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Posts from the ‘Diabetes Advocacy’ Category

Spotty Service.

In the earlier part of this week, I was up in Ogunquit, Maine with Chris and Birdy, following through on our family obsession with Maine (“the way life should be!” claims the sign you drive by when you cross into the state, marking the moment when Chris usually points a finger at the sign and says, “YES.”).  The place we stayed at had a fantastic view but spotty cell service, making access to the Internet (aka “how Chris and I do our jobs”) difficult.  But cutting back on emails and access wasn’t the worst thing.  In fact, the first few hours give me twitchy fingers but then I love it.  Love.

Last photo from Maine (probably not, though). Photo credit to CSparl.

A photo posted by Kerri Sparling (@sixuntilme) on

My best girl

A photo posted by Kerri Sparling (@sixuntilme) on

Maine

A photo posted by Kerri Sparling (@sixuntilme) on

When I signed back online to catch up on things, I saw that there was a whole crossfit clusterfuck that took place, with the Crossfit CEO running his mouth about diabetes and making crappy attempts at humor (?) that lit a fire underneath the diabetes online community, bringing my Twitter feed almost to capacity with back-and-forths about misinformation, stigma, and a pile of -isms.  A few people pinged me for my reaction on this whole thing and I felt embarrassed that I didn’t really have one.  Yes, I thought his joke was fucking stupid and offensive and perpetuated countless stereotypes and misconceptions about diabetes on the whole.  I was happy to see the diabetes community rally in support of education. I was also encouraged to see how many people stepped up to raise their voice.  I was disappointed to, once again, see the whole “Wait, he means type 2 diabetes!” shouted out as if we de-stigmatize one portion of our community by further stigmatizing another.  And also, I was frustrated to see that people were quick to talk about how sugar doesn’t cause diabetes (which is doesn’t) but there wasn’t a whole lot of recognition about how fucking gross it is that there is so much added sugar in our diets (which there is), unrelated to diabetes but entirely related to overall health. 

Basically, this whole thing made made me a little mad at myself because I couldn’t drum up the desire to care too much about the whole thing, making me feel like a crumb of an advocate.

But I think all kinds of advocacy are necessary and important, even if all the issues on the table aren’t ones I’m super passionate about.  Everyone gets to pick their battles, to a certain extent. I hope we continue to attack issues like policy and under-served populations with the same vigor as we correct misinformation on Twitter.  If it were up to me, this brouhaha would segue into a broader campaign of awareness and advocacy that helps touch the lives of people outside of our bubble of privilege.  (I’m adding a link here to Spare a Rose because when I think about bursting a bubble of frigging privilege, this campaign comes to mind in a big way.  Yes, I’m biased.  In related news: my bias is not news.)

I’m experiencing spotty service again, only this time it’s in my own advocacy mindset.  Brain attention flits between wanting to make a difference in how society, and our own community, views diabetes sometimes and exhaustion at the effort of attempting that whole “difference” thing.  Which is why I’m looking forward to Friends for Life next week, with a special focus on MasterLab.  I want to hear more about launching your advocacy movement from Kim, and about changing policy from DPAC, and about alerting the media from Stacey.  I need to take a little bit of my advocacy burnout and frustration and channel it towards something useful. A reboot of all kinds would be good. I hope FFL does it for me because I sorely, sorely need it.

The Need for Naps … I mean, Self-Care.

Ten years ago, if you told me I’d have to bail out of a conference in the middle of the day to take a nap, I’d have laughed in your face because I thrived entirely on insulin, caffeine, and chaos and what do you mean, NAP?  I don’t need to nap.

Funny how being in my 30′s and hosting almost three decades of type 1 diabetes in my body has changed my whole stance on naps, and self-care in general.

This past week, at the American Diabetes Association Scientific Sessions meeting, there was a lot going on.  Informative sessions, meetings with colleagues, social things with friends in the DOC, and a big exhibit hall full of diabetes companies, both established and up-and-comers.  Lots of stuff going on, and the pace of the conference is enough to wipe you out entirely.  (To catch some of what happened, take a peek through the #2015ADA Twitter hashtag.  There’s quite a bit there.)

