The DOC: The 24/7 Support System I Never Knew that I Needed

I’ve lauded the DOC (Diabetes Online Community) time and time again for connecting me with individuals globally who are also affected by type one diabetes. And I don’t foresee an end to my desire to express gratitude for this amazing community, because over and over, members of it continue to blow me away with their words of encouragement and gestures of friendship.

My latest wave of gratefulness was spurred when I arrived home from work on Monday to a cheerful, Tiffany-blue envelope waiting patiently for me to open it. It was a delightful little package from my friend Sarah, who I “met” via Instagram over the summer. Besides diabetes, we share common interests in fitness, wellness, our pet dogs, and bright colors, among other things.

Sarah went out of her way to mail me a few goodies (shown in the picture), including a cute T1D key chain and an adorable cactus card with a message of support written inside. I was incredibly, pleasantly surprised by all of it. It wasn’t about the material items for me (though they are totally my style, and I can’t wait to make use of them). It was more so how she took the time to put it all together for me, cleverly incorporating some of the things that introduced us to one another in the first place, that really blew me away.

57D80F3D-2B6D-4B8D-9027-41219C9DFD0B
Sweet trinkets from a sweet friend!

It got me thinking about the larger diabetes community I’ve met and harvested friendships with in the last several years. And as hard as it is for me to properly describe the level of richness, knowledge, and support that those friendships have given to me, it’s beyond easy for me to say that I am infinitely thankful for all of them, and I hope that in return, I am able to offer at least a fraction of the same to others.

With all that said, it’s even more mind-blowing to me that I resisted this community for such a long time. For the first 14 years or so that I lived with diabetes, I rejected the notion that I needed peer support to help me manage the emotional and physical aspects of diabetes. I turned down offers to go to diabetes camp. I didn’t interact with the only two other diabetics in my school’s district because I feared social isolation. In some situations, I even pretended that I didn’t have diabetes, because my yearning to be normal like everyone else overpowered my need to make my health a priority.

That’s why I don’t think it’s a coincidence that things started to turn around when I met other T1Ds my age. That marked the point where I could have open, honest conversations with others who were going through similar life events at the same time as me, without the judgments or criticisms I may have had to endure if I had those same conversations with family or doctors. While I know that I need to give myself and my personal growth some credit for improving how I manage my diabetes, I would be remiss if I did not also attribute some of that credit to the members of the DOC who have made meaningful contributions to my life and my outlook on it.

It’s funny that something special in the mail made me contemplate all of this, but Sarah’s thoughtful package to me is a tangible representation of how connections within the DOC have changed me for the better.

Thank you, Sarah, and another big thank you to those of you in the DOC that I have met, as well as those I have yet to meet.

Advertisements

T1D, the Common Denominator

I know a lot of people who have type 1 diabetes. And I consider many of them friends of mine.

You know what’s so cool about that? It’s that diabetes was merely the common denominator, something that we knew we shared, but not the sole reason for friendship. Diabetes provides a launching point into which we can find other shared interests: from TV shows to travel destination wish lists, the conversations we have don’t often linger on diabetes. But even when they do, it’s nice to talk about anything-and-everything diabetes with people who speak the same T1D vernacular.

77521CF5-A5CE-4103-9BE3-A4DA1DB4881C
I’d met half of these people prior to this event, and I became fast friends with the other half, thanks to our common denominator: diabetes.

Case in point: An end-of-summer pool party I attended a few weeks ago that introduced me to a handful of T1Ds. Sure, we started off talking about things like medical research experiences and CGM trials, but then we moved on to the other topics we cared about and really got to know each other. It proved to me, for the umpteenth time, that it’s just so dang special that something as shitty as diabetes can bring so many good things into my life, including friendships with some marvelous human beings.

 

Diabetes in the Wild: Beach Edition

I’d just settled into my beach chair, ready to crack open a book, when I spotted her.

She was walking as quickly as she could through the sand to help her friend carry a cooler, but not fast enough for me to miss the CGM on her upper arm. I sat up in my chair and wondered whether I should say something to her – after all, not all T1Ds are excited to encounter one another in the wild.

She caught up with her friend and grabbed the other end of the cooler. As they passed me, I saw she was wearing an OmniPod on her opposite arm. Not just any OmniPod, though: This one was decorated with some sort of emerald green design. I took that as a sign, a literal green light, that she probably wouldn’t mind if I said something.

“Nice OmniPod!” I called out.

She looked around, trying to locate my voice. My mother, who’d been reading the whole time and was unaware of a fellow T1D in our midst, shot a bemused look in my direction as the woman finally made eye contact with me.

“I have one too,” I said, pointing to my arm.

“Nice! I like your decoration. Do you have a Dex, too?” She asked, smiling at me.

“Yup – I’m wearing mine on my abdomen. I saw you had both and couldn’t resist saying something.”

