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Posts from the ‘Diabetes Community’ Category

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.

 

Spare a Rose: 2015 Results.

This year, the total raised for IDF’s Life for a Child program through the Spare a Rose, Save a Child campaign was $24,229.

We aimed to raise money and awareness for kids in developing countries who are without resources and insulin, and we raised money.  And awareness.  For the third year running, the diabetes community as a whole pledged their time, money, and outreach to touch the lives of people we’ll never meet but who have a chance to thrive based on our willingness to give.

If that’s not inspiring, I’m not sure what is.

In these beautiful images created by Mike Lawson from Diabetes Hands Foundation, you can see how far that money goes.

[More on the Spare a Rose 2015 results here]

Thank you, each and every one of you, for your support for Spare a Rose.  Your blog posts, Tweets, emails to friends and family, you reaching into your own pocket to share just a little so that others can continue to live … every little thing you do, matters and resonates.  Spare a Rose has closed out for 2015, but the influence of our collective contribution will last a lifetime.  And will provide a lifetime.

Our global community thrives and continues to inspire, thanks to all of you.

 

Animas Vibe: A Few Weeks Later.

Again, disclosure:  I work with Animas and have a sponsorship contract.  Here are more details on my disclosures. And this is the Mr. Plow theme song.  Mr. Plow would be great, about now, since the snow keeps dumping down outside.

It’s been several weeks since I’ve switched to the Animas Vibe insulin pump (with integrated CGM technology – doesn’t that sound like a rehearsed phrase?  How about “insulin thing with CGM thing built in and have you seen my coffee, pleaseandthankyou.”), and I thought I’d take a crack at some second impressions, since the first impressions were only compiled after a few days.

Talking ‘Bout CGM:  I am still into the concept and application of having one device that does the work of two.  While the Vibe still requires that I wear an insulin pump infusion set and a CGM sensor as two separate insertions, it removes the need for an external CGM receiver.  I wrote about this last time, but to reiterate:  I am okay with not using the separate receiver.  I’ve traveled a lot in the last few weeks and the first few trips, I brought along my CGM receiver so I could plug it into the SHARE port.

For the record, I still haven’t upgraded to the 505 software.  Judge all you want.  :)   Which may explain my identical CGM graphs.  (And, also for the record, I’m really, really excited to see the new Dexcom receiver.  That may change how I feel about clouding, as it would be much simpler.)

But then Chris and I came to realize that we aren’t good at this whole “data sharing” thing.  As much as it sounds like a good plan in theory, we aren’t good at the application of it.  I think this becomes a patient-specific preference sort of thing, and for this PWD, I’m not a data-sharer.  But as I mentioned with that previous dead horse that I keep flogging, I like options.  Love them, actually.  And anything that gives data options – LIFE options – to people touched by diabetes, I am all for it.

(That sentence was a grammatical nightmare.  Ignore the sloppy parts and move on, yes?)

DiasendYesterday, for the first time in a long time, I downloaded (uploaded? loaded.) my data to Diasend.

The data collection portion is cumbersome.  I hate dongles and charging cords and all the extra beeps and wires required to make sense of diabetes data.  (Which is why I’m such a fan of the Verio Sync idea, which uses bluetooth technology to automagically suck the results off my meter and spit them into my iPhone, but there are issues with that system, too, because it’s only iOS compatible.  Pluses in one way, minuses in another.  But see aforementioned “I love options” sentiment, because it still applies.)  But I did download my pump data, which also downloaded my CGM data.  And, because I was feeling ambitious, I uploaded my glucose meter, too.

So this was my first time looking at Diasend with information about my insulin doses, glucose meter results, and CGM results on the same screen.  (No, I am not sharing my results.  My numbers have been absolute shit lately and I’m not going to pepper my blog with confirmation that I have diabetes.  I’ll let the c-peptide test that’s required by my insurance in order to cover my insulin pump serve as that confirmation.  Yes, that’s a thing.  Yes, more on that later.)

Diasend is good for granular information, but the information on the “compilation” tab was ace for me.  Seeing my blood sugar averages based on time of day was powerful.  (I have midnight to 11 am nailed and awesome.  Everything not in that time frame needs a solid snuggle these days.)   As a Mac user who hasn’t explored the new Dexcom/Mac Portrait (I’m woefully behind on everything that doesn’t involve Birdy these days), seeing my Dexcom data on my laptop is amazing.  I’ll be exploring Portrait in the next few days but in the meantime, I’m happy that information can be siphoned over to Diasend.  And it puts the constant flow of data into digestible context.

