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.

Baseball, Beers, and ‘Betes

I really wish that I could write a blog post entitled “Bears, Beats, and Battlestar Galactica”, and have it relate to diabetes in some way…but I guess I’ll have to deal with the fact that it’s not easy to work quotes from “The Office” into a diabetes blog.

Guess that this title will have to do! Plus, it really does tie into the content of this post, so…

There’s nothing like a baseball game in summertime. I admit that I’m far from a sports fanatic, but I do take pride in my Boston teams (namely, the Red Sox and the Patriots). When I found out that the Red Sox would be playing against the Nationals when I visited Washington, D.C. last week, I was pretty pumped and decided to buy tickets. After all, what better way to break up the workweek?

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An important note: The Red Sox crushed the Nationals at this game. Final score: 11-4.

It was a great choice. Even though it was a sweltering 100 degrees out, I had a fun time with friends. We drank beers, ate burgers/French fries/hot dogs, and cheered loudly for the Sox. My diabetes stayed far from my mind for once as my blood sugars played nicely, which was pretty surprising to me because I wasn’t exactly consuming low-carb items. I think that walking around the stadium in the heat helped combat the starchy foods, though I did have to bolus for a high blood sugar by the time we got home from the game.

But the point is, it felt wonderful to not worry about my numbers, even if it was for just a few hours.

 

 

 

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.

Happy Birthday, America!

Today is the Fourth of July! I’ll be spending the day in our nation’s capital. While I’m not entirely sure what the day will bring, I do know that I’m bound to feel a swell of patriotic pride, as I imagine the vibe of Washington, D.C. this time of year oozes red, white, and blue.

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The Stars and Stripes

As much as I love my country, I still think it has a long way to go. I promised myself I would refrain from getting overly political on my blog (for many reasons), but I will say this one thing: Many things about healthcare in America need to change. I found an article on the New York Times recently that opened my eyes to the dire state of the global insulin crisis. Here are some facts from that article:

  • One in four patients with diabetes are cutting back on insulin because of cost.
  • The typical cost of one vial of insulin is $130. One vial of insulin lasts no more than two weeks for a person with diabetes.
  • There is no generic form of insulin. This means that prices skyrocket since there is no competition among generics.

Why is this happening? Why do families find themselves being forced to choose between feeding their families or affording life-saving medication? It’s unacceptable that profits are valued over life in our great nation.

Things need to change. The politicians and policymakers who have the power to make right and just changes need to take a good, hard look at Americans who are crying out for help and struggling to simply live.

This topic is worthy of thousands more words, but I’ll leave it at that for now. Maybe it will open someone else’s eyes, too.

For now, have a beautiful Independence Day doing whatever it is that makes you feel free – and be safe!

Diabetes: A Condition of Consistency

“Consistency is key” is a well-known adage for a reason: It applies to many things in life, including diabetes.

This has resonated more and more with me over the last few months, as I’ve experienced greater interruptions in my day-to-day routines. The most obvious change has affected my Monday through Friday lunch hour at work. I usually need to go home three out of five days to take care of my puppy – feed him, play with him, and make sure he hasn’t totally destroyed anything in the few hours since I last saw him. I don’t mind this at all, because I love my little Clare-bear, but on days that I have to be with him, my diabetes is definitely affected.

For starters, I have to eat my lunch much later than I normally do on non-Clarence days. Technically, I could eat my lunch when I go home to see him, but I have a very narrow window of time – approximately thirty minutes – to be with him. It doesn’t seem fair for me to go home, pour out his kibble, then spend the majority of our half hour together putting together and eating my own lunch. So I spend my lunch break giving the puppy my full attention, which makes us both pretty happy.

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My Clare-bear certainly knows how to keep me, and my diabetes, on our toes!

Eating lunch during my allotted break is ruled out, so I have to decide whether to eat it before or after my stop home. I usually end up forcing myself to wait until I get back from feeding Clarence to eat, but this is easier said than done for a few reasons: Sometimes, my blood sugar will crash while I’m with the dog, so I have to eat a snack to correct it because my actual prepacked meal is waiting for me in the office refrigerator. Or I have to scramble from one meeting to home and then back to the office for another meeting and won’t have a chance to sit and eat until 2 o’clock, which means that I have to sit through an afternoon meeting without a full attention span because all I can think about is my grumbling stomach. On those days, I’m pretty hangry by the time I get to eat, and even more so irritated when my blood sugar retaliates at me later on for waiting so long to eat.

That being said, I’ve had to make peace with the fact that my weekday/lunchtime blood sugars will be a bit all over the place. I know that things will be easier when Clarence gets older, but for now, I’m determined to enjoy his puppy-hood without diabetes interfering too much. And if nothing else, it reminds me how important it is to stick to the basics with diabetes: Eat regular, healthy meals and the habit will reflect well on blood sugar and A1c.