Beyond Diabetes

This November, I participated in the #HappyDiabeticChallenge on Instagram. This challenge centered around daily prompts to respond to via an Instagram post or story. I’ve decided to spread the challenge to my blog for the last couple days of National Diabetes Awareness Month. As a result, today’s post topic is beyond diabetes.

I can’t believe that today is the final day of November, A.K.A. National Diabetes Awareness Month. In a way, I’m relieved. After all, diabetes advocacy can be exhausting. I’ve kept up daily Instagram posts, in one way or another, in response to the #HappyDiabeticChallenge. I’ve tried to keep all of my blog posts this month on theme. I even participated in a fundraising live stream on YouTube, which was an anxiety-provoking yet exhilarating event all on its own.

Needless to say, I’m looking forward to dialing it back down, temporarily, for the month of December. I won’t stop advocating, but I will take a small step back from it so I can recover and process everything from the month in my own time.

It’ll be a good way of reminding myself that I’m more. More than just this stupid chronic disease. There’s so much more to me than diabetes: I’m a daughter, a sister, a girlfriend, a best friend. I’m a dog lover (despite being allergic to most of them). I’m a young professional. I’m a millennial (who proudly owns the moniker). I’m a Disney fanatic and Harry Potter obsessive. I’m a creative and passionate person who cares about a lot of different people, things, and projects.

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I am more than my diabetes.

I’m beyond my diabetes. I prove that to myself each day by living my life unencumbered by it. When it knocks me down, I always get back up to remind it that I’m the boss.

Beyond National Diabetes Awareness Month is a broader realization that I’m a bit burnt out by this hardcore advocacy. And that’s okay. I’ll take a breather and remember to enjoy life more, because I know that I’m beyond diabetes.

Advocacy is not “One Size Fits All”

Not too long ago, someone told me that my blog wasn’t really a form of diabetes advocacy, a point that I strongly refuted.

Advocacy looks different to everyone, and people can be advocates in countless ways. I think it depends largely on 1) what someone is trying to advocate and 2) their personality. For instance, maybe someone is really good at fundraising and wants to raise money to donate to a particular charity. Perhaps someone thrives from advocating at the group level, whereas another person prefers to do it individually. Maybe political advocacy for a cause like diabetes is right up one person’s alley, and another person is more comfortable with using social media to raise awareness and interact with others in an environment like the diabetes online community.

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My blog is my diabetes advocacy outlet.

If you haven’t guessed it by now, my preferred way to partake in diabetes advocacy is blogging. I feel that writing down my story, whether it’s lessons I’ve learned over the years or mundane anecdotes about life with diabetes, is the form of advocacy that makes the most sense for me. It allows me to open up to a large, eclectic audience (i.e., the entire Internet) and show them what it’s like, to some degree, to live with diabetes. I keep things real in my posts and write about the good, the bad, and the ugly when it comes to T1D, and to me, that is advocacy.

What to do When Diabetes Technology Fails (at the Worst Possible Time)

This past Saturday afternoon, my Dexcom G6 sensor stopped working. It wasn’t sending data to my smartphone app or my transmitter, so I was forced to fly blind…at a party with tons of people I’d never met before, an impressive food spread, and few beverage options other than beer from a keg or spiked punch.

Definitely not a good time for my Dexcom sensor to go kaput, especially considering I was getting on a plane the next day and didn’t have a backup. And I wouldn’t get my hands on a fresh sensor for a couple more days, when I would return home from my adventures in Washington, D.C. and Nashville, Tennessee.

So yeah, it was pretty much the worst timing ever for my heavily-relied-upon diabetes technology to fail.

How did I handle it? It might sound incredibly obvious, but…I just reverted back to life before a CGM, meaning that I tested my blood sugar much more often than I do when the ol’ Dexcom is up and running. At the aforementioned party, I sucked it up and pulled myself away from conversations to check my numbers every so often with my meter. I still participated in barbecue and beer consumption, but I dialed it back because I couldn’t be sure of what direction it would send my blood sugar in, or how quickly it would happen.

