And we called it #VegasDust

11082573_10153184953832328_3715320575136533662_nConferences attended by members of the Diabetes Online Community have always been surrounded by intrigue. Who gets to go, who pays for what, who feels excluded, who feels included. Reading posts in My Diabetes Secret makes you wonder if this community is as united as we think. I for one have been skeptical at some point; I have felt excluded because of my type of diabetes, or simply incapable of participating to the same extent many others do. I have done my best to do a little—successfully and unsuccessfully. I am sometimes afraid to share my ideas or implement them, and I have felt inadequate when life gets in the middle of trying to be an effective diabetes advocate.

Last year I decided I needed a break. I stopped participating actively in the DOC, and I took time off projects like DSMA en Vivo to regroup and think about my own diabetes management. I don’t know if I should call it diabetes burn out… but I felt like I was trying to give too much and was getting too little in return. I may be an advocate, but first and foremost, I am a person with diabetes who also needs support to deal with the intricacies of a chronic condition that gives you no time off. And to be brutally honest, I even felt like just another person with a twitter handle but no real connections.

When I first heard about the Diabetes UnConference, I imagined it was going to be yet another event where companies would gather PWDs like cattle, or they were going to bombard us with a lot of facts about diabetes technology that would go over my head, so I didn’t pay too much attention to it. Then my dear friend Jennifer told me I should come and we could be roommates. That was the motivation I had to even think of attending the conference… to meet a really good friend in person. Other than that, my expectations were low, but I went ahead and booked the flight, booked the hotel and registered. Many months passed, and the conference went completely off my radar. I was taking a break from social media, and I wasn’t even getting emails about it. Then little by little, announcements started coming, and I started getting excited. But my expectations were still low… and then I arrived in Las Vegas.

If you are reading this post wondering how we all got there, if we were bribed or enthused by a shiny marketing campaign, let me tell you we all dipped into our own bank accounts because we simply wanted to be there (of course there were sponsors whose support we are so grateful for, but the dynamic was completely different). If you are wondering if the only people present at the conference were the big fish of the DOC, let me tell you I was glad to see so many new faces and hear the stories of so many people that have, at some point, felt like they had no place in this community but found a safe place to land. The UnConference wasn’t about learning from the experts… not the kind of experts you are thinking about anyway. It was about connecting as patients.

I won’t go into detail about what went on in that conference room—what happens in Vegas stays in Vegas—mostly because it was so personal, so deep, I would feel like I am destroying the trust we were all so fortunate to gain. But I can tell you one thing: never in the 7-8 years I have been an active member of the DOC have I come back from an event feeling this raw, this emotional, this crazy… this so freaking awesomely finally understood. And there have been a lot of tears, because it’s dusty in Las Vegas, but mostly because every single person who attended the Diabetes UnConference left a mark in my heart. And for 15 years I have kept so much inside me, about how hard it is to live with diabetes, and it finally came out with tears, laughter, tons of hugs and the most encouragement I have received in my 15 years as a PWD… person with diabetes, regardless of its type.

And we called it #VegasDust.

vegasdustPhoto credit: Christopher Angell

 

Diabetes Blessings

It is not easy to see diabetes as something that comes with blessings. But it does, and the people who live with it know it. Here are a couple of pieces that pretty much sum up how we, in the diabetes online community, feel that we have also gained something positive from dealing with our condition.

At Suite D, we were asked if there is something we are thankful for.

At Huff Post’s Healthy Living, we shared the good things about diabetes.

It makes me happy and proud to belong to a community where people inspire each other every day.

An Angel Called Rita

Today is No-D Day. We here, at the DOC, promised not to talk about the D today; not because we want to be irresponsible but because sometimes we just need a break. So thank you to George Simmons for coming up with the idea of making us think of something else.

My post today is dedicated to my wonderful friend Rita. I’m truly convinced she’s one of those angels God put in my life, and I know for a fact that I wouldn’t be here now if it wasn’t for her. We have been co-workers and friends since I started my job almost 3 years ago. We’ve always had fun and I’ve always admired her personality, her strength and her perspective in life. She’s one of those people who always smile, who always laugh at your jokes, and she is one of the most generous human beings I know. I always knew I can count on her, and life didn’t prove me wrong.

Rita was my support when my world came crashing down, she provided a safety net for me, opened the doors of her house for me, no questions asked. She not only offered me a place to stay, she made me part of her family. And all through spring and summer, when my world was at its darkest, she let a light shine on me by not letting me get stuck in my pain, by showing me that life was worth living and that I was going to be happy again. Oh, how much I enjoyed all those days at the beach and the endless laughter, the Cinco de Mayo margaritas listening to an Elvis Presley impersonator… Rita saved my life.

As the new season settles, our friendship strengthens and I not only see a friend in her, but also a mother, a confidant, someone I will always be in debt with and someone I would do anything for. I’m still at her house, and I keep on rebuilding my life after the hurricane with her support. What started as a safe haven has now become my home and for that I’m extremely grateful.It goes to show that we’re never alone.

Thank you, Rita… My life won’t be long enough to repay your kindness.

Advocate and then some more!

This weekend, as we took a break from  the activities at the Taking Care of Your Diabetes expo in Des Moines, I told my friend Marie that every day I strive to do something good for someone, big or small. It comes from the example my parents gave me. That is probably the main reason why I decided to become a diabetes patient advocate, and try to learn as much as I can about how to understand every single person affected by this condition. I don’t do it for recognition; at the end of the day I prefer my name NOT to be mentioned anywhere… I just do it because I care.

One of the things about diabetes (and any other kind of disease) is that when you meet someone who is also dealing with it, it feels like you just added insta-friend powder. The most awesome moment of my weekend came after I shared a lunch table with my friends, and then a lady we didn’t know asked if she could join us. We talked about diabetes, shared what type we had… you know, the usual. And then we mentioned DSMA, of course (Scott Johnson and Mike Durbin were at the social media booth telling people about what diabetes advocates do). When we finished lunch, the lady got up to leave and I gave her my website business card and a Diabetes Advocates brochure I happened to have with me. Her eyes watered up and she asked me if she could give me a hug. She was grateful to hear us say that she’s not alone, that there are people out there who will listen to her and she can count on. And that, my friends, is what makes me so proud to be part of the DOC. Because no matter what I do, I can do a good deed every single day.

This was my first year at TCOYD, and I have to be honest and say that my main reason to go was to hang out with the fantastic people I’ve met in the diabetes online community. But it’s not because I want to hang out… it’s because I love to see them in action. People involved in the You Can Do This Project, inspiring patients to support each other via words of encouragement. Projects like Diabetes Art Day where we learn to express what we can’t with words via art. People like Mike and Marie who took the time to help a very funny old lady when she wanted to check her blood sugar and didn’t know how to. That is what moves me, that is what makes me see my friends as superheroes, people who give big part of their lives without asking for anything in return… or maybe just a hug, like the one I got.

You Can Do This Booth  Diabetes Art Day
There is an excellent article written by Kerri Morrone Sparling on how to become a patient advocate. Everyone should read it. We can be our own advocates and we can help other people. For me it’s all about reaching the community and I’m grateful for being part of DSMA because it allows me raise my voice every week and tell other people with diabetes that they are not alone.