3 Things I Learned About T1D From my 10-Hour Road Trip

What do you do when a road trip that’s only supposed to last 7 hours turns into a 10 hour trek?

The answer isn’t cry, or whine, or freak the eff out. The answer is to roll with the punches…because you have no other choice.

At least that’s the way I saw it when my journey from Virginia to Massachusetts dragged out from 9 A.M. to 7 P.M. a couple of Fridays ago.

As someone who loathes driving, I was dreading this trip. But I knew it was important for me to conquer a fear of long-distance driving, as well as bring my car back to Massachusetts for a cutting-it-close car inspection. Plus, driving is much cheaper than flying, and you can’t beat the convenience of loading up your car with as much crap as you need to pack.

So I made myself do it, and besides teaching myself that I can handle a longer road trip, I also learned three interesting things about my diabetes from the many hours I spent in my car:hugging the cactus - a t1d blog.png

1. My diabetes doesn’t like for me to stay idle for so long.

This trip was an excellent reminder of how much my body and my diabetes rely on me to get up and move throughout the day. Throughout the workweek, I tend to get up from my desk chair at least once every hour, if only to stretch my legs. But that frequency of movement must make a difference, because I only visited a rest stop once during the full 10 hour trip. It felt awesome to move around for a few minutes, but I was eager to get back on the road and didn’t walk much while I was at the rest stop. Now, I’m wondering if I should factor that into my next long drive, but the idea of taking too many rest stops and prolonging my travel time is not exactly favorable to me…unless it means that my diabetes is guaranteed to be better behaved.

2. My diabetes is better behaved when I eat regular meals.

I eat a lot throughout the day. Breakfast, lunch, dinner, and at least two snacks are part of my daily meal plan. I typically eat all three meals and two snacks around the same times each day, to boot, so my diabetes depends on that consistency. It’s no wonder that I was dealing with rebelliously high blood sugars for most of my drive home, because I was fueling myself with absolute garbage: chicken nuggets (and only chicken nuggets for lunch), Fritos for a snack, and a granola bar for ANOTHER snack. In hindsight, it would’ve been much easier for me to pack a healthy lunch and maybe an additional, in-case-of-emergency snack, because I could’ve had a low-carb option available to me whenever I was ready for it. Plus, chicken nuggets and Fritos are things that I rarely consume, so of course my blood sugar wasn’t loving them.

3. My diabetes HATES stress.

And my goodness, was I stressed. I hate driving, period, so I doubly hate it when it’s a long distance. And my stress was exacerbated by the fact that I had to transport 60 cupcakes, on ice, back to Massachusetts with me for a bridal shower that I was planning for my cousin. That’s quite a bit to contend with, so it makes sense that my blood sugar shot up within minutes of me hitting the road. Even though I ran temp basals and bolused somewhat aggressively, it didn’t make much of a difference in my levels. And I suppose that I was hesitant to give myself too much insulin while I was behind the wheel, because going low seemed more dangerous and difficult to contend with than going high. Truthfully, though, there’s nothing fun about high or low blood sugar. It doesn’t matter if I’m driving, sleeping, exercising, whatever – anything other than “in-range” is just a pest to me.

So now that I’m aware of these three things, what am I going to do about it? For starters, I’m definitely going to get better about planning my meals for long car trips. I’m also going to try to take it easy a little bit…I put so much pressure on myself (I’m very good at working myself up into hysterics, really). So I might try some mindfulness exercises (e.g., meditating) before the next long drive…because anything I can do to take back control of my diabetes before going on my next one will be worth it.

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4 Things That Make Traveling with Diabetes Easier

Throughout June and July, I’m going to be a travel fiend. I’ve got plans to travel by plane at least twice, and by car countless times. My trips will vary in length from just a couple hours to eight or nine hours. My head’s spinning just thinking about it, but I’ve got to get it together enough to think about how I can make traveling with diabetes a little bit easier. Given my past travel experience, I can think of four things that are absolute musts for me to take on any trip…

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Some of my favorite things to have with me when I travel.

