Well, we’re (somehow) officially one week into National Diabetes Awareness Month (NDAM) 2022 and I’ve got to say…I’m feeling particularly aware this year.
Aware of the sheer scope of people affected by diabetes.
Aware about the amount of work that still needs to be done to defeat diabetes stigma.
Acutely aware that insulin and other necessary diabetes medications and supplies are too expensive and need to be more affordable/accessible to all.
Aware of how all the work (including but not limited to advocacy, peer support, and individual management of the condition itself) is done 24/7, 365 – not just during the span of one month.
You could say this makes me overly aware of the weight and significance of NDAM; and while this is certainly true, it’s also totally accurate that NDAM – and life with diabetes itself – is a marathon, not a sprint.
NDAM/life with diabetes is a marathon that requires proper pacing.
Thank you to a tweet by Mike Durbin that I saw on the first of the month for reminding me of this.
I agree with Mike’s advice to pace myself throughout NDAM, to get involved as I see fit, and to take a break if and when I need it. To an outsider, these words of wisdom may seem obvious, but to someone like me who lives with diabetes, works in diabetes, and immerses herself in the diabetes community, they ring particularly loudly and clearly during this chaotic period that has no shortage of spirit, heart, and good intentions.
So for the next 21 days, I’m excited about plugging away on my marathon’s path, and happy to take breaks here and there for myself so I can cheer on and support everyone else who’s on this journey with me.
“Your estimated wait time is less than 3 hours and 58 minutes.”
The dulcet female voice reported, before the recording transitioned to obnoxious elevator music.
A four-hour wait time? Surely, that couldn’t be true. I decided to stick on the phone for a little while longer in the hopes that a customer support representative would pick up in the next few minutes as opposed to the next few hours.
The elevator music faded and that same female voice said: “Your estimated wait time is less than 4 hours and 16 minutes.”
What the heck?! How did my wait time increase? I pulled my phone away from my ear and looked at it in utter disgust, before deciding I’d hang up because I simply didn’t have the patience to wait any longer – whether or not that meant 4 more minutes or 4 more hours.
Diabetes doesn’t care that I don’t have time to wait for anything that has to do with it.
This is just one example of the many phone calls I have to make in order to get doctors appointments scheduled, supplies reordered, and issues troubleshooted…and some days, I’ve got more resolve to wait than others. This just so happened to be a day where waiting felt unfathomable to me, but like it or not, diabetes doesn’t wait. It’s far more impatient and needy than I am. And this is a side of diabetes that I’m not sure other people really understand – the sheer amount of time it requires to be managed. It doesn’t care that I’d rather spend that time doing literally almost anything else (even cleaning the bathrooms sounds more enjoyable than waiting for 4 hours on the phone). Nope. I don’t have time to not have time when it comes to diabetes, which can be a frustrating truth to tolerate at times.
This blog post was originally published on Hugging the Cactus on October 27, 2021. I’m sharing it again today because it’s all too appropriate for the haunted happenings of today! Read on for my perspective on enjoying Halloween with diabetes…
Now that I’m in my late 20s, Halloween is less about the candy – though I still very much enjoy that part – and more about having fun dressing up, even if it’s just for my own entertainment. But this is also my first Halloween at my condo, so I hope that I get to see a decent number of trick-or-treaters and cool costumes.
Diabetes can’t steal my joy on a day like Halloween!
Thinking about Halloween as an adult got me thinking of Halloween and haunted happenings from my childhood, and I’ve got to say, T1D never once got in the way of my enjoyment of the spooktacular holiday. Sure, there were plenty of other things to do besides trick-or-treat – I watched the Charlie Brown Halloween special (and still do) every year and I almost always make a point of carving a pumpkin or two each October – but collecting (and feasting) on candy was still a key component of Halloween for me that diabetes couldn’t take away. In fact, I think that it helped me feel a little more “normal”, like I had something in common with my peers without diabetes.
I’ve seen posts over the years about treats that T1D kids can be given in lieu of candy – things like pencils, sugar-free sweets, fruits or vegetables, and stickers – and that’s perfectly okay. But I think it’s also totally okay for T1D kids to have a break from worrying about diabetes and how it makes them different from everyone else every now and then, especially on a night like Halloween. I guess what I’m trying to say is that I’m really grateful that I always had super positive experiences around Halloween throughout my childhood that were never tainted by memories of anyone telling me I can’t eat a piece of candy or that I shouldn’t partake in the holiday because of my chronic condition.
