How I React to People’s Diabetes “Horror Stories”

I attended a family reunion earlier this month and got into a conversation with a relative who’s well into her 90s. She was asking me what I do for a living and I kept my explanation fairly high-level: “I work with college students who have diabetes”.

(Which, side note, I help handle the communications side of things for CDN and so far, I don’t often interact with the students…but I figured this was still a semi-correct answer that spared me from getting into the social media aspect with someone who’s probably never even heard of Instagram.)

Her response to my job description was…interesting. She started telling me the story of a “young bird” she once knew who had diabetes, needed dialysis, and then got her foot amputated. And then died.

This is a classic diabetes “horror story” that people often seem to tell when they discover that the person they’re speaking with has diabetes. It’s a story that’s told as a knee-jerk reaction: Either the person expresses their sorrow for the fact that the other person has diabetes, or they tell the tale of someone they knew who had diabetes and suffered immensely from it.

It’s a strange phenomenon, for sure, but one that happens across the board to people with diabetes.

You might be wondering…how do I react in situations like this? Is there a right or a wrong way to handle them?

Diabetes horror stories are not among my favorite kind of tales.

I chose to navigate this particular interaction by nodding sympathetically. While I truly was sorry to hear about this “young bird” and her fate, I was also very uncomfortable by the story. I’ve never felt “okay” about discussing diabetes complications because they scare the living daylights out of me, and I also was completely caught off-guard that a simple question about my job was enough to trigger the telling of this vignette. So for me, this wasn’t exactly a teaching moment in which I could correct this distant relative of mine and explain why it can be harmful to tell these horror stories; in fact, this whole incident made me realize that I don’t think I’ve ever truly reacted to a diabetes horror story when it was told to me.

And I think I’ve finally figured out the reason why…I just don’t want to engage with a person who’s going to react to my diabetes by telling me about the terrible outcome experienced by someone with diabetes who they may or may not directly know. What’s the point? What else am I supposed to say besides I’m sorry? I can’t really think of a graceful way to turn the conversation around, so for me, it’s always felt easiest to just nod, smile, say something compassionate, and then end the conversation by walking away or changing the subject completely. It’s not right or wrong, per se, but at least I know that I’m doing right by myself and my comfort levels.

This tried-and-true tactic of mine just goes to show that not every diabetes anecdote can be turned into a teachable moment – at least, not in my opinion or experience.

Diabetes in the Wild: Go-Kart Edition

Diabetes in the wild moments happen when they’re least expected.

I mean…I never go out anywhere in public assuming that I’ll run into another person with diabetes, or a person who will recognize my Dexcom sensors or OmniPods as diabetes devices. It just happens organically and it’s always a unique encounter. But given that my other most recent diabetes in the wild experience left me feeling awkward and uncomfortable, I wasn’t exactly looking forward to having another one any time soon.

But on my vacation, I did indeed have one that I’m pleased to share was much more pleasant than the last.

Yes, this is a graphic of an insulin pump taking a trip around a racetrack.

I was waiting in line for go-karts – as one does on vacation – when the woman in front of me spotted my Dexcom and asked me if I was type 1, to which I replied that I am.

This launched a short conversation about diabetes technology in general. She expressed knowledge of the OmniPod and I told her that I was wearing one, and she nodded eagerly and said how much easier it makes her life in the summertime, when she’s frequently swimming and doesn’t have to worry about disconnecting her tubing before going for a dip (a comment which I wholeheartedly agreed with). We exchanged a few more words about our diabetes devices, and before she turned her attention back to her group, she thanked me for taking the time to chat with her.

I couldn’t help but smile after the whole interaction. After all, it was kind of nice knowing that another person who just “gets” diabetes was standing inches away from me and looking forward to a carefree go-kart race, too.

Do You Know How Long OmniPods Last?

This post was originally published on Hugging the Cactus on June 3, 2020. I’m sharing it again today because I have seriously benefited from learning the “true” length of time that a single OmniPod lasts on my body. Read on to learn more…

When people notice my OmniPod insulin pump, the first question that I’m asked is “what IS that?”

After I explain that it’s my insulin pump, and it’s called a pod, the second question I’m asked is some variation of “how long does it last?”

The canned answer that I provide is something about having to change it every three days, because that’s how the OmniPod is advertised.

But I’ve used this pump for years now and never bothered to really test this three-day limit. I’ve known for a long time that my pod works a handful of hours after the expiration alarm starts chiming, but I wasn’t sure about exactly how many hours I had before a pod expired for good.