4. Packing cubes
I always thought packing cubes were a total gimmick…until I actually started using them. I got a set of four for Christmas and they’ve really turned me into a much more efficient packer. They help me visualize the space that will be taken up in my suitcases, and what’s even better is that one of the cube’s is the perfect size for my diabetes supplies. I can fit 15-20 pods, a handful of CGM sensors, various device chargers, alcohol swabs, IV prep wipes, and more into the compact little cube. It’s so much better and more organized than the lame-o gallon-size Ziploc bag that used to store all my diabetes supplies for a trip.

3. My Myabetic backpack
I don’t know how I ever traveled with a purse as opposed to my Myabetic backpack. I can fit way more things into my backpack than I ever could put into my purse, and I love that there are specific compartments in the backpack for certain diabetes supplies. I know exactly where things I might need during a flight are stored, eliminating that panicky feeling I used to get when I would dig frantically through my purse in order to find my tube of glucose or my PDM.

2. Snacks and water
This is an obvious one. In my opinion, traveling with diabetes shouldn’t even be attempted without a refillable water bottle or at least two emergency-low-blood-sugar snacks. Even though it’s basically diabetes 101, I’m guilty of going places without water or snacks…and I’ve always regretted it. There’s not much worse than being in an unfamiliar place and unsure of where the closest food and water is located, especially when dealing with a blood sugar crisis.

1. My CGM
The most important tool in my travel kit is, without a doubt, my CGM. More specifically, my receiver is key, particularly when I’m traveling by air. I am religious about turning my phone off for the duration of a flight (just a weird paranoia thing, don’t judge me), so my receiver becomes my go-to whenever I want a status update on my blood sugar without taking out my meter and kit. It helps me handle any weird blood sugar spikes and drops that occasionally happen when I travel, and it provides me with a peace of mind that makes traveling with diabetes much more bearable.

 

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.

T1D Plus the TSA Equals Trauma

I had a bit of a traumatizing experience at the airport a few weeks ago.

I travel fairly frequently – I’d estimate that I hop aboard a flight a dozen times or so per year. As a result, I’m well-versed in the TSA routine that goes down at every airport: Remove shoes/belts/items from pockets. Take laptops and electronic devices of similar size out of bags. Place 3-1-1 liquids in a visible spot. Let TSA agents know before stepping into the full-body scanner that I have T1D and wear a couple of devices. Step out of scanner and allow them to do a hand swab. Wait patiently for the results to come back clean, gather belongings, and move on to my gate.

It’s a very precise routine that I’ve come to anticipate and accept, so really, it’s no wonder that it was bad experience when it deviated sharply from the standard format on my last trip.

I was returning home from a long weekend in Washington, D.C. I queued myself up in the TSA line and when I got close enough to an agent, I let her know that I didn’t want to go through the full-body scanner, because I was wearing a medical device that couldn’t handle it. (The manual for my Dexcom G6 advises users to avoid full-body scanners and opt for pat-downs, metal detectors, or wands, as available. I’m a stickler for following the rules, so that’s why I stuck with the manual’s advice). I’ve had the pat-down before, and while I don’t love it, I knew it wouldn’t be intolerable.

As soon as another female agent was free to conduct the pat-down, I was waved over and subjected to the semi-embarrassing “free massage”. Once it was done, my hands were swabbed. If you aren’t familiar with the hand-swab process, it’s a protocol in which the TSA checks passengers’ hands for any traces of explosives. In other words? My swab always comes back clean.

Except this time, it didn’t. The machine dinged. This prompted a couple of TSA agents to consult one another before coming over to me and informing me that I’d have to wait an undisclosed period of time for another, higher-up female agent to come over, conduct a “more-thorough” pat-down, and forfeit my luggage for a closer inspection.

