“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.
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.
I can always count on diabetes to make life’s most joyous occasions just a bit more challenging…so I shouldn’t have been surprised when my diabetes threw several curve balls at me on my cousin’s wedding weekend.
There was the moment at the rehearsal dinner when I stood up to get something and hit my leg against a chair, literally knocking my pod off my thigh. (But I didn’t even realize it for another 20 minutes.)
There was the moment later that night, after the rehearsal dinner, that I discovered my blood sugar was high and that my mealtime dinner bolus probably was never delivered.
There was the moment the next morning that I realized my breakfast options were limited to a giant, carb-y bagel or a massive, sugary blueberry muffin.
There was the moment when I was with the bridal party – applying makeup, styling hair, and trying to calm the bride down – that it hit me that I had no idea what to do with my backpack (a.k.a., my diabetes bag) during the ceremony, as I had to be standing up there with the other bridesmaids during the vows.
There was the moment I psyched myself out big time by wondering what the hell would happen if I passed out in the middle of the ceremony in front of all of the esteemed guests.
There was the moment I went a little too overboard on drinking Prosecco at the reception…and a few more cocktails at the after party.
There was the moment I woke up the next day with a high blood sugar and hangover from hell.
Needless to say, there were quite a few diabetes “moments” over the course of an otherwise beautiful weekend. As a result of them, I’ve decided to document some wedding dos and don’ts for myself, as this won’t be the first time this year that I’m a bridesmaid in someone’s wedding. Here’s my unofficial roundup.
Do have plenty of back-up supplies. I got lucky this time around because my parents were a phone call and short car ride away from me when my pod fell off. I should’ve been carrying insulin and a spare pod on me, but at least it was within my mother’s reach at the hotel room.
Don’t sweat the small stuff. Things happen, and I’ve got to learn to accept them more quickly so I can better adapt to a situation. It took me awhile to forgive myself for the pod snafu at the rehearsal dinner, and if I hadn’t snapped out of it, then it could’ve ruined the night for me.
Do try to plan meals when possible. I knew that I should avoid a high-carb breakfast on such a busy morning, but I can’t resist a blueberry muffin, especially when it’s one of two breakfast options I had. I wish I’d thought to bring food that had accurate carb counts on it so I could’ve had more predictable blood sugars throughout the day, but I did come back down from the sugar-induced high relatively promptly.
Don’t forget that family and friends are willing to help. My “problem” with my backpack was solved by handing it off to my boyfriend about 30 minutes before the ceremony started. I didn’t miss any photo opps with the bride and bridesmaid during the hand off and I felt better knowing it was in good care.
Do remember that time flies. I had to keep myself in context; after all, I was standing up in front of the guests for less than 30 minutes. I knew there was relatively little insulin in my system and that I was starting to level out somewhere in the 100s by the time the ceremony started. The odds of me passing out were slim, and I needed to give myself that reality check.
Don’t forget to drink plenty of water. Duh, that’s drinking rule #1! I’m embarrassed to admit that I maybe had two glasses of water during the entire reception and after party. It’s not like there wasn’t water available, so I don’t know what I was thinking. But I do know that I was incredibly lucky to hold onto stable blood sugars well into the night, despite my lack of hydration.
Do have a plan for hangovers. Sometimes, they happen, and they’ve got to be dealt with swiftly. After some consultation with my mother, I set a temp basal to fight against my high blood sugar and downed glass after glass of water. By early afternoon, I was feeling much better. And even though I had a bellyache, I didn’t yak, so I suppose that’s a silver lining.
And one extra “do”…do have fun with diabetes devices! I decked out my pod in a Pump Peelz sticker that had an image of the lighthouse we were near on it. Sure, it wasn’t visible to anyone but me (and a few people I couldn’t resist showing), but it still made me feel extra special and coordinated with the wedding venue. Sometimes, its the little things in life.
So besides taking several valuable dos and don’ts away with me from this weekend, I’m also walking away with a wonderful first experience as a bridesmaid to a cousin who’s always felt more like a sister to me. When it comes down to it, my irritation with diabetes doesn’t matter – it’s the love and celebrations I felt all weekend long that do matter.
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.
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.
My short answer to that question is YES. Yes, it’s absolutely possible to eat pizza – and just about any food, in my opinion – without experiencing turbulent blood sugars.
It all just comes down to serving size, timing, and method of insulin delivery. Piece of cake, right? (Or should I say, piece of pizza?)
Well, it really isn’t THAT simple. Other factors include the exact type of pizza (Is it gluten-free? Are there toppings? Is the crust thick or thin?), whether or not other food/drink is being consumed with it, whether exercise or inaction will follow in the hours after eating it…truly, there’s all that (and more) that people with diabetes need to think about when eating any type of food.
