An Insulin Resolution is Necessary

This post was originally published on the T1International website on June 29, 2020, and was written by Cyrine Farhat. She discusses her participation in the WHA virtual forum on Access to Insulin and how she used it as an opportunity to voice her concerns about barriers to insulin access in her country (Lebanon) and around the world.

An Insulin Resolution is Necessary for Lebanon and the World

Diabetes has been on the global agenda in some form ever since World Diabetes Day was created in 1991,which is also the year I was born. It took 15 years to put diabetes on the United Nations agenda after that, to tackle the urgent need to pursue multilateral efforts to promote and improve human health, and provide access to treatment and health-care education. Fast forward another nine years to 2015 when the 2030 agenda was launched and the Sustainable Development Goals (SDGs) were adopted. Despite all of that, we are now in 2020, talking about access to insulin when we should have already made it widely available and affordable to all pillars of society.

Sadly, my country and many others are still facing many challenges with insulin access and affordability. Lebanon’s recent financial crisis has caused a dollar shortage that, since September, has restricted the ability of medical supply importers to import vital medical supplies. First it started with masks, gloves, and other protective gear, as well as ventilators and spare parts, and now even essential diabetes supplies are sometimes unavailable. The government has also not reimbursed public and private hospitals for bills, which has made it harder for diabetics to purchase their medication and other diabetes-related medical supplies. For example, Novorapid insulin has been hard to find at pharmacies over the past two weeks.

I had the honour to participate in the WHA virtual forum on Access to Insulin and to address all my concerns as a patient advocate from Lebanon. The aim of the virtual forum was to facilitate a wide discussion between a group of experts and advocates on this issue. The crucial problem is that almost a 100 years after the breakthrough that has saved millions of lives worldwide – the discovery of insulin – many people still cannot access or afford it.

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Patients like Cyrine have the power to change the world.

The fact that I was able to voice my concerns as a person with type 1 diabetes among the panellists that the forum included was very empowering. The panel included Zachariah Muriuki, Project Manager – National Diabetes Prevention and Control Program at Ministry of Health, Kenya; Dr. Kaushik Ramaiya, Consultant Physician and Chief Executive Officer at Shree Hindu Mandal Hospital, Dar es Salaam, Tanzania; Greg Perry, Assistant Director General, IFMPA; and Emer Cooke Director, Regulation of Medicines and other Health Technologies, World Health Organization.

The forum started by showing a video that displayed testimonials from people living with type 1 diabetes around the world, including the barriers they face in regards to access to insulin, and responses from health care providers. Although I’ve personally lived with diabetes for almost 13 years and have dealt with so many obstacles, it still breaks my heart when I see what people with diabetes worldwide have to go through in order to get insulin and remain alive.

When asked during the forum about the barriers that the Lebanese have been facing with access to insulin and how the government needs to address these concerns, I depicted the current economic situation in Lebanon. The government is absent, especially after the revolution that spiked in October 2019 and left behind a collapsing economy. With hyper-inflation skyrocketing at 240% and the Lebanese Lira collapsing, the government has decided to remove the subsidy from bread and combustibles. The Central Bank has set their own policies restricting depositors’ access to funds in their current dollar accounts and the transfer of money abroad, making it harder to finance imports, including of medical equipment and medicine. These issues can put people living with diabetes in a very dangerous position. With no substitute to imported insulin, and the decline in purchasing power due to inflation, how will Lebanese people be able to afford their medication?

I shared that I believe in the upcoming months we will be left with an insulin crisis once the subsidy is also removed from medication. Patient advocates in Lebanon have been trying to reach out to the government, to no avail. The only thing we can do is to continue to raise our voice until we are heard.

In another question, I was asked what it meant to have the World Health Organization (WHO) and their Member States recognize and prioritize access to insulin, and how people living with diabetes and the global community can take this issue forward. I said that once the international community admits and perceives “insulin as a human right”, the entire scope of advocacy for access to insulin would have solid foundations and would shift from voicing about lack of access to actually forcing governments to comply. As advocates, we must seek accountability from governments regarding progress on WHA targets and address hurdles and bottlenecks in the process. Governments should also set state-level targets, and develop a strong participatory monitoring framework and management information system to measure outcomes of targets under SDGs and WHA.

