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Posts from the ‘Diabetes Advocacy’ Category

Magic Kingdom, Magic Bathrooms.

“Is that an insulin pump?”

I was standing outside of the stall in a bathroom in Tomorrowland, waiting for my daughter to wash her hands.

“Yes, on my arm here?  Yes, it is.”  I pointed to the infusion set on my right arm, the tubing snaking back up my sleeve into my dress.

“Oh!”  The lady smiled really big, relieved.  “Do you mind if I show my son when he comes out of the stall?  He’s five – was diagnosed with type 1 diabetes when he was three.”

“Of course!”

The bathroom continued being a bathroom for a minute more, then her son came out.

“Henry, this lady is wearing an insulin pump.  Remember I told you about those?  Look, it goes right into her arm here!”

His little face was so little, just a few years older than my own son, a few years younger than my daughter.

“Hi, Henry.  I’m Kerri.  I was diagnosed with diabetes when I was seven.  This insulin pump is what I use instead of shots to take my insulin.  Want to see?”

He nodded.

“This is the little spot where the insulin goes in, and this tube connects here,” I pulled my pump out so he could see it.  “And the insulin is stored in here.”

Henry’s mom smiled.  “I was telling you about this!”  She turned to me.  “I was telling him about this.”

“If you touch this screen, it lights up.  Want to try it?”

His face broke into a grin.  I showed him how to tap the 1 … 2 … 3 buttons on my t:slim X2 to wake it up.  “If I wanted to take some insulin to have a snack, I’d press this button, tell it what to give me, and then I’d be all set!”

I turned to his mom.  “Are you guys here for the conference?”

She looked confused.  “What conference?”

Showing her the green bracelet on my arm, I explained that we had just spent the week at Friends for Life, hanging out with friends and making diabetes feel commonplace for a few days.  “So many families go.  Some parents bring their kids who have diabetes.  And in my case, I’m the one with diabetes, so I bring my kid to meet other kids of parents with diabetes.”

(This whole conversation is taking place while our kids are washing their hands and playing with the hand dryers.)

Before the next stall could flush, we’d figured out that we lived close-ish to one another, and that we had some common stomping grounds.  At my urging, Henry’s mom opened my phone and started an email to herself.

“I’ll send you an email after we leave the park with some details on the conference.  And if you have any questions about insulin pumps or connecting Henry with other kids who have diabetes, or anything at all about anything, I’d be so happy to connect,” I said.

All hands washed, we shook them, laughing about the awkwardness of meeting in a bathroom.  And then I sent my now-new favorite email intro ever, opening with, “We just met in the bathroom at Magic Kingdom (great way to start an email, right?) and I wanted to email you right away.

A few days ago, I heard from Maggie.  Our bathroom connection has come full circle.  Advocacy can happen anywhere: in a conference hall, on an airplane, in the grocery store.  Even in a bathroom at Disney World, our community is flush with connection and possibility.

Recipe for FFL.

Want to make Friends for Life?  Here’s how:

Ingredients:

1 large Coronado Spring
Millions of humidity molecules
3,000 family members who live with diabetes
1,000 (estimated) Mickey Mouse waffles
22 bowls of glucose tabs
Dozens of supportive siblings
Hundreds of orange bracelets
Hundreds of green bracelets
Several buffet tables of carb-counted food
Add sports central, support sessions, and learning workshops to your taste

Directions:

Take your humidity molecules and mix with the Coronado Spring.  They will combine to become as hot as possible.  Move into your hotel room and be thankful for the conditioned air.

Assess your pancreas. Salute your pancreas if it functions properly and don your orange bracelet with pride. If your pancreas is a thumbs down as far as insulin production goes, put on your green bracelet with pride as you are not alone with diabetes.

Attend focus groups and meet with companies who aim to make a difference in the lives of people with diabetes.  Between meetings, visit the pool and go down the waterslide, mingle with CWD staff and friends at Pepper Market, and give a happy wave to strangers-who-are-not-strangers.

Have fun.  Enjoy healthy meal options that are carb counted (and gluten-free if that’s your jam).  Dance with the DJ at the banquet.  Meet the Disney characters at breakfast.  Get a retinal screening.  Learn about things like diabetes and exercise, and going to college with type 1 diabetes, and new technology options, and parenting and pregnancy.  Collect at the social spots in the evenings and talk about LIFE and some diabetes but not entirely diabetes.