So that’s why I’m excited to celebrate it just as I always have this Halloween weekend…though maybe with the added trip to the store the day after to see how much of a discounted low blood sugar/emergency candy stash I can accumulate.
Three years ago, I had the pleasure of reading Stacey Simms’ first book, “The World’s Worst Diabetes Mom”. You can read my review of it here, and read on for my thoughts on her second book, entitled “Still the World’s Worst Diabetes Mom”.
Comfort comes in many forms. Sometimes it means curling up with a blanket, hot beverage, and a good book. That’s just what I did when I read Stacey Simms’ newest book, “Still the World’s Worst Diabetes Mom”. And in reading it, I discovered another form of comfort through her words and experiences as a mom of a person living with type 1 diabetes.
Obviously, I’m not the mother of a child with diabetes, but that doesn’t mean I didn’t find plenty of common ground with Stacey as she shared nuggets of wisdom learned over the years of raising a son with T1D. As she shares strategies and lessons learned in her writing, Stacey’s book feels like the reassuring hand of a friend placed comfortingly – not condescendingly – on your shoulder. She talks to readers, not at them, about everything from diabetes organizational tips to the nuances of raising a teenager learning how to drive with diabetes. In doing so, Stacey gives us honest examples of things that have gone right as well as wrong in her family’s journey with diabetes.
As I read the book, I couldn’t help but appreciate just how many similarities as there were differences in how Stacey and her son, Benny, manage and talk about diabetes. Benny’s about a decade younger than me, so naturally, growing up with diabetes looked a lot different for him than it did for me (talk about technology advances). But even so, Benny and I both started using Dexcom right around the same time – back in 2014 – and Stacey’s anecdotes about pain points of the old G4 system were very familiar to me.
Stacey’s new book, “Still the World’s Worst Diabetes Mom”, is filled with stories that highlight her diabetes philosophy: “not perfect, but safe and happy”.
Another perspective that I know all too well and share with Benny? The fact that I, too, have a sibling who is 3 years older than me (a brother, whereas Benny has a sister) and who does not have diabetes. The chapter of the book that talked about this dynamic resonated particularly strongly with me as Stacey shared a conversation that she had with her daughter Lea about what it was like to grow up with a T1D sibling. Lea shared some insights about how it could be difficult, at times, to be the big sibling who had a little sibling that required extra care and attention from her parents. This section of the book made me wonder how much my older brother might be able to identify with what Lea said about being aware and understanding of Benny’s needs, but also a touch resentful from time to time. It’s a talk that I’d like to have with him one day so I can better understand his experience, and I credit Stacey and Lea for being brave enough to share their discussion so candidly and inspiring me to think about what growing up with diabetes was like for my own sibling.
Equally powerful for me was the chapter on sharing photos of diabetes on social media. This section of the book encouraged people to think twice before posting a photo of a child with diabetes in distress or in the hospital. Stacey was able to navigate the tricky topic in a non-judgmental, though-provoking way that I think will help people be a little more careful and deliberate about what they choose to post about diabetes online.
And my two cents on the matter? I’m about to sound like a dinosaur here, but I’m a child of the 90s, meaning that social media wasn’t a thing – so my parents were definitely not posting about me, much less my diabetes, on the Internet. In fact, whenever I browse through their photo albums (they have a solid dozen plus documenting me and my brother’s youths), I’m hard-pressed to find a single image that indicates that I even have diabetes. There’s one that comes to mind where my blood sugar meter is in the foreground, but the focus was always on me and my experiences as a little kid, period, and not as a little kid with diabetes. And I love that, because for me, it helps me remember a childhood that was very much so not tainted in any way, shape, or form by my diabetes diagnosis – let alone a traumatic, diabetes-related incident that I would’ve preferred my parents kept private rather than posting about it online. After all, my diabetes story is mine to tell, and clearly I’m comfortable doing so now as an adult!
