My diabetes doesn’t take a time out. There’s no napping, no long weekend out of the office, no sabbatical. I drag this sucker everywhere and even if it doesn’t play nicely with others, it gets to come along for the ride.
And I’ve been doing a lot of riding (as well as writing) these days. Word is getting out about The Diabetes UnConference which means I’ve been sharing my experience (and getting feedback from other people) here, there, and everywhere.
I’m sharing these here, because it gives you the opportunity to get acquainted with new blogs, new voices, and great communities! Attendees of The Diabetes UnConference have been talking about their own experiences here, there, and everywhere.
- Kate Cornell of Sweet Success and how important the power of peer-to-peer support is to her.
- George Simmons of Ninjabetic fame shares his words of how emotional being there was to him.
- Stephen Shaul of Happy Medium discusses his first thoughts after attending The Diabetes UnConference.
- Arlene Skinner of CutTheBSGirl wrote an open letter to her newest friends after she came home.
- Joe Gaiser came from Germany to be at the inaugural event and shared his thoughts with Scott’s Diabetes.
- Kelly Kunik gave her insights of her experience at The Diabetes UnConference.
- Scott Johnson and Kerri Sparling share their thoughts with diaTribe with this wonderful article about the impact of The Diabetes UnConference.
- Michael Hoskins, the thoughtful voice at Healthline’s DiabetesMine had lots to say about his impression of The Diabetes UnConference.
- And Mike also outlines how he plans to nurture the connections he made in Las Vegas on his personal blog, The Diabetic’s Corner Booth.
- Kerri Sparling of Six Until Me shares how she felt about the social media blackout during The Diabetes UnConference.
- Karen Graffeo of Bitter~Sweet talks about the experts she met at the conference.
- Jennifer Christensen of Sweet Zoo explores how online connections allowed her to create face-to-face experiences of a lifetime at The Diabetes UnConference.
And Like I said… I’ve been talking about The Diabetes UnConference a lot these days with others:
Shawn Shepheard is the creator of Sugar Free Shawn and one of the most positive people I’ve ever had the pleasure to meet. He makes me show my goofy face and I find myself using jazz hands when I talk with him. This is a good thing. Check out his website here.
I also chatted with Daniele Hargenrader of Diabetes Dominator - not just about The Diabetes UnConference, but life with diabetes in general. (Do you know her? You should! What a dynamic force!)
One of my goals from The Diabetes UnConference of continuing crucial conversations outside of The Diabetes UnConference is blossoming… Diabetic Connect has graciously extended a hand in making these dialogs part of the larger diabetes community:
Heather Gabel delves into the words we use when talking about diabetes - a topic that we touched on at The Diabetes UnConference.
Here is my first pass for a call to action that came out a discussion about diabetes discrimination and stigma.
We’ve begun something that I believe is unstoppable at The Diabetes UnConference - and I can’t wait to propel it even further as a community through some of the initiatives we discussed there, as well as inspiring new conversations next year.
Early Bird Registration for next year’s Diabetes UnConference (March 10 - 13, 2016 in Las Vegas) opens on May 1st. We are not just here in our words above… we will be there… because we understand that we are everywhere. Come get involved.
This ain’t no Rog and Rerun post, but here’s their picture just in case you wanted to take a moment and remember life in the 70s.
Now that: “Hey, hey, hey!” is in your head, let’s move on quickly.
If you haven’t heard ::insert tongue firmly in cheek::, it’s Diabetes Awareness Month. Last year, I tried to give some basic information that you could share with others (including the sexy woman analogy to insulin, which is always worth a second read and a hearty guffaw), but this year… I’ve been busy doing some other things that have left me very little time to write.
