Diabetes Stigma – Let’s Keep Talking About It

I love that the conversations about diabetes stigma continue, and it’s clear to anyone paying attention that there’s a lot to talk about.

The folks at diaTribe and dQ&A (dQ&A is a diabetes focused research company that works closely with Kelly Close, Close Concerns, and diaTribe) shared some really interesting information they gathered recently and I wanted to help spread the word.

Their Storify piece tells it so well:

Jerry the Bear: Reinventing Diabetes Education Through Play

I have loved the team at Sproutel ever since I first saw them running around in bear suits (long story, watch the video here for a sneak peek). They’re launching a big campaign today to get a bear in the hands of every child diagnosed with type 1 diabetes in the coming year.

Jerry the Bear: Reinventing Diabetes Education Through Play

 

Jerry

 

 

Watch, Learn, Contribute, Share, Help

 

Jerry Testimonial

 

I Ran a Half – Check Out my Medal!

Must be early in the race if I'm still almost smiling...

Smile and pretend you’re fine :-)

After finishing an 8k with Insulindependence last fall I talked myself into completing a half marathon in Seattle and committed to doing so on live internet radio (it’s also recorded, so I couldn’t pretend it didn’t happen).

I trained, and trained, and trained, and was feeling good until about three weeks before the race when I hurt myself (turns out I didn’t pay enough attention to proper running form early in my training).

I tried to work through it, I tried to rest it, I tried pretty much everything except going to the doctor until I couldn’t take it anymore (two days before leaving for ADA, 11 days before racing). Diagnosis? Proximal hamstring tendinopathy.

Injured

That’s a fancy way of saying a high hamstring injury. Treatment? Acute physical therapy, with no hope for recovery or relief in time for the race. But the doctor was so cool about it.

“Of course – run the race. You have to run the race, we’ll rehab you afterward.”

I didn’t talk much about the injury online beforehand, but I was totally freaking out. It totally threw off my training plan, which, in turn, really shook my mental confidence for completing the event.

It’s one thing to push yourself hard through an event you know you’ve trained properly for. It’s something completely different to do an event when you know you haven’t.

Holy mind games, Batman.

Enjoy the Experience

But I was all in. I was going to do the race and just take my time. Slow down if I hurt, walk if necessary, and just take in the experience. And that’s exactly what I did.

I enjoyed Seattle, had some wonderful quality time with Dana Lewis & Scott Leibrand (#DIYPS), saw some old friends (hi Ghosn’s!) and met some new ones (hey Terri & David!). Oh yeah, we raised some money for the American Diabetes Association along the way, which is pretty great, too. Thank you, all, for helping make that happen.

I earned a half marathon medal, and it’s something I’m very proud of. I wore it all the way home and was congratulated a few different times. That felt pretty awesome. And you can bet your green, orange, and yellow bracelets that I’ll be wearing that medal at Friends for Life next week, too.

Why? Because if I can do this then you can set a goal and do it, too.

Picture of me with my finisher medal after the race

Check out my medal, yo!


 

 

 

ADA’s 74th Sci Sessions in San Fran

Moscone Center in San Francisco

The Moscone Center in San Francisco

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

Welcomed with open arms

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

A big display in the halls of the meeting listing all of the special interest sessions

DOC on the schedule!

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?”).

A selfie of the panel showing Korey (moderating), Jeff, Manny, Kerri, and Scott

Panel selfie – had to do it.

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 the poster presentation, so I couldn’t attend in person, but I hear it was well attended and well received.

Picture with Frank, Dayle, Scott, and Chris

Frank, Dayle, Scott, Chris

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.




Honoring Heroes with the American Red Cross

Red Cross Advocate BadgeI’ve been invited to help the American Red Cross Northern Minnesota Region tell the story of the upcoming Heroes Breakfast.

I’m incredibly honored, and am surrounded by a powerhouse group of fellow advocates in the local area.

So Impressed

I attended a short meet & greet session last week to learn more about the Red Cross and the heroes being honored. I toured the local Red Cross facility and learned about the services offered and the philosophies behind them.

By the end of the evening I was positively blown away by everything I heard and saw, and so impressed by what the Red Cross does. I’ll talk more about all of that stuff in the near future, in a different post, because I think everyone needs to know (and help). This post, however, is all about shining light on a handful of incredible people.

