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Egg Roll.

The trappings of Easter baskets can be a real kick in the ass for me, diabetes-wise.  Jellybeans, chocolate eggs, those Cadbury mini eggs of doom … all delicious, but rarely worth it for me because all of these high-sugar indulgences make for gross blood sugars.

Thankfully, the most mild of milds on my blood sugars are eggs.  And Easter isn’t short on eggs of the hard-boiled and highly decorative type.

Eastaaaaah.

A photo posted by Kerri Sparling (@sixuntilme) on

“Do you want a jellybean, Mom?”

“No thank you.”

“But you can take insulin for the jellybean?”  My daughter paused a minute.  “OOOH! Or you could have a hard boiled eggie instead!” And she’s fine with that suggestion, only faltering slightly when she sees that the egg dye leaked through the shell a bit during the coloring process, tie-dying the hard-boiled egg white.

“Does the color part need insulin?” she asks.

Learning about diabetes, egg by egg, bird by bird.

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.

Looking Back: Visual Reminders.

Nothing helps remind me more about the importance of being familiar with serving sizes and what they look like than being on the road for a few days.  Meals away from the comfort and familiarity of my kitchen make for some guesswork, and these last few days have shown me that I could use a refresher on serving sizes.  Here’s a look back at a post from 2012 about keeping your eye trained as to how “half a cup” really shapes up.

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A deck of cards.  A baseball.  A pair of dice and you only look at one of them. (Sorry for the clumsiness; I think it’s weird to write “A die.” as a sentence.  Looks odd.)  A tennis ball.   A hockey puck.

The things that health-related articles use as “visual cues” for portion sizes and serving sizes makes me wish I was more athletic, because then I’d have a really strong feel for the size of these different balls, etc.  (Sidenote:  Hey. Ever write something you want to immediately delete but then you keep it and just wish your brain was less daft?)  But these visual cue things are helpful for me, because if I don’t take note of just how big “one small apple” really is, it’s easy to lose track of how much I’m eating.  I need to constantly refresh my eyes on serving sizes, which in turn helps me better estimate carbs when I’m SWAG (aka Scientific, Wild-Ass Guessing)’ing it.

(Second sidenote:  The hamburger pictured here looks exactly like a fudge-drizzled chocolate cookie, which is making my brain very confused.)

Which is what I spent part of my morning doing today:  busting out the measuring cups in my house and reminding myself what certain foods look like when properly measured out.  I’m not shooting for serving sizes or anything FDA official.  I needed to do this purely for carb assessment reasons.  What does 35 grams worth of Rice Chex measure out to look like?  How much salad dressing is 10 grams of carbs?  Brain, be reminded of what 28 carbs-worth of banana goodness looks like!!

Birdy thought I was a basketcase this morning, measuring things out and then putting them back.  “No eat banana, Mama?”  “No more cereal and milk, Mama?”  “That chicken is very good, right, Mama?” By the time I started eye-balling the lunch meat and measuring it on our kitchen scale, she threw her hands up in disgust and went to find her Thomas trains.  (Tertiary sidenote:  Spencer, the silver, streamlined diesel train, is the same size as 15 grams worth of banana, dagnabit.)

But now my brain is brought back to reality.  Less guesstimating and more true and proper estimating, which should help me fine-tune my boluses a touch.  Reminders like this are helpful in keeping me from sliding down that slippery slope of eating 18 lb apples and bathtubs full of Golden Grahams.

(Last sidenote:  I’m sorry that only 2/3 of this post made sense.)

 

Stress!!!! and Diabetes.

Do your blood sugars respond to food?  Of course.  How about to insulin?  And exercise?  A big “hell yes” to those, too.  Food, insulin, and exercise have tangible influence on my blood sugar levels.  But one influencer that I don’t often take into account is stress … which is a ridiculous variable for me to ignore because stress can make my blood sugars leap over tall basal rates in a single bound.

Oh look – a video!

How does stress change the mapping of your blood sugars?

The Last Straw.

“Mommy … I had a nightmare.”

She shows up in the middle of the night sometimes, evicted from her warm bed down the hall due to a nightmare.  “I had a dream about a blue monster with no arms and popcorn on his feet.”  She’s clutching her blanket, her water, a flashlight, and a stuffed animal; clearly she’s in for the long haul.

I moved over in the bed and she started to climb in.

“Oh and mom?  You’re low,” she said, handing me the vibrating pump.

The fog of feeling sleep lifted immediately and I recognized the symptoms of this hypo.  Sweaty hairline, fumbling fingers, my sight reduced to a tunnel, and my hearing razor-sharp, hearing the shuffle of my daughter’s feet, the steady breathing of my sleeping husband, and – finally – the buzzing buzzery of my CGM alarm.

“Do you need something?” Chris asked from beside me.

“Yeah – can you grab one of those juice boxes from the shelf?”

Birdy was already snuggled in beside me, nestled close against my hypo-damp shoulder.  A few seconds later, Chris returned with a juice box in hand.

Habit, habit, habit – I am a creature of it.  When my blood sugar is low, I go through the motions to treat it, and if anything gaffs up the routine, I’m thrown.  Lows in hotel rooms rock me because the bedside table is five inches farther from me than at home.  When I am home, having the glucose tabs on the table itself instead of in the drawer can be enough to confuse me thoroughly.  (Lows make me the least-sharp knife in the drawer.)  In this case, I grabbed the juice box firmly and reflexively used my other hand to reach for the little plastic sleeve with the straw tucked inside.  Only I grabbed it a little too firmly and juice shot out all over the bed, because my forward-thinking husband had already stuck the straw inside the foil hole.

“Shit …”  My pillow was wet with juice.  And so was my daughter, because I managed to (ocean?)-spray her in the face during this transaction.  “I didn’t know the straw was already in there.”

“Do you need another juice box?”

“No, this should be okay.  Only a little bit flew out.”  I drank the rest of the juice box, per routine.

“MOM. This is not OKAY.  I am all WET.”  (Even at 3 am, my kid can be indignant.)

“Sorry, baby.  You can go back to your own bed, if you want?  That bed doesn’t have juice in it.”

She thought for a minute, then buried her head under the blankets to issue a muffled response.  “No WAY.  The monster had popcorn feet.  NO WAY am I going back to my bed.”

 

 

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