Why Backup Supplies are Important to a T1D

“It’s better to have it and not need it, than to need it and not have it.”

Growing up, this mantra was frequently repeated by my mother regarding my diabetes supplies. More often than not, I’d roll my eyes at the saying – not because I was annoyed with her, but because the prospect of carrying extra supplies “just in case” felt very inconvenient. My purse/backpack/overnight bag would already be crammed to maximum capacity, so squeezing in backup needles or insulin was practically impossible. But typically, I’d cave and make it all work somehow, because the fear of not having something essential when I was away from home was strong enough.

I’ve kept up this practice in my adulthood, as overnight travel and increased distance from home have become more common. And I was reminded why it’s a good idea very recently.

I was staying at a friends’ place for the night. They live about 45 minutes away from my house, which isn’t far, but it was far enough for me to want to make sure I had extra supplies. I definitely did not want to have to make that drive twice in one night, and I knew it wouldn’t even be a realistic option, because chances were good that I’d be drinking alcohol – it was game night, after all.

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If you have T1D, always be prepared.

Pizza, beers, and laughs were had, and before we knew it, it was one in the morning. We all headed off to bed, and just as I do every night, I checked my blood sugar before I got totally settled.

I was wicked high – the mid-300s, actually.

I was worried, because I thought I’d been on top of my blood sugar for most of the night. I gave myself an extended bolus for the three slices of pizza I ate, limited my beer intake (too many carbs), and kept a watchful eye on my CGM. While I did know that my blood sugar was climbing, I thought that I was staying on top of it with correction doses. Apparently not.

No matter, I figured. The best I could do was take more insulin, drink some water, and try to relax a bit before bed. I didn’t want to sleep until I knew my numbers were coming down, but I also knew that my willpower to stay awake was fading. So I set an alarm on my phone to wake up in an hour and check my blood sugar again.

When I did, I was 377! I couldn’t believe it. I followed the same process again – bolused, drank water, set an alarm to wake up in another hour – and hoped for the best. But when my alarm blared again at 3 A.M. and I discovered that I was STILL stuck at 377, something told me that there was more to the story here. I lifted up my shirt to check my pod, which should’ve been securely stuck to my belly…except it wasn’t. The end with the cannula was sticking up, revealing that the cannula was not underneath the surface of my skin.

I felt simultaneously pissed off and relieved. I was mad because I’d just changed my pod earlier that day, so it should not have come off so easily. But I was relieved because finally, I had an explanation behind the super-high, super-stagnant blood sugars.

And I was seriously relieved that I’d thought to pack my insulin, a spare pod, and an alcohol swab in my overnight bag.

So there I was, changing my pod at 3 A.M. Far from fun, but it was necessary. I even wound up giving myself an injection with a syringe – yet another diabetes supply that I don’t really need to carry but had stowed away in my kit (just in case) – to ensure that my system had insulin in it to bring my blood sugar back down.

From there, it was a long night (morning!) as I set numerous alarms for the next few hours to wake up, check my blood sugar, and bolus more as needed. I couldn’t rely on my CGM for readings, because guess what? It got torn right off my arm as I tossed and turned in bed. Go figure, right? (I didn’t have a backup sensor because the CGM is one thing that isn’t exactly necessary. It makes life a helluva lot easier, but for a single overnight trip, an extra sensor wasn’t needed.)

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What a long night…

I probably only got three hours of sleep that night, and I was pretty damn defeated looking at a shitty CGM graph the next day. But you know what? The whole incident serves as a stark reminder that it’s important to ALWAYS have backup supplies: You never know when you might depend on them.

Diabetes and Honesty: Don’t be Afraid to Speak Up

It’s said that ignorance is bliss…but as I recently (re)learned, ignorance can cause fear and misunderstanding in times that it’s better to be honest.

