I’m Proud of my Diabetes Story

“Pride” isn’t exactly the first word that comes to mind when I think of my diabetes. In fact, a whole slew of other nouns and verbs top my list of words that I associate with diabetes, including but not limited to: strength, resilience, acceptance, guilt, anger, worry, identity…

But I’m not writing this post to focus on those other words – pride is the one I want to talk about here, and I want to explain why I’m proud of my diabetes story.

You can’t tell that the little girl (me about 23 or 24 years ago) in this picture has type 1 diabetes. The only clue, perhaps, is the Diet Coke can you can just barely see.

Diabetes has always been part of my life; actually, from the moment I was born. This is because I have family members who live with type 1 diabetes, just like me. I don’t really remember what life was like before my own diagnosis, and I’m grateful for that because I never felt like it made a dramatic disruption (well, besides for making its presence known within my body on Christmas Eve, but I was four years old at the time and the holidays were definitely never soiled for me because of diabetes).

As I reflect on what it was like to grow up with diabetes, I also find myself appreciative of the fact that I’m hard-pressed to find any actual evidence of it besides doctors’ records. I’ve flipped through my parents’ photo albums countless times over the years and there’s not one photograph of me laying in a hospital bed, injecting myself with insulin, or showing any signs of diabetes except for maybe the stray Diet Coke can or blood sugar meter in the background of a picture. That’s just further proof that my diabetes was never the focus, it was more so about me living and experiencing a totally normal, loving childhood.

All that makes my sudden entrée into the diabetes community, beginning in my young adulthood, that much more surprising. The transition from living under my parents’ roof to suddenly being on my own in college was, in a word, jarring – so peer support was crucial for me in order to navigate this change successfully. It didn’t happen overnight, I had heaps of help along the way, and it was far from easy, but in my mind I’ve done a good job of handling my diabetes and all the responsibilities that come with adulthood in the last decade.

And that’s what I’m proud of. I’m proud of myself for getting to this part in my journey, the part where I feel well-equipped to live a life uninhibited by my diabetes. I’m proud that I’m able to talk about my diabetes experience with a sense of confidence and capability. I’m proud that I’ve learned how to advocate for myself in various settings, whether it’s with my healthcare team or in the workplace. And I’m definitely proud of myself for the way I talk about my diabetes story: It contains chapters that are unfiltered and authentic to me, and I think that they illustrate how I came to accept my diabetes long ago and use it as a source of courage in my daily life.

I hope that other people with diabetes can also find a similar sense of pride in their own experiences with this chronic condition.

The Inconvenience of Low Blood Sugar

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.

Camping: A Metaphor for Diabetes

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.

The Numbers of My Diabetes

I studied English in college and I’ve built a career around writing and editing; plus, I run this blog…so I’d say it’s a little more than obvious that I am a words person.

What might be less obvious is that I am not a numbers person

And yet, I was bestowed with a diabetes diagnosis early in life, so that’s forced me to become a numbers person.

Very reluctantly.

Numbers…the necessary bane of my existence.

Of course I’ve got a chronic condition that is centered around math – so much damn math. It’s a lot better now, with technology advancements, than it used to be back in the day. I definitely don’t miss having to take a calculator out at mealtimes to add up all my carbohydrates and then dividing that number by my insulin-to-carb ratio.

But still, there’s plenty of subtle calculations that I must perform on a daily basis. These include:

  • Number of hours it’s been since my last bolus
  • Number of days I have left on a CGM sensor or pod
  • Number of units of insulin I should fill my pods with
  • Number of carbs I need to consume to fix a low blood sugar
  • Number of carbs in every meal I consume (yes, I still have to figure this out on my own – I can’t wait ’til technology can do this for me)
  • Number of supplies I have left
  • Number of visits to the doctor each year
  • Number of dollar bills I spend on supplies
  • Number of hours, minutes, and seconds I spare thinking about the next diabetes decision I have to make
  • Number of blog posts I’ve written about diabetes (this happens to be post #706 on this blog alone…wow!)

Those are just some examples of the mathematics behind diabetes. Some are basic numbers and data points, whereas others are based upon true arithmetic or equations. Nonetheless, what they all have in common is that amount of space they take up in my mind, which is to say…it’s a lot.

No wonder I’m not overly fond of anything pertaining to numerals.

