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.
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.
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
Crunch 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.
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.
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.
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).
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.
The Diabetes UnConference deadline for Las Vegas early bird registration is January 15, 2016. Why should you go this year? I have my top five reasons. (Alumni, chime in if you’d like…)
We’ve added Friday Pre-UnConference sessions with an amazing line-up: Dr. Stephen Ponder and Sugar Surfing, Glu’s T1D and Pregnancy, D’ABC (Diabetes Advocacy Boot Camp), and more…. These are FREE and open to the public, but seating is limited. (The Diabetes UnConference attendees have VIP seating. Register to attend The Diabetes UnConference and you are guaranteed a seat in the sessions you choose.)
New separate safe, private sessions for Those Who Love Us: our spouses, significant others, family members who need the same type of support PWDs get at The Diabetes UnConference. We know that there are topics that they don’t want/like to discuss with us: fears, caregiver burnout, dealing with us when we’re not “in range” – and so we’ve added sessions just for them. (And we’ve added to our amazing team of facilitators for these sessions: Moira McCarthy Stanford, Mike Norton, and Dr. Jill Weissberg-Benchell.)
Thursday casual fun is happening. Many of our alumni said they wanted to get together and hang out as a group. So, we’ve set up some fun activities for everyone… all unofficial and not part of the UnConference, but a great way to meet new friends and see old friends. (Go Kart racing is an option. Just sayin’.)
You help to strengthen our community by participating. Many individuals hadn’t met another person with diabetes or weren’t involved with the DOC. Some began blogs, some participated in DOC activities, and some built friendships that make daily diabetes management… manageable. Every time someone registers that I don’t know makes me grin… because I know that I’m going to make a new friend. It’s like Christmas in March. (Except no snow.) I can’t speak for other alumni, but because of the friendships I’ve made at The Diabetes UnConference, my diabetes management has changed. For the better.
It’s the only adults-only multi-day psychosocial conference for all adults impacted by any type of diabetes. (Because there are great conferences for families with Type 1 and day conferences for Type 2, but nothing in the world like this.) A funny thing happened last year – by the end, I couldn’t have told you who had Type 1 or Type 2 based on the discussions happening around the tables. Why? Because we all want the same thing: to happily live as long as possible, with as few complications as possible. How we get there may include different treatment plans, but we all have the same issues: complications, burnout, depression, stigma, motivation, disclosure, getting older, dating/marriage, intimacy, tips and tricks for daily living… and we talk about these issues as adults impacted by diabetes – not adults on an insulin pump or oral medications or multiple daily injections or exercise only treatment… simply adults impacted by diabetes without judgement. It’s what binds us together.
That, and that people impacted by diabetes are fun. Come to Vegas with us and have fun.
I would like to apologize in advance by what might look by an unnecessary overabundance of exclamation points. It’s the only way I could really and truly express my enthusiasm. In fact, I took some out when I edited.
There are both travel (U.S. only for travel expenses) and room only scholarships.
Deadline to enter is September 30, 2015 and all it takes is a few minutes to share your thoughts in a form. (I don’t pick the recipients; a scholarship committee does after the identifying information is removed, so any attempts to bribe me with delectable gifts will be eaten without remorse. )
These scholarships are made available through The Diabetes Collective, Inc., the 501(c)(3) non-profit that runs The Diabetes UnConference and the gracious and generous private donors who want people impacted by diabetes to be able to get face-to-face peer support.
If you’re interested in donating to The Diabetes Collective for the scholarship fund, please click here:
We will be offering scholarships for The Diabetes UnConference in Atlantic City, too. (September 10 – 13, 2016.) The announcement will come out in the spring of 2016. Hold on to your hats, which I am sure are fashionable and keep the sun off your gorgeous face.
REGISTRATION FOR PEOPLE WHO LOVE US!
2016 is going to be even more amazing, as we are adding a separate session track for people who love us. Sometimes called T3s or Type Awesomes, these are the people who love a person with diabetes and needs the same type of peer support people with diabetes get at The Diabetes UnConference.
If you are a spouse, a significant other, a parent, an adult sibling, or an adult friend who loves a person with diabetes, then register. While we will have some sessions that will be in the same room as those you love (PWD), you’ll have safe, private sessions to talk about the things you can’t discuss with a PWD: your fears, your frustrations, your ways of coping – learning from others and building a face-to-face connection for your own peer support.
We are adding Friday pre-conference (or pre-UnConference?) sessions! These sessions will be included at no charge for registered attendees of The Diabetes UnConference and, if space is available, for non-attendees. More details to follow, but if you’re planning on heading to Las Vegas, you might want to see if you can stretch out your trip.
Multiple sessions will be available from 11:30am all the way to 4:00pm on Friday, March 10, 2016. No food or beverages will be served during these sessions, but there are a lot of great dining options and a convenience store in the hotel. We’ll cover a wide variety of topics, but you will need to sign up for these sessions in advance, so stay tuned. (A great way to stay on top of it all is to sign up for The Diabetes UnConference newsletter – we don’t sell or share your email address when you sign up, so your secret identity is safe with us.)
