An Interview with my Diabetes

Diabetes does not have a life, a voice, or a soul. But many people with diabetes, including me, tend to characterize it like it has human emotions and reactions. “My diabetes is so misbehaved today!”, “Ugh, my diabetes hates when my stress levels get too high”, and “Oh, exercise makes my diabetes very happy!” are among the sentiments that have been said countless times, in a variety of ways, by tons of people with diabetes.

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It shouldn’t be surprising that my diabetes, personified, is a cactus. 

So I decided to take it a step further with this blog post and imagine myself conversing with my diabetes…actually, it’s more like an interrogation. There are so many questions I’d like to ask my diabetes so I could maybe, hopefully understand it better. And these are the answers that I can see myself getting in reply.

Me: Hi, diabetes. Wow, 22 years with you and we’re finally just getting to talking now. What’s it been like to grow up with me?

My diabetes: WELL, it’s been a TRIP! Time flies when you’re having as much fun as me, wreaking absolute havoc in your life!

Me: Um, that’s kind of rude. But accurate, I suppose. And it leads to my next question: Why are you so temperamental? Like, one day you’ll be swimming straight in between the lines of my CGM graph…and the next day, I do and eat the exact same things as the day before and you go haywire.

My diabetes: Biiiiiitch, that’s just because I like to keep you on your toes. And I CAN go nuts whenever I want, so why the hell not?

Me: Whoa, relax. No need for the name-calling –

My diabetes: I’ll do what I want! See, look! Your blood sugar is going up RIGHT NOW just because you’re getting all flustered over this interview! Hee, hee, isn’t this fun?

Me: Thanks a lot! Whatever, I’ll just take a bolus –

My diabetes: You’re gonna need a whole lot more than that! 1.5 units to take this 250 down? That’s hilarious. So cute of you.

Me: WHY YOU LITTLE – *lunges for “my diabetes” as if it’s a physical object I can take into a chokehold and strangle, Homer Simpson style*

*Record scratching noise*

That, my friends, is where this totally made-up interview would definitely be cut short because I imagine my diabetes as nothing other than the petulant asshole that it seems to be lately. I’m dealing with a lot of stress lately, and my diabetes is punishing me with plenty of high blood sugars and sluggish responses to my fast-acting insulin.

It’s extremely annoying, but I will admit that writing this fictional interview with it was a little cathartic.

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My Diabetes Hates Weddings

So basically everyone in my life right now is engaged, or on the fast-track to getting engaged.

And that’s awesome! No, seriously, it’s an exciting time for a lot of my family and friends. And I’m happy to be part of it all because I like going to weddings. Who doesn’t love to celebrate love?

Well, I can tell you what doesn’t love to celebrate love…MY DIABETES.

My diabetes effing hates weddings.

My diabetes hates weddings SO much that I’ve yet to go to one where it doesn’t act up in some way.

My New PDM (1)

I was naive enough to think that it would actually be a good diabetes day during the last wedding I attended. And it was, for the most part: I woke up, had a Dunkin Donuts sandwich for breakfast, got dressed and made-up. I showed up for the ceremony with a slightly low blood sugar that was swiftly corrected with a mini box of raisins (oh, if only I knew how many more I’d consume that night…).

I was fine, right through the cocktail hour and the start of dinner. But that’s where the troubles began. You see, there weren’t many passed hors d’oeuvres during the cocktail hour, and I could’ve really used some because I hadn’t eaten anything besides the sandwich and the raisins all day long. By the time dinner started, I was ravenous and basically shoved anything within arm’s reach into my mouth. This included a lot of cheese, meats, and pieces of flatbread.

If I’d actually been thinking about how my blood sugars usually respond to slow-acting carbs in things like flatbread, I might’ve actually wound up okay. But over the course of the next several hours, as wedding guests were whooping it up on the dance floor, my blood sugar was making a slow and steady climb up into the 300s! When I finally realized this, I started taking correction boluses that, apparently, were far too aggressive…because when I finally ended the night in my hotel room around 1:30 A.M., I was in the 70s. And dropping.

My lowest blood sugar was 43 that night. I ate multiple packs of raisins, 5 or 6 glucose tablets, a FiberOne bar, and half a pack of peanut butter crackers. All between the hours of 1:30 and 4 in the morning. It was exhausting. I was tearful and sweating so badly at one point that it looked like I had just come out of the shower. I even wound up sending my sleepy boyfriend down to the lobby at one point to buy me an orange juice, because I was running out of low blood sugar remedies. I drank half of it and was relieved to see my CGM showing, at long last, a diagonal up arrow. I couldn’t believe that I’d just spent the last few hours hovering below my “low” threshold on my CGM, but I didn’t waste any more time thinking about it – I was extraordinarily tired and happy to finally go to sleep.

But now that I’ve had time to think about it, I’ve realized that I need a new strategy for myself and my diabetes when it comes to weddings. I’m going to be my cousin’s maid of honor next month, for goodness’ sake, so I want to do everything I can to ensure “decent” (i.e, blood sugars under 200 but over 80) for the special day.

