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Posts tagged ‘Friends for Life’

Flick of the Wrist.

In the interests of getting through TSA in Orlando as quickly as possible and making my way over to my gate so I could find some iced coffee and a banana, I disconnected my insulin pump and put it through the x-ray machine, caring very little if it melted in the transaction because I was melting in the transaction.

The tram to the gates was arriving just as I was finished at security, so I grabbed my pump off the tray and held it in my hand. dragging my bag to the shuttle. Just after “stand CLEAR of the closing doors,” I reached around to the top of my hip and reconnected my infusion set, sticking the pump into my pocket.

A woman boarded the tram, her infant daughter strapped to her chest. I noticed her noticing me while I reconnected my pump.

“Insulin pump?”

“Excuse me?”

“Is that an insulin pump? Sorry – my son has diabetes and I recognized the pump.”

“Oh, yes.” I searched her wrist for an orange or green CWD bracelet but didn’t see one. “Were you here for the conference?”

“What conference?”

“The diabetes conference. It’s called Friends for Life and it’s put on by an organization called Children with Diabetes. It takes place here in Orlando, over at Disney.”

She smiled. “I’ve never heard of it, and I live right here in Orlando. What’s it called?”

“Friends for Life. It’s a diabetes conference for families with diabetes. Lots of kids with type 1 attend with their parents, and lots of adults like me who go to connect with other adults who have diabetes. It’s really nice, like diabetes camp. Community helps, you know?”

She nodded, and the baby on her chest flapped her arms happily. “My son goes to camp. He loves it. But I’ve never heard of the conference before.”

I reached into my bag and fished around for a pen. Nothing. Checked my pockets for a business card. Nothing. The tram was about to stop and ditch us at the gates, leaving me just a few seconds to try and explain how a few days in Florida can change your life for the better.

“What’s the conference called again?”

I grabbed the edge of my green bracelet and pulled it off my wrist.

It's on. #ffl15

A photo posted by Kerri Sparling (@sixuntilme) on

“I know this seems weird to hand you a slightly-used conference bracelet, but the URL for the conference website is on it. Everyone who has diabetes wears one of these green bracelets. You see one of these and that person understands, you know?” I handed her the bracelet, pointing at the website address. “I hope this doesn’t seem creepy. It’s just an amazing experience, being around all of those other families, and it would be great to have you and your family check it out, if that’s your thing.”

She took the bracelet and put it in her pocket. “This is very nice of you. Thank you. I’ll check it out for sure.”

The tram doors opened and we stepped out.

“Where are you headed home to?”

“Rhode Island.”

“And you come here just for that conference?”

I thought about the week that had just passed, when I was surrounded by people who redefined family.

“All the way here. Green bracelets are pretty awesome.”

She waved, and her baby waved, too. “Thank you for passing this along. Safe travels back home. Maybe we’ll see you next year.”

Usually when I board the plane home from Friends for Life, I like to look down at my green bracelet because it reminds me of my PWD tribe.  This year, with a flick of the wrist, I was grateful it had found a new home.

Snapshots: Fell Off.

Until next time.

Friday Six: But Not On Friday.

SUM stuff from around the Internet:

“The latest in this trend is the meme showing a fat little girl titled ‘Lil Diabeetus snacks’ as a take-off to Little Debbie Snacks.  It’s being bandied about on FaceBook as ‘cute’ and ‘funny’; an appropriate name change.  Is it funny?  I don’t think so.”  Kate weighs in on the Facebook meme.

Tuesday’s #dblogcheck was a community success, and seems to have woken up many of the sleeping bears (if you want to picture blog commenters as sleeping bears, which I do, because that’s adorable).  Check out Chris Snider’s excellet Storify recap of many of the blog posts and be sure to say hello on some new and old blog favorites.

Wendy’s daughter has gone to Clara Barton Camp … and she’s also gone BIONIC.

Athletes inspire kids with diabetes at Friends for Life Conference” is the title of this video, but I’m going to assert that adults are pretty inspired by Charlie and Jay, too.

An eighth grader took She Still Smiles and made it into something really, really cool.  Read about Talia’s project here.

“Her former team dismissed her for having diabetes. Her coach and teammates stood by her and struck out on their own.”  Read more about Rebecca Young here, and consider supporting her!

