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 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.
In my humble opinion (and experience), the best kind of diabetes conversation happens when it’s least expected among a group of people who are willing to listen and learn about it.
I was fortunate enough to have this exact type of conversation with my newly formed volleyball team after our first match of the season. (Side note that until then, I’d never played volleyball in my entire life. I was a ball of nerves the whole time, but I think that joining the league will have a positive impact on my mental health, social life, and diabetes, so I’m excited to see where the season takes me.) We were gathered around the table in a bar, enjoying a pitcher of beer and learning more about one another, when diabetes entered the conversation – as it almost always does, eventually, when I meet new people.
We probably spent less than 10 minutes on the subject of diabetes, but the whole time we did talk about, I felt extremely thankful to be surrounded by people who asked thoughtful questions, demonstrated curiosity to learn more, and made a pointed effort to ensure my comfort throughout the whole conversation. The energy that the group was emitting made me feel good as I shared my experiences and showed them my Dexcom and Omnipod devices, the latter of which isn’t always easy to do around new people because I can be a little self-conscious of how they appear on my body. But it felt natural to be open and upfront about all things diabetes, as I’ve experienced it, because everyone genuinely cared to learn more.
That’s what made it such a lovely conversation; in turn, it will also serve as a great reminder to me that telling new people about diabetes doesn’t always have to be an intimidating or stressful ordeal.
Pre-bolusing: It’s the term that describes taking insulin before eating food. The “before” part in the definition is key, because the amount of time that “before” is can and will vary among people with diabetes. It depends on a few factors, including the amount and type of insulin being used, the amount and type of food to be consumed, current blood sugar levels, and so forth.
It’s one of those things that’s tricky to nail the timing of, but boy, when it works it’s so worth it.
I have two examples to complement that belief, one in which pre-bolusing almost lead to a disastrous outcome and the other in which everything turned out ideally. I’ll start with the more chaotic scenario first.
In this situation, my boyfriend and I spent the night in New Hampshire to attend a friends’ wedding and had a pretty late night, which meant we slept in a little later than we had intended the next day…actually, a lot later. We only had about 20 minutes to race around our room, pack up our belongings, and get ourselves looking presentable before we had to check out of the hotel. Luckily, our scrambling paid off and we made it out in time, but sleeping in cost us the opportunity to enjoy a complimentary hotel breakfast. We decided that it made sense to stop for brunch on our drive back home to Massachusetts, so we Googled a diner that was on our route home and stopped there for a meal.
When we got there, the restaurant was pretty crowded, but we were seated and able to place our brunch orders almost immediately – a good sign. I assumed this meant we wouldn’t have to wait more than 20 minutes or so (that feels like a restaurant standard) for our food to be ready, so I went ahead and pre-bolused my mealtime insulin. After all, I’d ordered a hearty omelet that would come with breakfast potatoes and toast, so I wanted to be proactive about avoiding high blood sugar and get my insulin in system sooner rather than later.
Unfortunately for me, our food ended up coming out later rather than sooner. In fact, we waited nearly 45 minutes for our dishes to finally come out. In that period of waiting, I was getting more and more anxious about my decision to pre-bolus with each minute that passed without food in front of me. By the 30-minute mark, I was close to full-on panic. Even though my Dexcom wasn’t indicating that my blood sugar was low (it held out steady the whole time), I was worried that the system delay in reporting my blood sugars would fail to catch a serious low in a timely manner. I told my boyfriend what was going on, and without hesitating he went to his car to grab some packs of honey that he’d stored in his glove compartment in case of emergency. We talked it over, and decided that it was probably best for me to consume at least one pack of honey because we couldn’t possibly know when our food was going to come out, and at this rate, we wanted to play it safe rather than be sorry. That didn’t exactly lessen the sorrow and stupidity that I felt for taking a pre-bolus (even though I couldn’t have possibly known that our food would be so delayed, I still felt badly about the whole thing), but it was what it was. And ultimately, I felt like I paid the price several hours later, when I was dealing with the very same high blood sugars that I’d hoped my pre-bolus would prevent. So much for making the pre-bolus grade that time…
But that doesn’t mean pre-bolusing always fails! This brings me to my other example. My mom and I had a nice lunch together last week. Before we left to go to the restaurant, I noticed my blood sugar was a little high. I decided to give myself a correction dose, plus one extra unit of insulin, because I knew we’d be eating foods that aren’t typical for me to consume at lunchtime that could result in highs later in the day. So again, I was aiming to be proactive and prevent prolonged high blood sugar.
