8 Things About Diabetes That Make Me Want to Rip My Hair Out

This post was originally published on Hugging the Cactus on June 5, 2020. I’m sharing it again today because I’ve had my fair share of moments lately in which I’ve genuinely felt like ripping out my hair (or punching the wall) over my diabetes! Read on and find out if you agree with this list – and leave a comment to let me know what you’d add!

Life with diabetes can be the opposite of a cakewalk. In fact, it can be so frustrating at times that I seriously consider ripping my hair out due to sheer agitation.

When thinking about the things that drive me nuts about diabetes, I came up with a list of 8 occasions in which I come this CLOSE to losing my freakin’ marbles:

1. When low blood sugars refuse to come up…

2. …And when high blood sugars refuse to come back down.

I’m considering these first two as separate list items because the scariness of a lingering low and the frustrating nature of a stubborn high can be two very different types of “GAAAAAAAAHHHH!” But both can be especially suck-y when you feel and know that you’ve been doing everything right to treat them without experiencing the expected results.

3. Pod and CGM sensor failures.

Oooh, any sort of device failure can be so exasperating any time of day. But they’re worse when they happen at inconvenient times, such as in the middle of the night or during an important conference call. All diabetes technology should work flawlessly at all times, but that’s not always the reality that we live in.

4. Inaccurate results.

I can’t stand when my blood sugar meter or my CGM report false readings. Sometimes, I’ll check my blood sugar two times in a row just to see how close both readings are to one another, and it makes me want to throw my meter across the room when I see that they’re off by 20+ points. Once, I had a reading that was off by more than 50 points! That makes a major difference in how much insulin I give myself in that moment in time, so inaccurate results can really derail my blood sugars for hours after.

When I first found this illustration, I could’ve sworn the lady was flipping the bird…which would also be an accurate depiction of what these 8 things make me feel like doing!

5. Folds in the adhesive.

Whenever I apply a fresh sensor or a pod, I try to be super careful and make sure that the adhesive sticks smoothly…but despite my best efforts, that doesn’t always happen. Folds in the adhesive are far from the worst thing in the world, but they do make it more difficult for my devices to stick on for the full length of time that I need to wear them, and I usually end up having to add tape around them to reinforce the hold. More tape = more folds = more irritation!!!

6. Unexplained blood sugars.

Anyone with diabetes has been there, done that. You could follow the exact same routine from one day to the next, even eating the same foods at the same times, and get totally different blood sugar results. Or maybe you thought that you bolused perfectly for a meal, only to find out hours later that you’re much higher or lower than you anticipated. Whatever the reason behind them may be, unexplained blood sugars are just obnoxious.

7. Screeching alarms.

Speaking of things that are obnoxious, let’s talk about wailing OmniPod or Dexcom alarms for a hot second. There’s nothing like a resounding BEEEEEEEEEEEEEEEEEEEP to ruin your day!

8. The INSANE costs of our supplies.

Undoubtedly, the thing that most makes me want to rip my hair out when it comes to diabetes is the cost of supplies. I’ve blogged more and more recently about the criminal cost of insulin – since the 1990s, the cost of insulin has increased over 1,200% (!!!) – and I’ll continue to do so until EVERYONE with diabetes can afford this life-saving medication. We never asked for diabetes to happen to us. But it did. And the fact that many people with diabetes have to make sacrifices in order to, well, survive, is simply not okay, and the most infuriating thing about living with this chronic illness.

When Diabetes Disrupts Dinnertime

I collapsed onto my dining room chair, grappling with a dinnertime dilemma as my hands shook from a swiftly dropping blood sugar:

Do I correct the low now with something sweet, and wait to eat my dinner awhile, or do I wolf down my meal and stay seated until my blood sugar stabilizes?

