My phone starts to ring while I’m programming my meal bolus. I can see it’s a call I’d like to answer.

But I’m more than halfway through my programming, and I have numbers in my head (blood sugar, carb count) that I can release forever … once I get the programming done.

My phone continues to ring and buzz, urgently pulling my focus and attention.

Just a few more button presses…

Done! Got it!

“Hello?” “blah, blah, blah…” (more…)

My wife’s understanding and patience with me (and my diabetes) seems to know no bounds, and I’m so grateful.

It hit me about halfway through my shopping list at Walmart; that feeling of my blood sugar dropping fast and the anxiety of lots of insulin on board (relatively). A quick glance at my wrist confirmed it.

Five glucose tabs left in my tube, which I ate quickly, but I knew wouldn’t be enough to do the job. Why only five left? Because I’d used the other five earlier in the day. More on that in another post.

I quickly finished shopping, keeping a close eye on things. I grabbed a sweet treat at the cash register, ate it, then headed out to the car in a buzz of relief and concern about what happened.

Why was I concerned?

Because I had seven items on my shopping list, but my cart was overflowing with groceries. (more…)

I am thrilled to introduce Joe. He came all the way from Germany to attend the very first Diabetes UnConference and asked if I could help him share his experiences. I’m absolutely honored, Joe. Take it away!

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6,000 miles for just two days

A lot has been written about the first Diabetes UnConference already, so I want to focus on the view from the outside, from the perspective of a German participant, and share what made the UnConference so valuable for me.

The idea of visiting the Diabetes UnConference inspired me from the very first moment I read about it. The only problem was that it was in Las Vegas whilst I live in Germany – about 6,000 miles away!

Welcoming and Open

Even though a lot of the attendees knew each other – either personally or from the DOC (Diabetes Online Community) – I felt like I was part of the group from the very first moment. There were no isolated groups from people knowing each other already, separating from the rest. And everybody was always open to integrate others into their discussions. This openness was something new to me as Germans tend to be more distanced – at least at the beginning – and it has never been so easy for me to integrate without already knowing somebody.

But the biggest surprise for me was the intimacy I found at the Diabetes UnConference. Not only in small, personal talks, but also during session in the main room with almost 100 people. So many offered a look deep inside their heart, maybe allowing a deeper look to other attendees than they allow even to their own partner. This was something I did not expect and I will not forget.

Technology and Access

There are also technical differences between America and Europe. As Europeans we always expect the Americans to be way ahead on all technical issues. But I found out that, at least concerning diabetes technology, this is not always true. We had the Animas Vibe long before it was offered in the USA. And the Abbott FreeStyle Libre Flash Glucose Monitoring system has been driving diabetics in Germany crazy with excitement for more than three months, whilst the rep from Abbott USA was not even allowed to talk about it. On the other hand, Americans are enjoying the Dexcom Share receiver which will not be available in Europe at all.

Expectations Exceeded

I flew over to Vegas with little more expectation than to meet people I’ve only read about in their blogs. But what I experienced during the two days of the Diabetes UnConference was so overwhelming that I feel the strong desire to return in 2016.

6,000 miles is quite some distance, but the trip was worth every single mile. Thanks to Christel Marchand Aprigliano, the facilitators and all attendees for letting me be part of the group from the very first moment.

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Joe, thank you for taking a risk and coming! I’m so glad you felt welcomed, valued, and respected, and that you enjoyed the experience. You added so much perspective and value to everything, and helped make the Diabetes Unconference a success for all of us.

Jack took me on an amazing field trip. In the space of about 90-minutes, we visited four different clinics in India spread over 3,000 miles and reaching hundreds of people living with diabetes.

Jack Terschluse is the founder and President of Penpals United, an inspiring community of people with type one diabetes worldwide offering support and inspiration to children and teens using online support groups and traditional pen pal opportunities.

He got the idea when his former endocrinologist, Dr. Santosh Gupta, retired to start her own foundation to support children with type one diabetes in northern India (the Manav Seva Foundation).

“She told me about the lack of support networks for children in the developing world and connected me to a teenage girl named Surbhi who I started exchanging letters with. An idea popped into my head: what if an online support group existed for children with type one diabetes around the globe?” — Jack Terschluse, Penpals United

Thus, Penpals United was born. Thier vision is to build an inspiring community of people with type one diabetes worldwide by offering online support groups and pen pal opportunities for children and teens with T1d.

With mentors from the US, Canada, England, and Mexico now serving over 250 children monthly in India, Mexico, Rwanda, and Uganda, they are making a difference and continue to grow.

Jack says, “Our motto, Many miles, Many people with T1 diabetes, One connection, reflects the power we’ve discovered in sharing stories about living with T1d, ultimately empowering kids to be diabetes leaders in their villages who then can lift other kids up as well.”

My Experience

My time with their online support groups was nothing short of incredible. After connecting with Jack and his team, we spent the evening virtually zooming around India visiting with four different diabetes groups at local hospitals and clinics.

At each group I spent a few minutes sharing my story and talking about living with diabetes, then I took questions from the attendees. I was impressed by similarities we all face and their drive to grow their ability to support their peers, not only in terms of diabetes education, but also in the psychosocial space that we all know is so important.

I was also very impressed with the rhythm and system that Jack has put together. As we wrapped up at each site, one of Jack’s team (in this case, Hannah in the upper right, or Alex in the lower left) would stay behind with the local group to answer any additional questions, spend a few minutes following up, then transition it to the local group facilitator.