I sent emails to my representatives.  Now it’s your turn.

The “Fakeabetes” Challenge – pretending to be a PWD for the day!  Read more from Kim and Whitney on this day with diabetes.

This post from Meri is a call-to-arms, and I’m ready.  “The Movement Has Begun.”

JDRF appoints Derek Rapp as new President & CEO – here’s more information on this change in leadership from the mothership itself, and a post about the changing leadership of ADA and JDRF on Diabetes Mine.

Why Should Diabetes Advocates Enter This Food Fight?”  Hope Warshaw explains.

“ADA and others have sent in their comments, but the FDA needs to hear our individual voices as advocates.”  You can give the FDA your thoughts on the proposed Nutrition Fact Label, and you have until August 1st to do so.  More on the how, and why, at Diabetes Advocates.

The FDA will host an online conversation (“A Virtual Town Hall”) for people with diabetes on November 3.  And, according to the crew at diaTribe, they want to hear from you!  Click this link for more information and the link to email diaTribe, and you can also join the conversation on Twitter using the #DOCasksFDA hashtag.

My favorite part of this video?  “I can read.”  Love, love, love.

Friends for Life: Madcap Recap.

A bulleted list because that’s what bloggers do.

  • My personal schedule had me running around like a chicken with its head (and pancreas?) cut off, and while I felt really lucky to be so busy, I didn’t have enough quality time with people I love.  It’s a nice problem to have, but it was frustrating because now that I’m home, I wish there had been long coffee chats with so many different people.
  • Coffee tastes best out of my new favorite mug –>
  • One of my favorite moments was during the Parenting with Type 1 Diabetes session, when Marissa Town and Melissa Lee started singing the Dexcom “ATTENTIVE” low alarm song, complete with facial grimaces and in perfect harmony.
  • It’s weird how therapeutic it can be to cry in a room full of “strangers.”
  • Even odder still is putting the word “strangers” into quotation marks because anyone living with diabetes has intimate knowledge of moments in my life that even my closest family members can’t quite wrap their head around.
  • It was so nice to meet the team from Kedz Covers, and yet so odd to meet them in Florida, seeing as how they live here in Rhode Island.  Only in the diabetes community do you meet your actual neighbors at a conference 1300 miles from home.
  • (And yes, that’s the “Don’t Mess with Rhode Island, Either” t-shirt, but I negated its awesome message by wearing my bag cross-body style, covering the little Rhody and making it look like I’m on the welcoming committee for Texas.  Whoops.)
  • The “Reducing Social Stigma from Diabetes: A Patient Perspective” session with Richard Wood, Kelly Close, and Adam Brown was one that I wish I had been able to attend, because the stigma related to (and nestled around) diabetes of all kinds is a topic that is very top-of-mind for me.  I’m looking forward to seeing and hearing more about this survey and have been stalking the #dstigma hashtag for feedback.
  • Watching Melissa pass the diaversary torch (so to speak) to Briley in the bar at midnight was a moment that made me laugh, but also gave me goosebumps because marking a diaversary can be intense, but doing it a room full of people who love you is fucking empowering.
  • It was an absolute honor (and wicked fun!) to partner with Dexcom last week, sharing stories and giving away copies of Balancing Diabetes. A huge thank you to Dexcom for their support, and also to the diabetes community for stopping by to say hello at the booth.
  • And thanks to Scott for lending me a pen to use at the book signings, which just so happened to be a pen from George’s office, making me feel like a little bit of George was at Friends for Life, too.  Full circle, there.
  • I loved being part of a session for parents of children with diabetes aiming to answer the questions they might not be asking their own kids, and it was an honor to partner with Adam Brown (of Close Concerns) for this session.  The discussions were intense, but productive, and for anyone in attendance who didn’t end up watching The LEGO Movie that night, here’s a link to what the hell I was talking about.
  • I learned that Scott, aka “Pockets,” keeps an army of diabetes (and non-diabetes related) supplies in his pocket.  The man is half kangaroo.
  • (Happy belated birthday, Pettus!)
  • After Friends for Life was over, Chris and Birdzone flew down to Florida to meet me and we spent a few days at Disney.  Getting ready to head out to the park the next morning, Chris asked why I still had my conference bracelet on.  “I like it,” was my response, because it’s hard to articulate what the green bracelet really means to me, or how the orange bracelets keep me going.
  • I still have my green bracelet on.  We walked through the Magic Kingdom and I found myself glancing at wrists around the park to see if anyone from the conference was there.  I didn’t see any green bracelets.  But I kept mine on in case someone was looking, too.
  • I still have it on now, only I don’t think the cats give a shit.
  • (Total sidebar:  It was Loopy‘s birthday two days ago, and Birdy and I will be making her a “cake,” which equals out to Birdy wanting to eat cake and this is her excuse.)
  • Attending Friends for Life is a place where I can wear my emotions on my sleeve and my pump on my hip.  It’s somewhere I can feel safe admitting the things that weigh heavily on my mind but also celebrate something as simple as a 100 mg/dL on my glucose meter.  And nothing reminded me of this more than when I was walking towards my next session and I saw Briley outside of it, tears streaming down her face.  “I just had my eyes checked.  And they’re totally fine!!  After twenty-five years, they are still fine.”  I couldn’t hug her fast enough, or hard enough, because that’s what you do.  You celebrate the things others would never think to celebrate, and you appreciate the people who understand.