Regional Heroes & Remarkable Stories

Their stories range from instant reactions and courage beyond reason to long-term visions and projects that require determination few can sustain.

 

I encourage you to read their stories on the American Red Cross Northern Minnesota Region blog post.

Sponsors

You’ll also see the companies who sponsor each of these awards, and they also deserve a lot of recognition for supporting these great honorees. The sponsors include the Carlson Rezidor Hotel Group, the Medica Foundation, UnitedHealthcare Military & Veterans, CenterPoint Energy, St. Jude Medical Foundation, and the American Red Cross North Central Blood Services Region.

You’re Invited

The 2014 Heroes Breakfast is happening on Thursday, June 5th from 7:00 am – 9:00 am at the Hilton Minneapolis. If you’d like to join us you can find more information and buy tickets here.

The Connection

There are some diabetes related connections through the Red Cross and their services, and I’ll be talking more about those soon. But I won’t be doing any of that until these heroes have had their moment.

They deserve that, and much more.

Minneapolis ADA Tour de Cure Champions! Let’s Roll!

Riding!

The Tour de Cure is FUN!

QUICK! What are you doing on Friday night?!

If you’re in the Minneapolis area and are coming to the Tour de Cure Champions VIP Dinner – I’ll see you there!

I’m honored to be the keynote speaker for the Champions to STOP Diabetes VIP Dinner on the night before the big ride, and I couldn’t be more excited!

You are an incredible inspiration to me, and to think that I’ll be up front trying to inspire you is humbling. But don’t worry! I’ve got some great stuff ready for you!

We’ll have some fun, get some food, and get all charged up and ready to roll on Saturday morning!

“Go Red Rider!”

Kevin K. Talks about Diabetes Training Camp

Today I’m featuring a guest post by Kevin Kosewic. He’s lived with type 1 diabetes since 1967, diagnosed at the age of 8. Just over six years ago he discovered Diabetes Training Camp, run by Dr. Matt Corcoran, and fell in love with it.

Diabetes Training Camp is a unique clinical resource entirely devoted to diabetes, fitness, exercise, and sports education. If you have diabetes and want to learn more about general fitness, lifestyle management or even taking your current training to the next level, camp is built for you.

Kevin tells us more:


I arrived at camp (really a college campus with classrooms, dorms, dining hall, gym, etc.) a day early to get my bearings – a preference of mine, and decided to pay a little extra to take advantage of the opportunity to get a professional bike fitting at this thing I was doing called Diabetes Training Camp (DTC).  Grant, a trained bike fit technician, was making the final adjustments when another newly arrived camper entered and gave him a big hug.  They knew each other from an earlier camp and caught up with each other quickly.  With no explanation, the camper started popping Peanut M&Ms.  Grant asked, “Feeling low, huh”?  I took note.  A few minutes later, as my newly fitted bike and I waited for the elevator, I heard Grant say, “I’m getting low, too.  Got anymore Peanut M&Ms”?  It was at that moment I knew I’d found something special, something wonderfully awesome in the world of T1D.

runningI first learned of DTC the previous fall at a party hosted by one of my wife’s friends (a nurse CDE).  She knew about my T1D and my fascination with swimming so she made sure to introduce her best friend and colleague, Kathleen, who is an accomplished tri-athlete, an Ironman, and a T1D.   We talked about exercise and diabetes and quickly got to the topic of Training with Diabetes and my desire to improve my free-style technique.  Suddenly, her face lit up even more and she says, “You would love Diabetes Training Camp!”  For the next fifteen minutes, she told me all about this incredible experience she had the previous summer called Diabetes Training Camp run by an amazing Endo and sports enthusiast, Dr. Matthew Corcoran, MD.  And thanks to camp, she was now seriously training for her first triathlon.  I was cautiously intrigued.  Cautiously, because I had never considered myself capable of doing all the athletic things she was describing.  Eight months later, I was headed to my first Diabetes Training Camp. It was the best thing I have ever done for myself.