In the meantime, Jack, Dr. Gupta, and I would zoom off to another site and start the discussion with a new group. About halfway through, one of either Hannah or Alex would rejoin the call, ready to handle the transition again. It was all very smooth and gave me the impression that each local group was very well taken care of.

We only see part of the team here, but Jack has an awesome group helping, including Jay Haapala, who you may have seen on Scott’s Diabetes before.

One of the most powerful memories I have from my time with Penpals United is something Dr. Gupta said to me after we finished.

“Most people there, even the doctors sometimes, don’t expect people with diabetes to live more than 20 years. So simply seeing me, and others like me, who are living well after so many years of diabetes sends an incredible message of hope and inspiration.” — Dr. Santosh Gupta

She continues, “Having a Penpals United online mentor who lives successfully with type one diabetes shows these children that they too can live long, happy lives.”

How Can You Help?

I asked Jack if he had to pick one call to action, what would it be?

Write a letter to a child with T1d and then tweet to @PenpalsUnited that you wrote a letter! Building the international T1d community through the internet and Twitter is vital. — Jack Terschluse, Penpals United

If you’re looking for context, here’s a little Sega Genesis Internet history.

A couple of weeks ago I attended the American Diabetes Association’s 74th Scientific Sessions which brought over 17,000 people from more than 121 countries to San Francisco, CA for an action packed weekend of learning and connecting.

Thanks and Appreciation

I have many people to thank for making this trip possible:

• American Diabetes Association – The ADA has done a lot of work over the past few years to open this professional conference (designed for and aimed at physicians, scientists, researchers, and health care professionals) to patient bloggers. Their efforts here are, in my opinion, under-appreciated. Thank you, ADA, for opening up your press registration guidelines to this new world of information sharing.
• Diabetes Advocates – This is another group that has come a long way recently thanks to the hard work and devotion of the members. When my corporate sponsor for travel and lodging to the conference fell through, I applied for, and received, a scholarship for this conference through the Diabetes Advocates (a program of the Diabetes Hands Foundation). Couldn’t have done it without you, DA!
• Novo Nordisk – The scholarship mentioned above was possible thanks to the generous support of Novo Nordisk. They are helping bring a lot of patient advocates to a lot of conferences this year. Thank you, Novo!
• Korey Hood, Phd – Korey had the vision for making history at this year’s meeting, and I am honored to have been a part of it. He worked hard to make my visit to San Francisco super comfortable from day one. Much appreciated, Korey!
• Manny Hernandez – When I needed a place to crash for a couple of nights after the conference before heading north to run my race, Manny was quick to offer his place. I can’t tell you enough how much I enjoyed the time with him and his wonderful family. Gracias, hermano!

Behavioral Medicine & Psychology

I mentioned Korey’s vision for making history. His idea was to create a panel discussion around behavior medicine principals in the diabetes online community. I had the honor of sitting with Manny Hernandez, Jeff Hitchcock, and Kerri Sparling on the panel.

Allowing session attendees to engage with us in a safe environment, get to know a little bit about us (our history and background), and ask questions seemed to be very well received and appreciated by those who attended.

Of course, there were a lot of really tough questions, and for some of them there just aren’t any answers (I’m thinking of one specifically where patients were asking a clinician “why me?”).

We also had some great questions about the accuracy of information and more specifically what to do when we encounter bad information. I verbally stumbled while trying to address this concern, and was thankful to have Jeff, Manny, & Kerri to pick up where I fell short.

The experience as a whole was very special for me, and I’m honored to have been a part of it.

There was one person in the audience who approached the microphone and said that my blog had saved her life… and I literally had to pick my jaw up off the table. Thank you, D’Arcy, for sharing such a moving piece of yourself. That’s a moment I’ll never forget.

mySugr at ADA

It was a treat to have both Frank Westermann (CEO & Co-Founder) and Kyle Rose (Managing Director, USA) in town for the meeting. I enjoyed introducing them to many of my friends and business partners here in the states.

mySugr is excited to have a poster published this year (881-P Year: 2014) in collaboration with INSEAD about engaging patients with diabetes via mobile health technology during the holidays. My panel was during the poster presentation, so I couldn’t attend in person, but I hear it was well attended and well received.

So Much More…

There are many more great things I’d like to talk about, like meeting Jana Beck at the great D-Data ExChange event (she introduced me to diabetes and QS last year), and the incredible #dstigma Meet & Tweet which is clearly an area that deserves much more attention and work.

But if I had to pick one thing that really resonated with me, it would have to be a statement from Dr. Howard Wolpert during the 8th Annual Diabetes Forum presented by TCOYD & diaTribe.

It’s important to keep in mind who Dr. Wolpert is when considering what he said… Senior Physician, Adult Diabetes at Joslin Diabetes Center, Director, Joslin Institute for Technology Translation, Associate Professor at Harvard Medical School. In other words, he is a diabetes expert badass who is famous for his level of knowledge and expertise.

“The more I learn about diabetes, the more I realize how little I know.”  — Dr. Howard Wolpert

This, to me, is a testament to the complexity of diabetes and the advanced level of focused research, teaching, sharing, and collaboration that happens at Sci Sessions. It blows my mind and fills me with admiration for everyone working so hard to make things better for us.

It also reinforces my feelings that we do a pretty good job of navigating life with diabetes. It is complicated. And it is difficult. And it always leaves me with similar feelings like that of Dr. Wolpert. But most days I’m able to get up and make it through a day, and so are you. And that says a lot about us.

.@scottkjohnson undecided with the gelato options at Almare Gelato. 😉 pic.twitter.com/FWvQoOf3hj

— Manny / Diabetes (@askmanny) June 19, 2014