And this time, the strategy worked great! At the restaurant, I stacked that pre-bolus with my actual meal bolus (not always a recommended tactic, but it was useful here) and rounded out my afternoon with a blood sugar in the 120s – a win in my book. Thanks to my pre-bolus, I didn’t experience any pesky blood sugar spikes and still landed in range, which in turn showcases the power of the pre-bolus perfectly.
So just like anything in life with diabetes, when pre-bolusing works, it’s wonderful…but it definitely requires a little finesse to learn exactly when/how/where to use it.
A woman enrolled in the self-defense class that I took this month approached me, remarking on our shared condition, with a knowing look on her face. She glanced down at my pod, which I had marked with red duct tape to signal to others that this area of my body couldn’t engage in some of the movements that we’d be asked to do.
I smiled widely at her and we launched into a brief, but friendly and supportive conversation about diabetes in which we covered everything from devices to years lived with diabetes. We spoke for a few minutes before we wished one another well and parted ways.
Diabetes in the wild encounters are always interesting because they either spark instant camaraderie or, on the complete flipside, a flurry of ignorant questions/comments that prove to me just how much diabetes stigma is still alive.
Encounters like this one, fortunately, fall in the former category.
It’s just nice to know sometimes that I’m not alone, even in the most random of circumstances. That I don’t have to explain myself, or the nature of my fragile pod, to a person who actually understands why it needed to be protected. That I have someone who totally gets why I was in a panic the week before when I didn’t have a functioning CGM or my meter as a back-up when my blood sugar went low.
It’s a form of support that might not last more than 5 minutes or so, but still has a meaningful impact on me and my diabetes.
This blog post was originally published on June 12, 2019 on Hugging the Cactus. I’m sharing it again today because when you live with T1D, it’s inevitable that you’ll attract stares – and sometimes questions you’d rather not answer – from people who are befuddled by your diabetes gadgets and gizmos. This one encounter in particular is a great reminder that not all oglers have ill intent…read on for more.
“Yo, I don’t mean to be rude, but what’s that thing on your arm? Looks pretty cool.”
I turned around to face the stranger who was looking at me and asking me this question. It was well after midnight and we were on the rooftop of a fairly crowded bar. It was a balmy, summery night and I was enjoying the atmosphere with my boyfriend and my best friend. I’d had a few drinks over the course of the night, but judging by the state of everyone else on the rooftop, I was probably more sober than most of them.
I could’ve answered his question in a scolding manner; it wasn’t a “thing”, it was a device that keeps me alive.
I could’ve totally dismissed him and told him to mind his own beeswax, because really, it is sort of rude to point out something on another person’s body.
I could’ve lied and told him it was something that it’s not to get him to stop bothering me.
I could’ve launched into an educational breakdown of what an insulin pump is and why my OmniPod looks the way it does.
I could’ve done any number of things, but instead I decided to say, “Oh, this is my insulin pump. I’ve got it decorated right now with a picture of a lighthouse because I like adding some style to it.” I smiled at him as a way of reassuring him that I really didn’t care that he was asking me, because I didn’t.
My straightforward answer seemed to please this random man. He told me again that he thought it was cool, and then we chatted a bit about where the lighthouse is and discovered we both have a connection to Massachusetts. Within a few brief moments, the conversation was over as we went our separate ways.
It was a perfectly harmless interaction that could’ve went a number of different ways, but to me, it’s all about context. This guy was just asking out of curiosity, and I truly don’t think he was trying to be rude about it. So I answered his question succinctly but good-naturedly, because I felt that was the only way to go about it in this busy party environment. Plus, let’s be real here…had I delved into a discussion about diabetes and devices, this drunk man probably wouldn’t have digested a single detail of my description. (Ahh, I love alliteration.) And another important point? He was damn right, my pump did look cool because of the lighthouse sticker!