LINK TO RESERVE YOUR FLAMINGO LAS VEGAS HOTEL ROOM IS ALIVE!
Reserve your room now at the special rate The Flamingo Las Vegas has for The Diabetes UnConference 2016 attendees.
We listened to the feedback from last year’s alumni and one of the things they suggested this year were casual opportunities to “do stuff together” before the official conference begins. It was just one of many great ideas that we’ll be incorporating into the 2016 conferences in Las Vegas and Atlantic City. (Our community is creative, insightful, and fun!)
Options will become available in the late fall to register for these “do stuff together” excursions , including a “let’s do outdoorsy stuff together,” “let’s do fast driving stuff together,” “let’s do just as exciting but more cultural stuff together,”, and some “let’s do a meal together.” These will be available on Thursday and Friday morning. These are not included in the registration; you’ll register separately, and are only available for registered attendees.
ATLANTIC CITY REGISTRATION IS ALSO OPEN!
Resorts Casino in Las Vegas will be the hosting hotel for The Diabetes UnConference 2016 – Atlantic City from September 9 – 11, 2016. Yep. It’s a long ways off, but we’re already in planning mode. We’ll be one of the first conferences in their multimillion dollar expansion of their conference facilities!
Take a look at what’s on tap. Yep. It’s a long way off. Nice to have something to look forward to… And if you are planning on attending both Las Vegas and Atlantic City, let me know and you’ll get a discount code for the Atlantic City registration that will make you do a happy dance on the beach at Resorts Casino (because it’s right on the beach!)
Trying something new is scary. Trying to put on a conference where the agenda isn’t truly defined until the participants are in the room together – and wondering if any participants will show up – is terrifying. I had my moments. More than my share of moments.
And you know what? I can’t wait for this to happen again.
But what I didn’t tell you then was how I sobbed in my hotel room after the conference ended for almost an hour. Not from sadness, but from sheer elation. Happy sobs, because I had met people from all walks of life who wanted to learn from each other and build a net of support. These people astounded me with their frankness, their honesty, their willingness to open up they own Pandora’s Box, and their desire to help. I am a better person, not just a better person with diabetes, because of the people I met.
We asked attendees to complete a post-conference survey. Here are some interesting things we learned:
62% of the attendees said that they were planning or already made a change in the way they manage their diabetes based on what they learned at The Diabetes UnConference.
Some of those changes were with the way they interacted with their medical care team, or asking for help from others, or staying motivated through peer support. Others planned on talking with their medical team about super bolusing or untethering or trying a new medical device or medication because of the experiences their peers had.
The sponsors were amazing. We couldn’t have done this without the support of Insulet, Dexcom, Medtronic, JDRF, Abbott, Tandem, Roche, Asante, and J&J/Animas. One of the attendees summed up pretty much how everyone felt:
“I know they were there to promote their brands, but I also appreciate the fact that they supported this event so enthusiastically.”
When asked what they enjoyed most about The Diabetes UnConference, the answers made my heart swell:
“The feeling of relief, of understanding, of connection. I also learned a ton of new ideas on how to better manage my diabetes or change the way I think about it. I also loved meeting others who have gone through experiences I am about to go through, so I can hear what they learned from it.”
“Sitting in a room filled with people I could relate to, and didn’t have to explain or justify what I was doing/eating/etc. Also, as much as I love my family, I really enjoyed having NO responsibilities for the weekend except for myself. It took some of the ‘weight’ off of my brain having to only worry about myself. And even then, I wasn’t too worried because I knew if something happened, I was surrounded by people who knew what to do to help me.”
“The sense of safe community we all created. We all really got to shed some diabetes weight. I felt lighter after, like I could go back out and face the world with diabetes again.”
“I have told everyone I know that this was THE best conference that I have ever attended in my entire life. Lots of experiences were shared. I got a perspective that I have not experienced before. People were friendly and I took away ideas and stories that people told that I will hold with me forever. Truly an awesome experience.”
Of course, it wasn’t all sunshine and glitter. We had some bumps… Not enough time to deeply get into topics, not enough breaks for decompression during the event, and the need for more non-session social interaction. Plans are already underway to made the event even better. We also knew before we left that two things needed to be added for 2016:
We are adding a “People Who Love Us” registration for spouses, significant others, family members, and close friends of people with diabetes who need the same type of psychosocial support that we received this year. They need that same safe space, non-judgement zone where they can talk about how we can be total jerks sometimes and no one will tell them that’s wrong. They will have their own sessions, just like the PWDs, but we’ll also have some sessions together to talk about ways to help each other.
We are adding one on the East Coast. Attendees want to come from all over, but sometimes the cost for airfare is ridiculous. The Diabetes UnConference – East Coast will happen in the fall of 2016 and allow participants to choose either (or both). Contracts are being hammered out as I type.