Ante Up.

During one of the discussion groups at Friends for Life, one of the attendees took a look at their Dexcom, gave it an exasperated sigh, and threw it into the middle of the room in frustration.

“I don’t want it near me.”

There was a brief pause.

“Ante up,” someone quietly said, their own Dexcom case hitting the floor alongside the first.

And within a matter of seconds, a diverse pile of diabetes devices met in the middle of the floor in solidarity.

This is Friends for Life.

Masterlab: Tides are Rising.

In the last ten years, the DOC has evolved from a small pocket of voices to an entire choir that can’t be housed in one town, or state, or even country.  I love seeing more hands raised and more people saying, “Me, too!” and providing support and understanding for one another.  Patient stories matter.  Our stories matter.

The DOC is also becoming more diverse, more inclusive, and more action-oriented, moving these online conversations to offline endeavors, making a tangible difference in the world of diabetes.  I’ve seen the start of this kind of change, and the tides are rising beautifully. And with it go all of our boats.

But there’s more work to be done.  Which brings me to Masterlab.

In a few days from now, dozens of diabetes advocates will bring their voices to sunny Orlando, Florida to participate in the Diabetes Hands Foundation’s Masterlab program, which is about “building a sense of what is possible and creating a formula for successful diabetes advocacy in the future.”

My response?  Oh hell to the absolute yes.  I asked Manny what the impetus was behind Masterlab, and he said that he’s hoping to address the “squeaky wheel” mentality of advocacy … namely, helping diabetes advocates make the wheel squeak more.

“We are in dire need of people who will tell their story, who will come out of their caves and tell to FDA, CMS, NIH, or your-favorite-alphabet-soup, the ways in which a particular drug, device, therapy, or research affects their lives. Maybe it’s not the A1c or the cardiovascular risk, but being able to live through less hypos or not having to take a shot. But we need more,” he said.

“We need advocates willing to speak where their voices need to be heard. We need people who can wear their passion “like a sports coat” (as Glu’s Dana Ball would say), balancing it with solid data to support their views packed with emotion. But we need more.”

The Masterlab takes place on July 2nd at the Orlando World Center Marriott from 7 am – 5 pm and is free for anyone who has already registered for the Children with Diabetes “Friends for Life” conference.  (If you would like to register just for Masterlab, the cost is $50.  You can register here.)  The full agenda is listed here, but if that’s tl;dr, the topics include Today’s Diabetes Advocacy Environment, What Has Been Accomplished by Other Patients (and How), Getting the Attention of Decision Makers, and Mobilizing the Diabetes Community, plus several others.

Manny added, “We need everyone behind the voices speaking on behalf of the community, providing an echo effect, to amplify our voices and make sure that there is not a single corner in any government office that has something that it could be doing to help more people touched by diabetes that doesn’t hear about it.  Putting in place the building blocks to start making this vision a reality… that is what Diabetes Advocates MasterLab is about. I hope the event sells out… because we need more.”

