Definition of Insanity: The Diabetes UnConference Las Vegas 2016

un-diabetes-conference-fullcolor-iconCall me insane. I’ll agree with you happily. 

One definition of insanity is doing the same thing over and over again, expecting a different result. (There are many who attributed that definition to Einstein or Twain, wrongly so, but it’s catchy and apropos, so who cares?)

The second Diabetes UnConference, held in Las Vegas from March 11 to March 13, 2016 proves that I am insane, because I wanted a different result.

The Diabetes Collective provides the framework, the facilitators, and many of the same topics. But what makes each conference different is the attendees and their inputs and insights. And not only was the conference different from the first held over a year ago, the outcome was different, too.

We had alumni return, volunteering their time to help ensure the “behind the scenes” items ran smoothly. They provided soothing continuity to me, a reminder that other people believe in this mission to provide safe, protective environments to talk about the psychosocial aspects of living with diabetes with others impacted by diabetes. My facilitators, many of them alumni themselves, gave their all to guide the conversations around the topics the attendees chose.

And the new attendees were… breathtaking. Some knew what to expect because they had friends who attended last year, but others came bravely, baring their souls. They have won my heart with their willingness to participate and add their voices to our community.

We also included a new group: PLUs, otherwise known as People who Love Us. Spouses, siblings, parents and significant others joined us this year, creating their own safe space to share. Do I know what they discussed? Nope. I’m not a PLU and because we honor the policy of not sharing what is said inside the sessions, all I can tell you is that some powerful bonds were created.

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2,521 years of diabetes was the final total in the room.

Some triumphant years, some scary years, but when I looked at all the fortitude and determination in those faces surrounding me, I felt like there was nothing that we couldn’t do together. We had Joslin Medalists (50+ years) and those who had been diagnosed less than a year ago. Some Type 2, some Type 1, some who were impacted by diabetes in their lives but living with functioning pancreases. We can move mountains or, if nothing else, support each other through peer support.

Tears. Laughter. Anger. Frustration. All to be expected. After all, this is my tribe. And I love each of them not because of the connection… I love them for who they are at the very core of their beings – and it has nothing to do with diabetes. And what was different? Everything, because my tribe chose the topics and then bared their souls. New year, new souls.

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I look forward to growing our tribe at the next Diabetes UnConference in Atlantic City in September and being completely insane again.

Happily insane.

 

 

 

 

Floating…

It’s been quiet around here at the blog, but I’m not being quiet in other places. Lots going on and I’m happy with the way it’s all going… it’s just going at full speed most of the day (and night).

Zero complaints, because truth? I love my life right now. As I texted with Heather Gabel earlier today, the only way I can describe it is: “happily terrified.”

Here’s some things I’m involved with or care about… in no particular order.

The Diabetes UnConference Las Vegas 2016

IMG_6147Crunch time. Registration is still open, but we’ve got a only a few spots left for attendees. To think that in less than 30 days, I’ll be in Las Vegas with some of my most favorite people in the world – and that I’ll get to meet more new favorite people, well… swoon.

These people are my tribe. They believe in peer support and the power it wields. I expect laughter and tears and new inside jokes as well as some old ones (#vegasdust, #claptwice). There’s a lot to do between now and then.

The Diabetes Pre-UnConference Sessions

The Diabetes Collective (the non-profit I founded in 2014) is hosting the Friday, March 11, 2016 Pre-UnConference sessions, which will be free and open to the public. The focus is diabetes, but not necessarily psychosocial – we’ve got Moira McCarthy Stanford sharing her ideas on how to put the fun in fundraising for diabetes research and a session on how not to lose your mind with diabetes. There’s much more; take a look.

If you’re in the area (or road trip!), join us. You can register here.

Diabetes Patient Advocacy Coalition

We held our first DPAC Insiders dialog this week and while I knew what we were planning to do in 2016 in terms of diabetes policy advocacy, talking about it makes me even more excited.

Bennet and I will be doing DPAC Diabetes Advocacy Boot Camps online and in person to assist passionate people in becoming effective advocates for diabetes policy. It’s certainly not the same as raising diabetes awareness or being an advocate for myself.

In fact, if you want to join us in person, you can register for one of two DPAC DABCs: at the Pre-UnConference session or at the CWD Friends for Life Falls Church. (You need to register!)

HealtheVoices 2016

043774-151123_HealtheVoices Application Announcement 1.25.16

This is the HealtheVoices Conference‘s second year and I’m honored to have been chosen to be part of the advisory team this year. For those who are online advocates of ANY health condition, this is an amazing and empowering experience. I learned so much about other health communities and a little about how I view myself as an advocate.

Here’s my recap of the 2015 conference. Worth a gander.

If you are on social media (have a blog, Twitter following, Instagram groupies) talking about a health condition, I encourage you to apply. While I can’t publicly talk about them yet, the keynote speakers and the sessions are going to rock socks off.

This year, it’ll be in the Windy City (a.k.a. Chicago).

The application deadline is February 22, 2016. Don’t wait until the last minute!

Please note: Janssen Global Services paid for my travel expenses for the conference in 2015. I am being compensated for my time and travel expenses in 2016. All thoughts and opinions expressed here are my own. 

Still Pump Breaking

I’m tinkering. Experimenting. The lows are significantly better because I reduced the Tresiba dosage. I’m having issues with the nano pen needle length (insulin is leaking out, despite keeping the needle in long enough for it to do its thing) and I’ve got my pharmacy special ordering syringes with half-unit dosing. I appreciate the DOC for commenting and sharing their thoughts, tips, and suggestions so that I can have an alternative to insulin pumping. You all rock.

And Everything Else

You gotta read this. Biohacking. Whoa.

But as far as I go..

  • There’s stuff percolating with PatientsLikeMe.
  • Still doing interesting things with the Diabetes Advisory Council.
  • I signed up to run my first 5K in May.
  • There’s upcoming trips to DC and Tweet-Ins planned soon.
  • I’m using this to get a lot of writing done (everywhere but on this blog, it seems) to cut down on the noise in my head.

 

And then there’s these goofballs, who keep me grounded…

even when I’m floating.

Selfies with goofballs. It's like dancing with wolves but without dancing. Or wolves. I love these two.
Selfies with goofballs. It’s like dancing with wolves but without dancing. Or wolves. I love these two.

 

Here, There, and Everywhere: The Impact of The Diabetes UnConference

10450528_10153177751732328_8584133040017261821_n-2My 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.

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.

un-diabetes-conference-fullcolor-iconWe’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.

What's Happening?

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.

Whatshappening

 

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.

10347069_10152860260092328_1800580454361835893_nAnd 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:

  1. About evidence-based and emerging mobile technologies that can help improve glycemic control;
  2. How persons with diabetes and their caregivers can use mobile and emerging technologies to improve their health; and
  3. 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?

Back to dLife… and An Update for The Diabetes UnConference

dLifeLogo 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.

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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!