The lesson was hammered into my brain after fibbing to my significant other about my blood sugar a couple of weeks ago. It was a Saturday night, we had spent the day moseying around the city, and we were looking forward to a chill evening doing a whole lot of nothing. We decided to get into a collaborative card game while we watched the Red Sox play against kick the Astros’ butts.

As we set up the game, I knew my blood sugar was high. But I ignored it, figuring that my insulin would kick in soon and bring my levels back down to normal. I should’ve known that it wouldn’t be so simple (is ANYTHING ever simple when it comes to diabetes?) because after an hour and a half, no progress was made on the BG front and my mood was worsening as a result of it. My partner, ever-attentive, asked me more than once why I seemed so cross. He even directly asked if it was related to my blood sugar, and I…didn’t exactly tell the truth.

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Okay, I lied! But it was only because I didn’t want him to worry. I was already worried enough for the two of us. And I thought I was doing the right thing here. I really, truly thought my blood sugar would come down in no time at all, and I hate, hate, HATE using anything related to my diabetes as an excuse for my behavior…so rather than admit what I was going through, I brushed it off, which only exacerbated everything. Not my proudest moment.

As the night went on, we got deeper into the game and my blood sugar climbed higher. I was beyond agitated at this point, and my heart certainly wasn’t into the game. Besides neglecting to open up about my blood sugar problems, I’m also ashamed of my lack of interest in the card game. In hindsight, the healthy thing to do in this situation would’ve been to have faith in my treatment decisions and try to enjoy myself in the meantime. But I was too caught up in the negative mindset that the high blood sugar put me into, and unfortunately, it marred an otherwise perfectly nice night.

The next day, when my blood sugar situation was back to normal, I came clean to my boyfriend. I think he was a bit irked with me for hiding the truth from him, but I also think that he understood a little more after I explained why.

In this case, diabetes won…at least it did in that brief moment in time. Between ruining my mood and causing a mild rift between me and a loved one, I felt pretty damn defeated by it. In the long run, though, I think this experience will be more of a boon than a bane, because it reinforced the notion of honesty being the best policy – even when it comes to diabetes.

 

A Diagnosis of LDM

What is LDM? According to my mother, it stands for Lovely Diabetes Mystery. The “lovely”, of course, is sarcastic, whereas the “diabetes” and “mystery” relate to a random, unforeseen diabetes medical incident – which occurred to me on Sunday, October 7th.

I woke up that morning with some abdominal pain. I rolled over soon after waking to check my CGM, and was startled to see that I’d be in the 300s for most of the night as I was sleeping. I quickly bolused for it using my PDM, and shut my eyes, hoping to get some more rest and to wake up again without stomach discomfort.

No such luck. About an hour later, I opened my eyes and looked at my PDM again, and I had barely come down. I tested to confirm, and sure enough, I’d only gone down a few points. I was worried, which was exacerbated by the weird nausea I was having. Could this be a sign of something more serious?

My mother convinced me to do a manual injection with a syringe. We both figured that that would help bring my numbers down faster, and that if I started coming down quickly, then it could mean that the pod I had just applied the day before was not working properly. We agreed that I should probably change it, to err on the side of caution.

However, I didn’t get to change my pod until much later in the day. That’s because of what happened soon after I took my manual injection.

I went to use the bathroom, certain that the churning of my stomach meant that I was about to be sick. I was standing in front of the toilet when I started sweating – profusely. On top of that, my vision went all fuzzy, and I felt totally disoriented. I knew something was wrong, so I called out for help.

My mom raced into the bathroom to find me seated on the floor, dripping in sweat. I placed myself on the floor deliberately because I was worried I might pass out and injure myself. She started cooling me down with a wet facecloth, and searched through the drawers to find a thermometer to check my temperature. She also grabbed her test kit and my lancing device, because naturally, we both assumed that perhaps my blood sugar was dropping rapidly from the insulin injection, and it might be a hypoglycemic event.

But when we checked my blood sugar, I was still in the high 200s. I was pretty scared at this point and just wanted the sweating to stop and for my vision to clear. That’s when my dad came in and made the executive decision to call an ambulance for me.