So, the other day, I decided to find out.

Have you ever made your pod last longer than 80 hours? If so…are you a wizard???

My pod expired at 10:22 A.M. Since I prefer to change my pods in the evening, I figured it was the perfect time for this little experiment, assuming that the pod really would last me for the majority of the day.

And, well, it did! At 10:22 on the dot, the pod beeped at me to notify me that it was expired. And in the six hours after that, it would alarm every hour (on the 22nd minute) to remind me, time and time again, that it was expired. In the seventh hour – beginning at 5:22 P.M. – my PDM started chirping at me on and off every 15 minutes or so. First it was because I was running out of insulin, but then it was to really get the point across that my pod was expired!

I was determined to use every last drop of insulin in the pod, though, so I bolused for my dinner around 5:45 and I was pleased to discover that I got my full dose of insulin without any issues. As I was cleaning up after dinner, that’s when the signature OmniPod BEEEEEEEEEEEEEEEEEP went off as one blaring, unceasing alarm. I checked the time: 6:22 P.M.

So there was my answer. An OmniPod can last precisely 80 hours after you initially activate it for the first time (or in other words, 8 hours after you receive the first expiration message)…as long as it still has insulin in it. It’s definitely something good to know for sure now, because in the future, it might come in handy and help me avoid wasting precious insulin.

My A1c Results are in and…

Before I left for my vacation, I had my (long overdue) annual physical with my primary care doctor. Like he does every year, he ordered bloodwork for me which meant that I had a whole host of health data to review on my online patient portal, including my current A1c.

When I saw that value up more than half a point from my last reading, my heart sank.

Now, I’m not going to say specifically what the reading was, because I’m a strong believer in keeping that sort of information to myself (and if you’re the type of person who shares their A1c, that’s okay, too – it’s just not for me). But I will say that it definitely isn’t the worst A1c reading that I’ve ever had, though it upset me because I think it’s the highest I’ve been since my college years.

Once it fully sunk in that this was my current A1c reading, like it or not, I started thinking about the why. Why have I gone up? I could think of a few factors…

  • I haven’t been eating super healthy; rather, I probably eat too many sweets that cause my blood sugar to fluctuate more than it ideally should.
  • The pandemic has changed a few things about my daily lifestyle – I don’t get out of the house as much I used to because I work from home, which means I’m in very close proximity to my kitchen and that gives me too many opportunities throughout the day to snack.
  • I get lazy and don’t bolus for “small” snacks (i.e., snacks with 10 carbs or less).
  • On the subject of laziness, I’ve been really bad about “eyeballing” my plates and portions lately when it would obviously behoove me to measure out my food and study my nutrition labels.

So those are the things I could think of that are the likely culprits behind my dissatisfactory A1c. As I sat and stewed over them and chided myself for my carelessness, though, I also tried to gently remind myself that A1c is only one measure of blood sugar “control”: I told myself that I need to bear in mind that my overall time in range is something that I should study and try to learn from, rather than dwell on this narrow snapshot of my 90-day blood sugar averages.

This is as close as I’ll get to sharing my personal A1c/time in range metrics… 😉

Using my Dexcom Clarity app, I learned that my time in range was suffering. I prefer to spend 80% of my time in range, and lately, I’ve fallen short of that goal. So after studying the amount of time that I spend “high” or “very high” (high blood sugars are always more troublesome for me than lows), I started to get a clearer picture of what was going wrong for me and what I might need to do to fix it.

This whole exercise, as bummed as I was to have to go through it, is going to serve as a great reminder to me that whenever I get disappointing news about my diabetes management, the best way to cope with it is to study the facts that I quite literally have available to me at the tips of my fingers. I know why my A1c is where it is, and I also know now the areas in which I need to improve. And that’s something to be grateful about and use as a motivator so that I can improve both my A1c and my time in range.

I know I can do it – I’ve done it before and can’t wait to feel that triumph over my diabetes.