A key to success, I think, will be regularly scheduled meals and making sure that I avoid an empty stomach at all costs.

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.

The Hellacious, Headstrong High

There’s lots of different “kinds” of high blood sugar. There is the type that is self-inflicted due to inaccurate carb counting or insulin dosing. There’s the sort that can be blamed on technological error – an insulin pump failure or a cannula kink, for instance. And another kind is linked to illness, when a cold or other sickness prevents insulin from working efficiently, thereby stopping blood sugars from coming down to normal levels.

And then there’s the type of high blood sugar that simply can’t be explained. It’s high for seemingly no goddamn reason, and it’s the most frustrating high of them all.

That kind of high is also the kind that takes what feels like forever to come down.

I experienced this after a Saturday of travel earlier this month. I’m fairly accustomed to traveling, especially if it’s a quick trip on a plane or just a few short hours in the car. I say this because I’m almost positive that my hours-long high blood sugar had nothing to do with my travel day…although when it comes to diabetes, nothing can truly be ruled out.

Anyways, I digress. That day involved me heading out of the house at 10 A.M. I drove to the shuttle that would take me to the airport. I got to the airport about an hour before my flight was due to take off. I went through TSA Pre-Check – my first time using the service, which I totally recommend – without any issues. I had enough time to pick up some food for a small lunch, but when I checked my CGM and noticed that my blood sugars were hovering in the 200s, I decided to deliberately pick lower-carb snacks to munch on in lieu of a real lunch. Turkey jerkey and cheddar popcorn weren’t the most filling snacks, but it was something.

I figured that by the time I got on the plane, my blood sugars would be stabilizing. No such luck. I was still in the low 200s. I took one or two more boluses during my quick hour-and-a-half long flight, thinking that I must be heading for a blood sugar crash by the time I deplaned. Nope. I was still running high, even by the time I met my partner by the baggage claim. I raised my temp basal and kept my fingers crossed that by the time we reached the restaurant we were bound for, I’d be coasting down. As we got settled at our table, I checked my blood sugar and felt slightly relieved to see that I was 183. At least I was finally below 200.

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I pushed blood sugar worries out of my mind for the next hour or so. I just wanted to enjoy my meal and my time with my significant other. But as we finished eating and made our back to the car, I couldn’t help but notice the repeated buzzing coming from my CGM. I was rising gradually, well on my way to 300. I tried to not panic and gave myself more insulin. We arrived home and the vicious cycle truly began. For the next three or four hours, I tested and corrected every hour, on the hour. Midway through that interval of time, I changed my pod – perhaps it stopped working properly – and prayed that the new pod would finally bring me back down.

And, spoiler alert: It eventually did. But in the agonizingly long hours I had to wait before my blood sugar was down…I experienced a bevy of emotions. I was mad. I was upset. At one point, I was very technical and rational, going through my next steps both in my head and out loud to my worried partner. He asked me what we should do in the event that my blood sugar was still elevated after a certain length of time, and that’s when I started crying tears of fear and frustration. It all felt so unfair. I was doing all the right things and it wasn’t make a difference. That was a hard reality to swallow. And I couldn’t help but cry harder when he asked me to show him how to use glucagon again (it’s been at least 3 years since he had formal training with my diabetes educator). Part of me felt better, knowing that he was prepared for adverse affects of taking so much insulin to combat a high, but I think I was more focused on and distraught by the fact that he might need to intervene, which was an especially upsetting scenario because I never want to put that responsibility on anyone.

Once I calmed down, I filled a water glass, sat down on the couch, and texted my mother, who is always my T1D sounding board. She reassured me that I was doing the right things, and that I should continue to wait and see what happened. She also advised me that I should be prepared for a crash, because sometimes, it seems like all the insulin kicks in at once when blood sugar drops too quickly/low from a high.

So I waited. I drank water. I showed my boyfriend the app on my phone that simulates glucagon injections – just in case. I played video games. I tried to keep my cool. Before long, it was nearing midnight, and I desperately wanted to curl up in bed. I went through my pre-bed routine, washing my face and brushing my teeth, knowing I’d check my blood sugar for the umpteenth time that night once I was done.

And…it was 153. Better yet, it didn’t go as low as it could have overnight: I dropped to about 75 by 8:30 A.M. All things considered, it was a decent outcome.

The hellacious, headstrong high had finally subsided. I was so, incredibly relieved. And I’m so, incredibly hopeful that I don’t experience a day like that again any time soon.

Rolling with the Punches (and the High Blood Sugar)

I just wanted a nice dinner out on New Year’s Eve…but diabetes – or rather, my diabetes devices – had another plan in mind.

You see, that’s when my brand-new pod decided to stop working properly, leaving me no choice but to deliver insulin via syringe in the middle of a fancy restaurant.

Hence, my unamused expression in the following photo.

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Shooting up like the diabadass I am.

On the one hand, it was irritating to deal with, especially since my malfunctioning pod delivered high blood sugar to me in lieu of insulin. But on the other hand, what else could I do except roll with the punches? After all, it was New Year’s Eve – the final night of 2018. I was NOT about to allow diabetes to ruin it for me.