4 Ways Diabetes Motivates Me

This blog post was originally published on Hugging the Cactus on March 19, 2021. I’m sharing it again today because it’s important for me to remember that on the days when diabetes feels so utterly defeating, it can also be incredibly motivating. Read on to learn how…

Life with diabetes can be inconvenient, unpredictable, and downright frustrating. But it’s not all bad. In fact, after living with it for more than 23 years now, I’ve actually identified a few different ways in which it helps motivate me. And what, exactly, are those ways? Well…

#1: It’s constantly challenging me to strive for the better: Better “control” over my blood sugar levels, better management of my diet and exercise regimen, and better care of my entire body, in general. While it involves a lot of work, it’s extremely motivating because I know that anything I do for the better of my diabetes and my body now will pay dividends in the future.

#2: Diabetes encourages me to ask questions. I think that my diabetes is the reason why I’ve learned to be curious. It pushes me to want to know the who, what, when, where, why, and how of various scenarios, both relating to and not relating to diabetes. It’s natural for human beings to be inquisitive, but they don’t always do something to pursue answers to questions. My diabetes pushes me to do that, with varying degrees of success, and that’s something I’m grateful for.

Today on the blog: Find out how I get motivation from my #diabetes in my new post - visit #HuggingTheCactus to read it. #t1d #type1diabetes #diablog
How does diabetes motivate you?

#3: It pushes me to prove people wrong. There’s so much stigma surrounding diabetes…”You can’t eat that! You can’t do this! You can’t do that!” are exclamations that I’ve heard my entire life from different people. Rather than nodding and smiling politely at these poor, misinformed individuals, I strive to show them exactly why they’re wrong. Whether it’s explaining the facts or going out and doing the very thing they said I wouldn’t be able to do because of diabetes, it’s empowering for me to smash down diabetes misconceptions.

#4: Diabetes inspires me to seek more out of life. This goes hand-in-hand with point number 3, but it counts as a separate notion because this is all about how I view my life with diabetes. I didn’t fully accept my diabetes until I was a teenager. That acceptance represented a turning point for me during which I realized that just because I was dealt this card in life, it doesn’t mean that it should stop me from accomplishing my hopes and dreams. Over the years, my diabetes has made me want more: opportunities, experiences, relationships…you name it and I’m hungry for it.

Sure, diabetes can be my biggest headache…but it can also be my greatest motivator, and I think it’s important for me to embrace the beauty of that.

What Went Wrong (and Right) with Diabetes on Vacation

Ahh, vacation…what’s that, again?

After the insanity of the entire month of August (I’ve had LOTS going on professionally and personal), I can’t believe that I actually escape for a full week earlier in the month. But I did, and I’m so very thankful that I had the opportunity to soak up some sun with my boyfriend and dog at the vacation spot I’ve visited annually most of my life.

Of course, they weren’t my only travel companions – my diabetes tagged along too, just as it always does (oh, if only I could do something about that). And my diabetes proved to me, once again, that it dislikes disruptions to my daily routine.

Me with one of my travel companions after a beachside stroll…peep the Dexcom!

In fact, that dislike manifested itself into several things that just straight-up went wrong with my diabetes on vacation:

  • Rollercoaster blood sugars: My blood sugar crashed 3x on the morning of our road trip to our vacation destination – THREE TIMES before we even got there! It got me worried that consistent lows would be a theme throughout the week, but naturally, it was actually highs that turned out to be more of a problem. My diet and exercise routine were wayyy out of whack from my norm, and I had trouble getting accurate carb counts for some of my meals (particularly dinners that we ate out at restaurants). I did my best to combat highs by walking EVERYWHERE – thank goodness that was an option for our plans most days – but I was still frustrated that I wasn’t experiencing as many flat lines as I would’ve liked on my CGM graph.
  • A pod failure: Our first full beach day was marred by a pod that failed, seemingly the instant that I dipped my toes into the Atlantic ocean. The roar of the waves almost drowned out the shrill beep emitting from my pod, but once I was back ashore there was no mistaking that something (a bent cannula? The freezing cold water? Some other mysterious variable?) had triggered the pod to fail. And as my luck would have it, I didn’t bring a new pod or insulin to the beach with me, so I decided to wait until we walked back to our house to actually do something about it. Under normal circumstances, I’d never delay replacing my pod, but since I knew we’d be walking back home soon I figured it’d be okay to wait.
  • A sensor failure: Our second and sadly last full beach day couldn’t be enjoyed without another diabetes disruption – this time, it was my sensor that failed, and only after we’d been on the beach for about an hour! While this matter wasn’t as urgent, it was still annoying, because I didn’t have my meter with me (ugh, I know, I sound like a total diabetes rookie here). I chose not to worry about it and make the most of our beach day, and rely on my body’s signals to let me know if I was going low.