Overall, this book is authentic, empowering, and inspiring – a worthwhile read for people living with diabetes and their caregivers. It’s a reminder that support from loved ones is key in helping people with diabetes learn how to fly, making it that much more special when it’s time to watch them soar – like Benny.
You can pre-order the book here, or purchase it here beginning November 1st. And be sure to check out Stacey’s podcast “Diabetes Connections”, which is available on the Apple, Spotify, and anywhere else you listen to your podcasts.
Disclosure: Stacey personally invited me to review her book. She’s one of the many terrific people I’ve met through my own personal diabetes connections (pun intended). I was not financially compensated to provide this review. It is an unbiased and honest review of a wonderful book written by a wonderful person and I’m happy to help spread the word about its upcoming release!
Blood sugar drops (and spikes, for that matter) are never convenient, per se. They often take my attention away from the moment or experience that I’m in, and it just so happens that there are times when it’s a bigger deal than others.
Case in point? The blood sugar plummet I dealt with in the middle of reactive dog class for my pup.
Let me set the scene: It was a warm October evening in New England – perfect weather for walking a dog around the neighborhood. That’s exactly what my classmates and I were doing: We had about a dozen dogs that were only just outnumbered by humans getting walked in repetitive loops. The challenge was to test the dogs for their reactivity and correct them whenever they tugged too hard on their leashes or got too excited by another dog, person, or squirrel that was also out and about.
The training exercise itself wasn’t difficult; in fact, it was nice to watch the sun go down and chat with the other dog owners in the class while I kept my dog by my side. But what made it a challenge was when all that walking in circles finally caught up with me and my blood sugar and I started to feel an oncoming low.
I was stressed about it, because I was feeling the shaky/dizzy symptoms of a low, but was struggling with finding a good time to correct it. After all, it would’ve been kind of weird for me to randomly start gobbling down some fruit snacks in the middle of a conversation with the other dog owners, and I really wasn’t up for explaining diabetes to everyone and taking attention away from the training. I thought I was in the clear when it was my dog’s turn to be walked by another trainer – my hands were free and I totally could’ve eaten something quickly – but I balked at it because again, I found myself engrossed in conversation as I was given pointers for walking Violet.
In hindsight, I probably should’ve excused myself from the training exercise to sit down and eat my fruit snacks, but I simply wasn’t in the mood for dealing with my stupid diabetes at this point in time. This is the one hour per week that I’ve got with my dog that is solely focused on training her, and I wanted to be present in the moment. But I’ve got to acknowledge that I can only take good care of my dog if I take care of myself first, and I neglected to do that as soon as I should’ve in this situation.
Ah, well. It was what it was, and luckily the low happened towards the end of the class so I was able to eat my fruit snacks in the privacy of my car without having to explain myself to anyone. Next time, I’ll be better prepared with a sugary drink (like Gatorade) that will be much easier to consume without explanation while walking my dog.
I have a confession to make: I’m a bit of a perfectionist. I know that perfectionism can be my own worst enemy and hinder me from accomplishing goals, but it’s just the way I am in some situations – particularly, with my own diabetes.
My diabetes perfectionism means that there is very little room for error when it comes to dosing insulin properly for the foods that I eat. Like many people with diabetes, I strive to bolus as accurately as possible to ensure better blood sugar outcomes, but I don’t always succeed at this.
That’s why I try to reduce the amount of possible error by being very specific about the number of carbs I consume at mealtimes. In fact, I have a self-imposed carbohydrate limit of about 60 grams of carbs per meal. I don’t know where this number came from, and I definitely exceed that from time to time, but for some reason I never input a number greater than 60 carbs into my PDM even when I know I’m probably eating more carbohydrates than that.
This is because of my fear of the room for error, and the potential consequence being a severe hypoglycemic event.
Something I learned by writing this post? My inner perfectionist is at war with my comfort with room for error.
In other words, even when I may be exceeding my “comfort carb count”, I know that the room for error grows with the amount of carbs that I consume. More carbohydrates = more insulin = a greater room for error, something that freaks me out and that I attempt to control by only bolusing for what I feel is an agreeable amount. I’ve written about this phenomenon of mine before and my desire to get over it, but as I continue to work through it, I think it can only be done if I change my thinking about the margin of error that I’m willing to tolerate.