Deep down, I wasn’t worried because I knew that the more meticulous inspections would clear me for travel. But I couldn’t fight back against the anxiety that flooded throughout my body as I wondered how long I’d have to wait and how much more invasive this next pat-down would be. I struggled to conceal the tears that rolled down my cheeks as TSA agents seized my bags and rifled through them, ruining my careful packing techniques. I was humiliated, and practically had to beg them when I asked to see my cell phone and OmniPod PDM. (I could practically feel my blood sugar going up due to the stressful nature of the situation, so I wanted to check and correct it A.S.A.P.) It only got worse as I was pulled into a separate room and given a pat-down in which the agent actually pulled my pants away from my body to look down inside them, which is just as awful as it sounds. I know that they’re merely performing their job – I don’t fault them for that and appreciate that it’s far from glamorous – but it was horribly demeaning.

When I was finally told I could go, I wordlessly collected my belongings, fighting to shove them back into my suitcase. I made a beeline to the restroom to splash water on my face and calm down. As I waited to board my flight, curiosity took hold of me and I posted a poll on Twitter. I wanted to know if anyone else has ever had an experience like mine. Nearly 241 people answered my poll.

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And I was fascinated by the results. There was no overwhelming majority; in fact, it was rather solidly split down the middle, with only a few more people reporting a negative experience with the TSA. Many of those people responded directly to my poll with tweets of their own that described their experiences:

They nearly ripped my son’s inset out of his thigh for his pump one time. Another time they took his bottle of insulin & tested it & I understand explosives come in liquid form but he was 8 years old. Another time they performed a very thorough and humiliating body pat down on me in order for him to bring his insulin on board.

I’ve never had a difficult experience w/TSA on any flights- international or domestic. They’ve all been very professional & understanding when I said I have an insulin pump/all supplies. I’m sorry you had a tough time.

My husband has to take my daughter through because I completely lose my shit on them. Every single time a hand swipe test. Unbelievable and stigmatizing.

Almost every single time and it infuriates me. They treat your supplies like you’re part of the drug cartel. One held up my bag and with so much attitude “excuse me? What is this?” And I said my medicine and another passenger screamed at the agent saying “you can’t do that!”

Same thing happened to me! They tore apart and destroyed so many of my supplies and I just watched helplessly while crying. If 29 million Americans have diabetes why is TSA so oblivious to what it looks like?!!

While these replies validated to me that I wasn’t overreacting, they also made me sad. Angry. Frustrated. Why is this a thing in some airports? Why isn’t there a better protocol in place for people with diabetes?

Perhaps the most irritating part of it all is that I don’t know for sure why this whole thing happened in the first place. I assumed that it was a fluke on the machine’s end, but after corroborating stories with so many other T1Ds, it’s got me wondering…was my diabetes a red flag of sorts to the agents? Did they think that my supplies were disguised and could be something harmful?

Again, I don’t want to discount the work that the TSA does to help keep travelers safe. I truly do appreciate it and I know that experiences vary at airports all across the world. But…we can do better. Traveling should be fun and exciting, not traumatizing.

Diabetes in the Renaissance

Can you imagine having diabetes in the 14th – 17th centuries??? The answer to that is no, you probably cannot…because without modern medicine, it wouldn’t have been possible for a T1D to survive in the Renaissance. And ‘cuz, well y’know, the Black Plague was a thing back then and lots of people didn’t survive.

But fortunately, we’re living in the 21st century, which means we have access to all sorts of things that help us manage diabetes. Still waiting on that cure, though.

Where am I going with all this?

I wanted to recount my recent trip to a Renaissance festival, in which I spent a day taking care of my diabetes while jousting tournaments, Shakespearean performances, and drunken debaucheries took place all around. And you know what? It was easier than I thought it’d be.

Sure, I didn’t check my blood sugar with my meter as much as I should have. My inner germaphobe was reluctant to rely on my meter for accurate results, seeing as there weren’t really any hand-washing stations on the fairgrounds. (Remember, this is the Renaissance…things were a little grimier in those days.) I used hand sanitizer whenever it was available to me to keep my hands clean, but it was a bit of a challenge, especially when my mitts got caked in mud post-ax throwing.

