanation, asked if I was okay. I came to my senses and calmly explained that I’d just knocked my pod off my arm, and she looked on in horror as she saw it dangling by an adhesive’s thread on the site.
“Doesn’t that hurt?!” she asked in dismay.
I reassured her that no, while the actual sensation of the pod ripping off my skin didn’t hurt, it definitely stung that I was now forced to replace it even though it had only been in use for less than a full day. It sucks when I can’t use my supplies to their fullest extent because each time something like this happens, there’s a dollar amount attached to what I’m wasting, and what’s worse is that I can’t blame it on anyone or anything except myself.
Ah, well…a fresh pod was applied and no harm was done in the end. But next time I try to enter or exit that sliding door, you can bet I’ll be a lot more careful when I do so.
Life with diabetes can be the opposite of a cakewalk. In fact, it can be so frustrating at times that I seriously consider ripping my hair out due to sheer agitation.
When thinking about the things that drive me nuts about diabetes, I came up with a list of 8 occasions in which I come this CLOSE to losing my freakin’ marbles:
1. When low blood sugars refuse to come up…
2. …And when high blood sugars refuse to come back down.
I’m considering these first two as separate list items because the scariness of a lingering low and the frustrating nature of a stubborn high can be two very different types of “GAAAAAAAAHHHH!” But both can be especially suck-y when you feel and know that you’ve been doing everything right to treat them without experiencing the expected results.
3. Pod and CGM sensor failures.
Oooh, any sort of device failure can be so exasperating any time of day. But they’re worse when they happen at inconvenient times, such as in the middle of the night or during an important conference call. All diabetes technology should work flawlessly at all times, but that’s not always the reality that we live in.
4. Inaccurate results.
I can’t stand when my blood sugar meter or my CGM report false readings. Sometimes, I’ll check my blood sugar two times in a row just to see how close both readings are to one another, and it makes me want to throw my meter across the room when I see that they’re off by 20+ points. Once, I had a reading that was off by more than 50 points! That makes a major difference in how much insulin I give myself in that moment in time, so inaccurate results can really derail my blood sugars for hours after.
I’m sure you can imagine how entertaining the search results were when I looked up images to go with this blog post.
5. Folds in the adhesive.
Whenever I apply a fresh sensor or a pod, I try to be super careful and make sure that the adhesive sticks smoothly…but despite my best efforts, that doesn’t always happen. Folds in the adhesive are far from the worst thing in the world, but they do make it more difficult for my devices to stick on for the full length of time that I need to wear them, and I usually end up having to add tape around them to reinforce the hold. More tape = more folds = more irritation!!!
6. Unexplained blood sugars.
Anyone with diabetes has been there, done that. You could follow the exact same routine from one day to the next, even eating the same foods at the same times, and get totally different blood sugar results. Or maybe you thought that you bolused perfectly for a meal, only to find out hours later that you’re much higher or lower than you anticipated. Whatever the reason behind them may be, unexplained blood sugars are just obnoxious.
7. Screeching alarms.
Speaking of things that are obnoxious, let’s talk about wailing OmniPod or Dexcom alarms for a hot second. There’s nothing like a resounding BEEEEEEEEEEEEEEEEEEEP to ruin your day!
8. The INSANE costs of our supplies.
Undoubtedly, the thing that most makes me want to rip my hair out when it comes to diabetes is the cost of supplies. I’ve blogged more and more recently about the criminal cost of insulin – since the 1990s, the cost of insulin has increased over 1,200% (!!!) – and I’ll continue to do so until EVERYONE with diabetes can afford this life-saving medication. We never asked for diabetes to happen to us. But it did. And the fact that many people with diabetes have to make sacrifices in order to, well, survive, is simply not okay, and the most infuriating thing about living with this chronic illness.
When people notice my OmniPod insulin pump, the first question that I’m asked is “what IS that?”
After I explain that it’s my insulin pump, and it’s called a pod, the second question I’m asked is some variation of “how long does it last?”
The canned answer that I provide is something about having to change it every three days, because that’s how the OmniPod is advertised.
But I’ve used this pump for years now and never bothered to really test this three-day limit. I’ve known for a long time that my pod works a handful of hours after the expiration alarm starts chiming, but I wasn’t sure about exactly how many hours I had before a pod expired for good.
So, the other day, I decided to find out.
Have you ever made your pod last longer than 3 days? If so…are you a wizard???
