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Posts from the ‘Diabetes Advocacy’ Category

Walk with D: Join My Diabetes Journey.

How can people without diabetes understand what living with diabetes is really like?

This is why I have written this blog for almost ten years – to connect and share with my peers, but also to educate those who don’t exist in the diabetes bubble.  The DOC shares so much about their personal lives with diabetes in efforts to find community, empathy, and that whole, “Me, too!!” vibe.  But even within the diabetes community itself, there are levels of misunderstanding, misrepresentation, and mistaken messaging, often creating a divide where there should be a bridge.

By increasing understanding and empathy, we can work together to raise the visibility of real life with the ‘betes.  And the aim of the Walk with D campaign is to help peel back the layers of misunderstanding in efforts to build those bridges between the community itself and society.

Participation is simple: Share your story.  Using social media as your megaphone (like so many of us already do), show what your diabetes life is really like through blog posts, photos, tweets, status updates, and videos, and tag your stories with the #WalkWithD hashtag.  (Were you thinking about starting a Twitter account?  Today would be good – you’ll have three days to practice before #dsma!)

Gone are the days of stock photography representing diabetes (besides, it always pissed me off to see the stock photography lady who had diabetes one week and who also came back as a search for “office meeting frustration” – show me REAL PEOPLE with ACTUAL DIABETES, not the same reused stock photography model) – social media gives us the opportunity to replace the stock photos with real faces, real stories, and real life with diabetes.

To see the patchwork quilt of stories assemble real-time, check out the Tagboard in place at WalkWithD.com.

Together, we can create a collage that shows people both in and outside of the diabetes community the reality of life with diabetes.  This is what we do when we write blogs about our experiences, when we create videos, when we Tweet, and when we take on documenting a #dayofdiabetes.  This campaign is help us better understand one another, and to reach outside of the diabetes bubble and drop some diabetes slice-of-life on society as a whole.

Every voice matters.  I hope this campaign helps bring more voices to the community because I love learning from the DOC.  Are you caring for a child with diabetes?  Living with type 2 diabetes?  Newly diagnosed with diabetes?  Living with type 1 diabetes?  Gestational diabetes?  In a relationship with someone touched by diabetes?  There are so many different walks with D.  Connect with others touched by diabetes to understand their journey and to let them know that they don’t walk alone.

This advocacy campaign was developed by the Partnering for Diabetes Change group and runs from today through the end of Diabetes Month (9-15 through 11/30).  The goal is simply to raise awareness for, and highlight the dignity of, life with diabetes.  Walk with me, walk with D.

So Many Things!

A Friday Six on a Wednesday!  Because why the hell not.

The FitBit obsession.

Renza talks about the messaging of diabetes, and what we can do to get it right.

Here is some damn sneaky research.

Seb is still running. And I’m still supporting the hell out of him, because he’s incredibly dedicated. You can still support him, too.

I am having the hardest time not filling our home with everything Murray, by way of Derek Eads.

“It’s a day to remember those who were lost. For me it’s a reminder that I’m lucky to be alive.”  Amazing post from Carly about a medical emergency on 9/11.

Are you in the Los Angeles area?  Diabetes Sisters is coming to LA on October 24th, and I’ll be part of the event, alongside some of my favorite DOC people (Hi Cherise, Manny, and George!).  Hope to see you there!

That same weekend, up in Anaheim, CA, the Children With Diabetes team will be holding a Focus on Technology conference.  There will be a whole session on setting up your CGM in the Cloud rig – don’t miss it!

Coming Together as a Community – a great piece from diaTribe’s editor-in-chief Kelly Close.

There is no such thing as a “free food.”  Sort of.  New column at Animas.

“today, i felt parts of the monster within myself.  today, i felt parts of the hero within myself.”  Excellent post from Heather Gabel about the activated patient.

THE SEA OF TREES found its way into People Magazine last week.

And these – THESE VIDEOS ARE AMAZING.  Melissa, you are the Weird Al of the DOC.  :)

An In-Depth Look at the Diabetes UnConference.

