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.

Advertisements

Trying to Stay in the Loop with DIY Diabetes

I can’t remember exactly when I heard of “DIY diabetes”, also known as “looping”. It may have been at a conference a few years ago, or maybe I saw something about it on social media. Either way, it seems to have totally blown up as more and more people with T1D are looping.

TRYING TO STAY IN THE LOOP WITH DIY DIABETES
Are you a Looper?

Before I talk about it more…a brief definition of looping. Loop refers to a kind of automated insulin delivery system. According to what I read about it on diaTribe, Loop systems are open-source and DIY, meaning that T1D Loopers download an app for the iPhone that communicates with a device that also communicates with compatible pumps and CGMs.

If you’re confused, don’t worry – so am I. There’s a number of moving pieces involved with Looping that make it daunting and difficult for me to keep up with as the technology changes. But the ultimate goal of Looping is what has me interested in it. Looping is supposed to help improve time-in-range, particularly overnight, because it does a lot of the thinking for you and ultimately makes life with diabetes easier. And I’m all for that.

Looping’s been popping up on my social media a lot lately because at the end of April, the geniuses behind Loop announced that compatibly with the OmniPod for the first time. (Previously, Looping was only available to Medtronic folks.) On what feels like a daily basis, I notice more people on my social media platforms – particularly Instagram – who are Podders that have made the decision to start Looping. The common denominator with many of these individuals, besides being Looping Podders (sounds like a wacky band name) is that they’ve found great success in doing so. It seems like each person spends 90% or more of his/her time in range, encounters fewer low/high blood sugars, and wastes less time worrying about diabetes in general.

All of that sounds too good to be true. Of course my interest is piqued by such incredible results, and of course I’d love to dive right into Looping and see whether it’s a good fit for me. But the reason why I don’t is simple…I just hesitate to trust new technology.

Technology can fail. Plain and simple. All operations for Looping with the OmniPod take place on the iPhone. That means that the PDM is rendered useless. What happens if I lose my cell phone? What if the battery dies when I need to bolus? What do I do when I upgrade to a new phone? There are so many questions I can think of related to the phone issues alone, never mind any other potential problems. Put simply, the unknowns – the “what ifs” – terrify me so much that I can’t help but be skeptical of Looping.

But this doesn’t mean my interest goes away. My curiosity about Looping is stronger than ever. The DIY element is frightening, but the rewards could be greater than the risks.

The only thing I know for sure is that I won’t even attempt to Loop until I have a conversation with my endocrinologist about it. Together, we make decisions about my diabetes care and treatment that we both feel are safe and right for me. I’d love her opinion on Looping to see how much she knows about it and whether she has any patients who use it. Until I talk to her and gain more information from other Loopers, it’ll just be something that I cautiously admire from afar on social media.

Every Last Drop

27 units. That’s exactly how many units of Humalog were left in my pod, and I had no choice but to literally throw them away. My pod was expired – it had been for 8 hours – and to my knowledge, 8 hours after a pod expires, it will cease working entirely.

I kept the pod on those 8 extra hours because I couldn’t bear the thought of wasting insulin.

IMG_2075
27 units and no choice but to throw all of them away.

It’s a strange, messed up game that I played. I was taking a bit of a risk by wearing my pod for so long after it expired. After all, it’s just a piece of technology, and it can sometimes be difficult to know whether or not it’s working properly when it’s brand new, let alone within the window of expiration. But this is the game that I have to play, along with so many other people with diabetes, because insulin is precious.

Insulin keeps us alive.

Insulin is a need, not a want.

Insulin is exorbitantly expensive, so much so that it ranks #6 on a listing of the 10 most expensive liquids in the world.

With that in mind, tell me…would you feel comfortable throwing away even one single unit of it?

One could argue that maybe I could’ve tried to extract the 27 units from the old pod and reuse it in a new one – but to me, that’s an even more dangerous game to play. I have no clue whether that’s safe, or if there’s too much risk involved with germs and cross-contamination. Maybe I’m just paranoid, but when it comes to my health, I have to be.

So as much as it pained me to be unable to use every last drop of insulin, I made the only viable choice for me and disposed of 27 units of Humalog.