Pump Stuff.  Since I was a Ping user before, using the Vibe feels familiar and easy.  I’m still glad this sucker is waterproof and the button clicking process is familiar to me.  All of that feels the same.  One thing I have noticed is that the more my CGM needs attention, the faster the battery in my pump needs replacing.  This is annoying, but makes sense despite the annoyance.  For the first time ever, I’ve invested in lithium batteries for my pump and it seems to hold much better than the alkaline ones I have been using for the last … forever.  But overall, the pump feels familiar and comfortable, and since I hate change, that familiarity is a plus for me.

Alarms, for whatever reason, remain easier to hear and feel when they are coming from the pump.  This was a huge concern of mine because I thought the pump alarms would be muffled by clothes and bedding, making them hard to catch.  But I actually respond to low and high alarms more readily on the Vibe.  I am not sure why.  Maybe because it’s attached to my hip and I feel the vibration?

What remains to be seen is how the changing state of Dexcom progress will affect my feelings about this pump.  Right now, it’s the only one integrated with the CGM I already use, so that’s a huge plus.  But I am concerned about the fact that the software in the Vibe is already behind on the current Dexcom system.  I know the FDA process creates hurdles that are hard to clear, but since the Vibe has already cleared the Big One, can I expect that updates and upgrades will come fast and furious?  As a PWD using the Animas product, I hope this is the case.

And lastly, I’m hoping to have this pump covered by my insurance company.  I’m still trying to get a c-peptide test done (travel, snow, and issues with fasting) to fulfill the requirements issued by Blue Cross Blue Shield, so that journey remains ongoing.

Thankfully, I’m still pretty effing sure I have diabetes.   So yay?  Yay.

Build Your Own Doctor’s Appointment.

In Providence, there’s a great burger place called Luxe Burger, and they have this menu where you can build your own burger.  Patrons can make use of a sheet of paper that helps you build a burger to your specific preferences.  Do you want the meat cooked medium, or medium well?  Tomatoes or no way?  Would slices of avocado do your burger right, or are you more the onion rings and chipotle aioli?

I love this place.  It gives great hamburger.  And it helps organize my thoughts around a moment that – let’s be honest – is not life or death.  It’s a frigging hamburger.

The things in my life that need to be streamlined into an effective and influential flow, like my endocrinologist appointments, are not as simple as ordering a hamburger.  But they should be.

This concept, about the ease of hamburgers versus the chaos of doctor’s appointments, came up in conversation with a design team I’m working with (part of theT1D Exchange Project – more on that soon).  “We should have the same sort of menu when it comes to making the most of our doctor’s appointments,” I said.  “I usually have to write down my questions before my appointment to remind me what needs to be asked, but even then I don’t always remember everything.  Having something that triggers me to think of potential discussion points would help me make the most of my appointments.”

Then I started picturing what my “menu” would look like.  As a patient at the Joslin Clinic in Boston, I see an educated and established endocrinologist.  She’s very smart, and I want to draw from her intelligence to help make positive changes in my health.  But, aside from labwork results, she can only work with what I disclose.

So what would my menu look like?  How would I build my own endo appointment?

  • My menu would be held on my phone, and would allow me to keep a running list of my medications and doses.  (I always forget the milligrams of medication I’m taking for blood pressure, despite taking the medication faithfully every day.)
  • It would have a list of possible discussion topics that I could tick off as needed, tied to my specific demographic:  exercise, pump therapy, CGM therapy, emotional health, travel questions, female-specific issues, etc.
  • Open fields to keep a running list of patient concerns would be helpful, giving people a place to jot down questions in one place (instead of a napkin note here, a question written on the back of an envelope there … what, just me?)
  • It would have a field for me to enter any blog posts/websites that I want to discuss with my doctor.  (Would also be awesome if I could email links to the menu, kind of like how I forward my travel emails to TripIt, and it automagically populates.)
  • The opportunity to add my labwork results would be great, too.  I wish the Joslin Patient Portal could be siphoned into an app of some kind, but then patient privacy concerns would crop up, and rightfully so.
  • But I keep coming back to the “menu” aspects of things.  Can I order my A1C before my appointment, so the results can be discussed during, and not after?  Can I ask for “the works” and have the rash on my CGM site inspected as well as my feet checked for nerve damage?  Can I ask for a side of dietician, or a follow up with a CDE as “dessert?”
  • And, thinking further out, what would my doctor have on my menu of expectations?  Would she want me to have my logbooks downloaded and ready to go?  Does she want to see my labwork ahead of time, too?  How can I help her help me?

