More Thoughts on #dayofdiabetes

As I begin to curate and publish Day of Diabetes stories from yesterday, I’m starting to think about larger takeaways beyond the mere presence of tweets over the past 24 hours. I’m trying to keep track of the questions I’m asking, not with the hopes of finding immediate answers, but because I think there’s an extended conversation we can have as a result of your collective participation.

What can be gained by people with diabetes who observed #dayofdiabetes, but did not participate?

What can be said about the people who started sharing their #dayofdiabetes, but could not finish?

Why is sharing this level of detail important?

How can these stories become the foundation of something bigger? What does bigger look like?

Are there other patient communities that could engaged in a similar live-tweeting?

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Revisiting #dayofdiabetes

And with that, we’ve settled on Thursday, April 10 as a new #dayofdiabetes.

I’m calling this a revisit because I shared my first #dayofdiabetes last May and a bunch of people gave it a go after that. Engaging with this project is not something that I recommend on a daily basis. Looking this hard at my diabetes management, recognizing every action that I take that has a diabetes influence, and remembering to share that thought with Twitter…it’s exhausting (more so than simply living with diabetes.) That said, the advocacy and awareness impact of doing this is immeasurable.

For all the blog posts and independent tweets we share with the world, putting them back to back for a full day provides real insight into what it’s like to live with this disease. That’s the power of sharing a #dayofdiabetes. It’s just one way we as a community can spread diabetes fact rather than let diabetes myths pollute the conversation. It’s one of the most personal ways we can educate each other, and the general public, about the similarities, differences, struggles, and successes that come with living with diabetes.

So this Thursday, I invite you to share your Day of Diabetes. If you’re interested in participating, let me know in the comments or send me a message on Twitter @iam_spartacus. If you want to Storify your own tweets after you’re done, feel free. I’ll do my best to capture each of your days and post them up on the Day of Diabetes blog.

If you want to see what past entries look like, you can visit dayofdiabetes.tumblr.com.

And if you are afraid you’ll be alone in your tweets, fear not…

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The Great Divide

For those of you that are catching up, I moderate a blog called My Diabetes Secret that hosts anonymous submissions, or secrets, from the diabetes community. These submissions are typically confessions about life with diabetes. Fears. Anger. It’s really heavy stuff. I read every single submission before queueing it up to go live on the site. I get a notification every time someone likes or reblogs a post. It all goes through me.

Lately the frequency of submissions addressing the great divide among the diabetes community have been increasing. Normally I wouldn’t write about this, as it’s sadly something I see far too often among comment threads and miscellaneous tweets and blog posts and it’s something I don’t feel properly equipped to tackle. But because this is a home that I’ve built, I can only endure so many attempts to dismantle something that I’m quite proud of despite its relative digital infancy.

I’m of multiple minds when it comes to these posts. Part of me wants to delete them. Pretend they never happened. Something along the lines of “don’t feed the trolls”.

Another mind says that this is the reality of the diabetes community; well, this is the reality of a subset of the diabetes community. I realize that the Tumblr audience is a bit younger than most of the people with diabetes I interact with on a more regular basis. Maybe, and I’m being incredibly reductive with this one, they just need time to grow up?

While I’m not going to all-out deny submissions on the blog, I’ve found a middle ground that, for now, I’m comfortable with. Rather than cross-post to Facebook and Twitter, submissions adding fuel to a fire that I want no part of will be queued for publishing, but not shared on Twitter and Facebook. Until I can wrap my head around a better way to proceed, this is how I am handling those posts.

But there’s still something deeper at play with all of this. I’m not smart enough to know the answers, but I’m naive enough to ask some questions. So here we go.

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About That About Page

The first thing I wrote for this blog, besides a silly update to the “Hello World” default post that WordPress sets up for you is my “About” page. The first published timestamp for that page is December 31, 2008 (5:52 AM). Once I settled on the content, I kinda let it sit.

For over 4 years.

I suppose now is as good a time as any to overhaul that one, right?

I’m not sure if that page will always be my first impression to new visitors to my slice of the Internet, but the least I could do is keep some of this stuff slightly modern. It’s incredible to see how my life has changed since this thing started 4 years ago.

At the end of the day, I believe in storytelling. I believe that the stories we, the diabetes community, share strengthen our community and improve our capacity for greatness by an exponential margin. I believe that every story is worth telling, no matter how ordinary it appears to be on the surface. I believe all of “this” is best served to help remind others that they aren’t alone with their diabetes, their cancer, their rheumatoid arthritis, or whatever else you may be dealing with. I believe that every patient community has something to teach, and something to learn.

Right now I have a lot to learn, and if I’m lucky a few things I can help teach in the process.

Welcome to my madness.

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Just Talking About Balancing Diabetes

This week we’re talking about Kerri Sparling’s book, “Balancing Diabetes”. First I talk to Kerri about the writing process, developing a cohesive voice with the many contributors who helped make each chapter complete, and the awkwardness of self-promotion. Fitting with the nature of the book, I’m also joined by George Simmons, Sean Oser, Harry Thompson, Briley Boisvert, and Christel Marchand Aprigliano to discuss the chapters they contributed to, and why this book is awesome. Enjoy!

“Balancing Diabetes: Conversations about finding happiness and living well” is available now. You can pick it up on Amazon or Barnes and Noble, and learn more about the book, and Kerri at http://sixuntilme.com/book.

Special thanks to the other guests who appeared on this week’s podcast:

  • George Simmons – ninjabetic.com – @ninjabetic
  • Sean Oser – t1works.blogspot.com – @seanoser
  • Harry Thompson – @harrythompson
  • Briley Boivert – independence.com – @4thandlife
  • Christel Marchand Aprigliano – theperfectd.com – @theperfectd


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DiaBuzzfeed

This morning, Kim posted this:

The response was quite enthusiastic.

Later that day, this appeared:

And now DiaBuzzfeed is a thing. And it’s great.

And since there’s an option to submit posts yourself, I will be looking for my favorite animated gifs and a way to tie them all together with a diabetes-twist.

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A Few Thoughts About TCOYD

This weekend I drove up to Sacramento to attend the Taking Control of Your Diabetes conference. Going into the day, I had a number of assumptions and preconceptions about what TCOYD is and isn’t – most notably that this conference is geared towards people with type 2 diabetes.

This year TCOYD was being hosted in Sacramento’s Convention Center, at the same time as Comic-Con on the other side of the building (I wish I took pictures of the cosplay, I was very impressed). After opening remarks from Dr. Steven Edelman (Founder) and Dr. William Polonsky, there were two primary session “tracks” geared toward type 1 and type 2 audiences.

I did what I could to document observations and remarks throughout the day, so the rest of this post will be fueled by those tweets.

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