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Posts from the ‘Psychosocial Support’ Category

Slackadaisical.

Self-tracking isn’t limited to the number of steps I take in a day or mapping out the data of my blood sugar trends. In my life, tracking emotional health is important, as it influences my physical health. Yeah, even if I try to pretend it doesn’t.

Gripper socks are those socks that have the little bits of plastic on the bottom, designed to keep you from slipping and falling on your face. They help you gain your footing when you need it most.

Playing that metaphor out from a diabetes perspective, there are some things I do to keep from doing a horrible faceplant into apathy (which leads to less-than-optimal diabetes management, for me). Kind of like gripper socks for self-management, giving me traction instead of sending me into a free-fall of slackadaisical not-giving-a-shit.

This video is about recognizing my own apathy signs and signals and making attempts to wrangle them back under control.

Gripper socks!

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.

 

Practice Turkey.

Chris and I are both from big families with piles of aunts and uncles and cousins at every birthday party.  Part of being part of a flurry of people means big holiday gatherings, and Chris and I are prepping ourselves to start hosting some of the holidays.

Problem is, I’m a terrible cook.  Or, better stated:  an inexperienced cook.  Cooking hasn’t ever brought me joy or satisfaction, and I’m not interested in the time it takes to perfect a recipe.  I cook for form and functionality (read: make sure my family doesn’t survive on garlic salt and overripe bananas), not for fun.  I’m not good at making the effort to learn.

But if we want to start hosting holidays, we need to learn how to prepare some of the main courses.  Which brings me to the Practice Turkey:

Practice Turkey is currently taking up residence in our freezer, and my goal is to use him to teach myself how to properly prepare a whole turkey.  (Sidebar:  Animal is in our freezer because Birdy is afraid of him, but refuses to let us donate him or throw him out.  She wants him in the house, but entirely contained.  So he lives in our freezer and has been there about a year.  I always forget that he’s in there, until someone comes over to visit, opens the freezer, and subsequently goes, “OOH!!”) In the next week, my plan is to practice my culinary witchcraft on Practice Turkey so that when we host holidays this year, I’m not in a huge panic because I can be all, “Oh, the turkey?  I know how to do that.  I’m all over that!”

I need to actually do it in order to make sure I can do it.

Same goes for technology hiccups in my diabetes management plan.  I use an insulin pump and a CGM (hellooooo, disclosures), and with that convenience and data comes an influx of autonomy and the sacrifice of my autonomy, if that makes sense.  The devices give me a lot of flexibility and freedom, but if I rely on them too heavily, I forget how to manage my diabetes on my own.

I need to be my own Practice Turkey, relearning the details of diabetes.  I need to make sure I know how to calculate a bolus, check my blood sugar regularly by finger prick, and finagle basal insulin doses if my pump ever breaks, or if I ever want to take a CGM break, or if my will to wear devices breaks a little.  And over the last week, I’ve been on a bit of a device break (thank you, winter skin issues), realizing once again that a refresher course on how to drive the stick-shift version of my diabetes (so to speak) helps me take better care of myself overall.  Taking an injection before I eat makes me think twice about the food I’m putting into my body, and also help me remember to pre-bolus (because it’s a process, not just the push of a button).  Using the treadmill instead of a correction bolus to fix a 180 mg/dL keeps exercise fresh in my mind.  3 am checks aren’t always necessary, but doing a few of them helps me spot-check my overnight basal rates.  I appreciate my devices, but I needed a reminder on what they do for me, and how to continue to do for myself.

Practice (turkey) makes perfect.

[Also, today has been unofficially designated as a “day to check in” (hat tip to Chris Snider) with the DOC blogs that we’re reading.  I read a lot of diabetes blogs, but I don’t often comment because I usually want to say something meaningful, instead of “I like your post.”  (But I do like your post!)  But instead of finding that meaningful comment, I usually roll on and forget to return to comment.  NOT TODAY!  Today I’m commenting on every blog I read, because that’s the name of the game.  I love this community, and today I’ll show that through comments.  So please – if you’re here, share what your favorite word is, or just say hello.  And thanks for being here.]

Old School Blogging.