But man, how much simpler it’d’ve been if I’d just been wearing my “THIS IS MY INSULIN PUMP” sticker on my pod that night.
“Diabetes in the wild” is a phrase I first learned about several years ago from, of course, the diabetes online community.
The phrase refers to those moments when you’re out in public and suddenly, randomly, you happen to spy another person with diabetes. Perhaps their pump site gives them away, or maybe they’re doing a fingerstick check. The person could have a diabetes tattoo, or they might be doing an injection. Whatever the scenario may be, these moments can be kind of exciting because they often trigger me to think, hey, there’s someone just like me right over there – it’s like that instant knowing that this person knows better than anyone else what daily life with diabetes is like that results in an inexplicable comfort, that feeling of realizing you’re never alone. And it’s truly a powerful feeling.
More often than not, these diabetes in the wild moments also come with some level of interaction with the other person. Maybe I’ll toss a compliment their way (nice Omnipod!) or the other person might ask me a question about my diabetes devices, because they’re curious about them and considering whether or not they should try it. These interactions are almost always super polite and the awkwardness is minimal…
…but naturally, there are times when diabetes in the wild moments are not so nice and just plain weird.
Here’s the story behind my most recent, bizarre, and mildly uncomfortable diabetes in the wild experience.
I was at the grocery store on my lunch break, taking great care to somewhat hustle up and down the aisles because I had a short window of time in which to complete my shopping. The store was pretty empty and for the most part, I was able to go from aisle to aisle without bumping into other people.
Until John and Jane (not their real names, I actually have no clue what their names are) appeared.
John and Jane were what I like to call…spatially unaware. They had zero regard for my personal space and apparently, no manners, which I deduced from the fact that I had to move my cart and my body so close to the shelves of one aisle that I was practically touching the shelves in order to make way for them as they trod down the aisle in a wide berth as opposed to walking down single-file (like I would’ve done had I been with another person).
I was mildly annoyed, but it definitely wasn’t a big deal. I continued shopping and was dimly aware of the fact that John and Jane were going down a haphazard path, ignoring the arrows on the floors of the grocery store that indicated how to navigate up and down the aisles.
As I made my way to the next aisle, I realized that they were approaching me again, and even though we were the only three people in the aisle, they got extremely close. This time I was absolutely annoyed. I couldn’t understand why they felt the need to encroach on my personal bubble like that, but it got worse when I heard Jane say to John, directly behind my back, “Look, that’s a Dexcom like Stevie wears.”
I could feel my cheeks redden as two pairs of eyes ogled at the Dexcom sensor that I was wearing on my arm. I froze, wondering if I should acknowledge the comment, but before I could do so they were both wandering away.
The incident left me confused and a little angry. I couldn’t understand why they felt the need to discuss my Dexcom right within earshot of me – really, they literally talked behind my back. They could’ve waited until they were further away from me to talk about it if they wanted to, when I couldn’t overhear them and feel uncomfortable by the whole exchange, which left me feeling like I was a caged animal at the zoo. I can’t remember a time when people had so openly stared at my Dexcom like that, and it’s a weird feeling…and it’s one thing to stare, and a whole separate issue to comment on it without addressing me directly.
I don’t know, maybe I was being overly sensitive about the whole thing, but I can’t help how it made me feel. It would’ve been a much different story had they maybe talked to me about it – I can imagine spending a couple minutes talking with them about their little Stevie and ending the exchange by telling them to take care or sharing some other pleasantry. Who knows how it could’ve been different. But one thing it taught me is that diabetes in the wild moments, as fun as they can be for me, they can also be not so great for others. I’d hate to think that I ever made anyone else feel awkward or strange about their diabetes because I called them out on it.
I think that context is key when it comes to experiencing diabetes in the wild…sometimes it’ll be totally appropriate to talk about it in public, other times not so much. We all just have to be a little more careful about determining the right contexts.