27 units, 16 units, 3 unit, 1 unit…no matter what the quantity is here, every last drop of insulin is invaluable.

When will we see change? Is it really too much to ask for insulin to be affordable to all?

A Device-Free Shower

For the first time in *literally* years, I took a device-free shower the other day.

AND IT WAS AMAZING.

6B17A57D-C50C-497D-9FC5-B24C6F6405EF
Ta-ta for now, little friends.

Let me clarify that by device-free, I mean that I wasn’t wearing a pump or a CGM on my body. Both were due to be changed that evening, so with what can only be described as unadulterated glee, I peeled my Dexcom followed by my pod off my body before practically leaping into the shower.

It probably sounds funny, and perhaps a little dramatic or flat-out fucking weird, but those 15 minutes without a single medical device stuck to me were glorious. I wasn’t worried about accidentally knocking something off. I was free to scrub off the adhesive that had kept the devices stuck to my skin, and I felt oddly empowered – carefree, even – that I could enjoy one of the most mundane daily routines without needing to worry about my diabetes. Sure, for the duration of my shower, I wasn’t receiving my basal rate of insulin, but I really didn’t care because 1) I took a small bolus to compensate for it before I removed my pod and 2) I was more focused on doing this one little thing for myself to reclaim my body from diabetes devices, even if it was for a short window of time.

So you might argue that I had my first truly nekkid shower for the first time in forever. And it made me happy. A brief reprieve from diabetes is always welcome, and I’ll take it in whatever silly form I can get it in.

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.

Teacher's Month 2020

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.

Favorite Things Friday: My Very-Precise Pod Change Procedure

One Friday per month, I’ll write about my favorite things that make life with diabetes a little easier for me.

Not too long ago, it occurred to me that I am very, very, very, very, very strict about following a specific protocol every three days when I change my pod. In fact, it rarely deviates, but when it does (due to circumstances beyond my control), it throws me off track, like, a lot…which is why the way I do it is my favorite way.

my pod change procedure
Detritus from a typical set of site changes.

What’s so precise about my pod change procedure? Let me walk you through it…

Step 1) The numero uno thing I do, a half hour before I start my procedure for real, is remove a vial of insulin from the refrigerator. I’ve always been told that it’s important to let the insulin reach room temperature for at least 30 minutes before I start the pod change process. My mother was the one who told me that this step is crucial, because years ago, she’d heard from a representative at Insulet that room temperature insulin works best with pods for whatever reason.

Step 2) Once my insulin has reached room temperature, I set myself up at the island in the kitchen to go through the rest of the process. I make sure I have a totally clear area and ample lighting before I start on step #2.

Step 3) Next, I take an alcohol swab and wipe the top of the insulin vial that I’m drawing insulin from, and then I wipe my new site.

Step 4) Before even touching my PDM, I grab my syringe, stick it into the vial, and suck up the amount of insulin I’ll need for the next three days. This is usually somewhere between 100 and 150 units.

Step 5) This is where I deactivate my old pod, and jab at the buttons on my PDM to start the new pod activation process. The only reason why I get insulin into the syringe first is to minimize the amount of time I spend without a pod on my body. You might be surprised to learn that a short period of time without insulin can make a difference on blood sugar levels, but that’s just the way it is.

Step 6) I fill the new pod with insulin and hit a button to get it to start priming. During the priming period, I use an adhesive wipe around the new pod’s site to help it stick better to my skin.

Step 7) I finish up the process of removing the pod’s needle cap, then the adhesive stickers. I apply it with care to the new site and put pressure on it as I wait for the cannula to inject itself under my skin’s surface. And then I’m good to go!

Of course, I can’t always follow these steps as I’ve outlined them above. And while it messes me up a bit, and I usually have to take a little longer to change it, I roll with the punches and get it done. For instance, when I last visited Disney World, I had to change my pod in one of the park’s dimly-lit family restrooms with my mom using her outstretched hands as my mini work surface…far from ideal, but it was what it was.

Like all things associated with diabetes, I guess that I take comfort in keeping a routine, even with something as minor as a pod change.

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.

6f688e1c-9a27-4e6a-a48a-1b781f3c1285.png
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.