Skip to content

Posts from the ‘Diabetes Community’ 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.

 

ONE Great Weekend.

Diabetes for 30+ years means you’ve earned a “legend” sticker.

“So what made you want to do the TCOYD ONE conference?” I asked the TCOYD team.

“We were sitting around one day having drinks and just said there is so much stuff coming out in the field of type 1 diabetes that we NEED to put on an event with the absolute best of the best speakers and invite every person with type 1 diabetes around the world who we can get the invite in front of,” said Dr. Steve Edelman, Professor of Medicine at the University of California San Diego and Veterans Affairs Medical Center.  He’s also the founder of Taking Control of Your Diabetes (TCOYD).  “Oh my god, the conference was an incredible weekend of palpable excitement in terms of learning the most up-to-date real information about managing diabetes but also the emotional outpouring was not anticipated or expected. Something I have never experienced in my personal or professional life.”

This is saying a lot, since Steve has been living with type 1 diabetes for almost 50 years.

Tricia Santos Cavaiola, MD and co-director of the TCOYD Type 1 Track, highlighted the differences between ONE and the other TCOYD conferences.  “The biggest difference with this conference was putting more emphasis on living life well with type 1 which is why we tried to make it a retreat in addition to the typical education component. Looking back on this weekend, my favorite part was just seeing how happy everyone was, from walking around the health fair, to huge turnouts at the group activity/exercise sessions, to laughing at the talks, to watching EVERY SINGLE PERSON walking around with a smile on their face. TCOYD conferences always leave me with a ‘feel-good’ feeling at the end, but this one topped them all.

Jeremy Pettus, MD (co-director of the TCOYD Type 1 Track), echoed Steve and Tricia, adding, “I think I’m just proud to have been a part in making it all happen!”

The TCOYD ONE conference that took place last weekend in San Diego, CA was nothing short of amazing.  PWD hanging out, learning from one another, and sharing their diabetes lives without hesitation or judgment is the kind of connection that benefits people’s emotional health as well as their blood sugar numbers.

Nothing leans into “good health” quite like “good friends.”

Ann Ryan Donahue, 46 years into her life with type 1 diabetes, said, “It was clear that this was a dynamic group of T1’s who have all learned to make something positive out of something negative … a room full of progressive, motivated, positive individuals with T1 … and what a great forum to share all the ‘tricks of the trade.’ This may rate as the ‘hungriest group begging for information’ that I’ve ever been a part of.”

I’ll second that completely.  In addition to giving a talk about my 30 plus years with type 1 diabetes, I lead two discussions about the mental/emotional health surrounding the issue of diabetes-related complications.  The stories that were shared in that room can’t be summed up in a blog post or a paragraph.  People were honest, and raw, about what they were dealing with or what they were fearing, and the connections in that room were instant and intense.  I could not be prouder of our community for coming together and talking about where their hopes and fears are rooted.  This is what it’s about for me; connecting with others in efforts to live big, and live well, diabetes be damned.

“It felt so great to be with so many people who understand and know how challenging life is with this condition,” said Julie Forsgren, living with type 1 for over 40 years.  And this was a theme among the attendees, the peer-to-peer connection between PWD.  “I loved how even the doctors and expert speakers were also type 1. It felt SO good to be among others who really get it! The food was a delicious bonus, too. It was so exciting to hear about the developments in improved technology from the CEO’s of the companies working on them. It was an inspiring and informative weekend full of impressive speakers. Such a great feeling of comfort and understanding being among my peers!

“When I looked up in yoga and realized that everyone in that space, at that moment was present with peaceful intentions AND diabetes, it absolutely took my breath away,” said Cynthia Celt, T1D for 20 years, about being part of the yoga group in the morning.  “It was one of the most awestruck diabetes moments I’ve ever experienced. There was no worry of a CGM alarming or the disapproving glances that sometimes accompany a yogi toting her phone into class. It was the first time I have ever felt 100% part of ‘the group’ rather than an outlier.”