Sounds like I had my fair share of diabetes drama on vacation, right? I can’t deny that these instances were varying degrees of frustrating, but also, I’d be remiss if I didn’t also consider all the things that went right while we were away:

  • I didn’t forget to pack any of my diabetes supplies for the trip! While I may not have had certain things (see reference to meter, pod, and insulin above) on me at all times, I did always have back-ups at the house, and remembered to carry low snacks with me no matter what.
  • Despite delaying a pod replacement for my failed pod, my blood sugar was totally fine! I didn’t spike from that whatsoever.
  • Even though I didn’t have a working CGM for 4-5 hours on my last beach day, I wound up having a stellar blood sugar when I checked it with my meter once I was at the house. I was 81! I attribute that to staying hydrated and getting exercise on the beach, as my boyfriend and I had played volleyball with a couple of other beachgoers for a solid 45 minutes.
  • I was able to walk just about everywhere, which was a massive help to both my mindset and my blood sugars. Turns out, walking approximately 50 miles total over the course of one week is a really good thing for a person with diabetes on vacation.
  • My travel partner was incredibly mindful and considerate of my diabetes needs over vacation. Whether that meant walking with me at 10 P.M. at night to fight a stubborn high, or splitting a super carb-y meal at a restaurant so it would be easier for me to bolus, he made the entire trip so much better by being a thought partner with me when it came to taking the best possible care of my diabetes.
  • Also, not especially diabetes-related, but a personal milestone unlocked: I didn’t get sunburnt at all from this trip. Dare I say that I’m actually TAN now?! (And by tan, I just mean that my pale skin is speckled with a few more freckles now, given me the illusion of being tan. I’ll take it.)

So yeah, I could choose to dwell on the things that went wrong with diabetes while I was away…but then when I think about what went right and take a look at that list above, they absolutely outweigh the snafus. Diabetes tested me over the course of this trip, but it certainly didn’t ruin it, and I’m still very much so looking forward to the next time I can get away for another week.

A Serendipitous T1D Encounter

Sometimes, when you’re in the most random of places, surrounded by a couple of people you know but mostly strangers, but the vibe is juuuuuust right and you feel perfectly at home?

That kinda describes how I felt at…an arcade bar, of all places, on a Saturday night outing earlier this month.

I was at the local arcade bar with my boyfriend and a bunch of our friends. I always have a blast when we go there, and this particular evening was no exception. But what made it extra special was what happened when I was playing pinball.

I don’t have a picture from this particular evening, and YES I know that Galaga isn’t pinball…but it IS my favorite arcade game, and this picture also features a sunburn around an old Dexcom site…so it works well enough for this post.

I was using arguably the best pinball machine on the property (the Lord of the Rings themed one), and my favorite band from my teenage years (okay, and admittedly probably my favorite band of all time…My Chemical Romance) was blaring on the speakers. I was on cloud 9 from that alone, but then this happened: The person playing Pirates of the Caribbean pinball next to me (another excellent choice), nonchalantly said to me, “I miss my Omnipod…my insurance won’t cover it for me anymore.”

I glanced sideways at him, not wanting to lose track of my silver pinball but also wanting to show my interest in the conversation. I nodded empathetically, and said something about how insurance matters can make things so difficult. He agreed, before quickly showing me his “ancient Medtronic pump”, deftly maneuvering it from his pocket so the tubing wouldn’t get tangled around anything. I smiled and we both returned our attention back to our respective games, which we went on to play in a companionable silence.

It was totally random, not at all expected, but a sweet and subtle reminder that I’m not alone, even in places where it seems like diabetes is the last thing on anyone’s mind except mine. I hope this guy felt the same way…a little positive reassurance that we’re all in this together and doing a really great job of living well with diabetes.

People with Diabetes Are Good at Minimizing

A version of this blog post was originally published on Hugging the Cactus a couple of years ago. I’ve updated it and am sharing it again today because it still rings true – I’m good at minimizing my diabetes. Multiple aspects of it, in fact. Read on for more…

I was just sitting here, minding my own business when I got to thinking about how good people with diabetes tend to be at minimizing.

I speak for myself, and some other people with diabetes I know, when I say that we’re really good at making it seem like it’s not a big deal. We manage a 24/7, 365 chronic condition like it’s not the full-time job that it is. I have family and friends who occasionally pick up on this and marvel at my ability to be present in a myriad of social situations while discreetly watching my blood sugar levels or calculating insulin dosages. I rarely act like diabetes is as serious as it is and that’s because I’ve become an expert at making it seem like small potatoes in my life. And I’m not just good at minimizing my diabetes – I’m also highly proficient in minimizing the fact that it has forced me to make difficult decisions in my life, particularly when it comes to financial choices.

Over the years, I’ve become excellent at downplaying the impact of diabetes on many aspects of my life.