So I left my frustration and dismay at my high blood sugars at home, where I first realized there might be something wrong with my pod, and did my best to maintain an upbeat attitude throughout dinner. Yes, I was checking my CGM often, but I also remained engaged in conversation with my dinner companions (thanks for that meal, Mom and Dad). I took comfort in the knowledge that I was prepared with a vial of insulin and syringes should my blood sugar stay high in spite of my aggressive boluses. And when it did indeed climb into the 300s, I calmly set down my fork and knife, fished a syringe and my insulin from my backpack, drew up eight units, and rolled up my sleeve to inject right then and there. It felt kind of weird to “shoot up” in the middle of the dining establishment, but I didn’t have much of a choice. I could’ve gone to the restroom, but I knew that the lighting would be bad – at least I could have assistance from my parents by injecting at the table (again, thanks Mom and Dad, the cell phone lights came in clutch in this situation).

As I pushed down on the syringe’s plunger, I vaguely wondered whether any restaurant patrons were watching and wondering what the actual eff I was doing. I was self-conscious about it for a hot second, but I got over it because I knew I was doing what needed to be done.

I was rolling with the punches, high blood sugar and all, because it was the best thing to do for my body and my mind. Plus, I really got to stick it to my diabetes by refusing to let it spoil my night, and to me, that was much sweeter than the cheesecake my mom and I split for dessert.

Testing My Patience: My Struggle Obtaining my A1c

People with diabetes understand the significance of a hemoglobin A1c test well. It provides information about an individual’s average levels of blood glucose over three months. While diabetes is about much more than numbers, an A1c reading is still important because it is one of the main points of discussion between an endocrinologist and a patient. It helps an endo determine how a patient is managing diabetes and can help direct course of treatment.

This test is a big deal, but the actual process of having it done is one of the simpler aspects of diabetes care and management. Historically, all I’ve had to do is show up to my endo’s lab the week of an appointment, write my name/date of birth/insurance provider/whether I’m fasting on a sheet of paper, and walk into the lab to have a small needle inserted into a vein located in my upper forearm. I have zero aversion to needles or blood, so it doesn’t hurt and takes less than five minutes. And it’s always mildly entertaining that every phlebotomist I’ve encountered feels the need to comment on how nice and visible my veins are – one even went so far as to call one of them beautiful! (My response: um, thanks?!)

Since my A1c blood work has been so quick, easy, and (relatively) painless in the past, I was anticipating it to go smoothly once again when I recently went into the lab one Sunday morning. But I didn’t have such luck. Moments after signing in, the receptionist informed me that they could not perform the blood draw. Nonplussed, I politely asked why not. She told me that the lab hadn’t received the orders from my endo. I explained that I would be seeing my doctor in just a few days and that this was a routine part of the process. She did her best to help me by making a couple phone calls to other suites in the medical facility, but it was to no avail. I was frustrated but walked out, accepting that I would need to call my endo’s office first thing the following Monday to figure out why my orders had not been sent to the lab.

Early that Monday morning, I received a message from a nurse who works in my endo’s office. She apologized for my inconvenience over the weekend, and let me know that she submitted orders for lab work for all future appointments for the rest of the year. That was great and all, but I still had to find time to get lab work completed for my upcoming appointment. I couldn’t go on Monday, but I carved out some time in my schedule at work to go back on Tuesday morning.

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The patient’s perspective: too much time spent waiting

I was flustered when I walked into the lab for the second time in three days, because it had taken me twice as long to get there due to local road work. I told myself to relax, it would be done in a couple minutes and then I could head back to work with this task checked off from my to-do list. But…of course it wasn’t, because upon entering the lab, the receptionist told me that the power was down and they would be unable to complete my blood work.

For a couple seconds, I just stood there while I let that sink in. I explained how I was rejected on Sunday and practically begged her, please, isn’t there anything you can do? Despite having access to both my medical history AND the orders on her computer, she said no, but I could try one of the two other “near” lab locations. Completely exasperated, I told her no, that I guess I’d have to try again tomorrow, and walked away with tears stinging my eyes. I was mad that I wasted another trip, confused as to why this was so difficult, and defeated by the lack of understanding from the receptionists.

The bottom line is that I have a few questions after experiencing all this:

  1. How come my lab orders weren’t submitted?
  2. Why did I let this affect me emotionally?
  3. Why does everything about diabetes management have to be so complicated?

While I don’t have an answer right now to the first question, I intend on finding out how the slip-up occurred. And my answer to the second question, I think, is tied to my response to the third one: Diabetes management is hard. I try my best every single day and deal with the curveballs that are thrown my way. But lately, diabetes is like a pesky gnat, flying around my head so it’s always in my line of sight and incessantly buzzing to keep my attention. It’s annoying as hell and gets in the way of living my life. So to have something that’s normally easy, something that barely even requires me to think about my diabetes, become so complicated is just ANNOYING.

The one positive result from this whole ordeal? My A1c was better than I expected. Thank goodness.