Both options come with their own set of pros and cons. In the first scenario, I’d be eating dessert before dinner – nothing totally groundbreaking, but not overly appealing and requiring me to account for the sweet’s extra carbs in my dinnertime bolus. But at least I wouldn’t deal with low symptoms all throughout my meal. In the second scenario, I wouldn’t be enjoying my food at all; instead, I’d hoover it down like a human vacuum and keep all my fingers and toes crossed that the complex carbohydrates would kick in as quickly as possible. On the bright side, I also wouldn’t have to eat or bolus for any extra/unwanted sweets if I went with the inhale-all-the-food choice.

But what both options have in common is that they also completely ruin the dinner experience for me by either delaying the timing of my meal or rushing me through it, neither of which is desirable.

Hey, diabetes…you weren’t invited to the dinner table.

That’s just life with diabetes, though – dealing with a series of undesirable scenarios. In this particular situation, I ended up eating my dinner as quickly as I could and my blood sugar came back up about 20 minutes after I was done with it. I was simultaneously annoyed and relieved. Sure, I didn’t get to enjoy dinner at the pace I wanted, but at least my blood sugar was back to normal. And I suppose it just makes me appreciate all the other meals that I get to eat that aren’t disrupted by diabetes, and those totally exceed the ones that do (thank goodness).

The Daily Drink that My Diabetes Dislikes

I remember my first-ever cup of coffee. I was around 10 years old. I had it at my grandparents’ house, where much of my family was gathered for some sort of holiday or other occasion. Coffee was being served with dessert, and I asked my mother if I could try some – I wanted to know why all the adults in the room were so enamored with the seemingly innocuous brown beverage.

I’d like to say it was love at first sip, but I think it was only after I poured in a hearty amount of cream and 2 or 3 Splenda packets that I felt any affection for coffee. But once I did that? I was a goner. Coffee became a staple for me. I’d get it from Dunkin’ Donuts at the mall whenever I went shopping with friends, pour a cup on the weekends to have at breakfast, and when I was feeling fancy, I’d go to Starbucks and get a couple of pumps of sugar-free syrup to jazz up an otherwise ordinary order.

But whenever I try to add anything like milk, real sugar, syrups, or whipped cream…coffee gets real dicey for me and my diabetes.

Coffee can get real confusing for a person with diabetes.

In other words? I’m at a loss as to how to bolus for things like lattes, mochas, or cappuccinos – let alone any of the crazy, carb-loaded concoctions that you can get at cafes or Starbucks.

As a result of my confusion around coffee drinks and, let’s be real here, my laziness (because I could look up carb counts, but the sugary spike that my blood sugar could experience after having one of these drinks make it not even worth it for me to do research), I tend to drink coffee black. And luckily, I like it that way. But that doesn’t mean that I’m not tempted from time to time – like when the local coffee shop that’s just a half-mile away from my home introduced a winter drink menu with things like an Irish cream latte, eggnog latte, and gingerbread latte on it. I seldom give into the impulse to try those kinds of drinks, but they sounded too good to skip out on.

So rather than have all 3 at once – because I’m not totally reckless like that – I did give the seemingly-lower-carb option a try (the Irish cream latte), while my boyfriend got the eggnog latte. I figured it was the best of both worlds because I could have a fancy drink to myself while also getting to try one of the more sugary options.

And guess what? My blood sugar didn’t spike after I drank it, not even a little bit. I think the secret to my success was being super active all morning long after I got the latte (I was busy running errands and tidying up my home for guests that were coming over later in the day). My insulin intake for the latte, coupled with lots of movement, seemed to prevent any disastrous blood sugars – and I think it also helped that I ordered almond milk in lieu of regular milk to go in the latte. Whatever the actual cause(s), I was just thrilled to learn from this little experiment that I can enjoy specialty coffee drinks after all – probably not all the time, but definitely as an occasional treat, which makes me a happy and well- caffeinated T1D.

Happy New Year from Hugging the Cactus!

2022 will be here in a few short days and the prospect makes my head spin. Where did 2021 go?!