The panel discussed other matters such as steps that have been carried out in Kenya to enhance access to insulin, how Tanzania has also worked towards improving access and the recommendations it provides to other countries, and how the WHO is committed to improving equitable access to insulin. It was concluded that the WHA resolution on insulin needs to be comprehensive in the requests to governments and to the WHO on actions they should take. Here, civil society, governments, and WHO need to define key requests and alight goals that serve making insulin accessible.

As a Global Advocate for T1International, I will continue to push for change in any way possible. Insulin is life support and no person should have to decide between putting food on the table or affording insulin. I truly believe that we are capable of creating change. The right of access to insulin is mine, yours, and the world’s. If it is our right, then we will not stop until we get it!

27 Acts of Kindness: Days 12, 13, and 14

In times of sadness, fear, and uncertainty…laughter can be a powerful medicine.

I know that I haven’t had much to laugh about lately. Neither has…well, the world, really.

So my desire to have a good chuckle, and make others laugh along with me, was strong this week and inspired Friday’s little act of kindness…

Friday, 4/17 – Act of Kindness #12: I dressed up as Dwight Schrute today.

Yes, that character from The Office. Two years ago, I dressed up as him for Halloween and it was a hit among my coworkers. I figured I could surprise them on Friday by dressing up as him (I still have the wig, glasses, yellow button-down, and tie) and attending my virtual meetings in the beet farmers’ signature garb.

Despite my concerns that they might think I’m a freaking weirdo, they loved Dwight’s appearance in both of my Friday afternoon meetings. Inspired by their positive reaction, I took my Dwight disguise a step further and uploaded all sorts of pictures and videos to Instagram of me in costume doing funny things for my friends and family who follow my account to see. I got a ton of messages throughout the day thanking me for my silliness because it did what I wanted it to do: make people smile.

And I even walked my parents’ dog around my VERY small town dressed as Dwight. I got a couple of honks, a few smiles, and more confused looks than I could count, but it was all worth it – those who know and love The Office as much as I do got a kick out of it, and that’s what mattered to me.

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Photographic evidence of the Dwight costume. And a phrase commonly associated with his characters with a diabetes twist: Bears. ‘Betes. Battlestar Galactica.

Saturday, 4/18 – Act of Kindness #13: Early Saturday afternoon, I got the disappointing news that the Children with Diabetes Friends for Life Orlando conference was canceled this year. I was saddened because I made plans to be there in-person for the first time in seven years. There were so many people from the diabetes online community who I wanted to meet in real life at this conference, but I know that the right decision was made to help keep our community safe and healthy at home. Plus, the conference is moving to a virtual format, so it helps to know that we will be able to attend it in some form.

Anyways, the cancellation encouraged me to ask for a partial refund (in lieu of a full one)  for the conference registration I’d purchased earlier this year. The money that I didn’t get back went straight to Children with Diabetes to help them fund their mission, and I feel that it was the right thing to do since they need support (and funding) to make these conferences happen in the first place.

Sunday, 4/19 – Act of Kindness #14: New England weather is effing weird. It snowed and rained all day Sunday, and then yesterday it was sunny and a fairly warm 61 degrees! The beautiful weather brought with it a revitalization for me. I had all sorts of energy to help my parents with a myriad of tasks around the home, so that’s what I did. I couldn’t even complain about it, because dare I say, I enjoyed the chance to move around the house and yard so much (if my parents are reading this, they’re probably jumping for joy over the fact I just admitted that). It felt good to be productive, and since my parents have both worked their butts off in the last few weeks (okay, they always work hard, but the last few weeks have been a little different), I was happy to do a little something that helps them out so they could have a bit more time to rest.

My acts of kindness continue to be small, in the grand scheme of things. But knowing that they’ve helped people, in some teensy-weensy way when things have been rough, continues to motivate me to keep up this challenge. Halfway there!

Oops! My CGM Did it Again

Oh baby, baby
Oops, my CGM did it again
It played with my BG, got lost in the graph
Oh baby, baby
Oops, my CGM thinks it’s right
That it’s control is tight
I’m not that gullibleeeeeeeeeee…

Ahem, oh! Excuse me for changing the words to Oops! I Did It Again, a real Britney Spears banger that I listened to over and over again in my younger years. But it just seemed appropriate because it describes the exact kind of betrayal I got from my CGM – at the tail-end of a very long day in the car, no less.

