Tag Archives: Diabetes UnConference

The Diabetes UnConference Las Vegas: Mission Accomplished.

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Welcomed.

Valued.

Respected.

The Diabetes UnConference Las Vegas 2017 is complete. Sessions ended, rooms and signs cleaned up, final dinners and goodbyes over.

My number one goal as a facilitator has been to make each attendee feel welcomed, valued, and respected throughout the weekend. It’s a job I take very seriously.

I want attendees to feel Welcomed as a member of the tribe forever. They will never be alone.

I want them to feel Valued as a human being with an important voice in a growing and increasingly diverse community. Valued as an expert in their diabetes, or valued for their walk with someone they love who lives with diabetes.

I want them to feel Respected in a safe, encouraging, empowering environment where their voice is just as important and worthy of attention as everyone else’s in the room.

Our group in Las Vegas was able to bond over the important concerns that are a part of everyone’s life with diabetes. And also over things that aren’t necessarily basals and boluses, but issues that still affect our blood glucose and our continued dedication to our health just as much.

The truth is, I learned just as much as the attendees, because, as always, it was the attendees who drove the agenda. It was the attendees who shared their lives and bared their souls. It was the attendees who created that wonderful judgement-free space that made people comfortable enough to speak their conscience and listen with an open heart.

Christel is fond of saying that the people in the room at the Diabetes UnConference are the people who should be in the room. I came away with a new appreciation for that notion because our mix of alumni and newbies made this particular gathering noteworthy and unique. You know, like they always do.

There will be a lot of different takeaways after this UnConference. Some people will make changes to their daily routine, or text a new friend they met this weekend now and then to make sure they’re okay. Some will embark on new advocacy measures. Some will try a new device, or drop an existing one. Some will work to help those who don’t have access to the same privileges they enjoy. Some will just cut themselves a little more slack now and then. Some will begin an entirely new level of conversation with their loved one. I am so encouraged to think about their ideas and the successes they will create.

I come to each UnConference eager to help people to feel welcomed, valued, and respected. I leave each UnConference feeling appreciated, honored, and humbled. There is a lot of giving and getting, but I always seem to be one of the lucky ones who receives more than I could ever repay.

The next Diabetes UnConference will be in Alexandria, Virginia October 13, 14, and 15. If you need a place to talk about your diabetes, or your relationship to your loved one’s diabetes, in a unique setting that makes the voice of the participant the center of attention, I encourage you to go to DiabetesUnConference.com and clear your schedule in the middle of October. Find out what I’ve found out: diabetes may not get easier, but life definitely gets better when you #FindYourTribe.

Diabetes By The Numbers (Part 1): Christel Marchand Aprigliano talks about the Diabetes UnConference.

I can’t tell you how excited I am to finally share a conversation with Christel Marchand Aprigliano. In three parts.

Christel, as I mention in the introduction, is a force in the diabetes world. Until there isn’t a diabetes world any longer, we can only hope to have advocates like her who get in the trenches and fight for the things that are important to those of us living with this disease.

In part two of our conversation, you’ll hear about one of the hot topics of the day, insulin pricing, where roles are slightly reversed, and I’m the feisty one. Part three will cover Diabetes Patient Advocacy Coalition, and how using the easy button can help you get your diabetes advocacy started, and up your diabetes advocacy, all in less than two minutes. Those episodes are still to come, and you’re not going to want to miss them.

Today, we talk about the unique gathering known as the Diabetes UnConference. Christel covers all the things that make the UnConference life-affirming. We discuss the No Social Media policy that exists during the sessions on Saturday and Sunday, and why that is so important to attendees. And Christel admits that her intentions in creating the UnConference were not entirely altruistic (her words, not mine). She needs it just as much as the rest of us.

If you’re in a place in your walk with diabetes where you could use some space to vent, or learn, share, and meet new friends, whether diabetes has been in your life for days, weeks, months, or years, this is the podcast episode you’ve been waiting to hear.

Full disclosure: I will be a facilitator at the Diabetes UnConference in both locations this year. I am not compensated in any way for this interview, except in the good vibes that come with going one on one with a person whom you admire and trust and learn from at every turn.

DBTN

Reference Material – Click below for more information on this topic

Christel Marchand Aprigliano writes about life with diabetes at:
theperfectd.com

Find out everything about the Diabetes UnConference (and read experiences from attendees too), by going to:
DiabetesUnConference.com

The Diabetes UnConference will be held February 10, 11, and 12 at the Westin Las Vegas. Register by January 24 by going to:
DiabetesUnConference.com/register

The Diabetes UnConference experience.

Over the past two years, many people have questioned me about the Diabetes UnConference. What happens? How do you decide what to talk about? What do you mean, “meaningful connections”? And what’s that no-social-media thing all about? I’ll tell you, in the past two weeks, I even had someone call me out on Twitter over that last one.