“Well, we’ve got two OmniPodders over here,” She pointed to where she’d set up camp for the day.

Beaming, I told her that we had two in our group, as well. My mom offered her arm up to show her pod. I think that Mom was half entertained, half embarrassed over the whole exchange, so it made me happy to see her join in at the end.

The woman returned to her spot and we wished her well. Mom and I soaked up the sun for a few hours before deciding to pack up for the day. As we were getting our belongings together, a young woman approached us.

1AC16B6B-1C34-4BC7-B8E9-96D612287930
Proud to wear my pod.

“Excuse me, may I ask what is on your arms? I’ve seen numerous people wearing that sort of thing today and I can’t figure out what it is, for the life of me!”

I was going to answer for the both of us, but my mom beat me to the punch. She explained that it was an insulin pump, though other people may wear different medical devices that look similar to it. The girl, seemingly appreciating the response, remarked that it was cool and that she was surprised to see so many people wearing them on the beach. She wondered out loud if she was missing out on some sort of trend.

“Yeah, all the cool kids have them,” Mom said, and we all laughed.

I don’t know how many people on the beach that day were wearing OmniPods – or any other insulin pump, for that matter – but I do know for certain that my mom is right: All the cool kids have them, and they’re much cooler for wearing them with pride in full view of the world.

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.

1A21FA0F-4B51-4F32-A3D7-293B7C269EB4
#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.

Why I’m Thankful I DIDN’T Attend Diabetes Camp as a Kid

Growing up, the notion of diabetes camp was gently nudged into my brain each Spring. My endocrinologist and my parents would ask me, “Do you want to give it a try this year?” and my annual response, unfailingly, was “NO!”

To this day, I still don’t really know why I was so against diabetes camp. Part of the reason may be because I was a bit of a nervous Nelly growing up (okay, okay, I still am) and didn’t like the thought of sleepaway camp: It meant being away from home for an extended period of time, which made me feel nothing but anxious.

But my best guess as to why I didn’t want to go is that I felt that camp wouldn’t benefit me in any way. Both my mom and my aunt have type one diabetes, so they were (and still are) my go-to sources whenever any sort of diabetes issue crops up for me. I didn’t see how meeting kids my own age with diabetes would help me; after all, I thought I had everything I needed in my mom and aunt.

Things changed drastically for me when I started college and made the transition to caring for my diabetes independently. I got wind of a diabetes student organization on my campus and was interested in attending a meeting. That was it for me: for the next three years, I was very involved with this organization (the College Diabetes Network), eventually becoming the President of my school’s chapter and continuing to this day to volunteer for them whenever I can.

IMG_3242
I wasn’t ready for any kind of diabetes camp as a kid…but it’s a different story now that I’m an adult.

My involvement with the CDN has resulted in me meeting countless other T1Ds my own age, and it’s been amazing. I love sharing stories and learning from them. And as it turns out, most of these individuals went to diabetes camp when they were young and loved it. In many cases, diabetes camp is where they thrived and met some of their closest friends. They learned a lot about caring for their own diabetes and became more independent with diabetes management at a younger age.

But even after hearing the rave reviews about diabetes camp…I’m still thankful that I didn’t go to it when I was a kid.

Why? Because I think that a person’s journey with their own diabetes is highly personal. Like insulin-to-carb ratios or multiple daily injections versus insulin pumps, diabetes is often a disease about choices and responsibility. As an individual with diabetes, I hate being told how to handle my condition by someone who thinks they understand it better than me. I’m the one person in this world who understands MY diabetes better than anyone else. I know my body and I know what diabetes treatments and decisions are best. And for those few years of my life, I thought it was best for me to not go to camp. It was out of my comfort zone, and I refused to be coerced into going.

Perhaps in the back of my mind, I knew I’d have an opportunity later in life to connect with people my age who have diabetes. And I’m so thankful that I did because it came at a time in which I felt ready and was more accepting of my diabetes overall.

So there are no regrets for me when it comes to my choice to not attend diabetes camp. You could say that my decision to stay at home during those summers made me a happy camper…

Sorry, not sorry for the bad pun.

 

Diabetes Connections: Gym Edition

“Are you a diabetic?” Despite the fact that I was wearing earbuds, I heard the question that was undoubtedly being directed toward me.

I glanced to my right and met the gaze of the teenage girl on the treadmill next to me. I smiled, tugging an earbud out, and said, “Yes, I am. My OmniPod gave it away, didn’t it?”

She nodded eagerly. “I have a Medtronic pump, but I know what an OmniPod looks like. When I saw it, I had to say something to you.”