My pod expired at 10:22 A.M. Since I prefer to change my pods in the evening, I figured it was the perfect time for this little experiment, assuming that the pod really would last me for the majority of the day.
And, well, it did! At 10:22 on the dot, the pod beeped at me to notify me that it was expired. And in the six hours after that, it would alarm every hour (on the 22nd minute) to remind me, time and time again, that it was expired. In the seventh hour – beginning at 5:22 P.M. – my PDM started chirping at me on and off every 15 minutes or so. First it was because I was running out of insulin, but then it was to really get the point across that my pod was expired!
I was determined to use every last drop of insulin in the pod, though, so I bolused for my dinner around 5:45 and I was pleased to discover that I got my full dose of insulin without any issues. As I was cleaning up after dinner, that’s when the signature OmniPod BEEEEEEEEEEEEEEEEEP went off as one blaring, unceasing alarm. I checked the time: 6:22 P.M.
So there was my answer. An OmniPod can last precisely 80 hours after you initially activate it for the first time (or in other words, 8 hours after you receive the first expiration message)…as long as it still has insulin in it. It’s definitely something good to know for sure now, because in the future, it might come in handy and help me avoid wasting precious insulin.
This post was originally published on the T1International website on May 6, 2020, and was written by Rosie Collington. I am sharing it on Hugging the Cactus because to be quite frank, I never understood the many issues surrounding insulin price increases. After reading this post, I had an “aha!” moment as I finally began to understand how the profits from insulin price increases are distributed. It’s an important issue to understand: with increased awareness comes an increased drive to make change.
Patients living with type 1 diabetes have known for years that the list price of insulin in the United States has soared. They’ve paid the price – in insurance premiums, in upfront costs, and also, tragically, in some cases with their health.
But until recently, it has been difficult to prove just how much the list price of insulin has increased, and what proportion of the higher costs for patients have gone to the three main insulin manufacturers – Eli Lilly, Novo Nordisk, and Sanofi – versus other companies in the US prescription drugs supply chain, like insurance companies, pharmacies, and pharmacy benefits managers. Information about pricing negotiations is considered a trade secret, meaning that the actual data is difficult to access. Instead, researchers and patient groups have had to more or less rely on guesswork to estimate the value of price increases, or the highly selective data published by the companies themselves, which do not paint the full picture.
The lobby group representing pharmaceutical companies in the United States, PhRMA, has suggested that pharmacy benefits managers (PBMs) have been the primary beneficiaries of the sharp list price increases of many prescription medicines in recent years. The American Diabetes Association’s Insulin Access and Affordability Working Group similarly reproduced selective data released by the three insulin manufacturers on the differences between the list and net prices – the amount the manufacturer receives – of a few insulin medicines, suggesting that the additional profits accrued by the manufacturers was low relative to intermediaries like PBMs.
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But in March of this year, researchers at the University of Pittsburgh provided evidence that the net price of insulin medicines in the United States had also soared – by 51% between 2008-2017. This indicates that while other intermediaries had benefited from list price increases, the manufacturers had too. This may seem obvious, but having data to prove it is important.
For my research with Bill Lazonick, funded by the Institute for New Economic Thinking, it has been key to mapping how the profits from higher insulin sales revenues have been distributed. We wanted to find out whether insulin list price increases in the United States had contributed to higher research and development (R&D) investment by the companies, as they so often claim is the case. What we discovered was that as the list price of insulin has increased in the past decade, the ratio of spending on R&D relative to what the companies distributed to shareholders had actually decreased. While over the period of 10 years, the companies spent $131 billion directly on R&D, crucially we found that during the same period, the companies had distributed $122 billion to shareholders in the form of cash dividends and share buybacks.
Cash dividends are the means used by all publicly listed companies to distribute money to shareholders as a reward for holding shares. Share buybacks work quite differently – companies can buy their own shares from the market, which inflates the value of existing shares on the market. Share repurchasing can also benefit company ‘insiders’, like executives, who often receive pay in shares, because they can decide to time when they sell their shares to get the most value. This is not technically illegal, though it was once upon a time. In the last year, some lawmakers in the United States, including Bernie Sanders and Elizabeth Warren, have called for stock buybacks to be banned.
Fundamentally, the system should not have permitted shareholders to profit in this way as diabetes patients were struggling to access their life-saving prescription medicine. As coronavirus continues to spread around the world, the pharmaceutical industry is facing more scrutiny than ever before of its financing and drug development processes. By understanding how value is extracted by shareholders in the pharmaceutical industry, and what relationship this has to patient access, we can, hopefully, create a better system.