DTS Payers Meeting (Which Was Poorly Named)
Last week, I was honored to sit on the Patient Perspective panel at the Diabetes Technology Society’s Payers Meeting. It was supposed to be a meeting where payers and patients and people (alliteration!) with stakes in the game of diabetes were to engage in a dialog. While the meeting was worthwhile and full of dialog, only ONE payer (and a second person who plays a fringe role in the payer world) actually spoke. (There was a CMS representative in the room, but she refused to identify herself as a payer, but we all knew who she was. She may have been on strict orders to not speak or engage, which was probably a wise idea, seeing as her performance last year in a DTS meeting gave CMS a black eye in the community.)
If you’re interested in what was discussed, Amy Tenderich over at DiabetesMine captured the overall meeting (and the feelings around it) so concisely that I’m telling you to click on this link and go read the recap of the DTS Payers Meeting.
The Diabetes UnConference
Then, having forgotten my past life as a road warrior for my previous career, I flew home and less than 12 hours later, was back at the airport headed to Vegas for The Diabetes UnConference site visit. I needed to be face-to-face with the chefs as we discussed the foods being served to our celiac attendees. For me, it was crucial to express the “this is not a fad diet for these individuals, so treat it like a nut allergy” feeling. The chefs completely understood and gave me suggestions that will ensure not only will the menus for our celiac diagnosed attendees are gluten free, but delicious as well.
And I got to tour The Flamingo’s campus. I’ve been to Vegas hotels where the rooms and the conference space are almost a mile walk (A convention in the MGM Mirage has you wishing for a foot massage before you even get to the exhibit floor). Not this place. They actually have a section of rooms that are right near the conference space and even the main section of rooms make it easy to get to where we’ll be. There’s a wide variety of food options (both in price and type) there - and even better? We’re right next to The Linq, which has more food options, a 24 hour Starbucks, and a Cupcake ATM. Yes. You read that right.
I’ll be focusing on The Diabetes UnConference logistics for the next several weeks, so expect to hear a
little lot more about the amazing events that will happen because of this event. I’ve got so much good news that my little brain is bursting.
Thursday, November 13th
World Diabetes Day is November 14th, so everyone is trying to pack in something before WDD. ::Sigh:: It’s not like we don’t have diabetes the rest of the year, but OK…
FDA Public Workshop - Regulatory Science Considerations for Software Used in Diabetes Management
This is happening all day, so if you need me, I’ll be sitting in front of my computer, watching the live stream. (Unfortunately, online registration for this webcast is closed.) If you’re curious as to what the heck this is all about, amazing advocate Stephen Shaul has what I believe is the the most eloquently crafted post ever about it. This impacts all of us, and it’s so crucial to have a patient voice in the mix (heck, a whole choir of patient voices). I’m interested in hearing Howard Look of Tidepool speak, because I so believe in what they’re doing.
Emerging Technologies to Improve Glycemic Control among Persons with Diabetes: A Healthy People 2020 Spotlight on Health Webinar
HealthyPeople.gov is ALSO holding an interesting webinar on Thursday, November 13th and YOU CAN REGISTER HERE TO ATTEND ONLINE. This will be from 12 - 1:30pm Eastern, so my lunch will be eaten while watching this. According to the info, webinar attendees will learn:
- About evidence-based and emerging mobile technologies that can help improve glycemic control;
- How persons with diabetes and their caregivers can use mobile and emerging technologies to improve their health; and
- How mobile and emerging technologies fit into larger health information technology initiatives.
Diabetes: Slowing the Epidemic
My friend, Scott Johnson, let me know about this live stream event. It will be from 8:30am to 12:00pm Eastern, so I’m missing it as I’m on the FDA Public Workshop stream, but you can watch it through the live stream on your computer. This Washington Post forum, featuring many of the nation’s top experts, will look at how to prevent, diagnose and treat the chronic disease that can cause so many other health problems, including kidney, nerve and eye damage. They’ll have a mix of speakers, including some patients and Dr. Robert Ratner from the ADA (I like that man a lot!), so I encourage you to attend if you can.