Over the weekend, I saw a post from Stephen with the meme in it and felt this moment of, “Oh hell yes.  Something fun and kind of mindless that doesn’t involve being on a soapbox.  Want.”  So I did the meme post and it felt fun.  Like I didn’t give a shit and wanted to write something for the sake of the fun and connection of it, not to say something Important.

Reminded me of old school blogging.  I started writing online in May 2005 and back then, there weren’t a lot of people reading so it was kind of a don’t-give-a-shit-free-for-all.  Write whatever you want.  Don’t even spell check it HA HA you REBEL.  (But then go back and spell check it immediately, also giving it a grammar once-over because I am a lifelong English major.  In related news, never end a sentence with a preposition because it will give you forever-hives.)  Get to know your peers without self-editing and self-imposed deadlines and self-consciousness.

I don’t know what’s happened to my voice in the last year or two, but it’s harder and harder to write some days.

“Is it writer’s block?” asked Chris.

“Kind of.  But it’s more like rehashing the same topic all the time and while there’s always something new to say because diabetes is that way, sometimes I don’t want to talk about it at all.  Keeping my head straight while managing the disease itself doesn’t always leave room for editorial.  Sometimes the best way for me to deal with some diabetes stuff is to work it out privately, you know?”

It’s hard to share things as I’ve grown older.  I stopped sharing photos of my daughter (and have never shared her name) on this website because I wanted to protect her privacy, but after a while, I realized I wanted to protect some of my own privacy, too.  I chronicled my engagement and wedding and move from RI to CT (and back again, all Hobbit-style) and pregnancy and, and, and … and now I’m not sure what I want to share, but diabetes-wise, I’m more and more inclined to share less.

Logging on to write about a wicked low blood sugar, for me, is an easier story to share because it’s encapsulated in that moment of the low.  Writing about how it feels and what I did to treat it is therapeutic.  But it’s a little more challenging to write about the aftermath of lows like that; telling the story of how fears of hypoglycemia permeate so much of what I do takes longer to tell.  Do I write about how I have trouble going to sleep for weeks after a bad low, because I think about how morning might be a stretch to reach? Do I even want my brain to take that journey?

Nope.  Sometimes that answer can be a big, fat nope.  Writing about that stuff is a complete fuckery of my mind.  While I have been grateful, at times, for the ten years of archived writing here on my website because it can be good for me to see how far I’ve come, other times I am a little bummed out that ten years of writing about diabetes could easily turn into twenty (but maybe not fifty because What If and that’s the shit that makes my head spinnish).  It’s been a really short and simultaneously loooong ten years of blogging, and the same goes for 28 years with diabetes.

I miss the old school blogging, quite a bit.  I miss the small community feel that used to be in play, where people wrote in hopes of connecting instead of being “seen.”  (I’m not sure that makes sense written out as it feels in my heart, but I’m resolved to not delete anything from this post, kind of proving a point to myself that I can write without considering consequence.)  I appreciate all of the new information being posted and the innovation and reporting that’s taking place but I miss the people themselves.  I don’t give a shit about bylines.  I care about people.  The people are still there and sharing, but there’s a lot of Agenda permeating the community and I kind of miss when it felt more organic and PERSONAL damn it and a little less structured.  I, personally, am losing a bit of my grip on what motivated me to blog in the first place.  I want to return to the real “why,” which was to find community and make the journey with diabetes suck less.

So what’s the point?  The point is that I liked writing that post this weekend.  It’s the first time I’ve written (or at least listed) without thinking too much over the past few months.  The second time I’ve written without caring for consequence is today.  I’d like to return to that kind of blogging, for at least a while, because it feels good.  Fun is also a thing, and I want more of that.  Especially here on my website, where I’m proud have built my online nest.  Better than trying to create something “perfect.”  Perfect isn’t a thing.  Reality is, and this community has forever been rooted in reality.

The reality of life, of life with diabetes, of an imperfect life with an imperfect pancreas and an imperfect mouth that curses often but please forgive me for saying fuck so often.  It’s a curse of a curse.

Looking Back: Complications.

As I head up to the Joslin Clinic today to have my eyeballs, and my soul, looked at to make sure both are fine, I was reminded of this video from last year about diabetes-related complications.  I still stand by the sentiment that you owe it to yourself to live the best life possible, even with whatever you’ve got.

Hopefully today goes well. Either way, I’m on it.

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