Category: Random

7 Questions People Always Ask Me About Type 1 Diabetes

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This was originally published on March 1, 2019 on Hugging the Cactus. I’m sharing it again today because these questions (and answers) are truly timeless: I feel like I’ve been answering them to a certain degree for the last 25 years, and I fully expect to have people continue to ask me these questions in the future. Fortunately, as someone who enjoys being a diabetes advocate, I don’t mind answering them and providing insight…but that doesn’t make some of these questions any less eyeroll-worthy. Read on to see what I mean…

Human beings are naturally curious creatures. So it’s never really surprised me when, upon discovering my T1D, people tend to ask me boatloads of questions about what it’s like. And it’s definitely not at all shocking that many of these questions are recurring.

Here’s a list of seven questions that I’m almost always asked when I encounter someone who’s just learning about my diabetes. You’ll notice a trend as you read, because even though there’s “no such thing” as a stupid question, this list kinda gets dumber as it goes on. There, you’ve been warned…

7. What does it mean when your blood sugar is high/low?
This is definitely a fair question. I never expect someone who is unfamiliar with diabetes to know the meaning of hypoglycemia or hyperglycemia. I actually kind of appreciate being asked this question, because it helps me spread awareness. The more people that know how to react in severe high or low blood sugar cases, the better, IMHO.

6. Why do you wear all of those devices?
Another decent question – I never mind explaining how my CGM and my pump work, but I do mind when people say ignorant things, like “Oh, are those patches to help you quit smoking?” *Eye roll*

5. Can you eat/drink [fill-in-the-blank]?
Ugh…I get why people ask me this, but it’s a little more tiring to explain. My answer is usually along the lines of: “I can eat or drink whatever I like, but I need to take insulin to account for it. So I try to eat a limited amount of carbs at a time, because that means I have to take less insulin, and there’s less room for error.” But even after that easy-to-understand explanation, the typical follow-up questions are “BUT CAN YOU EAT CAKE/COOKIES/ICE CREAM/ANY SUGARY FOOD?!” And that’s when I lose a bit of my patience, TBH.

4. Does it hurt when you check your blood sugar/give yourself a shot?
I mean, no? I’m not trying to be facetious or anything, but really, after 21+ years of checking blood sugar and giving myself insulin multiple times per day…there’d be a real issue if it hurt every single time. I concede that there are the occasional sites that sting, but it’s not nearly as bad as many people seem to assume.

3. What’s that beeping sound/ARE YOU GOING TO EXPLODE?!
Honestly…use common sense. What’s the likelier scenario here: That my devices have built-in alarms, or that I’m going to spontaneously combust?

2. How did you get diabetes/WHAT DID YOU DO WRONG?
This. is. such. an. ignorant. question. Nobody, myself included, did anything “wrong” that resulted in my diabetes diagnosis. I didn’t catch it and no number of lifestyle changes could have prevented me from developing diabetes. My immune system merely decided to attack and destroy the insulin-producing beta cells that lived in my pancreas. There’s no real answer as to how diabetes is caused, though genetics likely play a role in it. Don’t worry, you won’t “catch” the ‘betes by being in my presence.

1. Do you have the…bad kind of diabetes?
This question is THE WORST of them all because there is no good kind of diabetes! Gestational, type 2, LADA…none of them are favorable. They all suck. They all require constant care, regulatory medications, and endocrinology expertise. So please for the love of all that is sacred and holy, next time you hear someone ask this question, gently inform them that there’s no such thing as good/bad diabetes.

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The Language of Diabetes: Is it a “Chronic Illness”, a “Disease”, or a “Condition”?

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What would you say if someone asked you to identify diabetes as one of the following: 1) a chronic illness, 2) a disease, or 3) a condition?

My response would be…it’s not so clear-cut for me. It’d change depending on how I felt about my diabetes at a given moment in time.

What word(s) would you use to identify diabetes?

So for example, on the days when diabetes dominates all of my thoughts and emotions with its unrelenting nature, I’d be more inclined to call it a chronic illness. On those occasions, my diabetes seems determined to remind me that it’s not going anywhere, and that I’d better just accept that it’s here to stay.