Me, looking comfy as I casually ponder where the eff 2021 went.

As we approach the new year, I’m feeling several different emotions – the most prevalent one being gratitude.

Amid all the chaos of the past year that was filled with so many literal and figurative highs and lows, I can’t help but feel grateful for the many people and experiences that kept me calm in the storm. My family, my boyfriend, my friends, my dogs. The roof over my head. The opportunity to start a new job at a diabetes organization, which in turn reunited me with old friends and helped me make new ones. The chance to travel across the country and go on several weekend trips to closer-by destinations. And as often as I gripe about having so little time to myself, I’m also grateful to have such a jam-packed schedule that keeps my both my mind and body active and well.

With everything in the world feeling uncertain lately (oh, how unnervingly familiar it feels to merely say that), it’s helpful to remind myself of these things that make life so rich for me. I’m looking forward to carrying this reminder into 2022 with me and likewise, I can’t wait to continue connecting with the greater diabetes community in the coming year.

Happy New Year, Cactus Huggers – may you be healthy, well, and happy in 2022 and beyond!

Carbs, Christmastime, and a Conundrum

I can’t believe Christmas is just a couple of days away!

It feels like the Christmas season just started, but really, I’ve had visions of sugar plums dancing in my head a whole lot longer than 23 days now.

Not just sugar plums, though. Christmas cookies. Homemade caramel sauce. Spiked hot chocolate. Reese’s trees (and bells, and nutcrackers, and any other shape Reese’s comes in)…

Conundrum: I love baking. I love Christmas cookies. I love tasting Christmas cookies that I’ve baked. As such, the above image of my Irish cream cookies is very tempting to me.

Needless to say, I feel like my sugar consumption is at an all-time high lately, no doubt due in part to the endless array of seasonal treats that seem to be readily available to me. This is partially my fault – I always have a stash of Reese’s in my home, and baking is one of my favorite hobbies (I feel obligated to try my creations before doling them out to friends and family, y’know, for quality assurance purposes). I should know better because I am very aware of the fact that I have little self-control, but said self-control is completely lacking lately.

So my conundrum is: Do I consume all the carbs this Christmastime and just have a “IDGAF” attitude about it? Or do I go ahead and enjoy all the delicious, carbohydrate-laden sweets of the season with minimal guilt?

I think the solution lies somewhere between those two extremes.

I won’t deprive myself of carbs, but I’ll be deliberate in how I go about eating them. I’ll pre-bolus so sugary spikes won’t appear as often in my Dexcom graphs. I’ll look up carb counts when I can. I’ll enjoy things in moderation, eating one treat at a time or sharing with others when I can so my carb intake gets automatically halved. And I won’t stop baking – it’s one of the things that brings me joy in life, so I know better than to cut out that entirely.

Besides, the Christmas season is so fleeting. I should indulge a little here and there and remind myself that it’s not just about the carbs and blood sugar spikes that cookies cause…it’s also about the holiday traditions associated with cookie baking and the memories made when eating them (and all the carbs). That fuzzy feeling makes me feel a whole lot better about my carb conundrum; coupled with my plan on how to approach carb consumption, I’m actually looking forward to eating many more Christmassy confections over the next few days.

Diabetes Hurts (Sometimes)

“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.

Out of Site, Out of Mind

I knew I wanted to write a blog post about how I forgot to change my pod last week, and I knew I wanted to give it some sort of clever title…

…so out of site, out of mind is what I came up with. After all, my pump site was completely out of sight for me, which is one reason why I forgot it.

You’d think that it’d be impossible to forget about the device I have to wear 24/7, but it’s the sort of thing you get used to pretty quickly.

You’d think that after being on the Omnipod for almost 7 years, I’d never forget that I have to change my pod every 3 days. But just like I sometimes forget to reply to a text message or take a load of laundry out of the dryer, it slipped my mind the other night until just before I went to bed.