As for the rest of my trip, and my travel days, I remained diligent. I’d test and correct as needed approximately every two hours. I set alarms for the middle of the night so I could be certain that I wasn’t too high or too low. I went back to relying on sensation – was I feeling thirsty because my blood sugar was high? Was my shakiness a sign of an oncoming low? It surprised me how easily I slid back into those routines, but I guess that after so many years of practicing them, it makes sense that I was still in tune with my body.

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No data…no problem.

And, perhaps most shocking of all, I remained pretty calm about the whole situation. Normally, it’d send me into a panic and I’d chide myself over and over for not having a backup sensor. But, really, I carry around enough diabetes junk – adding a clunky sensor insertion device into the mix sounds excessive. After all, the sensors are supposed to WORK for the full ten days that they guarantee. It gets exhausting, having to anticipate technology failures when they should never happen, so I shouldn’t be upset with myself for not carrying more than the essentials.

The lesson in this experience, I think, is to be unafraid to depend on my intuition. I literally grew up managing my diabetes with hardly any technological aid, and I can do it again now in a heartbeat as long as I trust myself and the process.

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.

A Bad Case of T1D FOMO

You might be staring at the latter half of this post’s title and asking yourself, “What kind of acronym is THAT?”

Let me help you out: The title is meant to indicate that I’m suffering from a bad case of type 1 diabetes-specific fear of missing out. (T1D FOMO…if it wasn’t a thing before, it is now.)

I decided that this was the best way to describe how I’m feeling about missing out on tons of excellent diabetes conferences, events, and meet-ups this summer. I think it’s striking me particularly hard this week because I know that the Friends for Life conference is about to kick off in Orlando. That one is special to me because it’s the first conference I ever attended, and it’s hard to believe that it was already five years ago.

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#SquadGoals from my first conference, which was already five years ago.

Why am I unable to go to most of these gatherings? And what’s so great about them, anyways? Well, to answer that first question, there’s several reasons why I have to skip many of them. The biggest reason is financial: The cost of conference attendance can be astronomical. Between airfare, hotel, registration, and various other conference fees, you’re easily looking at spending a minimum of $800 – and that’s if you can find cheap and direct flights to the destination. The other side of the coin is that I’d have to reserve my limited vacation time for these events, and potentially sacrifice time off that I could’ve spent with family and friends. I understand that logistically speaking, it makes the most sense to have the majority of these events in the summer months – kids are done with school, generally good weather makes it easier to travel, etc. But having to choose between a diabetes conference that’s bound to be a wonderful time and a highly-anticipated vacation with loved ones is a choice I’d rather not make.

So you think that those factors would make my decision easy, but it isn’t. I hate not going to these events because I know firsthand how magical they are. It’s really neat to meet up with so many people from the T1D community all at once, and it’s even more incredible when you get to shake hands or embrace someone you’ve connected with online, but hadn’t met IRL (in real life) yet. Whether the conference is just a weekend or several days long, it’s awesome to feel “normal” throughout the whole thing. You’re among people who don’t look at you funny when you test your blood sugar before a meal, and the chorus of beeps and buzzes from medical devices never get mistaken for cell phones going off. Sure, I can virtually attend a conference by scrolling through my social media feeds and reading updates from T1D attendees, but it just isn’t the same. While it makes me happy to see them having a fabulous time together, reunited at last, I can’t help but feel slight pangs of jealousy – this is where the FOMO comes into play – as I imagine everything I’m missing out on.

I know I’m not alone in this feeling – there are many others in the diabetes community who can’t go to conferences for several different reasons, even though they want to go. And I can take comfort in the fact that even though I couldn’t go to a bunch this time around, there will always be more in the future, and some will be more affordable than others.

My bad case of FOMO will go away before long, and in the meantime, I know that there are probably tons of other T1Ds who are attending their inaugural conferences this summer, and who will experience what I did five years ago for the very first time. And that thought puts a smile on my face.

