En un esfuerzo por extender la misión de DSMA con toda la comunidad, hemos decidido ofrecer una versión en Español de nuestro programa de radio DSMA Live para llegar a la comunidad Hispana, no sólo en Estados Unidos, sino alrededor del mundo. Acompáñenos los martes a las 8:00 p.m. CST. Estaré presentando con Cristina Rodríguez de ChicagoNOW. Nuestro primer programa será mañana, 24 de julio. ¡Los esperamos!
I want to thank Amy, Mike and Allison at Diabetes Mine for giving me a chance to be a guest post writer today. I’m proud to be a diabetes advocate, but mostly grateful for having found passion and purpose helping others to cope with what life brings.
Last night I had the opportunity to participate in a virtual summit with some members of the DOC. When I received the invitation from Scott Johnson to join him and some people involved in Pharma and social media, at first I wasn’t sure I would fit in the group; there was to be a discussion about Diabetic Neuropathy and my reaction was “Well, I don’t have that… What kind of input could I possibly give?” —But I said yes, anyway; the conversation was eye-opening and it left me with a lot of bittersweet feelings.
I was rather grateful to be able to say that I’m free of complications, and then it hit me. Just because I’m complication-free now, it doesn’t mean the future doesn’t hold any challenges. And how well informed am I about these complications? I wouldn’t put myself in the completely ignorant category, but I’m definitely very close to it. What I know is very vague, very superficial, and usually tainted by the sensationalism of the media. Nobody wants to learn about diabetes and what it can do to your body when the first thing you see is a horrendous photo of a sick foot that most probably needs to be amputated. That’s fear-education and I avoid it like the plague. The sad part is that at some point I end up avoiding it ALL.
How many of us can say that, unless we get diagnosed with something, we actively go and look for information on a certain condition, especially a complication from diabetes? I certainly can’t! I go for my eye exam every year and I’m all happy when the doctor tells me my retina is the most beautiful thing he’s ever seen, and I leave it at that. I don’t worry about it for another year because I’m almost convinced that I’m doing all the right things to control my diabetes. After all, no complications means good control. Ummm… No, not really. We all have different bodies and this is what we were talking about last night. Some people can spend years without paying attention to their blood sugars and develop no complications. Some others can pay attention to every single thing they do and still get them.
And that is why we all should be open to:
1) learn about complications
2) talk about complications
3) approach it from an educational point of view
4) discuss it like patients, not like pharma, doctors or the media
How do complications of diabetes make us feel? What would happen if we got one? Are we prepared? Do we know how to recognize symptoms? Let’s put neuropathy as an example. I was one of those people who thought neuropathy = pain. I was wrong. It turns out I could have diabetic neuropathy as of this very moment and be completely unaware of it. Why? Because the symptoms are vague and can be related to many other conditions. Orthostatic hypotension? I have that… and it’s a symptom! Yes, quite shocking. It may not be neuropathy, but at least now I know I should pay more attention to the things my body tells me.
So, the same way we advocate for finding a cure and talk about our rights, we should be working on discussing complications openly to get rid of the stigma created by the media and other misconceptions. Knowledge is power. Shared knowledge is power.
Life hasn’t been all that great lately because it happens, but I can say it’s been mostly awesome especially on the diabetes advocacy side. Last weekend I had the pleasure to see some of my d-buddies when I drove to Indy with Miss @CelloBard; it was a very fun road trip where we worshiped the Great Green Circle (AKA Starbucks), laughed to tears as usual and used many swear words against drivers on the road. We had Simon visiting all the way from Australia, and I’m still waiting for him to write the story about how he got from NYC to Indy because I’m sure a screenwriter will want to make a pretty penny out of it. Mike (@mydiabeticheart) put the meetup down in words, so I’ll spare you my version because it’s pretty much the same, and he writes way better anyway.
I’m also looking forward to the end of the month because I’ll be back in Indy for a social media summit and it makes me really happy to see we’re making a difference with our advocacy efforts and our voices are being heard not only by the medical community, but also by pharma companies. This is not about us as social media users or individuals, but about a whole world that believes diabetes can be conquered. I’m extremely lucky to be able to participate in the summit for the 3rd time and I can’t wait to see familiar faces and get to meet people I already feel close to. Being part of the diabetes online community is one of the greatest gifts life has ever given me, especially during times when you need support outside the d-world because life just hits you with everything it’s got.
But what I’m absolutely honored and thrilled about is that I’ve been asked to be part of the DSMA Advisory Board and since the information has been officially released, I want to thank Cherise for putting her trust in me to be a co-host in the upcoming DSMA Live en Español radio show. I’ve been toying with the idea of diabetes podcast in Spanish for a while, and now I’ve been given the chance to reach out and do what DSMA does best: educate and support. I’m excited to be working with Kiki and I know we’re going to do great things for the Hispanic community that is touched by diabetes. We’re finalizing details about the first show and hopefully we’ll have it going on before the end of the month. We have wonderful diabetes advocates willing to help and who are so passionate about the diabetes awareness cause, I can only see awesome things happening. Hellos to Marcelo and Mila and a big gracias for everything they do!