How I Learned the Importance of Carb Counting

This blog post was originally published on Hugging the Cactus on April 6, 2018. I’m reposting it today because most people know that carb counting is important to a person with diabetes, but they might not understand exactly why. This post features an example that demonstrates all too well the negative implications associated with neglecting to carb count. Read on to learn how I figured out the importance of carb counting…the hard way…

One recent evening, I was rummaging through the kitchen pantry and noticed a bag of “veggie stix” stashed away, waiting to get opened. The sight of the bag instantly brought back memories of a time I was blatantly irresponsible with my carb counting and insulin dosing…

I learned the hard way that neglecting to count carbs can lead to scary high blood sugars…

…It was my junior year of college. I had plans to meet with a friend for dinner at seven o’clock. While that’s a standard suppertime for many people, it was kind of late for me. So that explains why I decided to treat myself to a snack a couple hours before it was time to go, just to hold me until I had my meal. My snack of choice? A bag of veggie stix just like these were sitting in the kitchen of my on-campus apartment. I thought I’d help myself to a few, believing (naively) that I had enough self control to know when to stop shoveling them down my gullet. That’s right, instead of doing the right thing and counting out a bunch before stowing the bag away, I was blindly consuming handful after handful without dosing for a single stick.

I can’t even use the defense that these veggie stix are strangely addicting – they really are, they taste a little like those potato sticks that used to come in cans – because I knew what I was doing wasn’t good for me. I just didn’t care. I had munched my way through half of the bag when it dawned on me that it would probably be smart to stop myself from eating more. I rolled up the bag, returned to my room, and did some homework until it was time to meet with my gal pal.

Little did I know that my blood sugar was rising to potentially dangerous levels.

I didn’t find out how high I was – over 400 mg/dL – until I reached the sandwich shop and had a plate full of chicken pesto carb-y goodness waiting to be consumed. My face must’ve shown my shock, because my friend asked me if I was alright. I quickly explained to her my mistake, and took an extra large bolus to cover my food and correct my blood sugar. Once that was done, I somehow managed to stop panicking long enough to enjoy the dinner with my friend, even though I couldn’t eat a bite of mine until an hour or so after injecting my insulin.

Although it sucked to go through this, I’m kind of glad that it happened because I learned a major lesson from it: ALWAYS count my carbs. It doesn’t matter if I WANT to be lazy or pretend that my diabetes doesn’t exist, I HAVE to hold myself accountable. It may be mentally draining and a bit of a nuisance, but it’s my own health here. It’s up to me, and me alone, to manage it.

And by the way, I did just help myself to the above bag of veggie stix. I had exactly 24 pieces, which equals exactly 5.4 grams of carbohydrates – a much smaller amount than what I ate that one night five years ago.

From Patient to Medical Student: My Journey with Diabetes Treatment – A Post by Konstantina Taki

This post was written by Konstantina Taki and it was originally published on the T1International blog on June 8, 2021. I’m sharing it here today because the journey from patient to medical student as person with diabetes has always personally fascinated me. Despite my interest in medicine, I’ve never actively pursued it as a career (and probably never will), but I appreciated learning about Konstantina’s experience. Thank you, Konstantina, for sharing your perspective!

Having lived with type 1 diabetes for more than 12 years, I have experienced different aspects of the condition. First of all, as a patient, I approach diabetes from a personal view. I can also understand how the condition affects parents of children with diabetes. It’s something new, demanding and difficult to handle. The last five years, as a medical student in Greece, I have seen diabetes from yet another more practical and scientific perspective.

The world of medicine is a marvellous, enormous one. It is a multifaceted science. When I started studying medicine back in 2016, I had a completely romantic approach. I was convinced that the core of medicine is the purpose of making people’s lives better. I believed that healthcare systems were patient-centered and every decision or strategy was made in order to ensure that people’s lives were safe and to improve their health. It was a challenge for me to realise that even in such a human-centered domain, there are motives and decisions which aren’t really altruistic. Instead they are often led by powerful companies.

“Inequality in treatment of people with diabetes should come to an end.” – Konstantina Taki

Over the course of time, I had to face the fact that pharmaceutical companies influence healthcare systems in such a way that healthcare professionals almost have no control. For example, a lot of medical research is funded by the pharmaceutical industry, or ‘Big Pharma’. So how can we ensure that the outcome of research is unbiased? The vast majority of medical seminars and conferences are also sponsored by Big Pharma. This means that organisations who want to support medicine without pharmaceutical industry support struggle in terms of fundraising. Healthcare systems, and the people leading them, tend to lose their purpose of saving people’s lives and improving the health of patients. Instead, they take advantage of people’s health to make profits.

Type 1 diabetes is a non-preventable chronic illness, and its successful management depends on insulin. Without insulin, a person with diabetes is in danger. Insulin belongs to the category of essential medications. I believe pharmaceutical companies take advantage and exploit this situation. Unfortunately, many patients, including those with diabetes, deal with the effects of Big Pharma’s politics and strategies. Having read articles, and later discovering T1International, I saw the process of how the profits of pharmaceuticals cause the loss of human lives. In 2021, people with diabetes still die of their inability to access the only drug that keeps them alive: insulin.