And Coming Up…
World Diabetes Day is November 14th. You have options… and I’ll share those on November 14th, but I’m sure you probably already know most of them. (But even so…)
That’s what’s happening in my world. What about you?
A long, long time ago in a galaxy far, far away… I wrote a lifestyle column on dLife.com called Been There, Done That. I shared my ideas about living life with diabetes. As my career took different turns (and the miscarriages count piled up), it became more difficult to write. In fact, for a few years, I didn’t write anything that wasn’t related to my career.
My, how times have changed! How my life has changed!
I’m back to dLife as a columnist and if you’d like to see what I’ve written in the past as well as my latest articles, you can pop on over there and get your fill. They’ve got a lot of great resources (and some other columnists that you probably know already, like Kerri and Scott and Bennet and Will Dubois…)
I’m talking this month about making my decision about insulin pump therapy… The article is Eeny, Meeny, Miney…Pump. If you like it, let me know. If you don’t… let me know.
And in The Diabetes UnConference news…
Holy wow, Batman. Remember how I said I was worried that no one was going to come?
I am so thrilled to find out that I’m wrong. (And as someone who hates to say “I’m wrong”… this is strange for me.)
People are registering. Lots of people. Registration has already surpassed my first goal and well on the way to my next goal. A sell out conference? It’s happening.
Registration has been open for a week and all I can say is that if you haven’t registered yet, please do so soon… there is a maximum number of attendees that the rooms can hold (and a maximum number of the rooms in our room block for The Diabetes UnConference that is rapidly filling up…).
So, if you haven’t registered yet, please… do that as soon as you can. I want to learn from you.
Lots of other fun things to talk about, but wanted to give you updates on dLife.com and The Diabetes UnConference. More to come soon!
Wanna know what gets me all fired up? I’ll get to that. First, I want to tell you how I got here to get fired up.
Thank this guy.
Without John, I would have never found the Diabetes Online Community. It was his “What are you going to do about that?” to my lament over the lack of podcasts about diabetes way back when that began me on this journey. Before him, I was a person with Type 1 diabetes who didn’t know anyone else living day-to-day like me.
He and I created diabeticfeed, the first podcast about diabetes. It was a mélange of research news, interviews, and resources and a way to connect with people who have become like family to me.
One of my first interviews was with this woman who was Type 1 and had just started a blog. We clicked and connected over a love of all things snarky and the bond created by diabetes. You might know her. Kerri Sparling.
Thank this woman. Kerri began working at dLife, and through her, I penned a column about living and celebrating who we are. Kerri and I might both have diabetes, but I have a feeling that even without this disease, we’d still be making inappropriate comments to each other.
Over time, the little group of ragtag renegades who talk about diabetes on the Internet became closer. Friends. Some of us became like family. Thank these people. Kerri, Scott K. Johnson, and George Simmons have been my rocks and my confidantes and I love them.
As the small group grew larger, it became known as the Diabetes Online Community, and it encompasses thousands of people all across the world. I got busy with things outside of my diabetes and drifted off into obscurity. I kept in touch with many people I had met, but did nothing “formal”. And it was that way for a while.
But the Diabetes Online Community is like the mafia. Blood in, blood out, blood on the test strip…
“Just when I thought I was out, they pull me back in…”
This blog began over a year ago in response to something that irked me, and it was appropriately titled: “In Retrospect, I Should Thank Him…” So thank that guy.
And then… you should thank this guy. Heartily thank him.
Bennet Dunlap and I forged a friendship at the first Roche Blogger Summit in 2009 and he’s my Don Corleone. We both think alike when it comes to sharing what we find not cool in the world and speaking freely about it. (See the sign above? Yeah….) And because of him, I’ve realized that I have the ability to make a difference… and a little trouble.
All of these people helped me find a voice, connect with others, and share my ideas about living well with diabetes.
- I advocate for all people with diabetes (discriminating between Type 1 and Type 2 is a waste of time and effort) and blood glucose test strip accuracy.