Peer to peer support has been shown to be highly beneficial to those living with diabetes. The report, “Peer Support in Health – Evidence to Action,” summarizing findings from the first National Peer Support Collaborative Learning Network shared that: “Among 20 studies of diabetes management, 19 showed statistically significant evidence of benefits of peer support.”  In keeping with that theme, The Diabetes UnConference, the first peer-to-peer support conference for all adults with diabetes, is on tap for March 2015.

Founded by Christel Marchand Aprigliano, The Diabetes UnConference is facilitated by volunteers well known to the diabetes community: Bennet Dunlap, Heather Gabel, Manny Hernandez, Scott K. Johnson, George Simmons, Dr. Nicole Berelos, PhD, MPH, CDE and Kerri Sparling [me ... can you tell this part was a bit of a cut-and-paste from the "about" page on the UnConference website?  Yes ma'am.]  These diabetes community leaders are familiar with the topics that will be covered; each live with diabetes.

The Diabetes UnConference will be held at the Flamingo Las Vegas from March 12 – 15, 2015, and today, I’m talking with founder Christel Aprigliano about the when, how, and most importantly the why of this ground-breaking event.

Kerri:  I know you.  And think you’re awesome.  For those who haven’t met you yet, who are you, and what’s your connection to diabetes?

Christel:  I was diagnosed with type 1 diabetes at the age of Six Until Me times two. (That would be twelve years old, if you have problems with math like I do.)  I didn’t know many other Type 1s growing up and spent a lot of my teens and early 20s ignoring the physical and psychological issues of having this disease. I had a great medical team that stuck with me and helped me to learn how to live with it, not fight against it.

In August of 2005, I complained to my then boyfriend (now husband) that there weren’t any weekly podcasts about diabetes. Next thing I knew, we had started diabeticfeed, talking about diabetes research news and interviewing people doing amazing things with diabetes. (This interview was in January, 2006 with a woman named Kerri Morrone. We talked about Jettas and diabetes.)

I joke about being a part of the DOC before it was the DOC. While we stopped producing diabeticfeed, I’m doing other things: writing at ThePerfectD, working with other advocates on cool projects like StripSafely and CGMSafely and founding The Diabetes UnConference. While I’m not thrilled to have diabetes, some of my most favorite people in the universe came from connecting with others because of it.

Kerri:  There are a lot of conferences that center around diabetes.  Why the UnConference? 

Christel:  I’ve been to a lot of diabetes conferences and some of the best experiences I’ve had are not in the research sessions or keynote presentations; it’s hallway moments when I’m connecting with another Type 1 or sitting around a lunch table sharing stories and tips. I would leave these conferences wishing that I had more time to talk about the emotional aspects of having this disease and how to live well with it.

During a brainstorming session at the Medtronic Advocacy Summit in January, a question was asked: “What could you do this year in the diabetes community to make a difference?” And the next thing I know, I’m saying that I wanted to have a conference that would bring adults with diabetes together to talk about living with diabetes and learning from each other  – an “unconference.”  (Unconference is a concept made popular by the tech community, where the agenda is decided by the participants during the first hour of the conference. No keynotes, no research sessions, just talking and sharing in a safe environment where there’s no judgement.)

What also makes The Diabetes UnConference unique is that it will bring type 1 and type 2 adults together in one room for a multi-day conference. No other conference does that. We all have non-functioning pancreases (only varying by degree), we have many of the same long-term complications, we all have to deal with depression and burnout and stigma, and we all want to live well with diabetes. We can learn from each other in a safe environment.

Kerri:  What was the scariest thing about taking the leap to put this conference together?  What was the most empowering?

Christel:  The scariest thing has been the idea that I’d be sitting in a huge meeting room in Las Vegas by myself, eating several thousands of dollars worth of food by myself to fulfill the contract that I signed with The Flamingo. I don’t have enough insulin to bolus for it all! (Thankfully, everyone I’ve spoken with about The Diabetes UnConference has been excited about it.)

Really it’s the idea that there people out there who need and want to talk with other people with diabetes and don’t know that this exists. It’s always that way with something new and innovative, isn’t it? We also have scholarships available for those who do want to come but may not have the financial resources to attend.

The most empowering? Knowing that it’s the community that is making this happen. I may have had the initial idea, but without amazing facilitators and participants who want to create this unforgettable experience is mind-blowing. This is about a community helping each other, learning from each other, and connecting with each other. This community empowers me to believe that we can do so much when we listen to each other.