Self-care is important for people with diabetes, but it’s not something I used to focus on.  I don’t mean self-care as it pertains to the specifics of diabetes, like checking blood sugars and taking insulin, but more the overall need to listen to my body and take it easy as necessary.  Things like “eating lunch” and “sleeping more than five hours” are included in self-care, but I had a bad habit of not doing either of those things.  I used to power through, soldier on, keeping going, [insert more phrases about not taking a moment to rest here] even when my body was throwing up its hands and hollering, “HOLY SHIT WOULD YOU PLEASE STOP?!”

But the effects of pushing too hard oftentimes wore through my good intentions and left me exhausted, with crummy blood sugar control to boot.  This past week, I embraced PTMO (permission to miss out) in efforts to stay healthy and feel “present” when I was at an activity, and it was a nice change of pace.  I went to sessions and wrote up my notes, and then took an hour to decompress in my hotel room.  I took naps in the middle of the day, grateful for the recharge that 15 minutes with my eyes closed provided.  I did not over-schedule myself but instead tried to keep the flow of the day less frenetic.

Permission to miss out, to take care of my own needs, makes me feel a little meh, as though I’m not able to keep up and that makes me weak somehow.  It also forces me to acknowledge that some parts of diabetes are taking a bit more of a toll on me than they have in decades past (ex. I had a low blood sugar during the conference that wiped me out for two hours.  The hangover is real.)  To Me 10 Years ago, the concept of taking it slower sounds ridiculous and the stuff that weak-sauce is comprised of, but to Current Me, it sounds necessary.  Because I’m older.  And possibly slightly smarter.  I felt present and able during the course of this conference, and I blame taking advantage of PTMO.

Because ultimately, PTMO leads to TGC (taking good care).  And it’s NWF (not without fun).

With Marissa Town at the TCOYD / diaTribe forum where we learned, laughed, and Facetime'd her kid. :)

A photo posted by Kerri Sparling (@sixuntilme) on

Mike Bloom from Dexcom has awesome shirts. #2015ADA

A photo posted by Kerri Sparling (@sixuntilme) on

Collector card.

A photo posted by renzas (@renzas) on

Diabetes Hands hosts some of our diabetes faces. #2015ADA #honored

A photo posted by Kerri Sparling (@sixuntilme) on

Interview: Anna Norton on the Future of Diabetes Sisters.

Organizations that bring people touched by diabetes together have a special place in my heart, because peer-to-peer support checks that “whole person care” box on the mental diabetes management to do list.  The Diabetes Sisters organization is a group that brings women with type 1 and type 2 diabetes together in an environment that fosters open discussion, camaraderie, and learning.  Today I’m talking with Interim CEO Anna Norton, who is helping transition the organization into a new era.

*   *   *

Kerri:  Thanks for taking the time to talk today, Anna!  We’ve known one another a long time, and you’ve been part of the Diabetes Sisters organization for years.  Can you tell me a little bit about how you got involved with DS?

Anna Norton:  Thank you, Kerri, for taking time out to interview me! I initially became involved with DiabetesSisters in 2011, when I attended my first Weekend for Women Conference in Raleigh, NC. That was the first time I had ever experienced being in a room with 99 other women with diabetes. I never realized how much I needed their understanding and support until that weekend; before that, I just managed on my own. Following that event, I was asked to join the planning committee for future conferences. In 2012, Brandy asked me to join the DiabetesSisters’ staff full time as Operations Manager, where I oversaw the National PODS Meetup program (our monthly support group meetings), the Weekend for Women Conference Series, online contributors, and other programs. Over the last four years, I’ve gotten to know so many people with diabetes, so many “movers and shakers” in the diabetes community, including you!

Kerri:  What is your personal connection to diabetes?  How does your personal experience color your involvement with Diabetes Sisters?