So, from start to finish, let me walk you through what a participant experiences when they sign up to attend the Diabetes UnConference.
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To begin with… when you sign up, you’re on the list. That’s my term. But whatever term you might use, you are on the list. You’re added to the list of attendees who will receive e-mails about what to expect when you arrive. What the meeting rooms are like (they’re often a little cold). What meals are part of the UnConference schedule. Timing of the different events.

You’re also on the list receiving the survey. The important survey where you list the things you really want to talk about on UnConference weekend. Hey, we’re the experts in our diabetes. The UnConference idea centers around the attendees setting the agenda and sharing what they know, instead of another guy in a blue suit and red tie showing you his PowerPoint presentation. The survey results are compiled, and as much as possible, we try to include all the subjects important to the PWDs (People With Diabetes) and PLUs (People who Love Us) that will be joining us.

But you’re not on a list, or on an island, by yourself. You’re also added to the Diabetes UnConference Facebook group, the one that includes only the attendees and facilitators for your specific UnConference. This is where the bonding begins, where people start to get to know one another. Where the tribe begins to form. We begin with introductions and share stories well in advance of our weekend together.

Wow, we haven’t even gotten to the actual UnConference yet. Stay with me.

Registration begins on Friday afternoon. For the facilitators, it’s a chance to meet new attendees for the first time and answer any questions. For returning attendees, it’s a chance for smiles and hugs and a little catching up before our meet and greet on Friday evening.

At the meet and greet, attendees are finally in the same space all together for the first time. Old friendships are made new again. New friendships begin to take hold. I usually hear a lot of comments like “Oooh, I like the color of your pump”, or “I make that too, but I do it gluten free and it’s delicious”, or “Where did you find that cute patch to go over your CGM sensor?”. All of that sets us up for Saturday and Sunday.

Saturday, we start to delve into the things that matter most to the people in attendance. Just a few topics are covered with everyone in the room. Mostly, PWDs gather to talk about what PWDs told us they wanted to talk about, and PLUs discuss things they shared via their survey. These are the moments that can be the funniest, the most raw, the most scary, and everything in between. And this is the reason for the no-social-media-during-the-sessions policy.

When people are sharing things that, in some cases, they have held close to their heart for many years, it would just be unfair to share that with the rest of the world via Twitter or Facebook. That is not why someone opens themselves up like that. They do it because they’re in a place where they feel protected, safe, without judgement. It is a protective cocoon where members of the tribe know there are no wrong questions. It’s a place where people can speak and know others are listening instead of reading another online news story on their phone. It’s where we feel respected. Where we feel valued as members of the tribe.

Often, at meals, in between sessions, and even during sessions sometimes, additional conversations are taking place in the hallways among people who connect even further on specific subjects that are more important to them than anything else going on anywhere else at that time. This is all part of those “meaningful connections” we often speak about.

Saturday night, the group gets together for a bit of a party or an outing as a group. After a day full of discussion on some heavy subjects, we need a little time to blow off some steam. So if you see posts of people letting go on Saturday night, this is why.

Once the last session is complete on Sunday, and people begin to head home, there are hugs and tearful goodbyes and contact information exchanged. There is a lot of hanging around and sharing one on one or two on two, etc. This can last for hours after. First-time attendees become alumni. Alumni look forward to continuing the conversation via the Diabetes UnConference Alumni group on Facebook, where alumni from all the UnConferences talk about their achievements, or vent about their frustrating day. Once the tribe forms, you’re part of the tribe forever.

You know, that’s a lot of stuff packed into just three days. Three days plus the time leading up to the UnConference, and the lifetime of friendships that come after. Still, a lot of stuff.

Yes, the Diabetes UnConference is unique. No, it’s not exclusive in any way. Yes, you will be welcomed as an equal whether diabetes has been a part of your life for 50 years or 50 days. It’s not always about “hey, I was able to lower my A1c”, though that happens sometimes. It’s more about knowing you are the expert in your diabetes, regardless of where your A1c sits at the moment. It’s about a shared experience with people who, if you let them, will be a part of your life for the rest of your life.

The Diabetes UnConference Las Vegas will be February 10 -12, 2017. To join the tribe, register here:
diabetesunconference.com/register

Full disclosure: I am part of the 2017 team of facilitators for the Diabetes UnConference.

Markers of our time.

Back in July, when I was at the Children With Diabetes Friends for Life event in Orlando, I had an opportunity to meet a few people working with Eli Lilly & Company in Indianapolis. Eli Lilly, as you probably know, is one of the largest producers of insulin in America. They also have this nice program that awards medals to People living With Diabetes for 10, 25, and even 50 years.