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Enjoying a turkey leg alongside a serving of Chardonnay at the Renaissance Faire – y’know, to keep things classy.

Thankfully, I had my Dexcom G6 to help keep me on track as I ate my way through the fictional 16th century village. I was jazzed that several low-carb options were available to me; throughout the day, I snacked on a giant turkey leg, a Scotch egg, and spiced nuts. Maybe a “diabetes-friendly” diet would’ve been easy to follow in the Renaissance? Though I will admit that I gave in to temptation and ate (devoured) a slice of cheesecake. On a stick. And dipped in chocolate. Not low carb, but super YUM.

So even though my diet was far from nutritious at the ye olde faire, I think that all the walking around and sharp-objects-throwing kept my blood sugar in check, much to my relief. My experience at the fest is just another example of how diabetes won’t prevent me from living life to the fullest, whether it’s in the reality of 2018 or the fantasy of the 16th century.

Bike Beyond, the Documentary: An Emotional Cinematic Experience

Last summer, a team of 20 international riders embarked on the journey of a lifetime. They spent 10 weeks cycling from New York City to San Francisco – east coast to west coast. As if this feat weren’t incredible enough, this team was comprised of individuals with type 1 diabetes.

This ride was risky enough, but throw diabetes into the mix, and it seemed impossible. Blood sugars would be a constant concern. Diabetes technology could fail. Careful watch of blood sugars could clash with the focus on cycling. Diabetes burnout could affect the riders physically and mentally.

But – spoiler alert – neither fear nor diabetes would prevent these riders from completing their arduous trip.

When Team Bike Beyond officially started their trek last summer, I remember following along as best as I could through various social media channels. I felt connected to the team: not just because of diabetes, but because I personally befriended a couple of the riders a few years ago at one of the College Diabetes Network’s Annual Student Retreats. I attended as a volunteer, and Jesse and Meagan were there as students. It’s funny how quickly friendships can form over the course of five days, but as anyone who’s gone to one of these retreats can tell you, there’s something about being immersed for a few days with a group of people who just get it. So it’s natural that we bonded over our mutually dysfunctional pancreases.

Anyways, as neat as it was to read those updates from Jesse, Meagan, and the team, there’s no way that words could capture what they were actually experiencing out on the road. I think that’s why watching the documentary was so emotionally captivating to me: Within the first few minutes, tears were rolling down my cheeks as the bikers explained the nervous energy they felt in the days leading up to the ride kickoff. In fact, my facial expressions changed so frequently throughout the film that I’m sure it was comical. One moment I’d be beaming, and in the next my jaw would drop open. I’d laugh when the riders were being goofy together on camera, and marvel with them as they took in stunning scenery across the country.

Overall, the documentary was incredibly well done. Victor Garber’s narration was fantastic – smooth and clear without taking attention away from what was happening onscreen – and the visuals were beautiful. I liked how footage from the riders’ GoPro cameras was incorporated so viewers could get an accurate representation of their perspectives from the bikes. It made me appreciate the physical intensity of the ride that much more, because diabetes aside, cycling such a long distance filled with rocky roads and steep inclines is extremely demanding on the body.

My recommendation? Check out the trailer. I included it above. I guarantee it’ll pique your interest and stir your emotions. You’ll want to watch the full documentary, which you can get here. After watching it, I think you’d agree with me that Team Bike Beyond crushed their goals of raising T1D awareness and eliminating stereotypes by completing this journey.

Four Factors that Impacted my Diabetes in Las Vegas

Recently, I returned from a trip to Las Vegas with my best friends in the universe. It was awesome to take a vacation with them, especially in a place that’s virtually a playground for adults.

Before I went on the trip, I knew to expect some sort of disruption with my diabetes care and management routine. I did as much as I could to prepare myself for every potential scenario, from packing extra snacks and supplies, to asking the DOC how I should account for a sudden change in time.