I’ve conversed with plenty of other people with diabetes about whether or not we, as individuals, have struggled to afford insulin. Most have been pretty lucky and have never really had to resort to making truly difficult choices when it comes to affording insulin or other diabetes supplies.But just because I’m able to afford insulin, that doesn’t mean that I haven’t had to make certain choices that I might not have had to make if I didn’t have diabetes.For example, when it comes to my career, I’d never consider a job that doesn’t offer solid health insurance plans. Even if my strongest desire was to be a freelance writer, I wouldn’t go through with it because I know that it would be challenging to figure out my health insurance. And I know that the minute I run out of FSA dollars each year, I start thinking about setting money aside just to cover the costs of my diabetes supplies…which means that instead of buying some new clothes or planning a weekend getaway, I sometimes have to sacrifice those luxuries in favor of ensuring I have enough money to cover my fixed expenses as well as my diabetes medications.When I think about it, of course I realize that it’s not fair, but haven’t really considered it before because this is just how it is. I’m used to it. And so are many other people. We’re all accustomed to having to make certain choices about our lifestyles or spending habits that minimize the larger issue of insulin affordability. We’re used to it, even accepting of it, but that doesn’t make it right and it certainly underscores the terrifying fact that too many people simply can’t afford insulin and have to make much tougher decisions in order to get it.It’s time to become a little less good about minimizing and better at vocalizing – not just the seriousness of diabetes, but also the dire nature of insulin affordability and access that affects millions around the world.

Swimming Into a Pod Failure

The latter half of July in New England has been hot, hot, hot this year. It’s almost pleasant compared to last year’s rainy summer months, but let’s emphasize “almost” in that sentiment.

Fortunately, something that makes the heat a bit more bearable is the fact that the condo complex that I live at has a pool! And what’s even better is that it’s pretty easy to find slots of time on the weekends to hang out by it and enjoy it undisturbed by other community members. Case in point? My boyfriend and I found an hour on a scorching Sunday evening to take a dip before grilling some chicken and veggies for dinner.

We had only just entered the pool up to our waists when a familiar screeching sound blared in our ears. Yup…my pod had just failed.

My community pool! Not pictured? My wailing pod!

Rather than get cranky about it, though, I just shrugged and figured it was no big deal, I had to change it in the next few hours, anyways. I was about to rip it off my abdomen when my boyfriend pointed out that the moment I submerged myself more fully in the water, then I wouldn’t hear the screaming pod anymore. Sure enough, he was right – I could only hear the shrill sound when I was underwater, making for an interesting soundtrack whenever I swam under the water’s surface.

We swam and chatted for about an hour before deciding that I probably shouldn’t procrastinate any longer when it came to putting on a new pod. So we dried off and headed inside, and discovered that my blood sugar had lingered in the low 100s the entire time. That was a welcome sight to see – my assumption is that I’d had enough insulin on board from earlier in the day that coupled with the exercise I got from swimming to prevent any sort of blood sugar bump.

So even though I literally swam right into a pod failure, it worked out in a funny way. It’s nice to know that pod failures don’t always have to be a total nuisance.

It’s No Big Deal

“Does it hurt?”

“Wait, no, I’m not ready!”

“I’m LITERALLY afraid that I’m going to hurt you!!!”

These are all phrases uttered by my dear friend who was ultra-curious about the site change I had to do in the middle of our hangout. She wanted to watch me do it, but I stepped it up a notch by asking her to play a key role in it: I invited her to remove my old pod from my leg.

A routine pod change is no big deal to me.

“Just do it, it’s just like ripping off a band-aid. I can guarantee you won’t hurt me.” I said, in an attempt to reassure her. I also swore I wasn’t lying just to make her feel better, because I’ve rarely ever experienced a pod-rip-off that truly hurt.

“But there’s something in you, right? Like a needle?” Her face creased with worry. I smiled and told her that yes, there was a cannula that was in my skin, but I couldn’t feel it.

“Let me start it for you,” I said, when I realized she still wasn’t quite ready to rip it away. I peeled up an edge of the adhesive and she started squirming.

“You don’t have to do it if you don’t want to -” I said, but just as the words left my mouth, she finally tore off the pod. Much to my chagrin, a drop of blood appeared and she squealed as I began to apologize profusely and explain emphatically that it didn’t hurt, it’s just that sometimes blood will appear and nothing can be done about it.

“I can’t believe you have to do this every 3 days…” she said, her eyes widening in wonder. I told her I’ve done it so many times now – literally just over a thousand, according to my calculations – that it’s no big deal. I’m used to it. It’s just life with diabetes…lots of repetition and more math than I’d like.

I accepted my reality a long time ago, and I’m truly at a place where it’s no big deal.