You know that feeling you get in the pit of your stomach when you receive bad news? It’s like your heart falls to the floor and your stomach starts swirling from the perceived sensation.
That’s unpleasant enough on its own, but for me, it can also cause blood sugar issues.
The same thing can be said for when I’m on a literal roller coaster (which doesn’t happen often, but when it does, involves extreme coercion from family or friends) – I get that awful swooping sensation on top of some sort of blood sugar impact.
Whether it’s anxiety, adrenaline, fear, or just a rush of unidentifiable feelings, there’s no doubt about it: Extreme emotions tend to make my blood sugar unhappy by causing it to spike.
I’ve always been somewhat aware of this phenomenon, but I started thinking about it more last week when I got some upsetting news. (I’m okay, please don’t start to speculate on what it was…just a personal matter that I don’t care to discuss in greater detail here. Love y’all for understanding and respecting that.)
Actually, it’s kind of interesting to think about how the sequence of events unfolded last Thursday. I received a message that caused me to instantly panic. I was going to learn the context behind the message about a half hour after I got it, so in the interim, I was pacing all around the house and trying to figure out what exactly was going on. My stomach was roiling, my palms were coated in a light sheen of sweat, and my already-unruly hair frizzed out even more….
…and my CGM trend started going up, up, up, ever so slowly but noticeably.
I didn’t do anything to correct my blood sugar – at least, not right away. I waited until after I heard the specific news that had gotten me so worked up to really pay attention to my rising levels. I probably could have made my high blood sugar less severe by running a temporary basal increase right after I initially freaked out, but obviously, I had other things on my mind than my diabetes at that moment in time.
The whole experience was a stark reminder that food and insulin are far from the only things that impact blood sugar levels. Raw human emotion did that to me, and it will do that to me again in the future.
It sucks, but isn’t it also fascinating to think about how diabetes is totally a physical and emotional chronic condition, in every possible way?
The morning of my cousin’s wedding, I woke up to a blood sugar of 237 after a night of fighting elevated levels. There was no rhyme or reason for the high blood sugar – I hadn’t eaten a single thing for 16 hours at that point, but I had changed my pod an hour or two before going to bed.
WTF was wrong? Was the pod’s cannula bent? Was I high due to wedding day jitters? Would the highs persist all day?
These were the thoughts racing through my mind almost as soon as I woke up the morning of my cousin’s wedding.
I didn’t have time to worry about my MOH speech, or whether my hair would turn out the way I wanted to, or even to drink a celebratory mimosa while I got ready with the rest of the bridal party – I was too preoccupied by my elevated blood sugar.
All I could bother to think about was a potential solution before we all walked down the aisle.
Somewhere between applying my eyeshadow and having the 111th bobby pin secured in my hair (yes, it truly took 111 bobby pins to make my intricate braided up-do possible), I remembered “The Incident” from last year. I’d slept through a high blood sugar that, the following morning, refused to come down. As my frustration grew, so did the pain in my belly that lead me to the bathroom, where I came very close to passing out. One ambulance trip and ER visit later, I discovered that my pod’s cannula was bent, leaving me with no doubt that a pod malfunction was responsible for the whole ordeal.
With that memory vividly replaying in my mind, I made the executive decision to change my pod a couple hours before we were due at the wedding venue. And I can’t even begin to explain how happy I am that I listened to my intuition to do so. Upon removing it, I noticed blood at the site – not as bad of a sign as a bent cannula is, but a possible indicator of a problem. By the time we were in the venue’s bridal suite, my blood sugar was sitting pretty at 90 and I was finally able to focus on the beautiful, meaningful afternoon.
Sure, it was a stressful morning and far from an ideal situation, but I am extremely proud of myself for how I handled it. I didn’t panic the way I normally do. I didn’t shed any anxiety tears. I kept the issue pretty well-concealed from the bride, who shouldn’t have to worry about her MOH’s health on her special day. My calm approach paid off, and though it sucked to waste almost two days’ worth of insulin when I disposed the wonky pod, I knew I should pay closer attention to the fact that I did what needed to be done.