Three Things I Learned about Myself after Running a 5K

I recently ran in my first-ever 5K race. In the weeks leading up to the race, I experienced a variety of emotions – particularly self-doubt – that made me question whether I could really do it. Would my diabetes cooperate the morning of the race? Should I eat a big breakfast before running, or go into the race fasting? How would I handle correcting a low blood sugar while running? What about a high blood sugar? Was I even competent enough to run?

All of my diabetes anxieties aside, I’ve always hated running. HATED it. I played field hockey every fall when I was in high school, and we were required to run a timed mile before the start of each season. I dreaded this mile because I usually wound up finishing the mile last, or close to last – my asthmatic lungs and negative attitude helped ensure that I would give up running halfway through and resort to walking a sluggish, defeated pace.

So like I explained in a recent blog post, making the decision to go through with this 5K wasn’t easy. But I wanted to take on the challenge and prove something to myself.

AND I DID IT!!! I’m pleased to say that I completed the race on a gorgeously sunny Saturday morning along with hundreds of other runners. I was totally proud of myself for accomplishing this goal, especially since I had less than a month to train for it. Plus, I learned a few things about myself after participating in the race:

  1. I should have more faith in my ability to manage my diabetes. I spent so much time dwelling on the “what ifs” (a bad habit of mine) regarding what my diabetes might do during the race that my stomach was doing somersaults as I approached the start line. But as soon as I turned my music up and started running with everyone else, my doubts vanished. And better yet, I was absolutely fine throughout the race. I didn’t eat anything beforehand and went into it with a blood sugar of 142, and I stayed pretty steady for most of the 3.1 miles (I did start to spike soon after crossing the finish line, but I’m certain that was because of the adrenaline). I simply did what I’d been doing during my past month of training, and my experimentation with fasting vs. non-fasting paid off.
  1. I’m a lot more determined than I realized. I’ll admit that there were a few points throughout the race when I wanted to give up. I was breathing hard and my legs were starting to ache, but not once did I stop running and slow down to a walk. I pushed myself to keep going, even though I didn’t want to, and my determination helped me achieve my personal best running time.
  2. I’m ready to train for future races. This experience awakened something in me that wants more challenges. I’m still not in love with running, but I think I am a fan of trying things out of my comfort zone. I want to continue to get faster and stronger so I can try tougher races and physical tests. It’s almost like it’s an outlet for me to tell my T1D that it can’t stop me – that I’m stronger than it no matter how hard it tries to knock me down.

Christmas Eve and 20 Years of Diabetes

Merry Christmas Eve, to all those who celebrate it! Christmas is one of my absolute favorite holidays. I love spending time with my family and friends, attending mass, baking (and eating) Christmas cookies, and decorating the tree. This time of year is pure magic; a time when I feel most joyful.

This Christmas Eve also marks my 20th year of living with type one diabetes. I don’t remember much from that night in 1997, seeing as I was only four years old. I recall tons of family members visiting me in the hospital and bringing gifts for me. One of the gifts I received was a honey-colored teddy bear that I particularly liked and hugged often throughout my hospital stay.

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Beyond Type 1 featured me on their Instagram Wall of Warriors last year. This is how I #LiveBeyond.

Twenty years with diabetes is a long time. Too long, especially since every couple of years since my diagnosis I’ve been told that a cure would be found “soon”. I’ve come to accept the fact that “soon” just might not be within this lifetime, and rather than dwell on that, I choose to focus on the joy of life itself. How lucky am I to live a full life, surrounded by loved ones, employed full-time, with a roof over my head and food on my plate? How lucky am I to be able to have access to the insulin I need and to have a choice when it comes to the pump and meter I use? How lucky am I to have the knowledge and willpower it takes to manage a chronic illness every second of every day?

I’m extraordinarily lucky. I’m blessed.

That’s what I’m focusing on joy on this significant diaversary. I’m embracing the spirit of the season and recognizing the good in this life. Diabetes takes things away from me sometimes – a full night’s sleep, an occasional dessert, a missed trip to the gym – but I refuse to let it take my joy.