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A Look at Diabetes Blog Week, With Karen!

Karen Graffeo is a talented knitter, devoted cat owner, and tireless advocate for diabetes, and I am so proud to call her a friend.  Six years ago, she launched the first Diabetes Blog Week, an effort that serves to expand the diabetes online community and embrace the beauty of diversity of voices.  Today, Karen is sharing some of the how’s and the why’s of Diabetes Blog Week here on SUM.

Kerri:  Congratulations on the sixth annual Diabetes Blog Week!!  For those who aren’t familiar with what it’s all about, can you shed some light?

Karen:  Thank you, I’m so excited to be doing this a sixth time!  Diabetes Blog Week was inspired by a similar event in the knitting blog community.  There is a set topic each day of the week, and participating bloggers write about that topic on their blog.  There is a list set up for each day and bloggers add the link to their post once they’ve published it.  Then we can all hop around the DOC blogosphere and read the different perspectives on each topic.  And, in the process, we can find some new blogs to read and make some new connections.

Kerri:  Is it tough to come up with topics every year?  Where do you draw your inspiration from?

Karen:  It does get tougher each year to think up fresh and enticing topics.  Every year has seven topics (one for each day) and two “wildcards” that bloggers can use if a certain day’s topic doesn’t inspire them.  So that’s nine topics a year, and we’re in the sixth year – yikes!!  However, in the past few years I’ve been asking bloggers to submit topic ideas and that has been a huge help and inspiration.  And since Diabetes Blog Week is for the community, putting out a call for topics seemed like a great way to get the community even more involved in DblogWeek.

Kerri:  What is your favorite part of Diabetes Blog Week?

Karen:  My favorite part is definitely all of the excitement and enthusiasm the DOC shows.  I remember back in 2010 when I held the first Diabetes Blog Week I wasn’t even sure anyone would sign up.  So I’ve always been very thankful for all of the support over the years and I’m so happy bloggers still are willing to join in.

Kerri:  What is the hardest part of Diabetes Blog Week?

Karen:  That first year, Diabetes Blog Week had 142 participants.  Although it was no small task, I was able to read and comment on almost every post written.  As of last year we had more than 200 participants and it gets harder to leave as many comments as I’d like.  It’s a good problem to have, but I definitely feel disappointed that I can’t find the time to comment on every single Diabetes Blog Week post.

Kerri:   And how can people participate this year? 

Karen:  I have put all of the information (I hope!!) and a sign up form in this year’s Diabetes Blog Week post.  Also, the topics have been posted here so bloggers can check them out and start thinking about what they want to write.  And if anyone has a question I haven’t addressed they can email me at DblogWeek@bittersweetdiabetes.com.

To sign up for Diabetes Blog Week, click on that snazzy little button there (designed by the endlessly talented Mike Lawson) and fill out the quick and easy form!  Diabetes Blog Week is an amazing way to become reacquainted with diabetes blogs you’ve been reading for years and to discover new voices to add to your support team.  Have fun!  Make friends.  Write bunches.

Thank you, Karen, for bringing us all together for a sixth year.  :)

 

Boop Beep Boop.

“Boop beep boop!”

The sound is unmistakable, as it used to ring out from my hip for so many years.  That noise, the sound of a Medtronic insulin pump alerting for whatever reason, used to be my soundtrack before Fur Elise and the “boop boop boop!” of the Animas pump replaced it.

Boop beep boop!”

I was sitting outside of the classroom where my daughter was meeting with the school administrators for her pre-kindergarten screening tests when I heard that familiar noise.  (The tests upon which I will not comment because this whole process is so strange and so involved – whatever happened to reading books and milk cartons and coloring?  In related news, I’ve become an old bird.)

Looking up, I saw a teacher walking down the hallway, casually talking to her colleague with their lunch bags in hand, her fingertips deftly and instinctively pressing the buttons on her insulin pump, administering what I assumed was a lunch bolus.

“Boop beep boop!”

Even though I’ve found so much comfort in the diabetes community and have made lifelong friends who are funny, kind, and also happen to not make their own insulin, I wanted to leap up and say hi to the woman in the elementary school who also wore an insulin pump.  She was here!  In my town!  Randomly!  A PWD (person with diabetes) spotting in-the-wild is always exciting.  Kind of like finding Bigfoot, only with fewer over-the-shoulder glances and more “see a birthday cake!” faces.

But instead, I sat in the folding chair and minded my own business, secretly thrilled once again by the knowledge that it only takes a quiet series of beeps and boops to remind me that I am not alone.

 

Sharps, or “Shaaaahps,” Containers.

