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Posts from the ‘Diabetes and Emotions’ 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!

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?

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.

 

Earned.

This morning, the Joslin Clinic shared a photo of Dr. C Kenneth Gorman, who was awarded the Lifetime Achievement Award for living 80 years with type 1 diabetes.  He’s one of five people to have received the medal, and the first Canadian (eh?).

Here is this wonderful man, medal and all:

joslin medalist

[From the Joslin Diabetes Clinic Facebook page]

Dr. Gorman redefines what it means to “earn” a medal, in my eyes.  Thank you, Joslin, for letting us know about Dr. Gorman and to Dr. Gorman for inspiring me to keep working towards my 80 year medal.


Happy Birthday, Dr. Seuss!

Happy birthday to Dr. Seuss!  He’s always been one of my favorite writers to read, recite, and then parody as needed.  In homage to the good doctor on his birthday, I’m revisiting a poem I wrote called A Human’s Resilient, One Hundred Percent! Because we are resilient, damn it.

*   *   *

Sighed Panky, a lazy panc deep in the gut
“I’m tired and I’m bored
And I’m stuck in a rut
From making, just making insulin every day.
It’s work! How I hate it!
I’d much rather play!
I’d take a vacation, or a long nap
If I could find someone to do all this crap!

If I could find someone, I’d kick back and chill …”

Then Panky thought, “Could Kerri be up for the thrill?”

“Hello!” called the lazy panc, smiling her best,
“You’ve nothing to do.  Does this sound too strange …
Would you like do the work I do for a change?”

Kerri laughed.
“Why of all silly things?
I haven’t islets or enzymes or things.
ME do your job?  Why that doesn’t make sense!
Your job is make insulin!  The thought makes me tense.”

“Tut, tut,” answered Panky.  “I know you’re not me
But I know you can do this.  Won’t you hear my plea?
Just pick up that needle and draw up the dose.
Once insulin’s flowing you won’t feel morose.”

“I can’t,” said the Kerri.
“PL-E-ASE!!” begged her panc.
“It won’t be too hard, kid.  Sorry to pull rank.
But I’m leaving regardless if you raise your voice.”

“You’re a jerkface,” said Kerri.  “Not to give me a choice.

I’m unsure how to do this. Details are the devils!
How do I keep steady my blood sugar levels?
What do I do? Can you leave me instructed?”

“You’ll figure it out,” and the panc self-destructed.

“The first thing to do,” murmured Kerri,
“Let’s see.
The first thing to do is to prop up this Me
And to make ME much stronger.  This has to be done
Because diabetes can weigh an emotional ton.”

So carefully,
Hopefully,
She searched, unimpeded
For the resources, tools, and support that she needed.

“I know that there’s life found after diagnosis.
It’s good and it’s worth it. That’s the prognosis.
I meant what I said
And I said what I meant …
A human’s resilient,
One hundred percent!”

Then Kerri, with peers and insulin by her side,
Well she tried
and she tried
and she tried
and she tried.

She kept at it for decades
Despite feeling perplexed.
It requires work one day,
Again on the next.
It sucks! Then it doesn’t!
But Kerri remained sure,
“My life’s worth this effort,
(Though I’d still love a cure.)
I wish Panky’d come back
‘Cause some days I’m so burnt.
I hope that my body thrives on the things that I’ve learnt.”

But Panky, by this time, was far beyond near,
And was dormant for good now. Diabetes was here
And was staying, so Kerri, for better or worse,
Had a pump on her hip, glucose tabs in her purse.

Diabetes is constant, day after day.
But the life in its wake is still good, plenty yay.
And even on days when the Stuff is Way Blah,
Life with disease is not life without Awe.
“It’s not always easy. Diabetes might test me.
But I’ll stay on task and I won’t let it best me.
I meant what I said
And I said what I meant …
A human’s resilient
One hundred percent!”