- I advocate for data access so that I can better manage my diabetes.
- I advocate for access to the medications and tools for everyone with diabetes, regardless of location or financial situations.
I advocate for myself, my family, my friends, and for every single person with diabetes and their friends and family.
I know that I can’t do it alone and I’m thankful for those who have built an amazing community and continue to make it stronger.
I’m fired up for my community. So, thank my community.
This is how I thank my community. Join us.
This is my post for Monday’s Diabetes Blog Week. We were asked this:
Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you.
I’ve been keeping a secret from you.
It’s a good secret, but a lot of work needed to happen before I could share this…
To admit that I’m scared that this will be a colossal fail and that no one will want to come would be true.
I hope that I’m wrong.
I hope that this will be everything that our community needs and wants and that this will be the beginning of something amazing.
This has been a long time coming.
The original idea was simply a wish that I frequently uttered quietly (often to myself) at the end of diabetes conferences or meetings:
“I wish that we could just sit and talk about living with diabetes and how we feel about living with it. Share with each other. Learn from each other.”
I articulated this wish at the Medtronic Diabetes Advocacy Summit in January during a brainstorming session about what each of us wanted to accomplish for the diabetes community.
“No tracks to choose. No keynote sessions. No separation of people by category or type. Real discussions in a safe place about the psychosocial aspects of our lives with diabetes with others who get it. We decide what we want to talk about - and then we talk about it.”
There were nods in that room (and one or two exclamations of “Hell, yes!”). I left that meeting with a head full of ideas about this… but I couldn’t do it by myself.
That’s what a community does. It helps, supports, and celebrates. With some gentle prodding from some advocates and the amazing emotional backing of my husband, I quietly created The Diabetes Collective, Inc., a Florida non-profit corporation (currently waiting for the IRS to bestow that 501 (c)(3) designation) and signed a contract with Caesar’s.
It’s on. It’s begun.
Please read below - and share the excitement with me for The Diabetes UnConference.
If you are an adult with diabetes, come join me (and others just like me and you) in… Las Vegas from March 12 to 15, 2015.
I would love to meet you and learn from you and others about living well with diabetes.
Here’s the official announcement.
The Diabetes Collective, Inc. is pleased to announce The Diabetes UnConference, the first peer-to-peer support conference for all adults with diabetes.
The Diabetes UnConference will be held at the Flamingo Las Vegas from March 12 - 15, 2015.
The first of its kind, The Diabetes UnConference follows the “unconference” concept of peer-to-peer idea exchange made popular by the tech community. The actual agenda is set the first morning of the conference, drawing from the needs and desires of the attendees and discussions will focus on the psychosocial aspects of living with diabetes.
Manny Hernadez, co-founder of TuDiabetes.org and winner of the Community Spirit Award from the American Diabetes Association, states: “Life with diabetes is challenging enough to go about it on your own. Peer support is essential to thrive for people with diabetes. It is also critical to help us build the kind of movement we need to have around this condition that affects more than 26 million people in the US and 400 million people worldwide.”
Founded by Christel Marchand Aprigliano, The Diabetes UnConference is facilitated by volunteers well known to the diabetes community: Bennet Dunlap, Heather Gabel, Manny Hernandez, Scott K. Johnson, George Simmons, and Kerri Sparling. These diabetes community leaders are familiar with the topics that will be covered; each live with diabetes.
Topics may include dealing with depression and diabetes, countering burnout, diabetes “life hacks”, dating, parenting with diabetes, revealing your diabetes to others, and much more.
Peer to peer support has been shown to be highly beneficial to those living with diabetes. The report, “Peer Support in Health – Evidence to Action,” summarizing findings from the first National Peer Support Collaborative Learning Network shared that: “Among 20 studies of diabetes management, 19 showed statistically significant evidence of benefits of peer support.”
For more information and to register, visit www.diabetesunconference.com.