Skip to content

Posts tagged ‘CWD’

Jul 13

15 Comments

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.

You might also like:

Perspectives on Diabetes: Why Children with Diabetes Matters. My Little Orange Bracelet. Friends for Life: Madcap Recap.

Jun 9

4 Comments

The Need for Naps … I mean, Self-Care.

Ten years ago, if you told me I’d have to bail out of a conference in the middle of the day to take a nap, I’d have laughed in your face because I thrived entirely on insulin, caffeine, and chaos and what do you mean, NAP?  I don’t need to nap.

Funny how being in my 30’s and hosting almost three decades of type 1 diabetes in my body has changed my whole stance on naps, and self-care in general.

This past week, at the American Diabetes Association Scientific Sessions meeting, there was a lot going on.  Informative sessions, meetings with colleagues, social things with friends in the DOC, and a big exhibit hall full of diabetes companies, both established and up-and-comers.  Lots of stuff going on, and the pace of the conference is enough to wipe you out entirely.  (To catch some of what happened, take a peek through the #2015ADA Twitter hashtag.  There’s quite a bit there.)

Self-care is important for people with diabetes, but it’s not something I used to focus on.  I don’t mean self-care as it pertains to the specifics of diabetes, like checking blood sugars and taking insulin, but more the overall need to listen to my body and take it easy as necessary.  Things like “eating lunch” and “sleeping more than five hours” are included in self-care, but I had a bad habit of not doing either of those things.  I used to power through, soldier on, keeping going, [insert more phrases about not taking a moment to rest here] even when my body was throwing up its hands and hollering, “HOLY SHIT WOULD YOU PLEASE STOP?!”

But the effects of pushing too hard oftentimes wore through my good intentions and left me exhausted, with crummy blood sugar control to boot.  This past week, I embraced PTMO (permission to miss out) in efforts to stay healthy and feel “present” when I was at an activity, and it was a nice change of pace.  I went to sessions and wrote up my notes, and then took an hour to decompress in my hotel room.  I took naps in the middle of the day, grateful for the recharge that 15 minutes with my eyes closed provided.  I did not over-schedule myself but instead tried to keep the flow of the day less frenetic.

Permission to miss out, to take care of my own needs, makes me feel a little meh, as though I’m not able to keep up and that makes me weak somehow.  It also forces me to acknowledge that some parts of diabetes are taking a bit more of a toll on me than they have in decades past (ex. I had a low blood sugar during the conference that wiped me out for two hours.  The hangover is real.)  To Me 10 Years ago, the concept of taking it slower sounds ridiculous and the stuff that weak-sauce is comprised of, but to Current Me, it sounds necessary.  Because I’m older.  And possibly slightly smarter.  I felt present and able during the course of this conference, and I blame taking advantage of PTMO.

Because ultimately, PTMO leads to TGC (taking good care).  And it’s NWF (not without fun).

With Marissa Town at the TCOYD / diaTribe forum where we learned, laughed, and Facetime'd her kid. 🙂

A photo posted by Kerri Sparling (@sixuntilme) on

Mike Bloom from Dexcom has awesome shirts. #2015ADA

A photo posted by Kerri Sparling (@sixuntilme) on

Collector card.

A photo posted by renzas (@renzas) on

Diabetes Hands hosts some of our diabetes faces. #2015ADA #honored

A photo posted by Kerri Sparling (@sixuntilme) on

You might also like:

Friends for Life: Madcap Recap. An In-Depth Look at the Diabetes UnConference. Friends for Life Frenzy.

Jul 9

12 Comments

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.

 

You might also like:

Friends for Life Frenzy. Walking with Friends. My Little Orange Bracelet.

Jul 7

12 Comments

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.

You might also like:

Masterlab: Tides are Rising. Friends for Life Frenzy. FFL: Social Media as Part of the Prescription.

Jun 20

3 Comments

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.

You might also like:

Friday Six: Masterlab, TypeOneNation, and Jim Turner! D-Blog Week: Change One Life, Change the World. Medtronic Diabetes Advocate Forum: Meaning Trumped Marketing.
« Older Entries
Follow

Get every new post delivered to your Inbox

Join other followers