Some days it is simple. Some months are real hard.
Diabetes is something you can’t disregard.
But a panc on vacation doesn’t mean that you’re broken.
“You can still do this.”

Truer words never spoken.

 

[With apologies and thanks to Dr. Seuss,  this is in homage to Horton Hatches the Egg.]

Let Loose.

(Is it okay to let loose with a stream of consciousness sort of thing today?  I hope so.  My mind isn’t capable of anything else at the moment.)

I’ve been thinking quite a bit about the diabetes community.  So much has changed since the Internet started to populate with patient stories.  I don’t mean that in a “oh, the industry!” sort of sense, but more that the concept of “I am not alone with diabetes” has gone from hopeful to factual over the last decade.  I love the diabetes community.  After such a long gap between camp and finding online support, I appreciate the friendships – real and true – I’ve forged over the last decade.  To go full Jerry McGuire on the whole mess, they complete me.  I even appreciate the people I find prickly to a certain extent, because my interactions with people I don’t get along with help me grow as a person.

My feelings about the community are a weird contrast against diabetes itself, because the disease is not something I love.  I don’t appreciate it.  I don’t view it as a gift.  I view it as a disease.  So it’s a strange hybrid feeling to be so taken with a group of people anchored around a disease I would give back in a heartbeat.

(Oh hell yes, I’m in that kind of hug-everything mood today.  Wait until I cut-and-paste blooming violets and rainbows and doughnut rain up in this blog post.  It’s a combination of jet lag and hypoglycemia.)

By contrast, I haven’t wanted to share so much online these days.  I thought I was hitting a pocket of diabetes burnout a few weeks ago, but then I realized my blood sugars were fine.  I was checking my blood sugar at the necessary times.  I was wearing my devices and doing whatever was necessary to keep them, and me, up and running.  It’s a comfortable diabetes apathy that I’ve settled into, with results that are in range enough and diabetes control that falls within the guidelines well enough.  But I’ve wanted to shut the computer more and more lately.  Maybe it’s not diabetes but social media burnout?

Over the last few weeks, my life has been busy in ways that have nothing to do with diabetes.  I’ve been outside logging miles on the running trails, as this is my favorite time of year to run outside.  I have a new, comfortable routine of waking up before the rest of my family and making a pot of coffee, then reading blogs and emails while single-handedly killing the pot of coffee.  (Which means, by the time everyone else wakes up, I’m completely lit.)  We moved to a new town, I’ve been on the road for work, I’ve been investing myself in friendships and family, and I’m trying to spend more time talking to people I love instead of Tweeting into the abyss.  I made a conscious decision to pull back from the Internet and rethink how I felt about advocacy, especially in the wake of, for me, a less-than-fulfilling Diabetes Month.

And then yesterday I spent the day with the P4DC team and this welcomed wave of re-invigoration washed over me.  The conversations were diverse, but did close with a brainstorming session about Spare A Rose, which reminded me that the DOC isn’t about sharing thoughts and feelings without recognizing how frigging lucky we are.  We are lucky.  I feel like we found our footing, as an online community, by connecting with one another and comparing our good moments with our tougher moments, talking about our general lifestyle stuff and we got really comfortable in that space.  And then we started to realize, after connecting with our fellow and privileged peers (because if you’re reading this on a glowing screen, you’re luckier than most), that we live in a bubble of sorts.  We have nice problems to be managing, all things considered.  I think we came to realize that, as a community, and our ambitions and outreach started to step outside of serving ourselves.  Greater good sort of stuff.

That inspires the absolute hell out of me.  Changing our world takes a lot of effort and dedication and determination but good heavens, we can do this.  I am going through the ebb and flow of life and diabetes and all that comes with continuing to move forward but when I look at this community and see what we’ve done, and then consider what we’re capable of, the advocate in me rises from the ashes of burnout.  Like a phoenix.  (Or, probably  more realistically, a groundhog.)

Whether furry or on fire, my desire to be part of this vibrant community remains intact, intense, and appreciative.

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