Oops! My Cgm did it again

Memory Monday: The First Time I Tried Alcohol & How it Affected My Diabetes

One Monday per month, I’ll take a trip down memory lane and reflect on how much my diabetes thoughts, feelings, and experiences have unfolded over the years. Today, I remember…

…the first time I drank alcohol and how it affected my diabetes – more specifically, my blood sugars. And that’s right folks, I CAN recall it…fortunately, this experience does not coincide with my first time actually getting drunk.

Don’t worry, Mom and Dad, you won’t recoil in horror while reading this post!!!

My first time drinking alcohol occurred during my first week of college, freshman year. So…college of me.

My freshman year dormitory held fewer than 100 students. Due to the relatively small nature of the building, everyone started bonding and forming friend groups pretty quickly. By the time our first weekend on-campus rolled around, we were all itching to get together, continue to get to know one another, and naturally, drink like delinquents.

I Volunteer To Drink!

That Friday night, I was sitting on the floor of my friends’ dorm room – Emma and Kira had the largest, swaggiest digs in our whole friend group, if not the entire dormitory – when our friend Chris entered, holding a full bottle of grape-flavored Svedka vodka in his hands. I remember him making the rounds, pouring us shots of vodka that we would drink as a group. As he filled shot glasses, I started feeling extremely nervous. I had zero prior experience with alcohol, let alone vodka. So many questions flitted through my mind: Would I feel drunk right away? What was it going to taste like? Does the grape flavor mean that it contains more sugar, and would it make my blood sugar go up?

I barely had time to contemplate answers, though, when people started lifting their shot glasses into the air and toasting the beginning of our college careers. Even though I was sweating bullets, I smiled and cheered along with everyone else as we tossed back our shots…

…which tasted absolutely foul. I’m pretty sure I almost retched, but did what I could to contain myself because I didn’t want to seem like a loser. I’ll never forget thinking to myself, this shit tastes just like how nail polish remover smells. How can people possibly drink and enjoy this?

I sat there, internalizing all my thoughts and feelings about drinking my first shot of alcohol, and just tried to blend in with the group. But it was kind of difficult for me to do, because at some point in the night, my anxious thoughts consumed me and I abstained myself from drinking anything else. I was too caught up in the unknown, and I cared too much about how this one little innocent shot of vodka might impact my diabetes.

As I would come to find out later that night, one shot of vodka had zero-to-no affect on my blood sugars. And of course, in time, my fears about alcohol and my blood sugars faded because I educated myself on how to do it safely. I learned that every type of alcohol has a different carbohydrate content. I discovered what did and didn’t work for me, often in a controlled environment. But I wouldn’t change my first encounter with it at all because the shared experience of drinking shitty grape vodka with this group of strangers, on the first Friday night of college, is one of the many shared experiences that turned them into some of my dearest friends. That, I can raise a glass to…as long as it’s not filled with Svedka anything.

That Time Low BG Made Me Mad at the Moon

Low blood sugars in the middle of the night are far from pleasant. But they’re especially grating when you’re just trying to have a sleepover with your best friends and your CGM alarms loudly and urgently, rousing more than just me from a peaceful slumber.

Dammit, diabetes…you’ve done it again.

I don’t know how or why the low happened. I went to bed around 1 A.M. – we had stayed up late talking, drinking wine, and eating snacks – and at that time, my blood sugar was 156. You can’t get much better than that, and it felt even sweeter because we’d eaten pizza for dinner earlier in the evening.

I thought I’d be fine overnight. I might come down a smidgen due to the unit and a half I took to cover a slice of fabulous flour-less chocolate cake (utterly heavenly), but I made the assumption that I wouldn’t come crashing down.

I should know by now…never assume with diabetes.

So it happened at about a quarter of four in the morning – a witching hour, in my mind. I woke to the frantic buzz buzz buzzing of my CGM and quickly acknowledged it, then reached for my tube of glucose tablets. I did it as silently as I could, seeing as I was sharing the room space with my three gal pals. From what I could tell, my super slow glucose tablet chewing didn’t even cause my friends to stir. It seemed that I’d successfully managed to avoid waking anyone up, thank goodness.