This is where it all comes full circle and I begin to understand how perfectionism, the room for error, and my diabetes management all play off one another…which is to say, they don’t fare well together whatsoever. Because my room for error is low, I don’t dose correctly for some meals, which drives my inner perfectionist crazy because it’s at conflict with my inner scaredy-cat who’s afraid to dose the right amount because I don’t want to deal with any negative outcomes. I’m literally in conflict with myself, which is a wild thing to realize as I write this blog post, but it’s the truth and I’m glad I’m uncovering it.
It will absolutely take time, but as I begin to let go of some of my perfectionist tendencies, I’d like to learn how to also usher in a greater comfortability with the room for error. I’m looking forward to exploring this and hope that I can reconcile the two so me and my diabetes can live in better harmony.
Earlier this year, I wrote a post about my dissatisfaction with my Omnipod DASH PDM’s battery life. Basically, I was frustrated that the dang thing needed to be recharged practically every day. But what bothered me even more was how suddenly the battery life would seem to drop – it would dip from 100% charged to 40% in the matter of a few short hours, and worse, it would do this totally inconsistently so it was nearly impossible to predict when my PDM would need a sudden charge.
I thought my PDM problem would be solved when I got my new Omnipod 5 PDM; however, it persisted. And that’s what indicated to me that there was some type of user error going on that I needed to get to the bottom of before I resigned myself to having to charge my PDM everyday.
So I called customer support and told them about what I was experiencing, and explained that on paper, I was doing all the right things to preserve battery life: using the dedicated charger, using minimal screen brightness, hitting the power button to shut off the screen when it wasn’t in use…I wanted to know, could they offer me any battery-saving tips?
Little did I know that a simple solution to my battery blues was just one phone call away!
That’s when I was informed that disconnecting my PDM from Wi-Fi would be a good starting place; after all, the Wi-Fi connection only comes in handy when uploading my data via Glooko. I was amazed, but the moment the customer support rep said this, it made total sense. This whole time, I’d been connected to my home’s Wi-Fi for essentially no reason because it has nothing to do with how my insulin is delivered (the system uses Bluetooth for all communications). I only ever entered my Wi-Fi information in the PDM because silly me thought it was needed for effective operation, but nope, turns out the only thing it’s good for (besides uploading data, of course) is sucking the life out of my PDM battery.
As soon as I ended the call with customer support, I turned off my PDM’s Wi-Fi settings and charged it to 100%. Nearly 24 hours later, it’s sitting pretty at 80%, a much better battery life than it was displaying previously. Problem solved, and proof that I definitely have more to learn about how to best utilize all aspects of my Omnipod 5 system!
As I approach my 25th diabetes diagnosis anniversary (coming up this Christmas Eve), I marvel over how much I continue to constantly learn about my chronic condition.
You might think that I should be an expert after all this time, but that’s definitely not true. Sure, there are many predictable aspects about diabetes by this stage in the game. I’ve learned how to read my body’s signals. I’ve got a good grip on the mundane parts of diabetes management (e.g., changing my sites, reacting and treating various blood sugar levels, exercising with diabetes without wild blood sugar oscillations, and so forth). I know quite a bit about diabetes technology, even the kinds that I’ve never used before (and I attribute much of this knowledge to my friends and coworkers with diabetes, as well as the fact that I have an inside scoop on a lot of this stuff because I work in the diabetes sector).
But this doesn’t mean I’ve learned all there is to know about diabetes, the terminology that defines it, the research that is being conducted about it, or the innovations that are consistently occurring when it comes to technologies and therapies.
Little “cartoon me” likes to learn best with a book in one hand and coffee in another – hmm, maybe ACTUAL me should adopt this strategy!
A good example of this? I heard the acronym “FNIR” for the first time the other day when I was at work. A clinician was breaking it down as standing for “flat, narrow, and in range”, which is a pattern that can be visible on a CGM device that indicates tight control over blood sugar levels. My mind was kind of blown when I heard this; while the concept itself isn’t revolutionary, I had no idea that doctors had actually defined the phenomenon. This might seem like an insignificant example about learning something new; but on the contrary, it’s major to me because it’s something I hope to achieve on a daily basis (literally) – I just didn’t have the words myself for it. Now that I know it, I’d like to be able to use it during my upcoming endocrinology appointment as a tool to describe to my doctor that I want her help getting an FNIR graph more often.