Your money or your life. This is a dilemma that seems to have deep roots in medical society. I am lucky, and I feel safe due to the fact that in Greece this phenomenon doesn’t occur as much as abroad. However, I did experience this dilemma personally in my Endocrinology appointment. In the examination room, there was my doctor, a nurse and a sales manager from a pharmaceutical company with diabetes products. The whole appointment was led by the sales manager. She was focusing on the weak points of my blood sugar throughout the session. Her aim was to convince me to start using a continuous glucose monitor (CGM), which at the time wasn’t distributed for free in Greece. Once I understood that she was trying to get me to use and pay for the product, I tried to focus on my diabetes management without discussing the CGM. The doctor was indifferent. She didn’t seem to be bothered by the sales manager. I ended up arguing with them and then I left the room.

Access to healthcare is an unquestioned human right for every person, which includes the need for medication and technology. Given the fact that the production and distribution of medication diabetes technology can provide extreme amounts of profits to companies, people with low or even no income are therefore excluded from healthcare systems. So who is being served by healthcare systems? Patients or profits? And how could all those profit-maximizing strategies come to an end or at least decrease?

Being able to approach diabetes as a patient but also as a medical student, and hopefully as a medical doctor in a few years, I have mixed feelings. I undoubtedly want to see a change. From a humanitarian view, I strongly believe that no human life is inferior when it comes to health and medicine. People should be treated equally, without discrimination or undue pressure. If there is one thing that medicine has taught me is how vulnerable we are when our health is at risk. In addition, I acknowledge that my awareness for this phenomenon is a result of the realisation of the catastrophic effects my life would have if I had no access to insulin. Companies should not hold patients hostage – but it happens every day.

The reason I appreciate T1International so deeply is its scope to change this condition through raising awareness and advocacy. Inequality in treatment of people with diabetes should come to an end. Health care systems globally must turn into patient centered systems. It is a difficult and slow process but nothing is unachievable. #insulin4all isn’t just a trend. It is a need, a vision, and hopefully one day it will become a reality.

Vacation Time

This time last year, I was headed to the beach for a week and wrote a post expressing my excitement over the change of scenery…and the fact that the CWD FFL conference was taking place, albeit virtually, during the same span of time.

I was beyond stoked to get away for a week, my enthusiasm no doubt fueled by having spent the last few months in isolation (with my parents) due to the pandemic. But I was also incredibly anxious seeing as I didn’t know how drastically this vacation would differ from the ones we’ve taken in years past because of COVID concerns. I wrote:

I have no idea if my family and I will be able to even go to the same strip of sand and ocean without having to worry about things like too many people and not enough masks. We probably won’t be able to eat at many restaurants like we typically do on vacation; instead, we’ll likely cook a significantly higher percentage of our food at home. And we definitely won’t be able to peruse the shops like we have done every year since going to this particular beach town – we’ll have to be a little more creative when it comes to staying entertained.

Granted, I also wrote in that blog post that I was grateful to have the FFL conference to “attend” as a distraction that was both one that I wanted but also one that might be necessary so I wasn’t completely without fun things to do over vacation.

The beach I’m heading to may not look exactly like this but that doesn’t make me any less excited for vacation.

What a relief it is to think about how much things have changed between now and then. Thank goodness for vaccines!

This is my long, roundabout way of saying that I’m on vacation all of next week and I’m so excited to have all that time to unplug and unwind. As much as I liked attending the FFL conference virtually last year, it didn’t foster that sense of community and joy as much as it does when I’m attending it in-person. I’m thrilled for the individuals who are able to go in-person this year, though – I know they’ll get so much out of it and have a truly fun time.

But for now, it’s time for me to hit the recharge button. I’ll still have a couple of new blog posts up and ready next week so be sure to come back then to check them out!

My Close Encounter with the Keto Diet

Remember that time that Oprah Winfrey did a Weight Watchers commercial and proclaimed loudly and proudly before the cameras that she loves bread? (If you don’t know what I’m talking about, here’s the link to the ad with a little doctoring done to it – it is worth a watch.)

Well, I can relate to Ms. Winfrey – except my obsession with carbs extends beyond bread. I love cake, candy, chocolate, pizza, pasta, sushi…and just about every other carbohydrate-laden food that exists. So while I think it’s awesome that many of my peers with T1D choose to follow low or close to no-carb diets, that’s not the kind of thing that works for a girl like me: I’m happy managing my diabetes in tandem with a moderate carb intake. But that’s not to say that I don’t eat lower carb sometimes or that I don’t have an interest in the principles of the keto diet, just because it’s so restrictive.

