Category: Living

Don’t Say This to a Person with Diabetes

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This blog post was originally published on Hugging the Cactus way back in 2018. I’m sharing it again today because I think it’s important for people to know that they don’t have to feel sorry for me when it comes to my diabetes. Read on to understand why that’s my perspective…

Today’s blog post is going to be short and sweet, and about a subject that I think every person with diabetes deals with whenever they tell someone new about their diabetes.

It doesn’t matter how diabetes comes up in conversation. Whether it’s in a joking, serious, educational, happy, sad, or angry manner, the person I’m talking to almost always says…

“I’m sorry.”

Sometimes, I think it’s because society has instilled this weird reflex in people to apologize for something that they didn’t do. Other times, I think it’s because people just don’t know how else to respond to something that may be sobering or grounded in reality. But the simple fact of the matter is…

People need to stop apologizing to me, and other people with diabetes, for having it.

Here’s why:

  1. It doesn’t make sense.
  2. We weren’t given a choice – it’s a simple truth that we’ve learned to accept.
  3. It makes me feel strange, because it’s almost like the other person is taking accountability for my diabetes.
  4. I believe that human beings apologize too much, in general, and it diminishes apologies when they matter most or are most sincere.
  5. I’m not sorry that I have diabetes, so why should someone else be?

While I genuinely empathize with and appreciate people who apologize as a knee-jerk response, I’m just here to gently tell them that it isn’t necessary. Save “I’m sorry” for times that it’s warranted, and not for something like having diabetes, a matter in which no one has a choice.

Battling ‘Betes

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One thing that I love about Hugging the Cactus is that it encourages me to check out other diabetes bloggers’ content. It may be more difficult to come by these days, as most diabetes content on the Internet can be found on Instagram and TikTok, but I’ll always enjoy the written word format (and can definitely appreciate the time and energy put into a single blog post).

Plus, I’m always struck by how other diabetes bloggers are able to articulate some of the complex emotions around diabetes, in ways that I’ve struggled to do but certainly have been able to relate to.

Take, for example, Renza’s recent post about her personal battle with diabetes.

I won’t do it justice – you should really read the full post here – but in sum, Renza talks about how words that invoke battle are used widely across the diabetes community (think “warrior”, “fighter”, “army”, “challenger”, etc.). We are asked – no, demanded – to wage a war against diabetes in rhetoric all over the place, meaning that we must always fight to maintain “ideal” blood sugars, A1c, time in range, and all the other numbers associated with diabetes. But as Renza puts it, no matter what the metrics may be, diabetes remains. There’s no way to defeat it, which makes militarized language around the matter that much more infuriating and paradoxical. What a massive burden to place on the shoulders of a person living with diabetes, to ask them to fight with all their might against an enemy that can’t literally be defeated…but one that perhaps is open to a resolution of sorts.

To quote directly from Renza’s post, because she said it best:

“To be at war with diabetes is to be at war with myself. I can’t divorce myself from my diabetes – it is me and I am it. We are a tag team, a group package, a two-for-one deal. I don’t get a say in that, and no one else does either, no matter how much they implore me to fight.  

It’s not a battle with diabetes that I need. In fact, it’s the complete opposite. It’s finding peace. That’s what I want to work towards – a peaceful existence that doesn’t add more burden.”

Renza Scibilia

I had never thought about it that way before, but as I continued to read Renza’s post, I marveled more and more over how she was able to put into words a feeling that has gnawed at me for many years now about trying to win a never-ending war against diabetes. Why should I be so focused on winning, when it’s more so about learning to live in a peaceful coexistence with a condition that I know is here to stay (until we get that cure in 5 years, wink wink)? Why just accept that I am fighting an unrelenting fight, when in reality it will take much less of my valuable time and energy to seek harmony with diabetes?

Thank you to Renza for such an honest, insightful, and surprisingly optimistic post that challenges conventional thinking about the “fight” against diabetes.

Girl, Interrupted (by Diabetes)

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A packed conference room. A Dexcom alert due to a low blood sugar. A girl, interrupted as she tries to reconcile what her diabetes demands and what her professional responsibilities required her to do.

A girl, interrupted by diabetes.

Oh hey, I am that girl, and I found myself in this precise scenario when I attended in-office training for my job.

It was just after noon and I was rebounding from a high blood sugar that I’d dealt with earlier in the day. We were going to break for lunch at any moment, and it wasn’t like my blood sugar was tanking – it was holding steady around 65-70 mg/dL. But it was enough to disrupt my concentration on the work presentation and throw me off-guard.

It’d been quite some time – years, honestly – since I found myself dealing with the stress of a low blood sugar in a room filled with people, most of whom I didn’t know. Likely, it hadn’t occurred since I was at my last office job. But it didn’t really matter how long ago or when, precisely, it happened – all I could think about was, how the heck did I manage lows before in workplace meetings that I couldn’t easily excuse myself from?

It might sound like I was overcomplicating matters – I could just get up and excuse myself from the room while I found a snack to treat the low – but one shortcoming that’s followed me about my diabetes and my professional journey is that I like to keep all diabetes matters as low of a priority as possible during the workday. Of course, I take care of myself by making sure I eat regularly and keeping extra supplies on-hand, but I don’t always correct my blood sugar as quickly as I might normally when I’m somewhere else, such as home. I don’t know if it’s my determination to prove to my colleagues that diabetes doesn’t interfere with my workflow or some factor that gets in my way, but I know enough that I’m able to admit that it’s a slight issue for me that I ought to work on.