Constantly learning can be tiresome at times, but it just goes to show that it’s good for me because all roads point down a better understanding of my diabetes – something that I will always want and always shoot for.
I was supposed to spend the first weekend of October camping (and merrily attending the local renaissance fair), but Mother Nature had different plans for me and my crew.
The first night went without a hitch – we’d arrived at our campsite early in the evening and had just enough time to set up our tent before darkness fell. By that time, we were able to get a campfire roaring and cook up some dinner that we enjoyed with beer. After plenty of conversation and laughs, everyone settled in their respective tents for the night and we let the sounds of the great outdoors lull us all to sleep.
The next morning was drastically different as the sound that woke me was the furious pounding of rain against our tent roof.
I wasn’t worried, though – surely the rain wouldn’t deter us from going to the fair. Maybe we’d drive there instead of walking there as we originally planned, but no big deal. I’d be gobbling up a giant turkey leg in no time!
Our campsite on night 1, looking deceptively idyllic.
But I was wrong. As I slowly grew more awake and alert, I decided to check the weather forecast as well as fair hours on my phone. The moment I saw that 1) rain was forecasted to fall at a ferocious pace all day long, and 2) the fair had announced on their website that they’d be closed for the day in order to better protect their employees from the remnants of Hurricane Ian that were striking the south shore of my state.
I couldn’t help but laugh. I nudged my partner (who was still somehow slumbering despite the deafening sound of the rain) and told him what was going on. We figured our options were either stick around and make the most of camping in the rain, and try to get to the fair the next day, or cut our losses by packing up and heading home. After a quick consultation with the rest of our group, it was clear that the latter option was more favorable to all.
So instead of frolicking around the fair in my carefully curated garb on Saturday morning, I was donning a giant red poncho as I helped disassemble our campsite in pouring rain. As I did what I could to shield our belongings from getting completely wet, I couldn’t help but think that this camping trip was becoming a bit of a metaphor for diabetes. In life with diabetes, I spend so much time planning for any case scenario to crop up at any time. And yet, diabetes still manages to throw curveballs in my way that require me to adapt quickly. Diabetes doesn’t care about how much preparation I put into something or that it’s an inconvenient time for it to start acting up – that’s just the nature of diabetes, and…well, the nature of this trip (literally and figuratively).
Ultimately, we regrouped from our change in plans by getting everything packed up in just under an hour, then heading over to IHOP to at least have a hot meal in a dry location together before we all left for home. And even though we would’ve preferred to spend our day at the fair, I’ve got to say, pancakes do help make many situations better – including this one.
Yesterday, October 4, 2022, marked this blog’s fifth birthday.
How wild – five whole years of writing on this blog, connecting with the diabetes community at large, and gaining invaluable insights from fellow people living with diabetes.
Proudly donning my cactus cap and diabetes devices.
It’s a humbling experience. Any time someone tells me that they’ve read my blog, I’m truly honored that they’ve taken the time to check out my little passion project. And when someone visiting this site turns into a neat opportunity, such as appearing on a podcast, I’m beyond thrilled and appreciative that I get to use other media to reach out to our community.
When I think about where I was five years ago, I marvel over how much has changed not just for me, but for the world. We’ve experienced a global pandemic. We’ve undergone times of enormous celebration, as well as those of great contention. It’s kind of an imperfect metaphor for what it’s like to live with diabetes – it’s filled with ups and downs, triumphs and tribulation – and it takes strength, determination, and resilience to get through it all.
My plan today is to quietly celebrate that, as I reflect on my blog’s birthday as well as the true privilege I have to be able to work professionally within the diabetes space. I am proud of Hugging the Cactus. I am proud of the nonprofit I work for, which has recently experienced its own rebirth into The Diabetes Link. I am proud of all the people with diabetes in my life who live courageously and healthily with diabetes.
And I’m proud of myself for my blog’s milestone, as well as my nearly 25 years of life with diabetes.
Hugging the Cactus 