The title of this post really should be “Sorry Twitter but I haven’t been an active user in about two and half months for some specific reasons I’m about to highlight here, but hopefully I’ll come back to you later when things settle down,” but that’s just not very catchy, is it?
Anyways…
The reason why I’m saying ta-ta for now, Twitter, is that it’s become a really tough space to dwell in – or even pop in for a quick visit – throughout this pandemic.
It’s nothing that any account that I follow did or tweeted specifically…it’s just an amalgamation of everything that appears on the site these days. Between the news alerts and downright depressing tweets showing up left and right on my feed, it’s taken a huge hit on my mental health.
I’ll return to Twitter full-time…eventually.
It’s a shame because for a long while, Twitter was kind of my go-to in terms of connecting with the diabetes community. I participated in weekly diabetes social media advocacy chats that were a lot of fun and a great way to communicate with fellow T1Ds near and far. But as Twitter grew more and more negative for me, I found myself gravitating more towards Instagram, where things are admittedly a little too shiny/happy/beautiful/perfect all the time. Instagram doesn’t quite fill the void that Twitter did for me in terms of linking up with my T1D community, but it’s something steady I can rely on for now, and with the added benefit of introducing me to other T1Ds who might not be on Twitter.
I’ll end this post by saying that I doubt I’m the only one who feels this way about one or more types of social media during the pandemic. Actually, I know FOR SURE that I’m not the only one who has felt emotionally drained by logging into different platforms and seeing just the one post that is enough to sap you of all positive, happy feelings. And you know what my advice would be to anyone who has felt the same way as me? Recognize it by avoiding those platforms for as long as you need to. I deactivated my Facebook profile for a couple of different weeks so far this year and my mental health absolutely benefited from me doing so. I don’t tap on the Twitter app on my phone lately and I know I’m saving myself from a ton of anxiety and emotional turmoil.
Just like the world has adapted to this “new normal”, it’s all about being pliable enough to see what does and doesn’t work for your mental heath right now, and then identifying alternative ways you can support it.
This post was originally published on Hugging the Cactus on November 19, 2018. I decided to update it, since some of my thoughts and observations on the Dexcom G6 have changed over time due to more experience with it. Updated answers will be in parentheses and/or italics just below (and in some cases, next to) the original answers…
I’ve been lucky enough to have the Dexcom G6 CGM in my life for just over six months now. (It’s actually been about 2 years at this point!) In that time, many people in my life – both T1Ds and non-T1Ds – have asked me countless questions about my experience with the device. I thought it’d make sense to address some of the most commonly asked questions here, in the hopes that I can provide some insight to those who are curious about the Dexcom G6.
Question: Can the Dexcom G6 be restarted?
Answer: In my experience, no. I cannot get the G6 to restart like I could get my G5 to restart. But take my “no” with a grain of salt, here, because I know of other people who HAVE had success restarting their G6 sensor, making its life extend much longer than the 10 days guaranteed by Dexcom. I have only tried to restart the G6 once, with absolutely zero success, following the process outlined here. My advice to those who want to try to restart their G6 is to do so cautiously, and make sure you’re not trying to do so with the last sensor in your stockpile.
Since I initially wrote this, I WAS able to restart the G6 and did so “successfully” a handful of times. But in my opinion, it wasn’t worth it because 1) the sensor would stop reading blood sugars 2-3 days after restarting and 2) I can’t be sure that restarting doesn’t wear out my transmitter faster, which wouldn’t work to my benefit since I don’t know how to reactivate transmitters. My two cents is that while reactivating old Dexcom models like the G4 or G5 often worked well, the technology within the G6 simply isn’t meant for accurate restarting.
Question: Is it actually safe to take acetaminophen (Tylenol) on the Dexcom G6?
Answer: Yes! I’ve noticed that acetaminophen can be taken safely on the G6. I did not anticipate for it to be unsafe, seeing as it was advertised as one of the big improvements Dexcom made from the G5 to the G6. I’ve taken Tylenol a handful of times without noticing any issues with my CGM readings, but as always, be sure to monitor your blood sugar carefully and perform a manual finger stick check if your symptoms don’t match up with your CGM.
This is still absolutely true! I’ve yet to observe Tylenol, or any other drug really, having an impact on my CGM’s readings.
Question: I can’t get my Dexcom G6 sensor to stay put for the full ten days. How do you make it last?