Anna Norton:  I was diagnosed with type 1 diabetes in 1993, when I was 18 years old. Initially, I had a few years of okay management, followed by years of noncompliance, depression and poor medical care. Eventually, I faced the reality that diabetes was controlling me and holding me back. Once I realized that, I was able to make changes in my management, starting with finding a new endocrinologist and going on a pump. Then I fulfilled my personal dream of getting married and having a child, which so many people told me I would never be able to do.  It’s been 15 years since I “transformed” my diabetes care and I’ve never looked back. Over the years, I have met so many women through DiabetesSisters, all at different stages in their diabetes care. I see myself in so many of them: a younger version of myself struggling to figure out how diabetes plays a role in her future, a mom managing both diabetes and a young child, a professional figuring out how diabetes will affect her career. I am inspired by every woman I meet living with diabetes, thriving with it, each with her own story of success. It’s important to me to have these women in my life, to support and guide me, and in turn, for me to do the same for them.

Kerri:  With Brandy leaving the organization (and she will be missed!), how do you see yourself stepping up and taking charge of this amazing group?

Anna Norton:  Brandy really did an excellent job in building a strong foundation for DiabetesSisters and for that, we are grateful. Over the last three years, she and I teamed up to create more programming to serve our online population and train more women to lead our PODS Meetups – monthly support groups that meet in over 30 cities throughout the US, including an online meetup. Over the years, Brandy entrusted me with the care of DiabetesSisters on so many levels, all the moving parts became very familiar to me. When Brandy decided to step down, the Board of Directors asked me to step into the Interim CEO role and continue the work. In my new role, I have the opportunity to meet supporters and funders that have helped shape the success of DiabtesSisters, and I get to share our member stories with them, as well as represent their needs. It’s important our funders to know how much their support helps change lives.

Kerri:  What are you most excited about, as CEO?  What scares you the most?  And how can the DOC help as you transition?

Anna Norton: I am definitely excited about continuing on this great path, growing our programs and services, adding more topics to our webinars, and reaching as many women as we can. I’m excited about adding some services for underserved populations, such as African American and Hispanic women. I have a busy summer ahead of me, representing DiabetesSisters at various conferences. The biggest challenge, though, is our small staff, although we’ve had some key volunteers step up to plate to help out, which is fantastic! During this time, I’d love for the DOC to reach out to me, introduce themselves virtually or in-person, and learn more about how the organization can serve them or ways we can partner up to impact more lives. I’d love to see women in the DOC step up as leaders and create more PODS Meetup groups in their communities, share their stories with the community through our website blogs, and provide online support through their own blogs.

Kerri:  Will the PODS meetings still continue?  How about regional conferences?

Anna Norton:  Of course! We just completed a weekend Leadership Institute for our PODS Leaders, which focused on more training for them. This program is, by far, our largest in-person, serving over 1,200 women annually, with a balance of education and support once a month.

Our national Conference Series – Weekend for Women, along with the Partners’ Perspective Program – is still alive, although we took this year off to focus on the Leadership Institute. It’s always a challenge with limited funds, so we’ve tried to provide the best programming in 2015.

Kerri:  What’s next for Diabetes Sisters, and how can the DOC get involved?

Anna Norton:  Our future is bright – and I’m glad to be a part of it. This is a time of continued growth for DiabetesSisters, and for all diabetes-related organizations. There’s so much to learn, so many treatments to trial, so much support to be provided. The DOC can move mountains with its influence, and encourage their audience to learn more about DiabetesSisters, read our website (www.diabetessisters.org), subscribe to our e-newsletter, listen to our webinars, and most importantly, get the word out about how we are a one-of-a-kind organization focusing on the emotional and social well-being of all women living with all kinds of diabetes.

Kerri:  Where do you see Diabetes Sisters in six months?  A year?  Five years?

Anna Norton:  That’s a great question! I definitely see DiabetesSisters continuing on the path of growth. With a great Board of Directors leading, there’s no doubt that will happen. In the near future, we will continue to build upon the foundation that is set, growing existing programs, trialing new ones, listening to our members and providing for their needs. Over the course of the following years, I see great partnership being forged with other organizations, maximizing our potentials in the diabetes support world. Eventually, I envision DiabetesSisters as the go-to for women living with diabetes to learn more about every stage of life including the years of young adulthood, relationship, pregnancy, parenting, peri-menopause and beyond, advance duration, etc.

Thank you, Kerri, for allowing me this opportunity, for being a DiabetesSisters’ cheerleader and for giving so much of yourself to the organization. I am excited to expand my role in the DOC and contribute to the support of our community!