But when diabetes is straight-up pissing me off – say because of a medical device failure or a stubborn high blood sugar that won’t come down – I’d call it a disease. It seems to be a fitting title for something that’s acting in a disordered nature, and goodness knows it infuriates me to no end when the elements of diabetes that I can more usually control act out unpredictably.

And then it’s when diabetes and I are just mutually co-existing. I’m aware of it, and it’s aware of me, but it doesn’t have the ability to impact my emotions like it does when it’s behaving more like a chronic illness or a disease. When diabetes is my condition, I have it – it doesn’t have me.

I could be reaching a bit here with my musings on associating diabetes with different words, but truly, language is powerful in diabetes (and really, in all aspects of life). Words and phrases have connotations and significance depending on the contexts in which they’re used, making their endless combinations utterly fascinating. Because of this, I believe that examining the specific language around diabetes is extremely interesting as I think about the ways I describe my own diabetes experience and how that involves my emotions.

And what’s really cool is that there’s no right or wrong way about the words I choose to use regularly around my diabetes because it’s my story to tell. Here’s a friendly reminder that the same applies to you, too.

A Serendipitous T1D Encounter

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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.

Diabetes in the Wild: Doggie University Edition

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I’ve enrolled my dog, Violet, into Doggie University.

You see, Violet is a perfect pup…except for the fact that she is highly reactive. If she sees another dog on a walk? She barks. A person? She barks. A car? She sometimes barks. A leaf blowing in the wind? Yes, she’ll bark even at that.

Her extreme observation skills are impressive, but not exactly what I’d call acceptable behavior in terms of how a well-mannered dog should react to any external stimuli. So I decided to start formally training her with the help of a local trainer.

Violet loved her first day of school (in which she spent the full day playing with other dogs and getting introduced to some basic commands), but I wanted to be more hands-on with her training. That’s why I got a 1:1 lesson with a trainer so we could work together with Violet.

And it turned into a completely random and unexpected diabetes in the wild encounter – just as they usually tend to be!

Here’s my sweetpea, demonstrating her mastery of the “place” command!

I walked into our lesson and the trainer asked me, point-blank: “Do you have diabetes?”

I was surprised. How did she know? The blank expression on my face must’ve been obvious to her, because she then pointed out that she could see my pod and Dexcom on the backs of my arms. I was literally wearing my diabetes and completely forgot about it.

I said, “Yup, I am! Do you know someone who uses either of these devices?”

She nodded eagerly. “My sister has type 1 diabetes, too, so I’m pretty familiar with all the technology.”

I smiled warmly at her; after all, it’s always nice when a diabetes-in-the-wild interaction is as pleasant and straightforward as this one. We chatted for a couple of minutes, in which I told her about my job working for a diabetes nonprofit, and she shared with me that she’s aware of some of the bigger diabetes organizations out there and “all the great things they’re doing for people with diabetes”. I loved how she acknowledged that, and how seamlessly we were able to transition from a casual diabetes convo to putting my pup to work.

All in all, it was a great lesson for both me and Violet – in terms of how quickly Violet caught onto things and how well that quick diabetes talk went. I enjoy it when people feel free to ask me about my diabetes upfront rather than bemusedly ogle at my devices. It’s a reminder that even when it feels like the diabetes community has a long way to go when it comes to combatting stigma, there’s still plenty of allies out there who really do get it.

T1D Tests More Than Just Blood Sugar…

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Turns out, living with type 1 diabetes means that I’m testing a whole lot more than just my blood sugar levels…

…I’m testing my memory, too – and rather frequently.

As a person with T1D, it’s on me to remember to do basic things like bolus for meals, be prepared with back-up supplies at all times, get prescriptions filled before I run out of anything, and so much more. More often than not, I pass these memory tests.

But naturally, I’m bound to fail one every now and then.

Case in point: I forgot where I left my PDM the other day. I had prepared my dinner and went to take a bolus for it when I realized that I couldn’t remember when or where I last saw it.

When the “Find my PDM” feature fails, there’s nothing to fall back on other than memory…and maybe a bit of luck, as well.

