Monthly Archives: March 2016

Diabetes UnConference Las Vegas 2016.

Another Diabetes UnConference is in the books. Over one hundred People With Diabetes (PWDs) and People who Love Us (PLUs) gathered over three days at the Flamingo in Las Vegas, Nevada.

This year’s UnConference was different for me because as a facilitator, I was not only involved in the conversation, I was tasked with helping to make every attendee’s UnConference experience as good as it could be.

When you think of it only that way, it seems kinda scary. But the truth is, there was over 2,500 years of diabetes experience in the room. These people know what it’s like to live with the ups and downs of a disease they have to manage 24 hours a day, seven days a week. So while it could have been scary, in fact it was exciting. And fun. I was overwhelmed by the inspirational, friendly, loving, caring individuals that I shared the weekend with. I learned a lot about compassion, anxiety, and perseverance.

Just like last year, we covered a range of subjects that matter most to people living with and affected by diabetes. Some of those conversations were raw, some elicited laughter, some included tips and tricks for navigating high blood sugar numbers or insurance snafus.

To provide a safe, supportive environment for all in attendance, we adhered to the no social media policy instituted during the UnConference. So while I can’t talk specifics, I can reveal that together, we created a space for anyone to say anything, share anything, and help with anything. This is the hardest thing to explain to people who weren’t there, but it was absolutely the most critical part of the weekend.

While it might seem scary to help facilitate at a unique group gathering like this, the truth is that it was an incredible honor to share that role with my fellow facilitators. Special thanks don’t even begin to cover the admiration I have for Christel Marchand Aprigliano and what she has created.

As I watched the sun set over the Great Plains on my flight home, I realized that its magnificence paled in comparison to the many bright lights that shone from the Diabetes UnConference Las Vegas 2016. I am grateful you are part of my tribe. I can’t wait to see you again.

The Diabetes UnConference Las Vegas 2016 Alumni.

The Diabetes UnConference Las Vegas 2016 Alumni.

The Diabetes UnConference Atlantic City 2016 will happen September 9, 10, and 11 along the boardwalk in Atlantic City, New Jersey. Come be part of the tribe. To find out more, CLICK HERE.

Wordless Wednesday: The people you meet.

It’s no secret that the best part of going to diabetes events, wherever you are, are the face-to-face connections you make with others in attendance.

Last weekend, I was fortunate enough to attend the JDRF TypeOneNation Summit in Bethesda, Maryland. I was even more fortunate to meet Molly Schreiber.

Molly lives with Type 1 Diabetes and rheumatoid arthritis, and she writes about both eloquently at her blog And Then You’re At Jax.

Often in our lives, it’s the people you meet that make things so great. So great to meet another friend. You should go check out her blog!

Diabetes group think.

”The virtues, like the Muses, are always seen in groups. A good principle was never found solitary in any breast.”

As we head into the diabetes conference season, I’ve been reading and thinking a lot about groups, and how groups, particularly groups of people meeting in person, affect our lives and how we feel about them. And how we feel about others.

It’s not fair to say I’ve always been a joiner; it’s not fair to say I’ve never been a joiner. I’ve been a little of both through the years. Some of the things I’ve joined have been underwhelming (Board of Directors of my community association), and some have been fantastic (hello Diabetes Online Community!). Some of the decisions I’ve made to not join have been okay too. Since I’ve been old enough to vote, I’ve resisted joining the Republican or Democratic party, and I’m still a proponent of a third national party in the USA, though I would not join that either, if asked. I highly value my independence.
”I was never really attached to a clique, and I wanted to be in all the different groups; I was never a one-group kind of person. I think that’s still part of my personality today.”
~Katy Perry~

What is it that a group can do that an individual cannot? In diabetes, the answer is simple: A group can provide validation. A group can provide trust. A group can provide empathy and understanding. And that’s just for starters.

Can I survive without ever coming into face-to-face contact with another person who lives with diabetes? Sure… I did it for nearly twenty years. Those were also, arguably, among the worst years of my life. It’s the time when I encountered the worst of my diabetes. It’s the time when I struggled with careers multiple times and was knocked down repeatedly. Sometimes because I wasn’t up to the task, sometimes because someone else in the group found that the best way to get ahead was to make others look worse in contrast. That’s a side of human behavior I’ve really only seen from my generation, and I’m happy about that. I also hope I’m right about that.