Answer: There’s tons of ways you can help ensure your G6 sensor stays stuck on for the entire ten-day duration. I always make sure that my skin is completely dry before the sensor makes any contact with the site. Avoiding any excess moisture is key in helping it stay put. If I notice the sensor starting to peel around the edges after a few days of wear, then I use a Pump Peelz CGM adhesive to keep it in place. Those tend to work really well for me. In times of serious adhesive doubt, I also use Skin Tac wipes, which basically glue that sucker down. One last tip I recommend is to avoid sites that come into contact with a wide variety of surfaces. In other words, a sensor that’s placed on the abdomen may fare better than a sensor on the leg, because the odds of the sensor getting accidentally knocked off due to contact with clothing or other objects are lesser. You know your own body better than anyone, though, so trust your own judgment when it comes to CGM placement.
So at the time of publication, I hadn’t tried my leg as a site for the CGM. Now that I have, my answer changes a little regarding the “usability” of this site: I’ve had great success keeping the CGM sensor on my leg for the full 10 days without a single peel in the adhesive. Another tip I’ve picked up along the way is to contact Dexcom and ask for their free “overlay patches”, which they produce and that work just like any medical adhesive that Pump Peelz or GrifGrips manufacture especially for Dexcom products.
Oh hey, it’s me! In my purple cast showing off the G6. Fun fact: I don’t own an Apple watch – the one I’m wearing here was provided to me to wear just for the G6 promotional materials.
Question: Is sensor insertion truly painless?
Answer: For me, G6 insertion has been pain-free approximately 85% of the time. It’s stung slightly a handful of times, but I’ve found that it only hurts when I choose a site that’s not particularly fatty. That’s why I generally stick with my abdomen – either side of my navel – or the back of my arms for G6 insertion.
I stand by this estimate – once in a while, I get a site that’s a little more sensitive and there’s a slight sting, but nothing like it used to be for the G4 or G5. And now that I’ve added my thighs as sites into the mix, I’ve got more site rotation going on, which can help.
Question: Is the G6 really that much more accurate compared to the G5, or any other CGM on the market?
Answer: Yes and no. That may not be a very satisfactory answer, but I’ll explain why that’s my belief. Overall, the G6 seems to be more accurate for me than the previous Dexcom CGM models I’ve worn. Are the number always on point compared to what appears on my meter? No. Do I wear the Dexcom CGM to have an accurate picture of what my exact number is at a given moment in time? Kind of, but I also know that this isn’t totally realistic. After all, users of the Dexcom CGMs know that it measures blood sugar levels in five-minute intervals. It can’t give me a clearer picture of what my blood sugar changes are minute-to-minute. So with that in mind, I find that the G6 is really excellent for monitoring trends – seeing how rapidly my blood sugar is falling or rising, or seeing how it changes gradually over time. The patterns are more important to me than the precise numbers; at least, that’s how I feel in my current stage of diabetes management.
I can’t really speak to other CGMs on the market, such as the Freestyle Libre or Medtronic’s CGM. But what I can say is that I’ve heard less-than-stellar reviews about both. It’s important to remember, though, that they’re not meant to be the exact same as the Dexcom CGM. The Libre itself isn’t really continuous and can’t provide users with information until they chose to wave the receiver over the sensor. And as far as I’m aware, the Medtronic CGM communicates directly with Medtronic pumps, and I’m not sure how seamlessly the systems work together.
Bear in mind that when it all comes down to it, I’m answering these questions with my experience, and my experience alone, in mind. Dexcom is and will always be the number one resource to go to with any questions regarding their CGM devices. But hopefully, the information I’ve shared here will at least help someone who is curious about the G6 feel more motivated to seek additional information. I stand by the fact that it has revolutionized my own diabetes care and management, and though it’s far from being flawless, it’s still an invaluable tool to have incorporated into my daily routine.
I still have not tried any CGM model out on the market except for Dexcom CGMs. To this day, it’s what I know and what I’m most comfortable with, so I don’t anticipate that changing any time soon (though it’d be kind of cool to try another and compare it to my G6). The one thing that has changed is that I rely on my G6 readings a lot more heavily these days. I use a blood sugar meter to check my blood sugar only once or twice a day now, whereas a year and a half ago, I was using it at least four times a day. I’ve put greater trust into my G6, but I do remain cautious against the technology and always check with my meter when I’m not fully believing my G6’s readings.
Hugging the Cactus 