#DBlog Week: Thank This…

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.

John Wedding Day

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.

Kerri and Christel

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.

Extended Family. © Kerri Sparling Kerri, Christel, Scott, and George.
Extended Family.
© Kerri Sparling
Kerri, Christel, Scott, and George.

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 and the Sign

 

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. 

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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.


 

The Diabetes UnConference – March 12 to 15, 2015

un-diabetes-conference-fullcolor-iconI’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.

Come on.

Vegas, baby.

Here’s the official announcement. 


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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.

2nd Annual Diabetes Hope Conference

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Whatcha doing on Tuesday, May 20th?

If you answered: “Joining you at the virtual 2nd annual Diabetes Hope Conference,” I’d be thrilled. (Of course, if you had said: “Giving you millions of dollars,” I would have also been thrilled. I’m easy to please.)

The Diabetes Hope Conference began last year as a way for the diabetes community to talk about the stuff we like to keep hidden in the closet: fears about complications and how those complications aren’t brought up because of those fears. Individuals with diabetes shouldn’t have to suffer in silence or think that no one else is going through complications, burnout, or frustration with this disease. The Diabetes Hope Conference had over 250 participants last year, so the founders of this conference is on to something… and that’s where we come in.

I’m personally inviting you to join me on Tuesday, May 20th from 12 – 3pm EDT for three panels of great individuals (and one modest individual, so she won’t say she’s great…that would be me…) to talk about the questions you want answered, how to talk with your medical team, and how to share your story with diabetes. 

What’s on tap?

From 12 – 1pm EDT, it’s The Doctor Will See You Now, a Q & A session with Dr. John Anderson, Immediate Past President, Medicine & Science of the American Diabetes Association. Karen Graffeo and this chick, Christel Marchand Aprigliano (ohwaithat’sme!) will be moderating, fielding questions, and perhaps even asking our own questions (I’ve promised to be wicked nice.) to Dr. Anderson. 

From 1 – 2pm EDT, The Value of Blogging in Chronic Illness with Mike Lawson and Kerri Sparling will talk about blogging and mental health with Pamela Katz Ressler, co-author of the study, Communicating the Experience of Chronic Pain and Illness through Blogging. 

From 2 – 3pm EDT, Dr. Jen Nash and George Simmons will converse about doctor/patient relationships and how we can keep it healthy for both in Who’s in Charge? Who Says What? And Why? This is not a reenactment of Abbot and Costello’s Who’s on First skit, but with George, I’m sure there will be plenty of laughs.

What do you need to do?

Two things:

1) Register for the Diabetes Hope Conference. It’s free, it’s virtual (you can watch it in your jammies and bunny slippers or the outfit of your choice – we don’t judge!), and we want you there.

2) Ask a question in advance for Dr. John Anderson, so that Karen and I don’t end up talking about cats and toddlers and our latest hairstyles. Obviously, it should be diabetes related, but other than that stipulation, it’s fair game! Got a burning questions about the burning in your feet? Ask it. Want to understand the reasons behind why you feel horrible after a low blood sugar? Ask it.

O.K., three things: 

3) Join us on May 20th. You can also ask questions via Twitter using the hashtag: #dhopeconf if you’re feeling twittery.

As it says on the Diabetes Hope Conference website:

While there is no known cure for diabetes, that doesn’t mean the diagnosis is hopeless.

Come learn just how much hope there is. (If nothing else, you can watch me make funny faces live on a computer.)

FYI: None of the panelists receive any compensation for participating. Nada. And that’s cool by me. Cool by you? Cool.