That’s when I was faced with a choice: Should I change the pod right then and there before I went to sleep, or let it expire overnight and change it first thing in the morning?

There were pros and cons to each. If I changed the pod before bed, then I wouldn’t have to worry about a screaming pod waking me up in the wee hours of the morning (well, I would if it failed, but the chances of that happening were small). But if I waited until the morning, I would ensure that the 30+ units of insulin still left in the pod would get used up as much as possible. It would also mean that I could push back my regular pod change by one whole day, which sounded appealing – until I remembered that it would mean that I’d have to change my pod on a Saturday when I’m double-hosting family, then friends, at my home.

So I sucked it up and changed my pod before going to sleep, knowing that in an hour and a half it would go off to remind me to check my blood sugar (to make sure that the pod was functioning properly), but feeling okay about this because I’d much rather deal with a gentle reminder over an aggressive malfunction alarm.

Now to the whole reason why I decided to share this seemingly insignificant anecdote in the first place: This is just one diabetes-related decision that I had to make on this particular day. I can’t even tell you how many other choices I had to make prior to this concerning which foods I ate, how much insulin I took, when I exercised, when I ate my meals, and so forth.

Diabetes is a disease defined by decisions. Fortunately, this one about when to change my pod was an easier one to make…but unfortunately, there are many others that are much more difficult. And I think all people with diabetes deserve goddamn decision-making trophies because of the funny conundrum of having no choice but to live life by making decisions.

My Top 10 Tips for Managing T1D at Family Gatherings

A version of this blog post originally appeared on Hugging the Cactus on November 23, 2017. I’ve decided to share it again today (with some slight updates) because I felt like I needed a reminder as to what a successful game plan looks like heading into a food-centric holiday! Read on for more…

Holidays that are centered around gratitude and eating…what’s not to love? As much as I enjoy the holidays, though, I can’t quite say that my diabetes feels the same about them. Fortunately, I’ve developed a bit of a game plan as to how to handle diabetes when family feasts come rolling around – here are my top 10 tips for making the most of eating-centric holidays with diabetes!

The only thing missing from this picture is the massive pre-bolus that I’ll likely be taking before sitting down at a major meal.

10) Don’t skip breakfast in the morning. This helps me avoid over-eating when dinner is served later in the day. Breakfast doesn’t have to be a huge thing, maybe just a bowl of oatmeal or a piece of fresh fruit – anything that will sate me for a few hours.

9) Volunteer to prepare a couple of dishes. If I’m going somewhere for the feast, I like to know what my host needs me to bring. If I have creative control over the dish, I prefer to make it something that I know won’t be too hard on my blood sugars, such as a side of veggies or a sugar-free dessert.

8) Familiarize yourself with what’s being served prior to sitting down for the meal. Before my family sits down to eat, I like to know what exactly we’re being served so I can plan accordingly. I can usually get away with strolling around the kitchen to get an idea, but sometimes the chef (my aunts or my mom) kick me out while they finish cooking dinner!

7) Don’t feel pressured to try everything. It all looks and smells so good, but I have to remind myself to use some restraint when piling my plate with food. I’ll add staples like turkey and green beans (both of which are low-carb!) and take smaller portions of the heavy things, such as stuffing and potatoes.

6) If it’s necessary, extend my bolus. This all depends on what my blood sugar is before the meal, but sometimes, I’ll extend it in order to prevent lows or highs post-feast.

5) Check my blood sugar often. I’d rather have an idea of where my blood sugar is headed than leave it to chance and guess incorrectly.

4) Go for a walk or organize another outdoor activity. The weather doesn’t always cooperate with this idea, but I’ve found that dragging my cousins on a 20-minute walk after eating helps my blood sugar and provides us all a chance to hang out while our uncles take control of the TV and our aunts chitchat over cups of coffee.

3) Wait a bit before having seconds or starting on desserts. I try to indulge a bit on the sweets, but I know that it never works out for me if I help myself to desserts too soon after consuming the main course. So I avoid the temptation by staying busy after eating dinner – my mom and aunts always appreciate an extra set of hands to assist with clean up!