It was an infuriating scenario. I knew it was somewhere in my home. I hadn’t left the house all day, other than to take my dog outside to do her business. I spent the better part of a half hour wandering up and down the stairs, searching with an increased sense of franticness, for my PDM. The urgency to locate it only heightened when I tried to use the “Find my PDM” feature on the Omnipod Display app and it wouldn’t work. That was a first – up until this day, I’d always been able to use it to track down my PDM when I’d misplaced it. It showed no indication that it was going to suddenly start working again any time soon, so I gave up and was forced to retrace my steps in order to find my PDM…which was going to be difficult considering in the middle of my search, my Dexcom went off, alerting me to an impending low blood sugar.

Think, think, think…I could practically feel the wheels turning in my head as I tried to recall where I last saw my PDM. I’d bolused for lunch earlier in the day, most definitely. That much I knew. I had eaten lunch downstairs, so I surmised that I brought my PDM upstairs with me when I was done so I could have it nearby as I continued on with my workday.

I looked high and low, all around my bedroom, without success. That’s when it dawned on me that there was a slim chance that my PDM fell outside of my pocket when I took my dog out just before I’d made my dinner. So I ventured outside, sweat starting to bead on my forehead as I grew shakier from my low blood sugar. I scoured the parking lot and the lawn for my PDM and no dice. That was when I decided to head back inside, drink a juice box, and take a moment to really contemplate the time and place I last saw my PDM.

That’s when it hit me – it had to be on my bedroom floor, next to my bed, because I suddenly remembered how it had accidentally slipped off my bed when I’d placed it there after lunch! I raced back upstairs, feeling triumphant and relieved when I saw the PDM in that precise spot and could confirm that my memory had finally served me correctly.

Now, this might sound like some silly, random anecdote about how I had a forgetful moment. But to me, it actually demonstrates just how much a person with diabetes needs to remember to do on a daily basis. It’s so much more than the finger stick pokes or insulin injections – it’s a lot of accountability. It shows that diabetes tests a whole heck of a lot more than blood sugar…it tests patience, responsibility, and yes, in this particular situation, memory. This is why I think people with diabetes deserve recognition for dealing with these daily, innumerable tests as gracefully as we can.

Diabetes in the Wild: Self-Defense Class Edition

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“I have diabetes, too.”

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.

Diabetes in the wild moments happen when they’re least expect – I certainly didn’t anticipate this interaction when decked out in protective gear!

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.

Diabetes Hurts (Sometimes)

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“Gimme a sec, I’m multitasking right now…owwwwwww!”

I was talking to my boyfriend on the phone and changing my Dexcom sensor at the same time when I was caught off-guard by (and yelped in surprise at) the sharp sting of the sensor’s needle plunging into my arm. It was a sting that evolved into a burn that lasted a solid 24 hours, much to my discomfort.

Examples of just a few of the many needles that I’m constantly poking myself with.

People often ask me whether or not my diabetes devices hurt. The answer is almost always no, because I’ve grown accustomed to the constant pricks and pokes. But once in a blue moon, I have a sensor or pod insertion that hurts so badly that my eyes well up with tears or I have to deal with a night or two of uneasy sleep, because it aches any time I roll over onto the stinging site.

It doesn’t matter that I’ve had at least 30,000 (yes, I did the math) shots and site changes over the years – diabetes still hurts, sometimes, and that’s just talking about the damage it does physically.

Diabetes hurts mentally, too, though that type of scarring is a whole lot more difficult to quantify.

The bottom line? Diabetes doesn’t hurt all of the time, but on the rare occasions it does, it’s a painful reminder that this is just the way of life for people like me who’ve got no other choice than to deal with it.

Sensor Snapping by the Seashore

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Sensor snapping by the seashore…try saying that five times fast.

The past several weeks have been so busy that I completely forgot about an incident that occurred when I was away on vacation in July.

An incident that I’d never experienced in my decade of using Dexcom CGMs…

It was the second-to-last day of my trip. I was blissfully soaking up the sun’s rays – it was by far the best beach day of my entire week in Maine. That meant that the sun was strong that day…so strong that I was basically applying sunscreen every hour, on the hour, because I am as pale as Casper the friendly ghost.