Kerri:  Why should people attend the conference?

Christel:  We spent a few hours each year talking with our healthcare team, mostly about lab results and medication adjustments or treatment recommendations. The rest of the year, we’re on our own. We don’t have time to talk with them about our feelings surrounding living day-to-day with diabetes.

Our community is amazing. We can talk about the emotional aspects of living with diabetes online, but nothing can take the place of looking into each other’s eyes when you talk about fears and burnout. It’s rare to find someone willing to talk about diabetes sexual dysfunction in public, but by creating a safe environment where others might have the same issue and may have a solution? You may not feel comfortable talking about job discrimination online, but in person? I want people to have a safe place where they can express their feelings and get support and hopefully options…

Plus, when the diabetes community gets together, we build these incredible friendships and have an insane amount of fun. Laughter is always in ample supply.

I don’t want people to feel alone with their diabetes. I felt alone for years. That’s why people should attend.

Kerri:  How can people register? 

Christel:  Go to www.DiabetesUnConference.com to register and learn more about the conference. (It’s March 13 – 15, 2015 and being held at The Flamingo Las Vegas. We got great rates for the hotel, too!)

Our scholarship applications are open until September 30, 2014.

We’ve got some wonderful surprises up our sleeve, thanks to our sponsors. Insulet, Dexcom, Roche, and B-D have committed to helping make this conference happen, and I’m so grateful. (That being said, any company who is interested in helping can contact us and be a part of this.)

Kerri:  Thanks, Christel.  And for those reading, the scholarship applications are open until September 30th, so if you’d like to apply, please click over and send in your applicationHope to see you all in March in Las Vegas!!

Bag of Hope … For Adults?

I’ve always thought Rufus was pretty cute, so when the JDRF link for their Bag of Hope flew by in my Facebook feed, I clicked.  (Rufus is my clickbait.)

According to the website, the Bag of Hope includes (but isn’t limited to):

  • Rufus Comes Home, A First Book for Understanding Diabetes, reference books
  • A JDRF DVD
  • An ACCU-CHEK® Nano SmartView blood glucose meter
  • Informational postcard about the support Lilly Diabetes offers families with a bookmark
  • Lilly Diabetes literature on severe hypoglycemia management
  • A Novo Nordisk key chain Webkey with details on the NovoPen Echo® reusable insulin pen
  • A Novo Nordisk postcard with information on T1D support from novologreach.com
  • A Road ID bracelet for Rufus, as well as a discount coupon for a Road ID bracelet for your child
  • Dexcom® continuous glucose monitor educational brochure and water bottle

I don’t know if the Bag of Hope was a thing when I was diagnosed in 1986, but the fact that they exist now is awesome.  I love this.  I love the thought that a family dealing with a diabetes diagnosis has proof of life after diagnosis, right there in a bag.  It helps connect people to the JDRF, but most importantly, it helps connect people with people.

But if there’s anything we’ve learned in the last 30 years, it’s that type 1 diabetes diagnoses are not limited to kids.  Adults are being diagnosed with type 1 diabetes.  Adults are living with diabetes.  And they still need a good dose of hope here and there, too.

The JDRF has their T1D Care Kit, which is awesome, a PWD can dream, rightt?  What would I stick in a Bag of Hope for Adults with T1D?

Here’s my wishlist [note: already being edited]:

I’m fueled by a bunch of bias with these selections, and I know I’m missing a bunch of things that, once I hit “post,” I’ll have to go back and add to the list, but this is my starter list.

What would you want to see included in an outreach bag for adults with type 1 diabetes?

 

Diabetes Relics: Accu-Chek II.

Whose pockets were what size now?

[here's a link to a full size photo]

Scanned from the pages of the Fall 1986 issue of “Diabetes Forecast: The newsletter for people who live with diabetes,” this was my first glucose meter.

Next week marks 28 years with type 1 diabetes for me, and looking back at the technology I used upon diagnosis, I see how far things have come.  I wonder if I’ll look back, decades from now, and marvel at the cumbersome technology of 2014.

Maybe I’ll be all making my own insulin and tending to a big, fat glass of Reisling and not giving a shit because research will have finally caught up with hope.

Drafting Off #DSMA: Diabetes Job Description.