Turning Ten.

I’ve written ten years of content here at this blog, and today marks the beginning of an eleventh year.  Ten years is a frigging long time.  When I started blogging, I was 25 years old and living in a one bedroom apartment in southern Rhode Island with Abby the Cat and a newly-minted Siah Sausage, starting my relationship with Chris and clumsily finding my footing as a proper adult.

Rocketblast forward ten years and I’m a self-employed writer and proud diabetes advocate, married to the guy whose name I still write in the peanut butter, mother of one small but fierce little Bird.  (And, as Rhode Islanders should, we came back to Rhode Island.)  Throughout the last ten years, so much has changed.  But type 1 diabetes has been a constant.  (A constant pain in the butt.  A constant source of humility and perspective.  A constant thing to be conscious of and diligent about.  All of it.)

What makes my diabetes management easier?  A healthy diet, lots of exercise, checking my blood sugar, taking insulin appropriately … check.  What makes doing all those things easier?  A healthy community, lots of community, checking in with the community, taking community appropriately …

… check again.

I could go on and on about how blogging about diabetes has opened up opportunities for support and camaraderie, but I’ve kind of already done that.  So I’ll just say thank you to each and every one of you who reads this blog or writes their own blog or Tweets about diabetes or posts about diabetes on Facebook or Instagram or Tumblr or [insert shiny, misspelled social media thing here].


Thank you for sharing your stories, and for creating our diabetes community and helping it grow.  It’s been an amazing journey, the one from “alone” to “connected,” that “grateful” doesn’t even begin to touch.

Onward and upward.

Guest Post: #SpareARose and Symplur.

I’m late with today’s post, but it’s a good one.  :)   This afternoon, Chris Snider of A Consequence of Hypoglycemia has contributed a guest post about Symplur and the Spare a Rose, Save a Child campaign.  It’s an in-depth look at how the stats of the #sparearose hashtag campaign influenced the spread of the message.  This post is an interesting peek at where analytics and community passion line up, and where they don’t.  Thanks, Chris, for offering your insight!

*   *   *

I started working with the folks at Symplur at the beginning of this year. My objective was to tell stories and bring the patient community further into the conversation around data – specifically the data they are generating through health conversations on Twitter. After the Spare a Rose campaign concluded, I reached out to Kerri to see if I could help shine a light on the 2-week whirlwind using Symplur’s fancy analytics tool, Signals. I was given four questions to try to address.

1. How did the message spread? Did it reach outside of people with “diabetes” in their profile?
2. What kinds of messages resonated on the whole? Calls to donate, stories about why insulin matters, etc?
3. Did people with small reach still have a big impact because of the close knit nature of the DOC?
4. Can the data prove that every voice does matter?

(1.) What the data says: people associating themselves with diabetes in their screen name, user name, or description represented 43.9% (321) of #sparearose participants, but generated 63.5% (5,825,580) of the impressions. What is difficult to report on is how many of these impressions overlap within the community. How many followers do each of the 43.9% have that are associated with diabetes in one form or another? How many impressions from the other 56.1% were made on people living with or associated by diabetes? It’s difficult to truly parse out where the venn diagram sits, but I think it’s safe to say the diabetes community came strong with their effort to spread the word. This does leave me with some bigger questions to consider for 2016: How might we increase the number of people sharing #sparearose that aren’t immediately associated with diabetes? Should that ratio always favor the diabetes community? How might the appeal of Spare a Rose better resonate with people without diabetes?

(2.) I tried to see what kind of activity was generated around tweets featuring the word ‘donate’ and ‘insulin’ as those are the two biggest subjects related to the Spare a Rose campaign. Every tweet including the word donate included a link to sparearose.org or the subsequent donation page. Similarly, 93% of links including the word insulin included a link to one of those two pages. It makes sense, right? If we’re going to ask people to donate, we need to show them where to go. If we’re going to appeal to the life-saving insulin #sparearose provides, we need to include a link to show people where to go. Looking past the percentages, however, reveals something quite curious. There were over twice as many (2.3x) tweets featuring the word insulin as there were the word donate. What would the final fundraising totals look like if more tweets mentioned the fact that one of the goals of #sparearose is to collect donations? Something to think about, perhaps.