During one of my sunscreen applications, I noticed that the Dexcom sensor on the back of my arm was looking a little off. I mean that literally – the transmitter seemed like it was jutting out at a weird angle. Upon further inspection, I realized that the grayish-purple prong that helps keep the transmitter in place was hanging on by a thread. I was pretty surprised to make that discovery, for a few reasons: 1) I didn’t know that could happen, 2) the sensor was only about 24 hours old and nothing went awry during the application process, and 3) I couldn’t remember bumping into anything that would’ve caused a plastic piece to break off my sensor. But the most surprising part was that it was enough to cause my sensor to stop collecting readings altogether – I was getting an error message on my Dexcom app.

My broken sensor prongs and me, sitting on the beach.

I didn’t know what to do other than carefully break the prongs off all the way – they weren’t going to do me any good now – and gingerly press my transmitter down into my sensor for several minutes to see if that did anything…and no dice. I resorted to plan B, which was to wait until I got back to the house I was staying at to do some more research into the matter.

Unfortunately, the internet had nothing helpful to offer me. I was somewhat relieved to know that this has happened to other people, but definitely bummed to learn that there wasn’t a real solution other than to apply a new sensor – which wasn’t an option for me since I had only packed the one sensor for my trip. Whoops. So much for me being the diligent, prepared T1D that I thought I was.

Ultimately, I decided to rip the sensor off and deal with finger stick checks for the rest of my trip; after all, I was going to be returning home the next day. I look at the whole incident as yet another example of why it’s important to pack extras of my extras, and as a reminder to expect the unexpected in life with diabetes!

Diabetes in the Wild: Caught-Off-Guard Edition

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“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.

This particular diabetes in the wild incident made me feel like an ogled animal at the zoo…not a pleasant feeling.

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.

How a Normal Pod Change Turned Into a Bloodbath

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WARNING: If you are at all squeamish when it comes to blood…then this blog post is NOT for you! I will not be posting any graphic photos or anything, but I’ll be telling a bloody tale that might make the faint of stomach a bit queasy. Read on if you have no fear…

There’s nothing quite like waking up and doing a routine pod change…only to have blood literally pour out of your body the moment you tear your old pod from its site.

Okay, so using the word “bloodbath” in the title might be a gross exaggeration (LOL at my pun because yep it was GROSS), but I digress…blood really did stream in a rivulet down my arm. It sounds wild, but it’s true!

This happened to me a couple of weeks ago. I don’t often change my pod first thing in the morning, but every now and then, I’ll time it so that my pod is set to expire (like, really expire – pods expire for good 8 hours after receiving the initial “pod expired” message on the PDM) as soon as my wake-up alarm goes off. My only goal in prolonging the pod like that is to use up as much insulin as possible that’s left in the reservoir…naturally, I don’t like the idea of tossing a pod when it’s still got 50+ units of insulin left in it.

So I literally woke up on this particular morning at 6 A.M. to my pod screaming because I’d hit the 8-hour mark. I rolled out of bed and stumbled over to my mirror so I could have a better view of the pod, which was sitting on the back of my arm, and proceeded to rip the pod off. That’s when I saw blood – not just a tiny drop, but a full-on stream running down my arm!

The ‘betes can get bloody from time to time.

I was surprised, but still had my wits about me to the extent that I was able to run into my bathroom and grab some tissues so I could start wiping up the blood and apply pressure at the site. I barely made it in time – the blood was coming out so fast that drops were falling on the floor and my sink was getting dotted with red. I wasn’t really freaked out, per se, because I knew that if I just pressed hard enough with a tissue, then I’d be able to staunch the wound. And sure enough, within 5 minutes or so, I’d successfully done just that. I peeked under the last tissue I’d used and noticed a purplish mark at the old pod’s site, which indicated to me that I must’ve hit some sort of vein when I had put that pod on. Definitely not intentional, but something I hope to avoid going forward.

And undoubtedly…definitely not my favorite way to start the day!