When one of the Lilly execs asked me how long I had been living with diabetes, I mentioned that I had hit the 25 year mark earlier in the year, which prompted the question “Did you send in for your medal?”. I had not by then, but I had thought about it. A few weeks after that gathering, I went to the Lilly website and applied for my 25 year Journey medal. And that’s where I get to the point, the personal point, of this story.
25yearmedal
On the one hand, it’s incredibly selfish to fill out an online form and say “Please recognize me!”. Even now, a couple of months after receiving my medal, it feels selfish. Living with Type 1 diabetes for 25 years does not make me special, and more importantly, it doesn’t make me any more special than anyone who has lived with diabetes for 24 years or 26 years, or any other number of years. Like my A1c result, it’s just a number. A benchmark.

On the other hand, I spent a lot of the past 25 years enduring crappy A1c results. Various doctors and family members, some with the best of intentions, made me feel like it was entirely my fault. Seventeen or eighteen years after diagnosis, I was being told to manage my diabetes exactly the same way I had been told to manage it in the months after diagnosis. I had heard of insulin pumps, mostly that it meant that my diabetes was way out of control. I had no freaking idea what a continuous glucose monitor was. No one bothered to tell me anything about them, and if they had, I probably would have resisted because I wouldn’t have understood their usefulness.

Things in those days were either good or bad; there was extremely little middle ground, and my fear was that the more people knew about my diabetes, the worse I would look. Once I began to look beyond just good and bad, once I started to examine the gray areas and really consider possibilities rather than punishment, my life and my life with diabetes began to change.

So I get it… I’m not special. But I have certainly earned this medal. And I’m not going to feel bad about that. Part of not feeling bad about that meant actually wearing my 25 year medal at the Diabetes UnConference in Atlantic City in September. You can’t see it, but I’m wearing it in our group photo from the event. Most people probably didn’t know I had it on, but I wanted to wear it while with a group of people living with diabetes.

These were people who completely understand the uphill climb that diabetes can be. How diabetes can take your best efforts and kick them to the curb. The emotions of highs and lows and middle-of-the-night set changes and visits to endocrinologists and ophthalmologists. The concerns about how today’s diabetes may affect our lives years down the road, and how much of it is not good or bad, but simply a game of chance.

I’ll probably pull this medal out from its case and put it on now and then. Because you know what? I really did earn this. Having a medal doesn’t make me special. But it’s a terrific marker of time, and a way to focus on the fact that I have survived for 25 years. And it’s more than okay to be happy about that.

The Diabetes UnConference Atlantic City.

Another Diabetes UnConference is in the books.
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This one was the first UnConference on the east coast of the USA. It will not be the last (more on that in a minute). Resorts Hotel and Casino was very kind for our few days along the New Jersey coast, and other than scorching late summer temperatures, the weather was great. Beautiful sunrises and sunsets.

What made the weekend really wonderful was the same thing that makes every UnConference special: the people.

There is something refreshing and honestly, for me anyway, necessary about getting together face-to-face with others who live with diabetes every day, discussing the things that are important and frustrating and funny and scary and sweet (no pun intended) about something that we understand better than anyone else: our own diabetes.

Each Person With Diabetes in attendance knows their life with diabetes better than anyone, and each attendee was able to convey their feelings and expertise on a variety of psychosocial aspects of living with this condition in a unique and respectful way. The format, along with our social media blackout during sessions, made for a safe place where everyone felt Welcomed, Valued, Respected, and Heard. Each Person who Loves Us (PLU— it’s a thing) in attendance was able to share, also in a comfortable, respectful, safe space, how it feels to share a life with a PWD.

As a facilitator in many of the sessions, I was once again humbled by the openness of people who have lived with diabetes for decades, and people who have lived with diabetes for just a few years. Many from the USA, and some from other countries, all seeking to understand themselves, each other, their jobs, their lives at home, and so much more. In the process, friendships were made, existing bonds were made stronger, and in one case, actual physical assistance made all the difference in a difficult moment. When the moment was over, it meant so much to be able to spend time with people who understand… people who get me. Priceless.

I think we all learned a lot. We certainly shared a lot. I think we all understand how important it is to:
#FindYourTribe

The next Diabetes UnConference will be at the Westin Las Vegas February 10, 11, and 12 next year. And I’m happy to report that The Diabetes UnConference will be coming back to the east coast in October of 2017. It will be in the Washington, DC suburb of Alexandria, Virginia. Details to come at a later date. If you’re looking for a little assistance to get to Vegas, the scholarship window is now open.

There is nothing like finding a safe, comfortable place to discuss the things that are most important to you. Especially when you live with diabetes, or you’re close to someone living with diabetes. Our pancreases don’t function properly. Our hearts are beautiful.
 

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