5 Confessions of an Imperfect T1D

Newsflash: I’m not a perfect T1D. Shocker, I know!

Every so often, I like to remind myself that perfection is impossible, especially when it comes to my diabetes. But all my life, I’ve yearned for it in a hopeless pursuit. I agonized over essays before submitting them for grading in high school and college. I have a penchant for baking, which requires precision in order to be successful. And I’ve done virtually everything I can do to get and maintain “perfect” blood sugar levels at all times. Which of those named feats sound the most fruitless?

So to help remind myself that T1D shouldn’t be about perfection, I decided to compile a list of “confessions” about my not-so-perfect T1D tendencies. I think it’s important for me to share them here, since we are in an age of showcasing diabetes “wins” over “failures”: Straight, in-range CGM graphs, A1cs below 6%, balancing a social life with a career and family and other responsibilities ON TOP OF diabetes…these things should be celebrated, but we also shouldn’t forget about the lessons we learned along the way to help us get to these points of dia-winning. Plus, projecting an air of perfectionism at all times is just absurd and we all need a reality check sometimes, myself included.

The Missing PDM (and the Panic That Followed)
Remember Confessions of a Teenage Drama Queen? This post is like that except with more diabetes.

Here are my five confessions. Which ones can you relate to?

5. Sometimes, I conveniently “forget” that I have diabetes and snack freely on food that I shouldn’t, or that I should bolus for. It’s a bit irresponsible of me, but if I notice that my blood sugar is between 90 and 140 or so, I help myself to a little snack from the kitchen. It’s never anything too big; for example, I just ate a mini dark chocolate peanut butter cup because I noticed my blood sugar was 132. But it is almost always something that will make my blood sugar go up a bit, and I need to stop fooling myself into thinking that these snacks are “free”.

4. Until recently, I never had a stash of ketones test strips (out of pure laziness). Ugh, such a diabetes no-no. Someone slap me on the wrist. In my teenage years, though, I found that we’d stock up on ketones strips only for them to expire before I could use, well, any of them. So I thought to myself, why bother buying them if I can’t even get any use out of them? Luckily, I came to my senses just a few weeks ago and realized that it’s always better to be prepared, even if it means spending a few extra bucks unnecessarily.

3. Organization of my diabetes supplies is…lacking. On Instagram, people are constantly showing off their beautifully organized diabetes drawers and bags and pantries…and I have serious envy of their carefully curated supply stashes. I’d describe mine as something more like an organized mess. I’ve got my Dexcom G6 sensors stacked haphazardly in the closet because they don’t fit in my set of three plastic drawers that hold everything else in a total nonsensical manner. When it comes to diabetes, I’ve got higher priorities than organization, even though I do appreciate tidiness in general.

2. Self-control is not a concept that exists to me when my blood sugar is low. I know some people with diabetes who have restraint when their blood sugar goes low: They treat it with around 15 grams of carbohydrates and wait about 15 minutes to make sure that they’re headed in the right direction before doing or eating anything else. Wellll…that is not me, especially in cases when my blood sugar goes low in the middle of the night. I’m not proud of it, but every once in awhile, I’ll roll out of bed (no matter how early or late it is) and head straight to the kitchen to treat a low with cereal and peanut butter and cookies and anything sweet I can get my hands on. It’s not pretty.

1. I take extreme care when it comes to using my diabetes supplies in a sanitary and recommended way, but if there’s one thing I couldn’t care less about, it’s lancets. Ideally, lancets are disposed of and replaced on a routine basis. But…I just…don’t do that. Honestly, I don’t really remember the last time I changed my lancet. I definitely do it at least once a month (which might make some doctors squirm) and usually before I travel somewhere. I don’t know…when it comes to diabetes, there’s so many other things that take a much higher priority in my book. Plus, at least I do change my lancet multiple times throughout the year – I know of some other T1Ds who have ‘fessed up to doing it ONCE a year, on January 1st, and that’s it! God love ’em. I know I do for their blatant honesty!

The Missing PDM (and the Panic That Followed)

12:55 A.M. I wake up from a deep sleep to the sound of my CGM going off: My blood sugar had just gone above my high threshold. I silence the alert and reach for my PDM so I can give myself a small correction bolus. But it’s not in its usual spot on my nightstand.

12:56 A.M. I tumble out of bed and wander into the living room. Surely, I left my PDM somewhere out here. I dig through my backpack, check the coffee table, and look for it on the counter tops in the kitchen. I can’t find it in any of those locations.