2) Look up carb counts if I’m struggling to come up with them on my own. Sometimes, I can’t quite determine how many carbs are in a serving of pumpkin pie – I’ll guess too low and end up high, as a result! But I know that there are tons of carb counting resources at the tip of my fingers, thanks to my smartphone.

1) Remember what the holiday’s all about: being thankful! Enjoy the day and time with loved ones! Whether you’re part of a large family like mine, a small one, or choose to spend the day with friends or a partner, just relish it for what you want it to be.

What I Wish People Knew About Life with Diabetes

As National Diabetes Awareness Month speeds by in a lightning-fast pace, I keep finding myself going back to this question: What do I wish people knew about life with diabetes?

My answer to this question changes depending on the kind of day and experiences I’m having with my diabetes. For example, on the occasions that I have a pod failure or my Dexcom loses signal for hours, I wish that people knew life with diabetes is marked by a dependence on technology. When I have several bad low blood sugars in the middle of the night, I wish that people knew life with diabetes means you lose out on a lot of sleep. And the times that it seems like I live at the doctor’s office or spend all my spare time on the phone with insurance companies, I wish that people knew life with diabetes can be a giant (and expensive) time suck.

While there’s obviously a lot that I wish people knew about life with diabetes, I think that I can identify the number one, most important thing that I wish people knew…and that is: life with diabetes is unpredictable. No matter how many years I’ve lived with it, no matter how often I think that I’m doing the right thing in my care for it, it can still prove me wrong all the time. It’s challenging, frustrating, stressful, and draining, and I really wish that people realized how much work it requires to have diabetes. It’s not as simple as counting carbs, injecting insulin, and eating right – it demands mental and physical energy in order to care for it properly, and people living with diabetes don’t ever get a break from that.

I do my best to smile, even when diabetes is at peak unpredictability.

Despite that, I try to smile through it all…because diabetes and its curveballs are a lot easier to handle with a positive mindset. But that doesn’t mean that I don’t wish that people knew how difficult it can be, too.

3 Nighttime Lows in a Row

The night of the first low, I was “good” and treated with glucose tablets.

The night of the second low, I shamelessly treated with a leftover Halloween candy blondie (okay, two of them) that I had made earlier that day.

The night of the third low, I was exhausted. And feeling nothing other than a desire to sleep, I treated with both glucose tablets AND sour patch kids, because my body decided it needed that many carbs in order for my blood sugar to level out for the rest of the night.

By that third night, I was so dang tired. I’d had to go downstairs to get the sour patch kids, and by the time I was done eating them, I couldn’t fathom walking all the way back up the stairs to get into my big, comfy bed. So I just crumbled onto the couch, pulling a blanket over me, and snoozed there for a bit. I probably could’ve curled up into a ball on my carpet and slept just as soundly, even if only for awhile, because I was so spent from being woken up in the middle of the night for the third evening in a row to treat a low blood sugar.

I wish that people knew that diabetes is truly a 24/7/365 condition.

I hate having my sleep – which seems harder and harder for me to get enough of as I get older – interrupted by something as stupid as a low blood sugar.

I hate having to eat in the middle of the night and ruining the minty taste leftover from my brushed teeth prior to bedtime.

I hate that sometimes, the low is bad enough that I get woken up one or two or even three more times in the same night because I’ve got no choice but to consume more carbs.

It seems fitting to write about this – how disruptive my diabetes has been to my sleep over the course of three nights, let alone my entire life with diabetes – during National Diabetes Awareness Month. Because I don’t think the rest of the world really understands that diabetes truly does not have an “off” switch. People who live with diabetes don’t have the luxury of sleeping peacefully without having a single worry about diabetes: It can and will disturb the soundest of sleeps, and it’s frustrating, inconvenient, and annoying every time it does.