I love tuning in to the diabetes discussions on Twitter – they are always insightful and make me see things through a different (insulin-colored?) lens. The final question of last night’s #dsma chat really brought out some interesting responses:

I wasn’t exactly sure what “position description for life with diabetes” meant, specifically, so I took it as a “job description” of sorts … and one that would vary for everyone:

Looking back, I’m grateful that my learning curve belonged mostly to my parents (which is good because I’m sure it was steep at the outset). Once I was ready to take over the responsibility of diabetes self-care, the disease was embedded solidly into the context of my life and the learning curve became more of a gentle, but constant, slope.

Reading the diverse responses from my fellow PWD on #dsma was an eye-opening experience. That’s what brings me back to #dsma every time, because there’s no set-and-standard answer to any diabetes-related query … we’re all unique and special pancreatically-challenged snowflakes. :)

Jamie summed it up neatly:

To join the diabetes conversation, watch the #dsma hashtag on Twitter on Wednesday nights at 9 pm EST. It’s a great way to wind down your night while building up our community.

The Baby-Sitters Club: Graphic Novel Review.

Stacey McGill had diabetes and – holy islets – she was cool.

She was one of the lead characters in Ann M. Martin’s The Baby-Sitters Club series, acting as treasurer of the club.  You can go deep in this wiki, where Stacey is described as having “a very sophisticated style, which comes from having lived in New York. She loves wearing flashy clothes and jewelry and doing different things with her hair, which she keeps looking fabulous.”  FABULOUS!  Some of Stacey’s likes are cited:  “babysitting, math, money, shopping, pigs, Mary Poppins, and fashion” as well as some of her dislikes:  “having diabetes, hospitals, people throwing up, other people seeing her give herself insulin injections, and barf buckets.”  (I will admit to reading the whole wiki and loving the hell out of it.)

I can’t disagree with those dislikes, because I also am not a fan of barf buckets.  Or diabetes.

While Claudia was my favorite BSC member to read descriptions of (read What Claudia Wore for why), Stacey was my favorite overall because of the shared diabetes connection.  According to BSC lore, Stacey was diagnosed with type 1 diabetes before she started seventh grade and her diagnosis was chaotic because it pulled her out of school and caused some riffs between Stacey and her friend Laine Cummings.  (Yes, I am switching over to my most Punky Brewster of outfits right now, as I type this, transporting myself back to 1986.)

tl;dr – Stacey was awesome because, at the time, my friends were reading The Baby-Sitters Club and it made my diabetes seem mainstream and almost cool.

Which is exactly why I jumped at the chance to review the graphic novel version of The Truth About Stacey for Graphic Medicine (thanks, MK Czerwiec, for this opportunity!)

The original book is described by the Scholastic website as: “Poor Stacey. She’s moved to a new town. She’s still coming to terms with her diabetes. She’s facing baby-sitting problems left and right. And her parents are no help. Luckily, Stacey has three new, true friends — Kristy, Claudia, and Mary Anne. Together they’re the BSC — and they will deal with whatever’s thrown their way . . . even if it’s a rival baby-sitting club!”

I remember reading the text book cover-to-cover and feeling that kindred spirit thing, and I wondered if a graphic novel would have the same appeal decades later.

It did.

The focus of the book is NOT on Stacey’s diabetes but MWD (moments with diabetes) are sprinkled throughout.  There is something so comforting, so normalizing, about seeing a character living with diabetes not as the focus of their life, but as part of what their character goes through.  The crux of the story in this book is about a rival babysitting club, but diabetes moments are woven in to illustrate (pun intended) how diabetes isn’t something you can assign to a character and then forget about.  You have to commit.  Diabetes is as ever-present as the ink on the page, and it’s refreshing to have a visual aid for an oftentimes invisible disease.

Stacey’s dinner plate – with throwback mentions of the ADA exchange system!

I’m sure it happens all the time, that you and your friends are reading the same book for the same reason (because it’s a good story/popular/on sale from Weekly Reader or the airport).  But how often do you, as a person with diabetes, get to have a sneaky, secret, awesome reason to enjoy a book?

The truth about Stacey is that even though she’s a fictional voice, the diabetes is real, and it gives a little, “Hey, me too!” moment for kids and adults alike.

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