I was just starting to fall back into a doze when the frantic low CGM alarm blared – BEEP beep BEEP beep BEEEEEEEEEEEP. Ugh! Upon hearing the first beep I snatched up my receiver, silenced the alarm, and scooped up my test kit and my phone. I tiptoed out of the bedroom from which we were all nesting to the living room, where I searched through my backpack for the Skittles I’d purchased earlier in the day…because that’s right, this 3:45 low blood sugar hadn’t been my first in the last twelve-hour window of time.

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Low blood sugar in the middle of the night can make you feel weird things…such as anger towards the moon.

I plopped myself on the couch and started furiously chewing Skittles. I remember looking out to the sliding glass doors and to the balcony and to the parking lot and then finally up to the sky to see the moon shining brightly at me. It was positively dazzling, yet infuriating with its cheerful gleam. I wanted to yell at it to stop looking so happy. I muttered to myself, “this sucks,” and reclined a bit on the couch while I waited to come up from the low.

Everything was fine within 15 minutes. I was on my way up and could safely go back to bed. And again, I congratulated myself for not waking anyone up.

Or so I thought.

“Did anyone hear my CGM go off in the middle of the night?” I asked my girlfriends, approximately six hours after the incident when we were all awake and about to head out to breakfast.

“Yes! I was wondering what that loud, aggressive noise was,” said one. I cringed, an apology lingering on the tip of my tongue, when she continued with an “are you okay? Don’t worry about the noise, I fell back asleep soon after.”

I was grateful for her reassurance, but also for her concern. It felt good to know that ultimately, she didn’t give (apologies for language) two shits about the actual sound that my low blood sugar caused, she was just worried that I recovered from it okay and could get back to sleep soon after.

I smiled to myself. Hours before, I’d been cursing the moon for merely existing and dealing with an annoying, random low blood sugar. But now, I was cruising at a great morning BG and I was on my way to get a delicious breakfast with my gal pals. Diabetes has its moments, but I sure as heck appreciate it when it cooperates during the ones that matter most. So in hindsight, the 3:45 A.M. low was nothing more than a temporary annoyance, and I was just glad that the worst thing it did was interrupt my sleep (and mine alone) for 10 minutes rather than ruin actual precious time spent with my friends.

Favorite Things Friday: My Myabetic Backpack

One Friday per month, I’ll write about my favorite things that make life with diabetes a little easier for me.

It’s no secret that I love Myabetic products. In fact, I wrote a whole #FavoriteThingsFriday post on the brand last year. So why am I revisiting it now?

Because I recently purchased a Myabetic backpack, and it didn’t take long for it to become my all-time favorite Myabetic item that I own.

There’s lots to love about the Brandy backpack. For starters, it comes in this gorgeous frosty pink shade that reminds me of ballet slippers and bows and bubblegum and peonies and tons of other similarly hued, lovely things. But it’s so much more than pretty, it’s also extremely practical. I was sick of lugging around a giant handbag with me everywhere I went. It would weigh my shoulders down and it took up too much space.

The Brandy backpack, though, makes use of the space it takes up with tons of built-in compartments specially designed for various diabetes devices, on top of lifestyle items. I can fit my entire test kit in the front pouch, leaving the main area open for my wallet, keys, cell phone charger, and other items. I can also keep a vial of insulin in the insulated back pocket stitched in the interior of the backpack, which is super handy for when I’m traveling.

Plus, there’s even a large opening in the back of the backpack – the part that lies securely against my back when I’m wearing it – for me to store my phone and a few other lifestyle-y items. It’s actually pretty amazing how much the cute little bag can fit.

Proof that diabetes style can be without shame, indeed.

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Memory Monday: The Shattered Insulin Vial

One Monday per month, I’ll take a trip down memory lane and reflect on how much my diabetes thoughts, feelings, and experiences have unfolded over the years. Today, I remember…

…the insulin vial that my mother and I accidentally broke in the bathroom of a restaurant, many years ago. R.I.P., tiny vial of Humalog.