And even better was that my diabetes mostly cooperated with me the rest of the day. It didn’t stop me from delivering a fantastic speech with the matron of honor. It didn’t prevent me from enjoying some tasty wedding food, cake and all. It certainly didn’t keep me from tearing up the dance floor with my enthusiastic family. And it didn’t end my night early as I went out with my boyfriend, the newlyweds, and the matron of honor and her husband to a bar to shoot some pool and continue our celebrations.
Turns out that dealing with diabetes when you’re the maid of honor has a lot to do with keeping a cool head and living in the moment, two things that are so important to do in a variety of situations.
Which is why I didn’t think twice before writing “ye olde insulin pump” on my pod before attending a renaissance faire last week.
Yep, there I am, with my pod in full view, my Myabetic backpack slung on my shoulders, and turkey leg in hand. This is pretty much me in my full glory.
I could’ve let my diabetes get in the way of me enjoying the faire, especially because it’s been somewhat unpredictable lately, but I didn’t.
I ate what I wanted, drank some raspberry wine (much tastier than mead, IMHO), and socialized with friends.
I anticipated some people to notice or comment on my pod, which I actually wouldn’t have minded because maybe it would’ve been from another T1D or someone who is familiar with insulin pumps. But all day long, the only remark came from someone within my group, and we all had a chuckle over it…and that was it.
Which is perfectly fine by me, because even though my ye olde insulin pump and I weren’t trying to hide diabetes at the renaissance faire, it did give me a mental vacation from it for part of the day.
I may not be the parent of a T1D child, but I am the T1D child of my parents. So I have a unique perspective on the concerns and fears that a parent of a T1D child might have.
I also have a little more insight on these concerns and fears through my interactions with many parents of T1D children over the years. These parents had children of all ages: from toddler to teenager. Their children ranged from newly diagnosed with diabetes to multi-year veteran of T1D. Despite these differences in ages and years with diabetes, they’ve all had something major in common: An intense fear over the day when their child would make the transition from living under their roof to living independently, on a college campus or in another living situation.
The mere thought of their beloved son or daughter going through this was enough to make some of these parents on the verge of tears. It was heartbreaking, but also somewhat confusing to me. I understand the unconditional love that parents have for their children, so naturally, they were terrified at the thought of their children feeling alone as they made the transition to young adulthood, or frightened by the prospect of their children suddenly not wanting to take care of their diabetes anymore. But what I didn’t get was why they automatically assumed the worst.
What if their child thrived in this transition? What if their child found a wonderful group of people, such as the College Diabetes Network, that helped them through this period in life (like I did)? What if their child was ready to manage everything on his or her own? Certainly, it would be a source of pride for a parent to witness his or her child do well and embrace independence.
On the flip side, if a young adult with T1D struggled to make the transition smooth…well, I told many of these parents that it’s okay. Because I struggled. A lot, actually. But I made it through. The longer I spent away from home, the more I realized that it was time for me to hold myself accountable in terms of diabetes management. There was never really any big “aha” moment for me. It was more of a slow-and-steady recognition of the fact that the shitty blood sugars I was constantly dealing with could only be changed by me, and me alone. So I took the steps I needed to; naturally, with the support of my parents.
I guess that’s kind of the two-fold message I’m trying to convey here to worried parents of T1D children: 1) Have faith in your child’s ability to adapt to change, and 2) Never underestimate how your support, in any form, can mean the world to your child. Don’t be afraid to have conversations with him/her so you can get on the same page and understand how you’re both feeling about this new life stage. That way, you can find out exactly what kind of support you can offer to your child that he/she will find most helpful.
The bottom line: Parents with T1D children, it’ll be okay. Just like people with diabetes know they’re not alone in their struggle against it, you should also know that there are many other parents out there who probably feel the same as you.
In that way, we’re never truly alone when dealing with new challenges or changes in our lives. Once that’s realized, it becomes a million times easier to figure out the best way to tackle them with your support system by your side.