One other stat I noticed was that of all the #sparearose tweets, 67% of the ones that were recorded were Retweets. I wonder what this data would show if more communication about #sparearose was original thought rather than rebroadcasting the words of someone else. To be fair, I’m just as guilty of this as the next person. Sometimes someone else does a better job of saying what I wanted to say and rather than repurpose someone else’s thoughts and words, a simple RT is enough to get the point across.

(3.) To address this, I tried to determine what maximum follower count yielded half of the total impressions from the reporting period. And, what maximum follower count yielded half of the tweets. Where is the tipping point in the makeup of participants that best represents how much of an influence a smaller following can generate. My impressions goal was 3,536,645. Tweets was 868.

Of all the people participating in #sparearose on Twitter, participants with 19,150 or fewer followers generated a little over half of the impressions recorded – How many participants have fewer than 19,150 followers? 97%. 19,000 twitter followers isn’t realistic for most of us, so to put all of this in perspective, participants with 1,000 or fewer followers generated 3% of the total impressions recorded. A single tweet from Crystal Bowersox makes a huge difference in terms of exposure.

Of all the people participating in #sparearose on Twitter, participants with 945 or fewer followers sent a little over half of the tweets during the reporting period. So, most of the tweets came from people with less than 945 followers, but they generated less than 3% of the impressions? My thoughts on this lead into the final question.

(4.) Do small voices matter? Unfortunately I can’t report on how many links were clicked, whose tweets generated the most clicks to sparearose.org. Crystal Bowersox understands the value of a vial of insulin, but do her 60,000 followers? But, for someone with 150 followers, how many of them are going to acknowledge and engage with a donation ask? It feels cold making all of this a numbers game, but the numbers fascinate me. Is there a point where you have too many followers to trust that any significant percentage will engage with a fundraising ask? How likely will followers outside of the diabetes community donate? Should we, all of us, try to cultivate a following outside of the diabetes community in addition to the relationships we build up among the pancreatically-challenged? Is it a matter of making the right ask or the right number of asks?

So we’re clear, I don’t think it’s the responsibility of the entire diabetes community to think about the nuts and bolts of how all this works. What matters most is the passion to connect with others and help educate whoever will listen to the reality that a little can mean a lot to a child with diabetes. Thanks to people like Kerri, we can make a difference. Even if the numbers from Symplur may suggest otherwise, believe me when I tell you that every voice does matter. Every one of you reading this, telling your story, paving the way for someone else with diabetes to feel safe enough to join our crazy little group, all of us are making a difference.

Empathy and Diabetes.

An example of Cards for Humanity, T1D edition. #makehealth

A photo posted by Kerri Sparling (@sixuntilme) on

This is the card one person at the meeting pulled. When their alarm went off, they got up out of their seat and dropped to the floor. Immediately, someone else sprang into action.

I watched from a distance while Michael drew up the glucagon injection and, with fumbling hands, injected it into the simulated “skin,” aka the rubber ball.

Michael’s reaction to having to following this exercise:

And this is what playing Cards FOR Humanity looked like at the meeting I attended this week.

Introducing "Cards FOR Humanity" at this #makehealth event, driving T1D empathy. #proudtobepart

A photo posted by Kerri Sparling (@sixuntilme) on

For the last few months, I’ve been part of a design team for type 1 diabetes  (put together by the T1D Exchange and C3N – the disclosure is that I have been compensated for my time), and the team I am on decided that part of truly understanding diabetes means walking the walk.  It means understanding the subtleties and nuances of diabetes. 

It’s empathy.

“Empathy is the experience of understanding another person’s condition from their perspective. You place yourself in their shoes and feel what they are feeling. Empathy is known to increase prosocial (helping) behaviors.” – from Psychology Today

To make an attempt at helping people better understand diabetes – helping them empathize – we created a card game of sorts. Based loosely on “Cards Against Humanity,” we took that concept for a spin and created a deck of cards with scenarios and accompanying questions to walk someone through a moment in a life with type 1 diabetes.