While my preparation really did help, I still encountered the unexpected when it came to my diabetes on the trip. Four factors in particular come to mind…

  1. The heat – At first glance, this is a no-brainer. I’ve been to many hot climates on vacation, so it isn’t news to me that intense sun can make blood sugar go low quickly. We were literally in the middle of the desert, so I knew it would be important for me to watch my numbers closely, as well as keep myself hydrated. But I think the fear of going low all the time was a little too strong, which meant that I was running a bit higher than I’d normally like for most of the vacation. My paranoia about drinking plenty of water, though, was not a joke. I pride myself on being good about staying hydrated, but I struggled to keep up with the dry desert heat. I can’t help but wonder: If I’d been better about drinking water, would it have benefited me during some of the stickier high blood sugars? Speculation can only get me so far now; however, all signs are pointing to probably yes.
  2. The strip – The Las Vegas strip is less than five miles in length, but the whole stretch of it, marked by hotels, stores, casinos, and ginormous flashing lights, feels incredibly long. Nevertheless, my friends and I naively believed that we could skip taking taxis and walk all over the place. For the most part, we could, but it was definitely dicey when we walked nearly a mile and a half from the Cosmopolitan to the Rio one evening. It influenced my blood sugar in a positive way – the exercise brought my levels down to a nice and stable place – but that didn’t mean it wasn’t scary to walk practically on the highway at nighttime.
  3. The alcohol – I’m well aware of the fact that different kinds of alcohol can have different affects on blood sugar. To minimize blood sugar swings, I stuck with the less-sugary options as much as I could (i.e., opting to order a rum or whiskey with diet coke), only getting fancier drinks when I was consuming fewer carbs at mealtime. For the most part, this strategy worked well and proved to me that a little extra thought can go a long way when it comes to deciding how to treat yourself. But it also reminded me why I don’t have weekends like this often – it’s exhausting enough to take care of myself on a daily basis without alcohol being a factor. Throw it into the mix and I’m watching my blood sugar so carefully that my CGM’s battery is drained in half the time it normally takes to zap it.
  4. The pizza – The scientific answer to the reason why pizza is tough on blood sugar involves the glycemic index and some fairly complex calculations…boring! All you really need to know is that it takes a long time for pizza to have an affect on blood sugar due to its high fat-to-carb ratio. As a result, it tends to be a “treat” food for me that I only indulge in every once in a while. But when in Vegas…you have as much of it as possible. Pizza was one of the quickest and easiest food options for me and my girlfriends throughout our trip, so we ate it multiple times. I don’t regret a single cheesy, delicious bite…but I am slightly remorseful for not doing a better job bolusing for it. The first time we had pizza, I didn’t give myself enough insulin. The second time, I gave myself too much and went low, though that may have happened because I didn’t finish both slices like I thought it would. The bottom line? I didn’t realize that pizza would be a dietary staple on this vacation, and I’ll probably refrain from eating so much of it on future vacations.
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A slice a day does not quite keep blood sugar at bay. But it’s tasty as hell.

Despite the diabetes curveballs I encountered, I enjoyed my trip to the fabulous Las Vegas. I managed the challenges as best as I could without letting them interfere too much with what I wanted to do. Plus, it helped that my best friends were with me the entire time. I have to give them credit for making the most of my diabetes difficulties, too. For instance, I felt badly about sidelining them in the Bellagio on our last night there due to a low blood sugar that crept up on me after walking (the strip!) and over-bolusing (the pizza!), but they really rolled with the punches and made the most of it. In fact, I’m pretty sure they experienced their favorite people-watching moments while we sat and waited for my sugar to come up (I got a kick out of the weird people coming in and out of the lobby, too, but was slightly more focused on raising my number).

Thank you, Kortney and Roshani, for accompanying me on an incredible girls’ trip and for being my best friends in the world. Maybe Las Vegas 2020 needs to happen – now that we know to expect, perhaps my diabetes will be a more cooperative travel companion the next time around!