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Posts from the ‘Real Life Diabetes’ Category

Plug It In.

I’m not a good traveler, but I am a good packer. Part of my preparation ritual is to make sure I only bring what I need and that outfits are tried on and coordinated before I go. (Because there was that one time I brought a shirt and forgot pants and that made for a different sort of panic before a presentation.)

Thinking ahead helps me prevent over-packing. (I have made a rule about not checking baggage, ever, if I can help it.) So before I left for a business trip on Thursday afternoon, my house was a brief flurry of coat hangers, dresses, and shoes. I tried on four or five different things before chucking them into my suitcase (who am I kidding – I military roll everything so it fits) and then it was time to get ready to leave the house.

It took me almost an hour to realize that, in my frenetic fashion show, I had my pump clipped to my hip but not connected to my infusion set. It wasn’t until I heard the Dexcom alarm let loose with the HIGH ALARM! that I realized my tubing was wagging like a tail. Disconnected from my body. Leaving me on an unintentional insulin hiatus.

So many variables influence my blood sugars – exercise! Insulin levels! Food! Stress! Exclamation points!

But sometimes it’s as simple as remembering to plug shit in.

Dexcom SHARE: First Impressions.

“Your thing is going off.”

Though nondescript, that phrase is a loaded one.  It is Chris-speak for, “Your Dexcom is making an alarm of some kind; you need to take a look at it.”  And now that the Dexcom SHARE application is feeding my glucose results to my husband and a few other authorized viewers, when the thing goes off, other things go off and people are notified.

And by way of notification, I’m disclosing right here and now that I have a relationship with Dexcom.  It’s kind of serious, and I look forward to when they meet my dad.  Details here.

I’ve been using the Share for a few weeks, and have had some time to give it a good once-over.  My take on the SHARE 2 application itself:

  • Overall, my data transmits pretty seamlessly from the receiver to the phone, but there have been weird times when the data just stops.  (When I’m on a plane, this makes sense.  When I’m at my kitchen table, it does not.)
  • Essentially, that means I am poking this fine little fella in the face several times a week, to help jump start whatever is borked in transmission.  If he were less cute, I wouldn’t feel so bad about jamming my index finger into his jaw.
  • It feels weird to have to put my password into the app in order to access the “followers” screen.  Why protect that specific screen, but not the others?
  • I thought having the option to only add five followers would feel limiting, but in fact, the ability to share my CGM data has not made me want to broadcast my stuff to the world.  Five followers is fine so far; right now, I have my husband, a close friend, a doctor-who-is-not-my-doctor-but-we-are-trying-something-out-for-the-sake-of-SCIENCE, and myself.  And yes, I have added myself because I wanted to be able to access my data alongside the data of those who I am following when I go into the Follow app.
  • (Does any of that make sense?  Let me know if it does not.)
  • Also, iOS only?  Frustrating because anyone who is not using an iOS device can’t be added to my network.
  • The alarms that are issued through the phone are wicked loud, and very useful.  I recommended that Chris keep my high alarms off and only receive notifications for hypoglycemia, which is working out reasonably well.  (Especially when I am traveling, and can respond to his, “Eat something,” texts with a quick, “Already did.”)
  • The application doesn’t seem to eat up my battery life on my phone or on my receiver, which I appreciate.  I feel like the Share receiver holds battery life better than my previous receiver.  I charge it once a week and even then, it’s not drained.
  • I forget that the application is on and working because 85% of the time, it’s on and working.  I rarely switch it off because it doesn’t impact my battery life (or actual life) much to keep it on.  Except when it becomes emotionally charged, which is a whole different point and one I tackle a bit further down.
  • Using the receiver that’s Bluetooth enabled versus the dock you had to plug into the wall is obviously an upgrade, and contributes to ease of use.  Also, it’s easier to pack.  And harder to forget.

And my take on sharing, in general, with this application:

  • Sharing data is personal.  Wicked personal.  And it’s a choice, one I’m grateful I can make.  Again, I can’t rework my islet cells, but I can decide what devices and treatments I use to manage this disease.
  • And sharing makes me feel a little ashamed, at times.  I can reason as to why it should NOT, but it’s a reasoning I find difficult to follow through on.  Keeping my blood sugar data devoid of emotional valuation is difficult for me.  I was raised on “good” and “bad” blood sugars, not “in range” and “out of range,” and seeing a graph that pings and pongs all over the place makes me feel weird emotionally as well as physically.
  • For example, two weeks ago I had a urinary tract infection (much like this epic one).  It was nasty, and both the infection and the antibiotics for it sent my blood sugars into the stratosphere.  This glucose saturation was sent up to the cloud and pinged out to the people I trust.  None of them knew I had an infection, but I felt the need to say something about said infection so they’d understand why my numbers had gone bananas.  I felt good about having people I trusted so much that I knew they wouldn’t judge me, but at the exact same time, I felt the need to explain myself.  My knee jerk response of justification kind of flies in the face of the security and trust.  And it’s not because of them or how they judge me, but because of me and how I judge me.
  • Same goes for the following week, when I was on another medication (everything is fine, by the way – just a flurry of things all at once) that caused wicked blood sugar spikes.  We’re talking HIGH with arrows still pointing up.  I took a bolus that put every other bolus I’ve ever taken to shame.  And after a few hours, I mentioned this medication to those with access to my data because I felt the need to explain the numbers.
  • Which opens up my “what the fuck” mental folder, where emotional responses to diabetes end up filed.  On the one hand, I really like having a loved one or two able to see my data because that their access offers up a safety net I’m very grateful for (and have written about several times).  Also on that hand is the accountability that works to my benefit.  As I told my friend who has access to my CGM data, the commiseration angle is empowering because it makes me want to rein things in faster than if I was the only one looking.  Blood sugars on display are ones I watch more carefully, for whatever reason.
  • But on the other hand is my desire to turn off the data sharing because I want to let my blood sugars stutter and splutter without scrutiny.  I want to fail, or do what I perceive as failing, in private.  Sometimes I want to leave the Sharing option on only throughout the nighttime hours, or exclusively when I’m traveling, so I can keep a foothold on my dignity.  Not that my numbers are shit all the time, but the past two weeks have been tough even for me to see, and I’m familiar with my own bounce.  (And there I go again, explaining away the things that make me feel ashamed.  This is part of the fuckery, because my management does not come easily to me, and I try every single day to work these blood sugars out.  I test and exercise and track and eat well and truly make efforts and yet blood sugars bounce.  I can blame diabetes, but since the due diligence list is so long, there’s always something I can look at and blame myself for.  Which is a fun dance.)
  • Have I mentioned that sharing data is personal?  Let’s go back to that for a second, because it is.  And the level of sharing that works for me on days when my blood sugar is 94 mg/dL and holding steady is very different than when I’m riding out a 287 mg/dL for three hours.

I’ve made no secret of the fact that I appreciate options, and the option to Share is one I’m happy to have.  Coming full circle, I can choose to share or not share.  I can also turn off accessibility to others with the click of a button.  Honestly, I am grateful that I have a network of people I trust with this kind of personal data because it’s some soul-baring kind of shit.  And as an adult, I can decide how these data are dealt with because they are mine.

Maybe, with time, I’ll stop viewing these data as little dots of validation and instead as information to help me live better.

 

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.

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?

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