Rachel Mercurio hadn’t ever met a person with type 1 diabetes “in the wild” before. “Words cannot adequately describe how incredible this weekend was for me. Before this conference, I didn’t know a soul who had T1 ‘in real life.’ Of course I knew other T1s were out there, but I have always felt like I was alone on an island. Hearing the CGM and pump beeps throughout the weekend was so comforting to hear. Warm, lovely people came up to me and introduced themselves to me. For the first time in my life, I was talking about diabetes without educating anyone about this disease, because you all get it. The presenters are true advocates. I knew this was going to be a great weekend, but I didn’t quite expect an impact of this magnitude.”  (And for the record, I had the honor of meeting Rachel and she’s a force.  And her neon yellow hair is awesome.)

It was called ONE but not because you’re the only one.  You’re ONE of many, and you are not alONE.

Thanks to the TCOYD for hosting this event, to Tandem Diabetes Care for sponsoring my keynote and breakout sessions, and to every person living with diabetes who came to find support, camaraderie, and the other ONEs like them.  See you at the next ONE!!

Look to the Edges.

I saw this thread on Twitter last night from Dr. Jake Kushner, Chief of Pediatric Diabetes & Endo, BCM/Texas Children’s Hospital in response to a person with type 1 diabetes living without health insurance. Here is her account of what that experience is like.

You can throw whatever stones you’d like about people needing to pull themselves up by the boot straps or whatever you want to use to explain their perceived inability to fix their dire situation, but I read her words and they were overwhelming. I was diagnosed with type 1 diabetes at the age of seven and right away, I was on my parents’ insurance policy and they fought the access battles for me. I stayed on their insurance through college and started my “real job” two days after I graduated, on my own insurance policy and finally understanding what it was like to ensure I was insured. Now, I have the support of my family and access to insurance coverage that, for the time being, covers what I need and also a fair amount of what I want.

I am lucky. I know this. I appreciate this more now, in these strange political times, than I ever have before.

Dr. Kushner mentioned “the edges” of the diabetes community, where people are crowdsourcing funding for their insulin or forgoing other bills in order to afford their supplies. Where people are struggling. Where people are dying. These stories aren’t often heard. But they need to be. Reading Ana’s story didn’t open my eyes to the fact that these stories exist, but more than they need to be told and amplified and heard.

They need to be heard.

“We need to look to the edges of our T1D community, away from the center. Who is having trouble? Who struggles to get care? How can we help?”

If you feel as though you are on “the edges” that Dr. Kushner mentioned, and you have a story about diabetes, access, and what real life is like with this disease that needs to be heard, please share it. If you’d like to share it here, please email me. I would really, really like to share this platform for stories that make a difference, and those stories are so much bigger than mine alone. Our collective is powerful.

But whatever you do, please don’t stay quiet. We need to hear your stories.

Every single person with diabetes counts.

Your moop or mine?

The first flight out was jumbly, with the plane riding into some kind of air pocket right after takeoff, eliciting audible screams from some of us.  (No, not from me.  Turns out that, if things get scary, I resort to frantically saying the F word under my breath whilst clutching the arm rest.)  Once the plane hit some smooth air, everyone breathed a little easier and tried to mellow out.

In the silence of folks calming down, I heard that low, moop sound that the Dexcom G5 app makes when it is ready to be calibrated, like the sonar ping from a submarine.  It’s subtle but unmistakable.

Moop.

My sensor was fine when I boarded the plane.  I pulled out my phone anyway, just to make sure my CGM wasn’t crying for attention.  Huh.  Not me.  Sliding the phone back into my purse, my peripheral vision caught the movements of the woman next to me, who had her phone in hand and I could see the little pigeon head I knew by heart.

“Type 1?”

She grinned.  “Yeah.”

“Me, too.  Since I was seven.”

“I was 13.”

“I thought it was my CGM that needed to be calibrated,” I said, gesturing towards my phone.  “But it was you this time.”


It’s the thread that runs through all of us, that instant and unfettered understanding of the thing that simmers on the back burner some days and threatens to burn the house down on others.  I know that feeling. So did the woman next to me.

Instantly, she became familiar. I didn’t know her name or where she lived or what kind of history she brought on board with her, but there was an instant connection of, “Yeah, me too. I know that thing you have. I also moop.  And beep. And check. And worry. And celebrate. And dose. And fight. And laugh. And keep perspective. And move on.”

Follow

Get every new post delivered to your Inbox

Join other followers