So when I began to feel the shakes of an oncoming low blood sugar, that was confirmed by a buzzing Dexcom, I found myself toying between two choices: 1) Either I could excuse myself from the conference room and grab a snack, or 2) I could power through, as there was likely 20 minutes or less remaining in the session. As I deliberated, anxiety slowly crept in as I started imagining nightmare scenarios in which I passed out in front of my colleagues. That’s when *ding* the lightbulb went off over my head: I remembered the hard candies I’d pocketed earlier in the day, which I’d intended to be a bit of a post-lunch treat but then realized they’d work great as a smaller-scale low treatment just when I needed it.

I popped one in my mouth and spent the next 15 minutes doing my best to immerse myself back into the training, while also taking a moment to acknowledge that I’d made a mountain out of a molehill in this situation. I don’t need to feel so self-conscious when minor diabetes-related issues happen, whether I’m at work or anywhere else. The most important thing is that I take action in a timely manner, so I can prevent more severely disruptive scenarios from happening.

Feelin’ Odd About my Pod

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I don’t often perform pod changes in public. This is mainly due to the fact that I’m most comfortable changing my pod in my own home, where I have all my supplies readily available…and more importantly, it’s where I feel safe taking off a pod from an old site and putting a fresh one onto a new location.

So you can imagine the level of unease I felt when I had no choice but to change my pod at my office for the first time since starting my new job.

I did this plenty of times at my last office job, but that was always behind the privacy of a closed conference room door that I could lock and that nobody could see into. This level of discretion meant that I could take my time with my pod changes without worrying about someone seeing me and getting the wrong idea about what I was doing (even I can admit that it looks a bit suspicious to see someone in a non-hospital setting drawing an unidentified liquid out of a vial with a syringe).

Both fortunately and unfortunately for me, my new office space is so modern in its design that every single conference room is encased with glass walls and doors – making it all too easy to peer inside each one to determine whether or not it’s occupied. That’s great for off-the-cuff meetings, but not so much for someone who needs just 5 minutes to change an insulin pump site.

Due to the lack of privacy in my office suite, I had to venture out to the main building bathrooms as a next resort. But I wasn’t just going to use any old bathroom. No, I sought out the one that had what I suspected to be the least amount of foot traffic and also the cleanest sink, because I most certainly was not going to lock myself into a stall to ensure more privacy when changing my pod. Absolutely not. Sure, it would mean that I had the stall door blocking me from view, but it also meant I’d have to change my pod without a table in front of me to put my supplies on, and I wasn’t about to do that because it would virtually guarantee that I drop something on the unsanitary bathroom floor – or worst-case scenario, maybe even break my vial of insulin. I wasn’t about to risk that, so I set about changing my pod at the bathroom sink, keeping my fingers and toes crossed the entire time that nobody would walk in while I was at any stage of the process.

My mission was accomplished; a few moments later, I was rocking a brand-new pod and also marveling over how something fairly mundane (because I do it every 72 hours or so) could cause me such anxiety and make me feel self-conscious about needing to do this medically necessary routine in public. I’m not accustomed to feeling odd about my pod and the maintenance actions I take to keep it running smoothly – and to keep myself healthy, to boot – but there’s a solid, highly realistic chance that I’ll have to publicly change my pod again in the future. Hopefully, I can work on it so that changing my pod, whether within the walls of my own home or in the most public of locations, is something that I feel normal about doing, and worry less about whether or not people are judging me over it.

Is it Possible to Decentralize Diabetes?

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First of all…what does that question even mean? What does it mean to decentralize diabetes?

In this context, I think of it as deprioritizing diabetes (maybe that’s the better word to use here, but let’s bear with me…let’s stick with decentralize). It’s knocking it down a few pegs rather than keeping it as a permanent fixture at the top of my to-do list.

So I guess this question should be phrased less generally – because of course it’s possible to decentralize diabetes – and more specifically target me, as an individual who is solely responsible for her diabetes care and management…

…is it possible for me to decentralize diabetes from my life?

I’m of two minds when it comes to landing on an answer. On the one hand, I can’t really imagine myself ever being successful at decentralizing diabetes. I’m always thinking about it. Every decision I make, consciously or subconsciously, is made knowing that it will have implications (in some way or another) on my diabetes. Even when I’m asleep, I can’t escape diabetes because if it’s not directly impacting my slumber by waking me up, then it’s the first thing I think of each day because I do a blood sugar check the moment my eyes are open.

On the other hand…

I’ve been using an Omnipod 5 since late August/early September and although I struggled to adapt to it until recently, it’s since come to represent what feels like a diabetes reprieve. For the first time in my life, I’m thinking of diabetes a teensy-weensy bit less, and I do think that my newfound understanding of the automated insulin delivery system is directly responsible for that. It’s been scary to relinquish control that I’ve maintained for so long over every aspect of my diabetes routine – and hand it over to a piece of technology, to boot – but it’s finally beginning to pay off. Which reiterates the question: Is it really, truly possible for me to decentralize diabetes and let myself be a person first, rather than a diabetic first?

After writing this post and musing further on the subject, I’d comfortably say…it very well could be. With some more time and heaps of patience, I do think I can get to a point where my whole world revolves a little less closely ’round my diabetes.

I’m Proud of my Diabetes Story

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“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

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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

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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

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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

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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.