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.

Double D

Diabetes + Depression. It’s a constant, double struggle. You need motivation to get your life and health in order, and there’s this extra weight on your shoulders pulling you down. Been there, done that… still deal with it every single day because my depression seems to be as chronic as my diabetes. It makes things harder in every sense with the lack of energy, the low self-esteem that comes with it and the feeling that it doesn’t matter what I do things will never get better. So why bother?

Sometimes I wonder if I’m just lazy with my diabetes, but then I figure I’m not the only one who wakes up some days wishing it’s all gone so I don’t have to work on it because it’s darn annoying. I look at myself in the mirror and I see (I know!) I have to do so much better than this and stop using excuses. But for me, it’s not only about food choices, exercise and taking my medication… I struggle very hard to keep my sanity as well. I know that if I forget to take my happy pills everything else will fall apart. Then it becomes a vicious cycle: my diabetes and my weight issues make me depressed, and my depression takes away my motivation. It’s so much fun… NOT!

During the Roche Social Media Summit I had the chance to listen to Dr. William Polonsky from the Diabetes Behavioral Institute. He basically said we need to take a vacation from diabetes from time to time and do it smartly. I wrote some about it in my previous post. At the end of the session people started sharing personal stories and I was afraid to talk. First because I’m stupidly conscious about my accent, and second because I avoid public speaking like the plague, especially when it’s about feelings and personal trials and tribulations. But then I gathered some courage and I told everyone in that room how I feel: Sometimes I think I’m not worth it. Sometimes I think it wouldn’t  be a big loss if I wasn’t around. I heard all kinds of “What are you talking about? I’d miss you! You’re wonderful!” — I technically know all that, but my depression speaks too loud sometimes.

After I was approached by several people to thank me for saying what they feel but are never able to express, I felt like some of that weight was lifted off my shoulders. I’ve always know I’m not the only one dealing with depression and diabetes. But knowing that I can openly talk about it and ask for help and support certainly makes things easier. Especially when I can related to those who have to fight the diabetes dude every day.

I know that my health will greatly improve when I start making the right choices, not just for a day but for a life. But in order to achieve that I need my mental checkout from time to time. And happy pills it is.

Keeping it Real, Making it Happen

Another year, another Social Media Summit organized by Roche. I was honored to be amongst the guests for a 2nd year and this time the experience was even better for me (not to mention I got to go to San Diego, which is beautiful and I want to visit again!). Not only because it was great to know that the diabetes social media community is making things happen, but because I was able to open up, get to know people better and even share more out of my comfort zone. Bear with me. This post will be all over the place, but I’m trying to recap as much as possible. Going through my twitter posts and making sense of all the hash tags.

Dan Kane from Roche made something very clear when we asked why we were there. Roche (and hopefully other companies) want to get to know us better so they can become better at what they do. And I think it’s wonderful that they’re turning to the real people, their customers, to know what we need and how we perceive them. We’re a tough crowd, I give you that, but that’s what I loved about the summit. We are not afraid to speak our minds, we demand answers, we demand actions (some way better than me because I tend to be a wallflower). And it’s working. It was amazing to hear about the results of the Big Blue Test campaign (2,000 children received the insulin they needed!), the efforts to help people in disaster areas like Missouri and Alabama and how Roche is making its products more accessible to people despite a low income.

We are not interested in hearing the facts about diabetes. We have years of experience and the marks on our fingers to prove it. So when the International Diabetes Federation speaker started presenting those facts, we weren’t that interested. What we wanted to know is what IDF is doing to help fight diabetes. Slowly but surely we got there, and I was grateful to hear about the Life for a Child program. I remember last year when I asked David Edelman and Manny Hernandez how we could help children in developing countries get the insulin they need. And now I see this happening, the IDF making it happen, and our social media community sharing it with results. And to hear IDF’s president, Mr. Jean Claude Mbanya, talk passionately about this cause inspired me even more to do something about it so you’ll be hearing a lot from me. There is no reason and no justice in the fact that there is more than enough insulin in the world, yet it’s not accessible to people in developing countries. “Accidents of geography and history determine who lives and dies of diabetes.” That doesn’t seem right at all.

Then there was Jeffrey Brewer, CEO of the JDRF. It is refreshing to listen to engaged people who really care about the diabetes cause and work hard toward it. People kept asking me if I was interested in what he had to say since I have type 2 diabetes and the JDRF is basically all about type 1. My answer was a big YES. I was very impressed and inspired by Mr. Brewer. I believe he’s a great worker and advocate, and he put the facts simple and clear. It is important for me to understand all types of diabetes and what different organizations are doing to fight the condition. If I want to advocate and help, I need to be informed. His speech was motivating, he wants results and he’s working on getting them. Because, when it comes to a cure, “It’s not about when it happens for a mouse. It’s about when it’s available to people in their doctor’s offices.”

And Dr. William Polonsky… that was a tough one! Many people seem to ignore that diabetes has a very strong emotional component. This is a chronic disease, the toll is heavy, the level of frustration insane. Mix that with other things like depression and you have a cocktail bomb ready to explode at any time. So it was all about taking a break from diabetes, a mini-vacation of sorts, but doing it smartly. The concept was easy to grab, now the practice is another thing. I started to hear all these stories about how people cope with diabetes and I knew I was going to end up crying. But then there are people like Sara who point an imaginary gun at you and make you talk… so I did. Way out of my comfort zone. I dislike public speaking, especially when it involves showing my vulnerabilities to a room full of people. But it was liberating and it helped me understand that I don’t need to carry the weight of the world on my shoulders. SO THANK YOU, SARA!

The sessions within the group were interesting. Four different topics, lots of discussion, lots of ideas. The main thing was about taking the O out of DOC and working on communities offline. From making information easier to find to working directly with our doctors and CDEs to reach a broader audience. Unfortunately there wasn’t much time to put it all together, but I’m counting on Todd Siesky’s report so I can leech of it and share more with my readers.

I don’t know what else is there to say. I could continue writing and writing… But I’m sure I’ll be posting about more specific topics as they pop out of my head. What an enriching experience this was. But most important, what an amazing group of human beings!