This goes back to the days of having to scurry off to the restroom soon after ordering our meals to check blood sugars and inject insulin. And it was a pain. We wanted to be considerate of other diners around us in the restaurant, so doing our diabetes things at the table wasn’t an option. That left us with the most logical choice, the bathroom.

On the night of the broken vial, we were having dinner at a local restaurant. Once our dinner orders were placed, we headed off to complete our routine. And it went just as expected: We knew our blood sugar levels and did the mental math necessary for figuring out our insulin intakes. If memory serves correctly, I was still at an age where I wasn’t totally comfortable with injecting myself yet and would ask my parents to help me whenever we were in a public place (I felt better about self-injecting at home, my literal comfort zone). So my mom ushered me into a stall and went about filling her syringe, then mine. Soon after she stuck me with the needle, it happened…the vial fell. I don’t know if it was my hand or her elbow that knocked it off from its perch, but something caused it to tumble down to meet its end.

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It was a dramatic moment. If a slo-mo camera had captured the ordeal, I’m sure it would’ve shown my mother and I donning identical, horrified expressions as the vial smashed into smithereens on the tiled bathroom floor.

 

 

 

 

It wasn’t the end of the world; after all, we’d just taken our shots before the incident, and the vial wasn’t completely full. But it was just full enough that we were upset about all the wasted insulin that formed a small puddle on the floor.

I remember my mom gingerly picking up the pieces of the fractured vial and disposing of them, sighing as she went about the task. That whole experience resulted in a few things. 1) We made sure to get a vial protector soon after it happened to help cushion future insulin vials that were accidentally dropped and 2) We got insulin pens a bit further down the road, which proved to be much more durable and portable than vials. In fact, they made it so we could do injections at the dinner table, in the car, and just about anywhere with ease and discretion.

But this incident remains etched in my memory because it instilled always being careful with my diabetes supplies from that moment on. All of my diabetes stuff is expensive and extremely precious because of what it does for me, my mom, and millions of other people on a daily basis – it’s got to be treated carefully, always.

Endo Appointment Anxiety

I’m feeling anxious about my appointment with my endocrinologist tomorrow.

I don’t know why. I like my doctor very much: She’s always encouraging, pleasant, and helpful. The only thing I’d change about our appointments is to slow them down a bit; sometimes, she whips through them so quickly that I forget to ask her the questions floating around in the back of my mind.

Could it be that I’m worried about my A1c test? Possibly. I don’t know whether my A1c has gone up or down in the last three months. I have stretches of time in which my blood sugar behaves the way I want it to, but I also experience clusters of days here and there of complete diabetes chaos. In the last month, for instance, there were a few too many circumstances in which my blood sugar was above 300 mg/dL. Each time, I’d correct the high, only to either experience 1) a sudden drop resulting in a low or 2) several hours of prolonged high blood sugar because it was taking the insulin a long time to take effect.

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I love that there are posters about “understanding” diabetes on the wall – it’s too complex to break down into a few bullet points.

Now that I’m thinking about it, maybe those scattered, wicked-high blood sugars are the reason why I’m anxious about this appointment. I know that my doctor will probably ask me about them, and I’m going to have to admit to her that a combination of emotional eating, lack of carb counting, and general carelessness resulted in those highs. I know that she won’t judge me, but…I can’t help but judge myself for causing the blood sugar swings. The rational part of me is aware that it’s unhealthy to blame myself for occasional slip-ups, but the goodie-two-shoes, Miss “Perfect Diabetes” part of me is shaking her head in shame and disappointment.

If nothing else, this is a prime example of how diabetes can be an absolute (warning: foul language following) mind fuck.

What to do When Diabetes Technology Fails (at the Worst Possible Time)

This past Saturday afternoon, my Dexcom G6 sensor stopped working. It wasn’t sending data to my smartphone app or my transmitter, so I was forced to fly blind…at a party with tons of people I’d never met before, an impressive food spread, and few beverage options other than beer from a keg or spiked punch.

Definitely not a good time for my Dexcom sensor to go kaput, especially considering I was getting on a plane the next day and didn’t have a backup. And I wouldn’t get my hands on a fresh sensor for a couple more days, when I would return home from my adventures in Washington, D.C. and Nashville, Tennessee.