Be thankful that companies and sponsors and donors have come together to make an event like Friends for Life possible.  Thank them for their financial contributions and support.  Thank the fellows.  Thank the scholarship programs.  Thank the staff for their tireless efforts.  Thank your friends and families for being part of this experience with you.

Rinse and repeat for several days, until your heart is full and your voice is gone and the corners of your mouth feel stretched to the brink from smiling.

Disclosure:  I could not be prouder to be a member of this organization as a board member, part of the adults with type 1 diabetes faculty, and a grateful PWD attendee.  My travel and lodging are covered by the organization, but my opinions and dedication to the cause are my own.  Huge thanks to the staff, supporters, and sponsors who make Friends for Life possible.  

If you’d like to make a donation to support CWD, please click here.

 

Bright Spots & Landmines: An Interview with Adam Brown

Adam Brown has written a new – TERRIFIC – book for the diabetes community, full of the same brilliant, actionable advice that we’ve come to happily expect from his diaTribe columns.  His book, Bright Spots & Landmines, is billed as “the diabetes guide I wish someone had handed me,” and that sentiment is absolutely correct.  This book is a powerful tool that people living with diabetes can pour through and make their own, with moments of reflection and inspiration interspersed among research, recipes, and amazing graphic design.  
Bright Spots & Landmines by Adam Brown
Kerri: What inspired you to write Bright Spots & Landmines?

Adam:  When I started writing my diaTribe column (Adam’s Corner) four years ago, I never would have guessed that more than half a million people would read it! I’ve received hundreds of emails and comments sharing gratitude and kindness, which is what motivated me to do something loftier with Bright Spots & Landmines. Each Adam’s Corner column stands alone, so I wanted this book to be a single guide that distills all the most helpful diabetes tips I’ve learned in four areas: food, mindset, exercise, and sleep.

Kerri: What makes Bright Spots & Landmines different from what’s already out there? 

Adam:  I agonized over this question before writing this book – I wanted to make sure Bright Spots & Landmines would add value!

From the beginning, I had two major goals with this project: (i) write an extremely actionable book that anyone with diabetes can use to improve some aspect of his/her life immediately; and (ii) give it away at as low of a price as possible! Based on the early reviews and the free/name-your-own-price PDF download, I’m so excited about the outcomes. A few other things come to mind:

Bright Spots & Landmines is written from a person-with-diabetes perspective and based on more than 10,000 hours writing professionally about diabetes, over 50,000 hours of personal learning from CGM, and everything I’ve taken away from hundreds of diabetes conferences and leading thinkers.

The book focuses on food, mindset, exercise, and sleep, which are not often addressed in the same actionable diabetes guide.

Bright Spots & Landmines went through an extensive feedback process, with a combined 500+ years of diabetes experience between all the reviewers – yourself included!

Last (and perhaps most important), my girlfriend, Priscilla Leung, did all the wonderful illustrations and graphics in the book – these really make the writing come to life. I’m as proud of how it looks as I am of the words!

Kerri: How do you want readers to feel after reading your book?

Adam:  Uplifted, positive, and ready to try some new things and experiment! I hope people leave Bright Spots & Landmines with tangible actions and nuggets they can use to improve their life with diabetes – whether it’s a recipe I eat, a quote I like, or an answer to question that the book poses to them.

I hope this book also reminds readers that we all have moments of enormous diabetes frustration, self-sabotaging food decisions, negative thoughts and questions, busy days where exercise is hard to fit in, and nights without enough sleep. Bright Spots & Landmines shares my toolkit for navigating the choppy, unpredictable waters of living with diabetes. I hope it puts some wind in readers’ sails.

Adam Brown, author of Bright Spots & Landmines

Kerri: Is Bright Spots & Landmines made up of rules for living well with diabetes, or are these suggestions for people to implement in their own lives?

Adam:  Awesome question! This is a book filled with things that have made an enormous difference in my life with diabetes. By sharing them, I hope readers will glean tips they can try or adapt to fit their needs.