This marked the beginning of what wound up being a thirty minute interaction with Shae, a high school senior with bucketloads of energy and questions for me about life with diabetes. We specifically chatted about college, and I couldn’t resist telling her all about the College Diabetes Network and what a useful tool it was for me during my three and a half years at UMass. The more we spoke, the more it felt like I was looking at a mirror image of myself from seven years ago. She had just finished taking her AP Psych exam and was relieved it was done. Her senior prom was in a few days, and she described how she’d wear her pump while donning her fancy gown. She was excited about college, but a little nervous about the dreaded “Freshman 15” and whether her diabetes would adjust well to college dining halls.

IMG_3979
It’s so funny to think how something as crappy as diabetes can introduce so many amazing people into your life.

I did my best to answer Shae’s rapid-fire questions frankly but reassuringly. As I told her about how much my CGM helped me in college (especially since I was still on multiple daily injection therapy at that time), she exclaimed that I was inspiring her to want to give her CGM another shot (pun unintended – I love spontaneous diabetes humor).

As we parted ways, we both grinned broadly and wished one another well. This is why moments like this – diabetes in the wild – are so great. Diabetes instantly bonds you to a stranger who you might not otherwise ever interact with, and the beauty in that immediate connection is priceless.

TypeOneNation, Boston: A Wicked Fun Family Reunion

St. Patrick’s Day is a favorite holiday of mine because I enjoy celebrating my Irish heritage. Almost every year, I eat a traditional boiled dinner, listen to Irish music, and wear an excessive amount of green.

This year, though, was a little different. In addition to all of the above, I attended the TypeOneNation summit in Boston. The event was organized by JDRF and just about 900 people with diabetes attended, along with their families and caregivers.

There’s nothing like being in Boston on St. Paddy’s day, even if it is for an event that has nothing to do with the holiday’s shenanigans. The spirit of the day made it slightly less painful to wake up at the crack of dawn in order to catch an early morning commuter rail into the city. As I sipped an Irish cream iced coffee from Honey Dew (absolutely delicious) on the ride, I got myself pumped up for what would surely be a fun day.

Once we arrived at the Back Bay station, I was one frigid (and mercifully short) walk away from the event space: the Boston Marriott Copley hotel. I went straight to the registration table so I could receive a name tag and itinerary, then made a beeline for the vendor hall. You can never have too much free diabetes swag, am I right?

Within the hall, I recognized many familiar faces and happily made the rounds to chat with some of my T1D friends in attendance. I couldn’t help but feel like I was at a family reunion of sorts as I reconnected with people who I don’t get to see often enough.

IMG_5859.JPG
I was pumped to see some friends I’ve made through the CDN at the summit!

Before long, the events of the day got into full swing as the keynote speaker, Nicole Johnson, addressed the crowd. Nicole won the Miss America pageant in 1999 soon after she received her diabetes diagnosis. She’s done many incredible things since earning that accolade, and she delivered an inspiring speech about living life with diabetes to the fullest. As she spoke, I looked around the room and noticed all the little kids who were there. It warmed my heart to see how they received Nicole’s words. Many of them looked at her in absolute awe. It was obvious that they thought she was pretty great, and I bet that having diabetes in common with her helped them to feel just as cool. Nicole is definitely a wonderful role model!

The rest of the day went by much too quickly as I went to two different talks offered at the summit. One was about going to college with diabetes, and the other was about sex and drugs – the “taboo” diabetes topics. Even though I’ve already experienced what it’s like to go off to college with diabetes, I wanted to go to this talk because it was given by my friends from the CDN. I also wanted to meet the parents and children at the session because I was curious to learn about their concerns. As someone who went to a very similar talk seven (?!) years ago, I felt that I could potentially offer reassurance to these families, especially since the whole college experience was so recent for me. And it turned out that the woman seated next to me was an anxious mom who seemed receptive to the words of encouragement I spoke to her at the end of the panel. While I believe that the session could’ve lasted many more hours (everyone was so engaged in the conversation), I think that the session acted as a good launching point into future discussions for many families who are going to make this transition soon.

I wolfed down a quick lunch – I loved seeing the food labeled with carb counts – before heading to the next session. I chose it because, c’mon, a title like “Sex, Drugs, and Rock n’ Roll” can get anyone’s attention. Plus, I feel very strongly that the touchier diabetes topics SHOULD be talked about more often. They can be scary to approach, but it’s important to know what to expect in certain situations in which diabetes can play a major role. I had to duck out of this one a bit early to catch the commuter rail back home, but they were delving into some pretty juicy stuff when I got up to leave. I give major credit to all of the panelists in that one – it can’t be easy to talk about highly personal intimate matters in a room filled with strangers!

Although my time at the summit was truncated, I’m so glad that I took the time to go to it. It’s no secret that I enjoy talking with other people with diabetes. Hearing their stories and sharing experiences makes diabetes feel less isolating. And I’m thrilled that I finally got to meet a few people I knew from the DOC but had yet to see in person!

Diabetes conferences, meet-ups, summits…they’re the types of family reunions you actually get excited about and want to attend.