12:57 – 1:00 A.M. I’m searching all over the apartment, like a mad woman now. I’m checking in between couch cushions, inside cabinets, and underneath furniture at a lightning-fast pace. My heart is beating rapidly as I wonder where the actual eff my PDM could be. I shake my sleep and bemused partner awake, fill him in on the situation, and enlist his help in the search. He only has a vague idea of what the PDM looks like (I have too many devices for him to be able to distinguish the difference between them) and isn’t much help, but he does offer a tip: Check the car.

1:00 – 1:03 A.M. I run down four flights of stairs and into the parking garage where my boyfriend’s car is parked. Maybe it fell out of my backpack on our way to trivia at a restaurant earlier that evening? I rifled through the passenger seat, checking underneath it and even in the backseat, but no luck.

The Missing PDM (and the Panic That Followed)
A post all about a terrifying 20-minute period in which my PDM was…MIA.

1:04 – 1:07 A.M. I practically break out in a cold, panicked sweat as I contemplate the possibility that I took my PDM out at the restaurant and it’s still there. I knew for a fact that I hadn’t used my PDM for anything since I’d eaten dinner hours before at the apartment, but it was worth calling the restaurant to see if they’d found anything. I called, knowing the odds of anyone answering at this hour were slim…only to be proven wrong! I was relieved when a man picked up, and I hastily explained to him the situation. I provided a description of my PDM and waited with bated breath while he searched the area in which my team had sat to play trivia.

1:08 – 1:11 A.M. Crushing disappointment crashes over me like stormy ocean waves as the man tells me, after a prolonged search, that he couldn’t find my PDM. I felt like I’d been punched in the gut. Numbly, I recited my contact information over the phone, thanked him for his time, and hung up. I was beyond panicked now. My boyfriend was asking me about a contingency plan and all I wanted to do was scream at him, my OmniPod IS my contingency plan!!!!!!!! I start formulating a plan to drive to the restaurant first thing in the morning to search the premises myself, as well as call Insulet and beg them to overnight a new PDM. Maybe I would just have to stick to manual injections the entire next day, though I had no idea what I’d do about long-acting insulin since the Lantus sitting in the fridge expired months ago.

1:12 – 1:14 A.M. My mind was in overdrive and I refused to give up right then and there. I was absolutely certain that I hadn’t taken my PDM out since my dinnertime bolus. But since I did go out that night, there were really only one of three places it could be: the apartment, the car, or the restaurant. It definitely wasn’t in the apartment, which I’d searched so thoroughly that it looked like a tornado had whipped through it, but it was worth searching the car one more time…just to be positive.

1:15 A.M. I make my way back down to the parking garage. I turn my cell phone’s flashlight feature on and scan the seats carefully, peeking under and over and around every possible surface…I didn’t see a damn thing. Defeated, I turned to close the passenger side door when, out of the corner of my eye, I saw a gray object wedged between the door would be when it was slammed shut and the seat. It was practically camouflaged, that’s how well it blended with its surroundings. It was…MY PDM!!!

“Relieved” doesn’t begin to describe how I felt. “Elated”, “victorious”, and “exhausted” are all better descriptors. I ran back up to the apartment, told my boyfriend, and breathed a deep sigh, glad that the entire episode had a happy ending. We settled back into bed, though I lay there staring at the ceiling for a long time afterwards. If I hadn’t double checked the car, my boyfriend would’ve just driven off to work the next day, both of us oblivious to the fact that my PDM was there. I would’ve wasted time trying to track it down at the restaurant and calling Insulet, and there probably would’ve been a lot more frustration felt and tears shed.

But thank goodness it didn’t come down to that.

The end results of the missing PDM episode was 1) losing a decent night of sleep, 2) feeling an urgent need to establish a better contingency plan, and 3) feeling an even more pressing need to install a tracking device in that damn PDM, stat…because that thing is just too easy to lose.

What the…BEEP!

Beeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep.

A long, unfaltering, high-pitched beep was emitting from something in the pharmacy. I saw heads turn in the vicinity as fellow customers, as well as myself, tried to identify the source of the noise.

I gulped. Could it be coming from me? Did my OmniPod fail right then and there as I was picking up my prescription?

WHAT THE...BEEP!
I wish an image could accurately portray just how annoying the beeping sound can be.

I anxiously dug through my backpack, my fingers searching for my PDM, until they met it. I pulled it out and prayed that all was well, that my pod was working as it should be.

A quick press of a button, and…I confirmed that my PDM and pod were, indeed, working properly. Simultaneously relieved yet still bemused by the noise, I put my PDM away while I scanned the area around me, determined to find out what was making a sound so similar to my OmniPod.

