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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Just Talking about mySugr

Kyle Rose, mySugr’s Managing Director for North America is my guest this week. We cover Kyle’s work with mySugr, the complexities of an international business with respect to localization and government approval. As well as covering the basic of the mySugr suite of applications, I also ask about the future of mySugr and do my best to learn about future product updates without getting Kyle in trouble. There’s also, for reasons I cannot explain, some mention of Cornell’s A Capella scene. Enjoy!

You can learn more about mySugr at mysugr.com and by following them on Twitter @mySugr.


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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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Thank You For Registering For Medicine X

Full Disclosure: As a member of the ePatient Advisory Board for Stanford Medicine X, I receive a full scholarship to attend. That said, I’m super excited to officially be part of the 2014 conference. I even took the liberty of updating my profile for the conference program.

This will be my third year attending Medicine X. When I first applied in 2012, I didn’t know why I would be worthy to attend a conference held at Stanford, featuring patient advocates that I knew, respected, and felt that I couldn’t hold a candle to.

In the months after Medicine X 2012, I began to understand my role as a patient advocate and respect the fact that everyone has a story to tell. And every story is worth telling. With that mantra guiding me, I applied for and received an ePatient Scholarship to attend Medicine X in 2013.

Now I’m back, this time as a member of the ePatient Advisory Board. I still believe that everyone’s story is worth telling, and I continue to search for ways to empower and connect with voices and perspectives within patient communities – often focusing within the diabetes online community. Kindred spirits with busted pancreases and all.

And now that the initial abstracts for presentations and panels has been published, there’s even more reason to anticipate this year’s conference.


You can expect more talk about Medicine X as September approaches. Among the many meaningful and noteworthy moments in my journey as a patient advocate, Medicine X is one of the stand outs. Without this conference, this blog would be a rambling mess of cat pictures and nonsense. Now, it’s a rambling mess of cat pictures and nonsense with an occasional call to action or moment of clarity in the busy world of patient advocacy, with a side of patient engagement.

I’m not an authority on any of the stuff I write about here, but conferences like Medicine X help define, refine, and focus my thoughts in ways I never thought possible. This is a big deal for me. If you think it could be a big deal for you, registration is open now.

PS. I know the registration fee might look daunting. Even if you didn’t get a scholarship to attend, there are other options. Just a thought.

Automotive Customization

Looking back, I’ve always had a vanity license plate. My first car was Su6rFr3; a bold attempt to recreate my initial diabetes alias, SugarFree.

The vanity plates for my second car reflected my current persona – 5prtc5. You know, because I am Spartacus. I even put that on a JDRF themed plate. Between Spartacus, diabetes, and the Virginia Tech frame, you had an entire snapshot of who I am. (Assuming you could translate 5prtc5.)

Now that I’m living in California, there’s a new opportunity to customize my drive-by status. Lucky for me, you can get particularly creative with license plates in this state.

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The Price of Patience

These little bumps in the night are the cost of not consciously (or unconsciously) overtreating an overnight low. Rather than eat my entire pantry, I started with a couple of glucose tabs. Once that didn’t work, I had some juice. Eventually, as documented, all was well but the time spent nursing alarms and waiting for things to be “normal” is time spent not sleeping.

It’s not fun.

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