At any rate, groups do not always generate the best of outcomes. And outcomes like that never lead to sustainable results. But what about this diabetes group think? How does it differ?

I’m not an expert in this field, but you have to think part of it comes from our shared experiences. We’ve all been down the same road a few times, right? That’s a good starting point. Also, we do not come into contact with others living with diabetes very often. When we do, we are often overwhelmed by an unspoken desire to ask and share and comiserate in equal measure. We want to understand another person’s diabetes as only we, as People With Diabetes ourselves, can understand it.

Occasionally, we will come together as a wonderful group of individuals as part of a shared experience. We all may have faulty pancreases in common, or faulty pancreases may be very close to us via a spouse, a friend, or a child. But rather than the inept nature of one organ being the focus, we instead gravitate toward making our lives better, using our invaluable perspectives of perseverance and empathy to forge a better future.
”Nothing truly valuable can be achieved except by the unselfish cooperation of many individuals.”
~Albert Einstein~

Recognizing all this has allowed me to change my focus from “what can I do?” to “what can I do for people living with diabetes?”. Being part of a group who knows my life because they have also lived the same life helps me trust more. It makes me want to engage in the conversation and strive toward a common purpose.

We’re not all perfect. Not all groups are perfect. But shared perspectives, the trust it brings, and the understanding and bonds that derive from it are universal, my brothers and sisters. It will never go out of style.

This weekend, I will be at the JDRF TypeOneNation Summit in Bethesda, Maryland. To find out more, CLICK HERE. If you plan to be there, let me know so we can say Hi!

Next weekend, I will be facilitating at the Diabetes UnConference in Las Vegas. To find out more, CLICK HERE.

Welcome to March.

So, how’s your life these days?

I thought I would ask because we’re entering March. Typically, people who make New Year’s resolutions tend to drop most of their big yearly ambitions by the end of January. Even more do so by the end of February, even if there is an extra day in there. I’ve noticed it at the gym. Like clockwork, the number of people going to my gym reduces by about half between the start of the year and the first of March.

QuePasaBut here’s the thing, and you probably know where I’m going with this already: Diabetes doesn’t take a break. It doesn’t care if I’ve put in a lot of effort on it through the first two months of this year. Diabetes demands a full time, consistent approach to glucose management, and oh baby, is it needy.

Still, sometimes you think, ”Hey, I really don’t want to do this right now, I’m kinda burned out”. Diabetes doesn’t care about that. Diabetes won’t cut you any slack. Often, like a stubborn pest, if you try to ignore your diabetes, it will demand your attention even more.

I’m full of good news today, right?

Look, I realize I’ve written a bit lately about how we have to give ourselves a break now and then, and try not to be so damned perfect every moment of every day. But I also recognize that ignoring my diabetes entirely is not an option either.

My question to you is, how do you do that? How do you balance the two?

One of the things that people don’t realize, I think, is that even when you’re right on with your D-management, you can still burn out. Often, you can feel your resolve slipping the most when you’ve been at your most diligent for a while. Other times, no doubt it’s because we’ve worked so hard to achieve good numbers and we still deal with crazy highs or stupid lows. So how do we solve that?

I don’t know if I have a good answer to that last question. But I sure wish I did.

Burnout seems to me to be one of those last bastions of life with diabetes where we can never quite explain how it sets in, or why it happens, or its incredible impact, to people not living with diabetes themselves. We don’t seem to have any super therapies to deal with it effectively. And I know there’s nothing out there designed to prevent diabetes burnout.

Yet the stakes are enormously high.

We all know what the stakes are, so I won’t repeat them here. But as you can tell, I have a lot of questions. Burnout is dangerous, it leads to unintended and sometimes dire consequences, and there is not a one-size-fits-all means of effectively dealing with it that I know of. Of course, consequences could happen even if we never suffer from diabetes burnout.

These kinds of things are going on in my head right now. I don’t know why.

But I know that I’m better not alone, even if burnout is taking over the day. I know that others living with diabetes understand and have been there themselves. That’s something I know I can lean on, and it means the world to me.

If you’re dealing with diabetes burnout, or diabetes is just taking too much of your soul these days, don’t be afraid to reach out and seek that person who understands. Every single one of us has been where you are. And even if we don’t have a foolproof plan that will work for you every time, we can offer absolutely no judgement while you work your way through this. And we’ll be right there to prop you up and support you in the process. You count. You matter. Just as much as anyone else.
Never ever give up.

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