For instance, chia pudding is one that has been fascinating to follow. Some readers make it exactly like I do and love it! Others have tinkered with the recipe to fit their needs. And for others, it’s not a fit. I expect this variance with all 43 Bright Spots and 16 Landmines in the book – some will resonate, some will need to be adapted, and some won’t apply. This is why each chapter – food, mindset, exercise, and sleep – concludes with Bright Spots & Landmines questions so readers can identify what works for them.

Kerri: Is this a book you would want to give newly diagnosed PWD? Long-timers? Caregivers? Is there something for each group in this book?

Adam:  All of the above – and I don’t say that lightly. Every one of these groups read drafts of the book. A mom of a newly diagnosed son read Bright Spots & Landmines, as did a woman with over 50 years living with diabetes. Other readers fell in between (see testimonials and Amazon reviews). I even had some people with prediabetes read the book and find it useful!

Kerri: What was your favorite part to write?

Adam:  I love the Mindset chapter most of all, even though it comes second in the book. (Of course, Food had to be first in a diabetes book.) The right Mindset is like rocket fuel for living better with diabetes – it underlies everything and can provide such a boost, even on the toughest days. This chapter shares lots of tips and tricks related to perfectionism, motivation, stress, goal setting, hacking my brain and habits, and beyond. I’m a voracious readers of psychology and self-help, which is probably why I had so much to say in this chapter.

Kerri: What was the most challenging portion of this book for you to tackle?

Adam:  I struggled a lot with the title. We went through many iterations, including “Diabetes Bright Spots & Landmines” (too long), “Solving Diabetes” (a bit too presumptuous), and the original (read: not great) title, “Make Diabetes Awesome.” Probably the worst title in the original brainstorm was, “Diabetes should be less awful and more awesome.” Haha! I’m so happy about the final title:subtitle combination, since it really illustrates the book’s framework and why I wrote it in the first place.

I also spent an enormous amount of time trying to figure out how to make the book as low cost as possible, but still look amazing. I originally wanted full color interior printing, but this made the book twice as expensive in paperback. I wasn’t willing to accept that tradeoff. I love the current model of a name-your-own price PDF download in full color, a paperback on Amazon for under $7 (the black-and-white interior still looks really good), and a Kindle version for $1.99.

Funnily enough, the writing process was the easiest part, though getting feedback on the book was always scary. It’s never easy to show your work to other people.

Kerri: What’s next, now that the book is live?

Adam:  For now, I’m laser focused on finding every possible avenue to get this book into people’s hands – whether that’s print copies or free digital versions.  And we will certainly do follow-up Adam’s Corner articles that talk about different pieces of the book.I’d also love to do an audio version, video snippets of different Bright Spots & Landmines, weekly Facebook Live Q&As with readers, and perhaps translation into other languages. But whew… one thing at a time! If you have any ideas you’d like to see, please let me know at brightspots@diaTribe.org!

Kerri: And how can people find more of your writing?

Adam:  Adam’s Corner is here on diaTribe.org, diaTribe’s Facebook page is here, and diaTribe’s twitter is here (@diaTribenews), and my twitter is here (@asbrown1).

Kerri:  Thanks so much for chatting, Adam.  Also, you adopted a dog? Awesome!  What kind?

Adam:  A mini schnauzer mix! I talk about him in the introduction and the exercise chapter 😃 A dog is an incredible Mindset and Exercise Bright Spot, all in one package! I’m a huge convert, despite my skepticism when Priscilla wanted to adopt. Definitely one of the best life decisions we’ve made in the past year.

  *   *   *

Thank you , Adam, for taking the time to talk and also for creating such a powerful resource for the diabetes community.  (And I have a soft spot for Adam because he has never yelled at me, despite my occasionally being spotty back in the day on getting my diaTribe columns to him on time.  To that same end, look for a reboot of the SUM Musings column over at diaTribe in the coming weeks!)  

Adam is patient, ridiculously well-informed, and when it comes to bright spots in the diabetes community, don’t look directly at Adam or you may burn your eyes.  Congratulations again on the book launch!!!  

What I Did On My Bloggy Vacation.