So yeah, it was pretty much the worst timing ever for my heavily-relied-upon diabetes technology to fail.

How did I handle it? It might sound incredibly obvious, but…I just reverted back to life before a CGM, meaning that I tested my blood sugar much more often than I do when the ol’ Dexcom is up and running. At the aforementioned party, I sucked it up and pulled myself away from conversations to check my numbers every so often with my meter. I still participated in barbecue and beer consumption, but I dialed it back because I couldn’t be sure of what direction it would send my blood sugar in, or how quickly it would happen.

As for the rest of my trip, and my travel days, I remained diligent. I’d test and correct as needed approximately every two hours. I set alarms for the middle of the night so I could be certain that I wasn’t too high or too low. I went back to relying on sensation – was I feeling thirsty because my blood sugar was high? Was my shakiness a sign of an oncoming low? It surprised me how easily I slid back into those routines, but I guess that after so many years of practicing them, it makes sense that I was still in tune with my body.

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No data…no problem.

And, perhaps most shocking of all, I remained pretty calm about the whole situation. Normally, it’d send me into a panic and I’d chide myself over and over for not having a backup sensor. But, really, I carry around enough diabetes junk – adding a clunky sensor insertion device into the mix sounds excessive. After all, the sensors are supposed to WORK for the full ten days that they guarantee. It gets exhausting, having to anticipate technology failures when they should never happen, so I shouldn’t be upset with myself for not carrying more than the essentials.

The lesson in this experience, I think, is to be unafraid to depend on my intuition. I literally grew up managing my diabetes with hardly any technological aid, and I can do it again now in a heartbeat as long as I trust myself and the process.

Nor’Easter = No Power? No thanks!

Earlier this winter, I blogged about how winter weather can affect diabetes. I thought I covered just about all of the ways, but Winter Storm Quinn reminded me that I left out a major factor when it hit last week: power outages.

How could I forget? After all the disaster and emergency preparedness articles I’ve read over the years, it should’ve been one of the first things I thought of when I wrote that post. But it didn’t even come to mind until last week’s situation.

On Thursday morning, I woke up to eerie silence. I rolled over and saw that my alarm clock’s light was dimmed, indicating that we had lost power overnight. Groaning, I wandered over to a nearby window and tugged the shade open to reveal a winter wonderland. Or it may be more accurate to say winter horror show. The world outside was coated in freshly fallen snow so heavy and compact that even the strongest trees in our yard found themselves compromised. Branches hung limp and defeated from their trees, and the weaker limbs that had fallen off were strewn haphazardly on the icy ground. But what really got our attention was the power line that lay across our driveway, struck down by the winds and snow.

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A tree that fell victim to the storm, and the power line that collapsed with it.

It helped to explain our lack of power, and it also made it clear that we should get out of our house sooner rather than later – that is, if we wanted to keep warm and work remotely for the day (as opposed to making treks into our offices or taking personal days). So we packed overnight bags speedily, just in case we would need to spend the night away from home, and made our way out into the arctic tundra.

We set off for the refuge of my aunt and uncle’s home, where the wifi was working and the heat kept things cozy. Plus, Monty the black lab and Lucy the yellow lab were present and welcomed us warmly.

As I logged into my work laptop, it suddenly dawned on me that I neglected to pack my diabetes supplies. In fact, it hadn’t even crossed my mind to grab any insulin from our powerless refrigerator to ensure it stayed cool. But it didn’t make sense to make the trip back home for any of it, so I crossed my fingers and hoped for the best.

Our house ended up being without power for about 36 hours. Not too bad in the grand scheme of things, but long enough to make me realize it’s important to come up with a plan for future freak power outages like this. Even though the outage was relatively brief and it was cold out, meaning the odds of my insulin going bad were slim, I know that this won’t always be the case (especially in the summertime). So I’m going to put together a rudimentary emergency kit that I can grab and go on a moment’s notice. I’ll include a checklist with this bag that will serve as a reminder to take as much insulin as needed with me in an emergency situation. I’m also going to try to be better about charging my meter and my Dexcom more frequently – I have a habit of waiting until the battery is dangerously low before I recharge either device.

As the saying goes, I’d rather be safe than sorry.