In the last few weeks, I’ve taken some device breaks and reverted back to some of my multiple injection (MDI) ways (until skin rashes healed up, bruises started dotting up my skin landscape, and frustration with trying to draw up 1/4 of a unit of Humalog using a syringe tossed me back into DeviceLand).  It was a good break and one I needed, but I was reminded of how many sharps I can accumulate during the course of a week on MDI.

Back when I lived at home with my parents, my mom used an empty detergent bottle to throw my sharps into.  When it was full, she taped it up with duct tape and my dad disposed of it somewhere “official.” (But to be honest, I have no idea where he brought it.  The shed at my childhood home could be filled with used insulin syringes shoved into fleets of Tide bottles, for all I know.)  When I moved out and went to college, I continued the same system only I brought my full sharps containers to our local pharmacy.

These days, I don’t generate a lot of sharps and currently have a few containers that need to be disposed of (tips from Joslin on sharps disposal here), but that’s largely in part due to the fact that I rarely use syringes these days.  Even when I’m on pump vacations, I tend to use insulin pens over orange-capped syringes.  (Did anyone use one of these back in the day?  I loved this thing.  It was like a fingernail clipper for my drug paraphernalia.)  I busted out a “formal” sharps container that I had in storage for the last few years and have been using it for pen needle tips, lancets, etc.

Sharps. Or, if you're from New England: "shaaaaahps."

A photo posted by Kerri Sparling (@sixuntilme) on

It feels strange and foreign to not be shoving my sharps into a discarded laundry detergent bottle.  I feel like my sharps went all professional.  Like they wear tie clips and have board room lunches. But, at the very least, they are properly contained and will be properly disposed of and that makes me feel like I’m properly PWD’ing.
 

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.

Stream of Consciousness.

Time for a bullet list of purged thoughts, brought to you by the bottom of my coffee pot.

  • It’s not snowing.  I don’t usually have a rage response to winter, but this one has been more than we could properly manage.  (Like when our snow shovel broke under the weight of the drift we were shoveling through.  Or when our snow blower ran out of gas and the gas was in the shed out back and we couldn’t get to the shed because the show was up past our hips.  #fuckyousnow and I mean it.)  So for it to be #notsnowing and #melting is a good thing.
  • Get these hashtags off my blog. #nottwitter
  • For a solid five year period, I did not lose a single pair of gloves.  If one fell out of the car when I opened the door, I saw it immediately.  If I dropped one, it always managed to fall into my bag and not end up lost forever.  Gloves were among the most lose-able things in my wardrobe and yet they always managed to stay paired up and on hand (literally).  But this year, something happened to my glove mojo and I’ve lost four pairs this winter alone.  I don’t know how to recover my good glove karma.
  • I have bought the same pair of moonstone stud earrings a dozen different times, and yet I still only have two singular earrings.  It’s unnerving.  Do these cheap little earrings go where the gloves go?
  • This weekend, I’ll be at the Diabetes UnConference in Las Vegas, where there isn’t any snow and there are many PWD on tap to attend.  I’m looking forward to making new friends, seeing old ones, and bolusing for copious amounts of iced coffee.
  • Way to GO, mySugr!!!
  • Does emotional stress spike up your blood sugar?  Caroline dives in to find out.  (But the answer is yes.  A firm and confidence yes.)
  • Did you guys see that the Spare a Rose totals have been boosted, thanks to a donation program from Asante426 lives saved, thanks to all of you.
  • Thanks to #dblogcheck day, I found some gluten-free lemon bars on this blog.  And now I love this blog.
  • At the Rhode Island JDRF TypOneNation event last weekend, I heard about a new sort of barrier tape to put underneath my Dexcom sensors to help mitigate the wicked rash.  It’s called Mepitac tape and I bought my first roll off of Amazon this morning.  I have no idea if it will work better/worse than the J&J Toughpads I have been using for the last three years, but I’ll try anything to keep the itch at bay.  Will report back after I give it a go.
  • Ripped from DHF’s site:  “The Diabetes Hands Foundation is happy and excited to offer scholarships to diabetes conferences as a part of the Diabetes Advocates program. We offer these scholarships to help get advocates to the major conferences in the US so the patient voice is present.”  You can find out more about the scholarships here, and then you should APPLY because your voice MATTERS.  All caps and such.
  • My friend Jenni Prokopy (the ChronicBabe) kicks ass, and I want her to continue to kick ass.  Check out her kick(ass)starter here.
  • I keep circling back to this David Sedaris essay about his FitBit because I am in a hardcore week of competition with an equally-competitive friend on FitBit, and I’m afraid I may wear holes in the soles of my soul in efforts to win.
  • But as I write this, I’m already itching to get up and clock a few miles on the treadmill in an attempt to gain some ground before traveling this afternoon.
  • In related news, I am relentlessly competitive.
  • And with that, I need to go run.
  • While I’m gone, the cats will guard the door like little, furry sentinels.