A police officer, three firefighters, and two EMTs showed up my house. I answered questions in my confused state. My vision restored and the sweating stopped, but I still felt weak and woozy. They put me into the ambulance. I was given an IV bag and medication for the nausea. It was my first time in an ambulance and it was not exciting, just weird. I didn’t like riding backwards or experiencing the twists and turns along the way.

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I was bored in the hospital; so naturally, I created this boomerang of my IV drip.

We arrive to the hospital. I’m whisked away into the ER. I answer a series of questions from various medical students and nurses and doctors. They draw blood for tests. I give them a urine sample for more testing. I keep on explaining the concept of my OmniPod to each one of them. No one seems to have seen it before, besides one med student who has a sister who works for Insulet. Small world!

We monitor my blood sugar closely. My tests come back normal. I eat my first foods for the day around 2 P.M.: sugar-free jello and two hard-boiled eggs. Yum…

I get an injection of insulin at the hospital. We don’t have a vial of Humalog with us – it was the one thing we forgot to grab from the house. But my dad drives home to retrieve it so I can change my pod at the hospital. My mom does it for me. I feel helpless.

The old pod comes off and we notice a definite bend in the cannula. Okay. One thing explained. I wasn’t receiving my full insulin dosages due to the bend, and unfortunately, I have no way of knowing how much insulin I was truly receiving. All I know is that it wasn’t enough, and that’s why I was running high.

I receive a diagnosis: vasovagal syncope, or pre-syncope. It’s explained to me, but I still don’t really get it. So I text my best friend, who is also a nurse. She tells me that it’s very common and can be triggered by a variety of things. The pre-syncope aspect makes more sense to me, seeing as I never truly passed out.

I’m discharged and feel so very tired. It was a long day. The following days are filled with follow-ups and message exchanges between myself, my endocrinologist, and my primary care physician. My healthcare team and I think that we come up with a plausible explanation for the hullabaloo: My body knew something was wrong. It knew that my blood sugar was abnormally high, and it knew to send signals to me that I needed to take care of it. Hence, the abdominal pain. My dehydrated state exacerbated things, and when I started sweating and lost more fluids, it was a lot for my body to experience.

Sheesh. What an ordeal. Like any diabetes-related experience, it taught me a lot, but I certainly don’t want anything like that to happen again. Shout-out to the healthcare professionals, but especially my parents, for taking damn good care of me throughout the whole episode. You’re the bomb diggity.

What’s Worse than High or Low Blood Sugar?

High blood sugar and low blood sugar are both incredibly draining. One turns me into a grump who can’t drink enough water and the other turns me into a shaky, sweaty, slurring hot mess who can’t string a simple sentence together. Needless to say, neither situation is fun.

But there’s one even worse than that: the roller coaster situation. It’s best illustrated using a CGM graph like this:

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I added the little graphic of psychedelic teddy bears riding a roller coaster – it seemed to illustrate my point well. 

It’s what I use to describe blood sugar that won’t level out to my target range. It just goes up, up, up, and falls dramatically – just like an actual roller coaster – once the high is corrected. And boy, does that drop down take my breath away.

But then wait, there’s more! After the crash and the inevitable need for lots of sugar (and fast) is satisfied, the blood sugar soars back up again, leaving me frustrated as I take another bolus to fix it…

…only for it to happen again. And again.

Get me off this ride!

When I’m stuck on these blood sugar roller coasters, it’s mentally and physically exhausting. I question my every action over and over again as I try to do the “right thing” and make my numbers level out, only to end up berating myself for getting into this situation in the first place.

I’ve never been a fan of roller coasters in real life – they make me a combination of anxious and nauseous that I’ve dubbed “nauxious” – but I’d rather ride one that goes upside down than experience the T1D roller coaster situation again any time soon.

How I Learned the Importance of Carb Counting

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…

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…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.