For me, getting to the Joslin Clinic for my appointments is a complicated affair, since the drive to Boston takes a fair amount of time.  But I continue to go there for my diabetes care because I am confident that their expertise plus my dedication to taking care of myself produces the best outcomes.  I do want to make the most of my appointments, though, and being prepared contributes to doing just that.

What helps you become best prepared for your appointments?  If you could create a menu to build-your-own-endo-appointment, what would you include?

 

The Friday Six: Spare a Rose, Toaster Selfies, and Inhaled Insulin.

Happy Friday morning, she writes from the train that is scrambling up the eastern seaboard, going from No Snow to OMG Snow.  While I’m looking forward to getting home and returning to the Birdzone, I’m not exactly thrilled to see what this week’s snowstorm dumped onto our home in Rhode Island.  (Also, almost wrote “snotstorm,” which, if you know me at all, would be the worst natural disaster that could ever, ever come my way.)

Today I’m working through my inbox and sharing what cropped up as curious.  Have at:

Updates on inhaled insulin from the team at diaTribe.

A sample of what Dr. Korey Hood and I partnered on this week – talking about diabetes management, the importance of options in technology choices, and Animas Vibe[Oh hey there, disclosures.]

“A few weeks later Letamendi opened her new issue of Batgirl. In it, she found a shocking surprise. Simone had turned Letamendi into a character: Batgirl’s psychologist.”  This article is so cool.

Berci at ScienceRoll takes us through the current and future state of diabetes technology.

“I am lucky to have such a great best friend, and I know that down the road, on my wedding day, she’ll be there not only to straighten my gown train, but also to remind me to check my continuous glucose monitor.”  Great insight on friendship from Lauren.

Exploding kittens.

“But I was most struck by the realities of the family’s daily routine. Grace’s mother, Patricia, who is the sister of my boss at Saddleback Leather Company, where I am a filmmaker, told me about nights punctuated by alarms to get up and check her daughter’s blood sugar, at ‘midnight, 3 and 6.’” The opinions on this NYTimes article couldn’t be more diverse.  I’ve decided that I actually can’t decide how I’m most comfortable diabetes being portrayed, as I struggle to walk the line between “I’m fine/I’m sick.”  Your thoughts?

Flowers die, children shouldn’t.  The Spare a Rose campaign starts on February 1st.  Please consider joining the diabetes community in supporting our own.

The Boston Yeti almost replaces The Real Bigfoot as my favorite Twitter account.  Almost.

When emotions drive health behaviors.

Kim takes on the benefits of growing up with type 1 diabetes over at T1EverydayMagic with some fantastic cartoons to illustrate her point.  (GET IT?!)

“I think she felt bad for me. She acted as if it were cruel that I’d had to pay “a lot” of money for medicine to keep me alive, medicine for a disease I couldn’t help having. How thoughtful of her.”  Getting insulin in France.

Selfie toaster.  Bring on the gluten-free edible faces of my cats!

One Voice.

[Disclosures first:  I attended the Partners in Patient Health Summit yesterday in Washington, DC, which was an event sponsored by Sanofi.  They paid my travel and lodging.  I paid attention and generated my own opinions.  Now you know.]

At the Partners in Patient Health Summit yesterday, there was a spirited discussion about the power, and then the powerlessness, of the diabetes community.  John Schall, CEO of Caregiver Action Network, told the group (and I’m paraphrasing) that he was disappointed to see a community with so many people in it, yet so powerless.

This statement stuck with me because it forced me to step outside of the diabetes comfort bubble, and as the conversation moved forward, I wondered why we, as the diabetes community, have such a hard time coming to consensus on things. Why are we so disjointed, at times, in this space?  Diabetes, in my case, is a disease that will span decades and has been present for the vast majority of my life, causing relevant issues to shift with time.  When I was diagnosed at the age of seven, my parents needed support in taking care of me and my main priority was getting to soccer practice, or turning in my homework.  As I’ve grown older, priorities changed to include staying healthy to take the best care of my daughter.  “What matters most” is redefined every few years, but at the core, what matters most truly is my health.

Later in the afternoon of the summit, advocates from other health conditions took the stage to talk about what has worked, advocacy-wise, in their community and where they’ve drawn success from.  A common message from the other advocates was that consistent messaging matters, and to be heard, we have to speak with “one voice” as much as possible.

Can we speak with one voice?  Can the diabetes community come to agreement on two or three issues that we can rally behind with passion and conviction, raising awareness and our voices?

What can we, as a group rally behind? Where are our common goals? And how, for crying out loud, can we bring them to fruition?

(And to check out some of the discussion from the Summit on Twitter, take a look at the #diabetesPIPH hashtag.)

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