Whoa – this was the longest unintentional blog break I’ve taken in ages. Maybe ever. And it’s not like I didn’t have diabetes-related things to say or conversations I wanted to contribute to.

I just didn’t feel like writing. Which is weird. I usually feel like writing.

After the Target low, I was on break with my family for a while, and then in Dallas for a TypeOneNation event.  I took a short pump break. I saw some PWD in the wild while traveling and the urge to hug them was unrelenting. I read a bunch of crap about “diabetes in a cup” and had that desire to climb on a soapbox clutching a unicorn frappuccino in one hand (but not taking a drink of it ever because my insulin has better things to unpack and also I keep picturing a liquified unicorn, which grossed me out further). I read a blog post and watched our community react to it. And I saw a bunch of angry Tweets and uncomfortable people and hurt feelings and just so much stress.

Oh, never mind the fact that I open the CNN homepage whilst looking through my fingers because there’s always some new yick storm.

I needed a breather.

Random street art ❤. @spacegirlw, thought of you.

A post shared by Kerri Sparling (@sixuntilme) on

So I guess I pulled back for a while. We celebrated Birdy’s seventh birthday as she crossed that threshold into an age that I remember (I totally remember second grade and my friends back then and riding my bike in the neighborhood and reading books and all that stuff – I have some clear and vivid memories of seven. I was also diagnosed with diabetes that year, so I keep looking at her through that lens, wondering if I appeared simultaneously so big and so little to my own mother.) We traveled without the Guy for the first time and it was kind of stressful for me, being away from my smallest little, but made me grateful for my mom and stepfather once again, how they are always willing and thankfully able to mind my kid(s).

… oh, and I am the last person on the planet to learn that if you are typing a text message on an iPhone and you turn the phone sideways, you can create a handwritten text message. THIS IS MY NEW FAVORITE THING and I am madly in love with this feature. I have sent several ragtag cats, two ten gallon hats, a pair of jeans, a plane that looked more like a shark, a bunch of grapes, and boobs to unfortunate recipients. Anyone in my contact list is at risk of receiving nonsense and I AM NOT SORRY.

After a few days, I felt a little clearer. I cracked open my email and confirmed calls for the coming week, met deadlines that were looming, and created a document titled “Shit to Write About” with bulleted ideas of shit to write about. We paid our taxes. The tulips bursted up in the front lawn and they look like an army of happy. I felt a little bit productive, not so drowning in diabetes, and kind of ready to open a “New Post” tab on my blog platform.

So I did. And here I am. And here it is.

It was nice to work a little bit on a non-diabetes writing project I’ve been tooling around with. I liked sending the plane shark. I really enjoyed dealing with diabetes as a stand alone thing instead of repeatedly documenting it. Diabetes is all day and sometimes it needs to be tabled as a content source, with “shit to write about” waiting until I feel ready.

Which now I do.

Plan Your Conversation.

“Do you understand everything we’ve talked about?”

Nods.

“Do you have any questions?”

Shoot.  I did, on the ride up here.  I had a whole pile of concerns and questions, but they disappeared awkwardly upon sitting in this chair.  And sometimes, even when I remember what I wanted to ask, I end up somehow caught up in the flurry of discussing medications, reviewing lab work results, physical examinations, and scheduling next appointments.

And admittedly other times my question stays at the back of my throat, either too shy to be asked or makes me feel weirdly vulnerable.

Despite feeling empowered as a patient and having a high level of health literacy, I sometimes sit in the doctor’s office and my mouth forgets to make words.

The team at the Patient Revolution (disclosure:  I’m on the board and also involved with content) has created a Plan Your Conversation exercise to help patients ensure that their concerns are addressed during their visit.

The simplicity of this exercise (created before I joined the team, so I’m not tooting my own horn 🙂 ) is where its power lives:  the action of writing down concerns and expectations makes them easier to articulate.  And hey, if you feel weird saying these things out loud, you can always physically hand the card(s) over to your clinician.  Whatever gets the words out of your face and into the discussion.

You can plan your conversation through the online tool or download a PDF of the cards to print out.  You can also watch this video about The Patient Revolution to get a feel for how storytelling is being brought to the forefront with this effort.  

Sign up for updates on the Revolution efforts here.

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