What was the culprit? Well, you know those little plastic boxes that drugstores encase things like razor blades in, to prevent theft? That was the thing emitting a blaring beep, in this situation. And like I’d initially assumed, it was coming from me: I was holding one of those boxes in my hand (because I was about to purchase razor blade replacement cartridges), and I’d unintentionally obscured the sensor that triggers the alarm to go off.

Whoops.

While it was nice to know that my insulin pump hadn’t failed on me, it was still somewhat embarrassing to discover that I was the cause of the ruckus, anyways.

Lesson learned: Keep those protective plastic cases in plain sight so I won’t have to misidentify what the beep is coming from.

The Curious Case of Rotten Insulin

I spent half of the month of August high.

NOT THAT KIND OF HIGH.

I’m talking about blood sugar here, people.

And I’m not talking about scary-high levels. I’m just referring to levels that are higher than I’d like – between 160 and 200. And I’d stay stuck right in that range, even after bolusing quite aggressively.

I chalked it up to stress – life has been a little unkind to me this summer. I also blamed it on making less-than-healthy food choices, and questioned whether I needed to seriously start thinking about taking Metformin again (even though I had a shitty experience on it).

In other words, I took the brunt of responsibility for my highs. I was angry with myself for letting my diabetes get out of my control, and was just starting to accept responsibility when it hit me that it might be something other than my body rebelling against me at play here.

As it turns out, I should’ve suspected an outside factor from the beginning. That’s because my insulin had, somehow, gone bad.

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The vial in question…it caused me a boatload of stress.

I’m still very confused about how or why it happened. My insulin had an expiration date that was like, 2 years from now. The contents within the vial were totally clear – discoloration would’ve indicated an issue – and everything about this vial of insulin looked completely fine.

It was, and still is, an utter mystery to me as to how or why the insulin spoiled.

If nothing else, the case of the rotten insulin made me wonder…why hasn’t anyone developed strips that can check the effectiveness of insulin yet?

Can somebody please get on that (and give me partial credit for helping to spark this genius idea)?

Doing Everything Right and Still Getting it Wrong

One of the most frustrating things about having diabetes is feeling like you’re finally understanding it, perhaps even mastering it, only for it to lash out at you and make you feel like you don’t know shit about it.

It’s when you do everything right – check and treat accordingly, eat properly, exercise sufficiently – and still get it wrong when your blood sugars don’t behave the way they should.

I really hate when this happens, but I loathe when it happens on vacation…which is exactly what happened to me last week when I was in Maine for a few days.

Things started going awry shortly after I woke up (if only I knew then that I was in for a DAY!!!). I ate breakfast and my blood sugar swiftly started to rise. But I didn’t panic, because that’s what I wanted to happen. We’d be walking all around town for part of the morning and most of the afternoon, so I wanted my blood sugar to be on the higher side so that my chances of dropping dramatically in the heat were lower. I made the right call – soon after we got downtown, I noticed a diagonal down arrow on my Dexcom app. Things were headed in the right direction…or so I thought.

Not long after I spotted the diagonal arrow, I started to feel a little low-ish. Not super shaky or anything, but just a bit disoriented. I decided to pop into my favorite candy store to fill a small bag with treats so I had something sugary to munch on that would prevent a bad low blood sugar.

Those were mistakes number one and two…not consulting with my CGM again before eating candy, and going to town on it because it was CANDY and it tasted delicious.

Doing Everything Right and Still Getting it Wrong

Within a half hour, I was rising up, up, and up. I took a small amount of insulin to correct it, not wanting to be too aggressive and risk a real low. But as I walked around the amusement park with my boyfriend and his family, I just wasn’t coming back down like I thought I would. I lingered in the mid-200s for much of the early afternoon, and by the time we stopped for lunch, I was rage-bolusing to bring my numbers down faster. I even chose a lower-carb lunch option in the hopes that it’d stave off another high blood sugar, but nope, the BG gods were not in my favor that afternoon. As we moved from the amusement park to a brewery (a drastically different change in locale, I know), I bolused once again, and then noticed that the batteries in my PDM were low.

And that actually wasn’t a problem, because I was prepared enough to have spare triple A batteries on me – thank goodness! I took the old ones out, popped the new ones in, and waited for my PDM to come back to life. And it did…but it asked me to input the month, day, and year.

Dammit. THAT’S never a good sign. I entered the information and the system accepted it, and then my pod failed immediately after, which meant that I had to ditch the brewery and the group of people that I was with to get back to the house we were staying at as quickly as possible to put a new one on.