At least, that’s what I used to think about it.

Would my love of carbs prevent me from trying out aspects of the keto diet?

When my boyfriend decided to go on the keto diet back in May (he’s had experience with it before), I was simultaneously impressed with his dedication to it, but also a little worried. We have dinner together a few times each week and since I wanted to show him that I support him 100%, I knew that I’d have to change up my cooking so it adhered better with the dietary guidelines of keto.

So for the last two months, I’ve had a lot of exposure to the keto diet, and this is what I’ve learned about it:

  • It’s not as restrictive as I thought it would be. I figured that eating strictly keto meant that the only food groups we could eat were meats/proteins, fibrous vegetables, and cheese. That wasn’t 100% true. While we stuck to proteins and vegetables for most dinners, we also had plenty of snacks that kept things fun and interesting. I developed a mild addiction to cheese crisps and chicharrons (otherwise known as pork rinds). I also had a lot of fun trying different keto dessert options out there, including cookies, ice creams, and peanut butter cups (the latter being my absolute favorite).
  • Snacks can get expensive. One of the keto peanut butter cups that we ate cost $10 for a bag of 7. That’s an insane price. When you factor in the cost of other more expensive grocery items, like beef jerky or nuts, things add up quickly, which is definitely a downside to the keto diet.
  • My blood sugars tended to respond well when I ate keto…for the most part, anyways. Eating keto dinners was mostly great for my blood sugar and it stayed relatively steady more often than not. On the occasions it didn’t, it was because I was trying to bolus for the amount of protein or the negligible amount of carbs in the veggies I was consuming at dinner, and I would go low as a result. There’s an art to bolusing on the keto diet, for sure, but since I was half-assing it (really quarter-assing it) and not following it all the time, I never got a grip on how to account for minimal carbs.
  • Keto can inspire creativity in the kitchen. The best thing I made, ate, and loved throughout my experience with the keto diet was cauliflower crust pizza. I found the best recipe for it that was so easy to make and yielded delicious results. I always assumed that cauliflower pizza crust would be too difficult to make or not satisfying in the same way that pizza is, but that isn’t accurate at all. I grew to appreciate the challenge that keto presented me to come up with new things to eat that were tasty and filling, which I didn’t expect but liked.

People with Diabetes are Good at Minimizing

I attended a Massachusetts #insulin4all meeting recently that got me 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.

During this #insulin4all meeting, I was conversing with other chapter members about whether or not we, as individuals, have struggled to afford insulin. And a lot of us confessed that we’ve 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. Despite that, we feel passionately about those who struggle to gain access because we understand how high the stakes are – it’s literally a matter of life or death.

But just because we’re able to (for the most part) afford insulin, that doesn’t mean that we haven’t had to make certain choices that we might not have had to make if we 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 members of my #insulin4all chapter. 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.

T1D and “Inspired” Food Choices

There’s no doubt that T1D directly affects my relationship with food.

Sometimes, I eat whatever I want with zero guilt. Other times, I painstakingly count not just the carbs, but every single macro of any morsel that meets my mouth. And more often than not, I fall somewhere between those two extremes.

But no matter what, my relationship with food is exhausting and probably one of the most inconsistent relationships I’ve ever had in my entire life.

It’s also a relationship that causes me to make what I’m calling “inspired” food choices.

Diabetes certainly impacts my food choices…especially when it comes to blood-sugar spikers like pizza, pasta, waffles, cake, and more.

Choices like eating dessert before dinner because my blood sugar is low.

Choices like only eating low- or no-carb foods because my blood sugar is high.

Choices like timing my meals down to the minute because I know that my body functions best when I eat regularly.

Choices like keeping snacks in my purse, my overnight bags, my car, and miscellaneous other locations because I never know when I might need food on the fly.

Choices like restricting my eating because a low blood sugar made me binge on food one day, and the guilt carried over to the next day.

Maybe “inspired” isn’t the right word to describe my food choices here. There’s so many more that could apply: weird, strategic, healthy, unhealthy…the list is limitless.

Just like the number of “inspired” food choices that my diabetes triggers.

Good, bad, and everything in between, though, the first step in making changes to my relationship with food is acknowledging the flaws in it. While I admit that I’m not sure what the next step is, I do know that I’m feeling determined to finally establish a guilt-free relationship with food.

Diabetes already takes too much from me…I refuse to let it continue to make my relationship with food negative.