But what’s different about pizza is that it has a particular combination of fat and carbohydrates that can make it a tricky food for people with diabetes to figure out how much insulin to take and when to take it. It’s a little easier for those of us who have insulin pumps, because we can utilize the extended bolus (or square wave) feature that allows us to give a certain percentage of a mealtime bolus at once, and select a time later on to receive the rest of the bolus.
If that last sentence didn’t make any sense, here’s an example of what I mean:
It’s dinnertime – 5:30 P.M. I have two slices of pizza that I plan on eating. One’s plain, the other has BBQ chicken on it. I figure that there’s 50 grams total of carbohydrates in the two slices of pizza. My blood sugar before eating the pizza is 130 mg/dL. I put that number into my pump, and also input 50 grams of carbs. My pump wants me to take 8 units of insulin to cover the pizza. Instead of administering the full 8 units at once, I hit the “extend” option and opt to take 75% of the dose now, and the remaining 25% an hour and a half from now. So I get 6 units of insulin at 5:30, and 2 units at 7:00. This extended bolus typically has the power to prevent my blood sugar from crashing and spiking hours after eating said pizza, and in turns, saves me from dealing with a massive headache and questioning why I ever ate pizza in the first place.
Granted, an extended bolus isn’t the end-all, be-all. It relies heavily on me and my ability to count carbs correctly and time my boluses perfectly. But I have had fantastic success using it, particularly in a recent situation in which I ate two large slices of whole wheat pizza, a side salad, and a bit of pita bread without spiking beyond 160. I can’t say whether it was the whole wheat crust that helped me out (maybe it has a lower carb count compared to regular crust?), or if it was just supremely accurate calculations on my end, but it really doesn’t matter to me in the end…because I know that I can eat and enjoy pizza – and again, virtually any food – without my diabetes ruining it for me.
For the first time in *literally* years, I took a device-free shower the other day.
AND IT WAS AMAZING.
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.
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.
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.
I had just zipped up my coat when I heard a faint, high-pitched beeeeeeeeeeep emerging from somewhere in the vicinity.
My mom and I exchanged looks. “Uh, oh,” we said simultaneously.
“It isn’t me,” Mom said, patting her pod.
“It can’t be me, it sounds too far. Are you sure it’s not the refrigerator door that was left open?” I asked, as I unzipped and peeled off my coat.
She didn’t have to answer the question, though, because as I took my coat off, the beeping sound grew louder. I looked down at my abdomen and cursed. Yup, my pod had just failed.
I wasn’t totally surprised that it happened. The dry winter air was triggering excessive static electricity that weekend, and the sweater I chose to wear that day seemed to be charged with it. I couldn’t move my arms without hearing little sparks going off. If I was smart, I would’ve changed my top to one that was less filled with static. But I had somehow managed to convince myself that there was no way my pod could possibly fail due to my clothing choices.
I know better than that.
The real kicker in this situation is that we were obviously headed out somewhere – we were hoping to go to our favorite bar for a quick drink. But with the pod’s failure occurring at basically the most inopportune time, we were left with a three choices:
Stay home. Take out the insulin, wait a half hour, and resign ourselves to the fact that it just wasn’t a good night to go out.
Go out, but take a syringe and a vial of insulin with us. That way, I could give myself a shot, if need be, while we were at the bar. We could head home after the one drink and I could change the pod once we were back.
Go out and take a total risk by leaving all extra diabetes supplies at home, and just wait until after we had our drink to change the pod.
I like living on the edge sometimes, but option #3 is just way too dangerous. So we went with option #2. If you’re wondering why we didn’t just opt to wait a half hour (insulin needs 30 minutes to come to room temperature before it can be put into a new pod), it’s merely because we didn’t want to stay out late. And yes, a half hour can make that much of a difference to me and my mom!
So we left the house with an emergency insulin vial and syringe in tow. And it’s amazing how much better it made me feel to know that I had both, just in case.
Fortunately, I didn’t need them. I monitored my blood sugar carefully during our hour-long excursion, drank plenty of water, and deliberately chose a lower-carb, whiskey-based cocktail that wouldn’t spike me. And I was able to enjoy every last sip of it before returning home and changing my pod soon after walking through the front door.
I do have to say, though, that under different circumstances, I’d absolutely make different choices. If we weren’t less than three miles away from the house, and if we’d planned on staying out for more than a single drink, then you bet your bottom dollar that I would’ve changed my pod before going out. But in this situation, I made the decision that felt right for me, and felt comforted by the fact that I had backup supplies in case I needed them.