It doesn’t get much more irritating than that.

(Later, I discovered that my PDM’s internal battery was going, and that this behavior would occur every time I replaced the triple A batteries. Needless to say, I’m awaiting a new PDM from Insulet, because it’s just not smart to continue using an aging PDM.)

By the end of this day of turbulent blood sugars and unpredictable medical device malfunctions, I was mentally beat. I felt like I’d been thrown into the roughest of ocean waters and forced to tread water for hours in order to keep my head above the surface. It’s exhausting to know that, when it’s all said and done, I was really trying to do the right things and take care of myself. I was SO DANG PREPARED with those extra triple A batteries, for goodness’ sake! But man, diabetes…just when I think I know it better than anything else, it throws me for a loop and I remember a saying from Professor Mad-Eye Moody of the Harry Potter series (of course I’m talking about Harry Potter again, don’t act surprised): CONSTANT VIGILANCE. I’ve got to be aware of my diabetes at all times. I’ve got to know how to react and when so that my diabetes will remain in my charge – not the other way around.

My Low-Carb Baking Fail

Ever since I was old enough to be trusted in the kitchen, I’ve loved baking everything from cupcakes and cookies to cheesecakes and breads. There’s so much I enjoy about baking: measuring out ingredients so satisfyingly precisely, smelling sweet aromas waft from the oven, and naturally, sampling the tasty final products.

But this hobby of mine has been a bit hazardous at times, seeing as just about every recipe I’ve ever followed has been far from low carb. Mainly, this was due to the fact that I never really had low-carb recipes on hand; rather, I was following tried-and-true, blue-ribbon-winning recipes from my mother’s collection of cookbooks. Plus, I figured that family and friends would be more willing to try baked goods that were made from “real” ingredients, not artificial sweeteners or alternative flour mixes. There was never a reason why I wouldn’t be able to try my creations, either – that’s why I had insulin, of course.

Now that I have a kitchen of my own to experiment in, though, I find my interests turning to lower-carb cooking and baking. I don’t follow a low-carb diet, but I will occasionally cut carbs here and there to see whether my blood sugars benefit from it and to find out if my taste buds like it.

Besides my lack of experience, I was hesitant to try low-carb baking because it seems like the core ingredients needed for most recipes are so hard to find…and expensive! Coconut flour, xanthan gum, and erythritol aren’t exactly the most common items on the typical grocery store’s shelves. But thankfully, I am fairly close to an Aldi supermarket, where I’ve had incredible luck finding things that are priced significantly cheaper compared to other grocery stores. So, after a couple of slowly rotting bananas on my counter top inspired me to search for a low-carb banana bread recipe, I gathered up my low-carb baking supplies on a trip to Aldi and set about baking my first keto-friendly banana bread.

My Low-Carb Baking Fail
Maybe one day, I can make low-carb cupcakes that taste good AND are as pretty as the ones above.

It did not go as expected. I intended on baking two breads, seeing as the recipe called for one banana per loaf and I had two to be used. The actual process of making the first loaf of bread was actually very straightforward – mixing dry ingredients, then wet, then combining all of them together. The bread had to go into the oven at 350 for an hour, and when it finally was done, it looked totally normal and even tasted pretty good. The walnuts I’d mixed in added the perfect crunch and helped the banana bread taste like the “normal” kind.

So I felt fairly confident as I started to make the batter for the second loaf. The only difference this time was that I added dark chocolate chips, which I think are the perfect complement to banana bread. I even dotted the top of the bread with the chips in a pattern to add a little extra flair.

I knew something was wrong immediately upon taking the bread out of the oven one hour later. The chocolate chips I’d artfully arranged on the top had disappeared. WTF? It only got worse when I removed the loaf from the pan…because half of it stuck to it. That’s right, half of my banana bread was not salvageable, and the other half that came out was looking pretty damn ugly.

The taste? It was fine…not great, though. The chips had melted into the dough in an unappealing way. The bread itself seemed less like a banana bread and more like a weird banana-chocolate chip mush. It was definitely not the outcome I wanted. And no, I did not take a picture of the fail…I didn’t want the reminder that it was a bit of a hot mess.

Does this mean I’m done experimenting with low-carb baking? Absolutely not. I’ll take a little break from it for now and search for new, promising recipes at another time. But one thing I’ll do for sure the next go-around? I won’t get cocky and add any mix-ins…unless they’re specifically called for in the recipe instructions.

 

That “Thing” on my Arm

“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.

IMG_2634
THIS is the sticker I should’ve been wearing that night…keeps things much more simple.

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.