Click here for details on Masterlab, and please register if you’re coming to FFL, or if you live in the Orlando area.  Register soon, as space is limited.

Your voice matters.  Use it.

FFL: Social Media as Part of the Prescription.

At Friends for Life this  year, there was a special panel discussing “Social Media & The Monster Under the Bed: The Latest Thinking on Fearing vs. Embracing Social Media,” focusing on efforts to validate the role of peer-to-peer support in diabetes management.  Moderated by members of the diabetes online community, the panelists included:

  • Korey Hood, PhD – Associate Clinical Professor of Pediatrics at University of California, San Francisco
  • Jill Weissberg-Benchell, PhD, CDE – Associate Professor at Ann and Robert H. Lurie Children’s Hospital of Chicago
  • Barbara Anderson, PhD – Professor, Department of Pediatrics, Section of Endocrinology and Metabolism at Baylor College of Medicine
  • Jeremy Pettus, MD – Internal Medicine Physician, San Diego, CA

Pretty awesome panel (and the discussion was live-streamed – video embedded below).  The point of this discussion was to get health care providers talking openly and honestly about their thoughts on people with diabetes finding support online.  “In terms of how healthcare professionals view the DOC, I think that there are mixed feelings about it,” said Korey.  “I think that some can see the value in it and see it as an extra resource and others are a little bit worried about the information that individuals can take from the online community and whether it will be accurate and consistent with their recommendations.”

“What do we do to get providers using this [social media] more, I think it requires a change in mindset, using social media as another tool,” said Jeremy.   “We concentrate on using insulin or the pumps and CGMs, but we don’t really think of this as another way of of helping our patients reach their A1C goals.  As we all know, diabetes is a very psychosocial disease and we have a lot of tools to help people ‘get there,’ but there’s a big disparity between what we can do and what actually happens.  That’s kind of where I see social media and online support fitting in – taking what the providers can do and adding the support element to make sure it gets done.  I think of this as another way of reaching treatment goals.”

Barbara tackled the question of whether or not HCPs think support is important in terms of predicting or improving patient outcomes.  “I think the assumption that medical providers would think support is important – I wish that was right.  I think that what medical providers think is important is the algorithm that I’m giving you, or the prescription that I’m giving you.  Not that the reality is that it’s [also] the support.”

Korey added to that:  “I do work in changing patient behavior because it’s easier than changing provider behavior.”

Actually, in the meetings leading up to the event, the goal seemed to be to validate the role of the DOC in patient outcomes, but throughout the course of the discussion, it became clear that validation wasn’t ‘necessary.’  The fact that there were so many people in that room, talking about their experiences and how they’ve learned, grown, and benefited as a result of being involved in the DOC was enough.  The proof is in the people.

Jill summed up things nicely for me:  “Social media is here to stay.  It’s an amazing opportunity to meet with people who have the exact same experience that you have, who get it at a level that your family, no matter how much they love you, can’t get.  You get this sense of community that is impossible to get at your doctor’s office.”

Diabetes is a background issue.  The BEEP of the Dexcom as it alarms for a dropping blood sugar isn’t preceded by the loud scraaaatch of a record needle scraping across the vinyl, signifying a break in the soundtrack of our house.  And my insulin pump is simply something that I wear.  Except at Friends for Life.  There, a wailing Dexcom can cause seven different people to reach into their bags, furrowing for a jar of glucose tabs to offer up.  And my insulin pump becomes a show of solidarity.

This summer was my fifth Friends for Life conference, and I don’t like the view of my life without it.  For years, diabetes was the thing that made me different, and made me the odd one out in my elementary school, then high school, then college, and so forth.  But now, thanks to a flourishing diabetes online community and conferences that are centered around educational and emotional support for people with diabetes, diabetes is what makes me the same.  People I’d never know, or ever have anything else in common with become friends and a huge part of my support network in the context of living with diabetes.

The influence of the support of others who understand can have as much of a positive impact as anything else prescribed for life with diabetes – maybe more so.  Feeling emotionally capable of managing a daily, demanding disease is what keeps me doing what needs to be done, and staying adherent/compliant.  All aspects of my health are better for it.

Thanks to the panelists for raising their voices about this topic, and I look forward to watching conversations evolve.



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