Guards.

A photo posted by Kerri Sparling (@sixuntilme) on

 

 

It’s a Good Tune.

“BEEEEP … BEEEEP… BEEEEP!”

“Mom, your Dexcom is making noise,” my daughter says casually, as we’re kicking the soccer ball around in the basement (because we’ll never, ever go outside again because snow).

“It is. Hang on a second,” I told her. A click shows that my blood sugar is over my high threshold, with a few yellow dots taking up residence on my graph. I’m not totally worried, though, because a check of my pump reveals some insulin still on board. I decide to let things play out and see where I land a bit later.

“I’m fine, kiddo. Let’s keep playing.”

The Dexcom has been part of my daughter’s life for as long as she can remember. When she was very small and figuring out her letters for the first time, I remember her running a tiny fingertip along the bottom of my receiver – “D-E-X-C-O-M spells … whaasat spell, Mama?”

“Dexcom. That’s the name of the machine.”

(Unlike most kids, my daughter’s list of first words included “pump,” “Dexcom,” and “diabeedles.” Maybe she’ll grow up to be a doctor? At the very least, this knowledge base has given her a leg-up on winning a few topic-specific spelling bees.)

As Birdy grew older, she started to understand some of the information that different diabetes devices provided. We’ve talked a little bit about how three digit numbers on my glucose meter that begin with “2” most often require me to take some insulin from my pump (same goes for the ones that begin with “3,” only those also come with some curse words), and how when the Dexcom makes an alarm sound, I need to check it and take some action.

“But that alarm – the BEEEEP … BEEEEP… BEEEEP! one – is one we can ignore, right Mom?”

“Ignore?”

“Yeah. When it goes BEEEEP … BEEEEP… BEEEEP, you don’t always look at it. But when it goes like this,” she raises her hands up in front of herself, like she’s sneaking up on something, “BeepBeepBeep really fast, then you look right away and get some glucose tabs.”

Funny how much she notices, how much of my diabetes self-care ritual has become a natural part of our time together.

“Kind of. The long beeps mean my blood sugar might be higher, but it’s not an emergency. The short beeps mean I have low blood sugar, and I need to get something to eat so it doesn’t become a big deal. Does that make sense?”

“Yeah.”

The sounds of the low and high alarms ringing out from my Dexcom receiver have become familiar, like a subtle (and sometimes not-so-subtle) soundtrack for my diabetes life, but I didn’t realize until recently that they are also sounds that remind my daughter of her mother.

The other morning, I heard Birdy walking into the bathroom to brush her teeth, and she was humming a little tune to herself, one that I recognized.

“Hey you. Are you singing a song?”

“Yeah. It’s the Dexcom beep song. It’s a good tune.” She grinned at me, toothbrush hanging out of her mouth.

That Escalated Quickly.

After downloading and uploading and reloading all my device data to Diasend, I’ve seen the Big Picture, and it kind of blows.

For a good, long clip, things have been completely fine.  In range most of the time, not too many gross lows, and highs were classified as an extended 180 mg/dL, with symptoms to boot.  Well done!  Diabetes on point!  Celebrate by shoveling snow!

But a hiccup here and there have given way to a slippery slope of fuckery.  My two week average a month ago was fine.  My two week average yesterday was gross and not at all where I want it (and know I can have it).

I’m glad I’ve looked at my data, because I’m not sure I would have noticed just how dodgy things had become.  (And a quiet but still curmudgeonish thank you to the need for a flurry of paperwork in order to get my new insulin pump through insurance approval, forcing me to provide blood sugar logs and other data points in order to convince my insurance company that yes, I do have type 1 diabetes.)

I didn’t realize how much higher my two week average had become until I looked at it and recognized the need for change.  Two weeks for me makes a big difference, because it’s in that time frame where I make crappy tendencies into crappy habits.  Ignoring high alarms is okay for a day, but not for a week.  Forgetting to pre-bolus can roll by a few times but more than that equals out to crummy postprandials.  Carby food choices that are lackadaisically carb-counted brings on the blood sugar roller coaster.

Eff that noise.

Time to deescalate this.  Quickly.  Before it becomes as piled on as the three foot mound of snow on the back deck.

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