#empathyordie #makehealth

A photo posted by Kerri Sparling (@sixuntilme) on

#makehealth #empathyordie

A photo posted by Kerri Sparling (@sixuntilme) on

#makehealth #empathyordie

A photo posted by Kerri Sparling (@sixuntilme) on

The discussions that grew from these cards was inspiring, and these discussions gave rise to new levels of understanding and innovation, simply because people in the room who didn’t have diabetes identified more with the people who did.

There’s no way to properly simulate “a day in the life with diabetes,” but a glimpse can be provided, and from that understanding, innovation will rise.

To download a free PDF of the discussion cards, visit Cards For Humanity.

Unraveling the UnConference.

Thanks to the vision, dedication, and determination of Christel Aprigliano, the first Diabetes UnConference came together in Las Vegas last weekend.

“Wait, what?  I didn’t see anything on Twitter or Facebook!”

And that’s because there was a social media blackout on the whole conference during the actual course of it.  No live-Tweeting, no live-blogging, no live-streaming.

As my daughter used to say: “nuffin.”

Which is something I admittedly didn’t agree with, at first.

I always view conferences, both professional ones like the American Diabetes Association Scientific Sessions and the more community-based ones like TCOYD and JDRF‘s TypeOneNation, as an enormous privilege to attend.  Travel, lodging, and time for conferences can be a huge barrier to attendance, and as someone who has had channels of support that make it possible for me to attend a lot of meetings throughout the year, I feel like it’s part of my “job” to report back on how things went.  And not in a wicked journalistic sense (because my tendency to curse remains what it is and sometimes I don’t take fastidious notes but instead drink copious amounts of coffee), but in a man-on-the-scene sort of sense, trying to help fill in some of the blanks for people who aren’t able to make that particular meeting.  It’s not right that everyone can’t be everywhere they’d like to be, and the diabetes community is good about paying things forward.

[And yes, this is where my disclosure comes in.  In an effort to open up more of Christel's conference budget for crucial things like scholarships, etc., Animas was asked to sponsor my attendance as a facilitator, and they thankfully jumped on board.  I'm grateful for my personal and professional relationship with Animas and the support they have shown to me and to the diabetes community as a whole over the past five years.  For more on my relationship with the company, you can read my disclosures.]

But having a social media blackout was a good thing for the UnConference, even though it kept the conference closed.  Why was that good?  Because there was a lot of vulnerability at this conference, and it wasn’t on display for people to comment on, or document, or send out to a slew of social media followers.  Some folks in attendance were meeting fellow people with diabetes for the first time ever, and others were reconnecting and enjoying established relationships.  People talked about how diabetes affected their lives, and the things that made them feel a slate of emotions – guilty, triumphant, and all the ones in between.  To let the discussion flow without feeling the need to document it was a nice change of pace, and personally kept me in the moment.

Which was helpful, because attendees didn’t share all their “sames.”  It wasn’t an exercise in group-think, where people all said they reacted similarly to diabetes scenarios.

For example, when we were talking about burnout, many people shared their personal experiences with diabetes-related burnout, and others said that they haven’t ever experienced burnout.  I thought that was a powerful moment, because while there might be majority opinions on certain topics, the whole point of the diabetes community is that we are strong in what unites us as well as what makes us different.  One size doesn’t fit all, and neither does one emotional response.  I loved these moments because they woke me up and reminded me of the diversity of our experiences.

While I wish there could have been more people in the actual room, I know that access to conferences like this will come in time.  To that same end, half of the people in attendance were people I hadn’t met before.  It wasn’t the “same crew,” which I thought was powerful and helped shake up some of the “same scene, same people” vibe that has a tendency to dominate at a lot of diabetes conferences.  But what really resonated for me is that people felt comfortable and confident during these discussions, and I think the social media “blackout” contributed to that comfort.  Scrutiny was at a minimum and people could concentrate on being present.

Which is why, at the end of the conference when we were asked to write one word on a 3×5 to describe how we felt about the sessions, the word I wrote was “heard.”

Blog posts about this UnConference might be scarce, but to me that scarcity makes sense.  It was about sharing in the moment, not recapping after the fact.  Maybe, for once, what happens in Vegas stays there in specifics and instead makes it back into the community in the form of increased discussion, support, and connection.

 

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