kevsteamDTC is a camp focused on T1D adults, 15 years old and above.  Dr. Matt started with the goal of empowering T1Ds to understand the relationships among insulin, intense sports, fueling the athlete in training, competition, or recovery so that diabetes is not a reason to avoid participation in life or in competition.  Campers range from the recently diagnosed to some living 40+ years with the disease.  Some have never met another diabetic.  But we all come with a desire to stay healthy, learn skills to help us exceed in personal exercise goals or achieve success in athletic competition.  DTC is holistic in its approach to the diabetic and tailored to the specific needs of each camper – starting with the intake phone interview that occurs several weeks before camp.  Diabetics and athletics are the focus of camp and Dr. Matt is its center.  Each year he assembles at top-notch staff of professional coaches (many T1D) to lead classroom sessions on current medical, nutritional, and mental skills training.   There is also athletic coaching clinics (running, swimming, cycling, strength training, yoga, etc.) covered throughout the week.  Staff is always available for guidance and support.  But core to the camp (and the campers/athletes) is the education regarding the intricate physiology of the insulin, carbs, and exercise triangle.  To eat, or not to eat?  To bolus, or not to bolus?  To train today, or not to train today?  These and all the thousands of questions we ask ourselves 24×7 are explored, tested in training, and practiced at DTC in what quickly evolves into a tight-knit and supportive group of people with a common purpose – to develop to the next level.

kevThe days pass too quickly.  Some push themselves to do everything available.  Others set a pace more suited to their personal goals.  Camp supports both approaches.  I’ve attended camp three times in the past six years.  Each camp has its own unique personality but each camp has taught me so many things that I’ve taken back into my own swimming, cycling, family and work world.  I have made friends across the country. We follow each other on social media sites, and cheer our camp-mates on their marathons, triathlons, Ironmans as well as weddings, children and other life events.  The last official event of each camp is the ‘circle’ when everyone is invited to share their experience of camp.  Not surprisingly, there is 100% participation.  At last year’s camp, Dr. Matt reflected how DTC is much more than he first envisioned.  It has become a family, a place where staff and campers share and contribute to the benefit of each other.  A week at DTC provides the time and focus for this to happen.  DTC is all about friendships, learning, community and success!  Come discover for yourself that wonderfully awesome something I experienced my first few hours at Diabetes Training Camp

And thank you, Dr. Matt!


And here’s a little PSA from the DTC org ->  The next session is happening June 16-21 in Lancaster, PA, and registration is open now!

 

Is it Important to You? Hope?

Logo Image for 2014 Diabetes Hope Conference

In less than one week (on Tuesday, May 20) I will be joining a group of panelists, a handful of behind-the-scenes people, two partner organizations (Diabetes Hands Foundation & dLife), and one sponsoring company (Pamlab) to bring the second Diabetes Hope Conference to the community.

Completely free, and accessible to anyone, anywhere. The goal is inclusion and involvement for as many as possible.

We learned a lot from year number one about what content and topics resonate with people. We hope to present more of what you like, and less of what you don’t.

Value?

It can be difficult and a little scary for companies to invest anything (time, money, or even their name) into social efforts like this. Most of the people can see the value, but it often has to translate into company related terms; cost, investment, return, etc. We all know that social media doesn’t work that way.

But there are other ways to send a signal.

In the case of the Diabetes Hope Conference, blowing past our registration goals is a crystal clear signal that this is important to the community.

Our goal is 500 registrations. We’re at 285.

Is this important to you?

Can we make it easy for our conference sponsor to say “YES!” to the third Diabetes Hope Conference?

Can you help me send a signal?

Best Cupcake Ever – dBlog Week

5th-dBlog-Week

 

Our assignment for day two of the fifth (!!) annual #DBlogWeek is to write a poem, rhyme, ballad, haiku, or any other form of poetry about diabetes. At first I thought this would be really hard for me, but my day delivered a perfect solution, literally!

I am spending the week at mySugr HQ in Vienna, and made sure to connect with Viola. She brought me a very special gift which helped me come up with the perfect rhyme. :-)

Cupcake for Scott!

Cupcake for Scott!

A magical trip to mySugr in Vienna and a special visit from Viola

who brought with her a giant cupcake FULL of diet cola!

Viola – thank you for coming to visit, I really enjoyed meeting you and getting to know you! I love your attitude of giving yourself permission and acknowledging that it takes time. You are so right, and your wise words will live long in my mind.