The Vibe: Supercalifragilisticexpialidocious!

A few days in and people are feeling both relaxed and invigorated - and for the first time in what seems like a millennium for many, they are feeling hopeful.

Little and not so little groups have formed in the hallway and seating areas, people make room for anyone needing a seat at the lunch table, conversations flow freely before the start of each sessions.

Parents are less stressed, roaming gangs of children, tweens, and teens wearing green and orange bracelets fill the hallways on their way to sessions.

Adults with diabetes have become part of their own D “squad(s),” and for many it’s for the first time since they’ve been diagnosed that they’ve connected with other adults with diabetes.

At FFL, nobody cares if people can see their pump or CGM. No-one bats an eye as

you whip out your glucose meter and check your blood sugar. It’s the norm and you are in the majority.

Beeps and alarms going off mid-conversation or in the middle of a session is no big deal, in fact, it’s commonplace.

Kids with diabetes being kids - and parents letting them.

Seeing people who started the week fearful, and are now anything but.

Dealing with a low blood sugar with friends who have been there - who sit with you while you wait it out and without making a ruckus - because they’ve been there.

And there are quiet moments requiring tissues because you’re about to full-on “ugly cry.”

But not because you’re sad. It’s the opposite. You are happy because you no longer feel alone - because you’re not.

Teens and tweens heading off to their perspective dances - no parents allowed.

Parents drop them off - and head to dinner with new found friends…or the pool… or they go on an actual date. Without having to worry about their children or their children’s diabetes, because those dances are staffed with people who understand and know what to do.

And some things catch you completely off guard: Like a parent and her teen walking up to you as you’re buying a late night oatmeal cookie, tapping you on the shoulder and asking: Hey…. Are you Kelly Kunik? You’ve had diabetes for a long time right? You blog? I’ve heard about you.

We (pointing to her teen) have some questions for adults with t1 about college, diabetes, and alcohol.

Yep. You could have knocked me over with a feather - and in a great way.

Takeaways From My Final FFL Sessions

The Banquet: Yes, I’m including the banquet in the sessions.

An evening of dancing, dining (from a tasty buffet complete with carb counts) with 2,074 green and orange bracelet wearers in fancy dress and celebrating 20 years of FFL is quite the thing to behold - and it’s pretty damn inspiring!

Parenting Lessons From “Two Dope D-Moms” And Including “The World’s Worst D Mom”

Regular parenting is tough, add diabetes to the mix and it makes a tough job even harder. Parents get a grade re: their kids a1c – or at least they think they do. I can relate, as an adult I feel the same way.

As the self-proclaimed “World’s Worst Diabetes Mom," Stacey Simms so eloquently stated: Talking about fears takes away the power of those fears.  Write them down, be frank and honest - and share your fears with your diabetes healthcare provider. 

Talk to your child about diabetes re: what’s developmentally appropriate for them.

Remember that having a fire plan for your family doesn’t need to mention burning to death.

Listening to your loved one’s fears, concerns, and points of view is important no matter what color bracelet you wear.

If you don’t make mistakes - you don’t know or gain knowledge. Same goes for your kids.

Author, Writer and D Mom Moira McCarthy told the crowd that children with diabetes learn advocacy skills as children and carry those skills into adulthood, advocating for themselves as adults with diabetes.

Moira also shared that she received advice at her first FFL convinced her to allow her t1d daughter to go away to college - and that learning to let your child DO is paramount - even when you’re scared to death.

Diabetes Burnout

Dr. Bill Polonsky of The Behavioral Diabetes Institute introduced those of us attending this session to the term: Allostatic Load. Which is the wear and tear of the body from stress - and normally associated with cardiovascular disease - but I agree with Dr. Polonsky -  it totally relates to diabetes.

Diabetes burnout is not only prevalent in the person with diabetes, but also parents, spouses, partners and healthcare professionals - all of whom experience emotional exhaustion, decreased empathy and lack of confidence, thanks to Diabetes Burnout.

Support Groups

There’s a multitude of official” closed door” support group meetings at Friends For Life - for all ages and no matter what color bracelet you sport.

Other impromptu support groups occur off of the cuff in one of many nooks and crannies at Coronado Springs between people who now classify themselves as “Friends For Life.”

I attended both - but in this bit I’m focusing on closed door support group sessions.

What happens behind closed doors, stays between those who attended.

But I will say that letting it all out, sharing… or not, and listening to others who “get it” gives you strength. And you don’t realize how much you need “to let it out and let it go” until you do.

I left Orlando before the farewell breakfast and that bummed me out. But I can tell you what happened because I’ve attended the 6 previous farewell breakfasts.

Massive amounts of hugging, picture taking, exchanging of numbers and promises to keep in touch throughout the year - through Social Media, phone, and meet-ups.

And there’s a tremendous amount of tears - happy tears, because you’ve either discovered and or come home to your Diabetes Tribe. And sad tears because you are leaving them.

But in your heart you know you’ve found your diabetes friends for life - you know that you will see them again - and you are forever changed.

In 20 years, FFL has grown from a group of parents who met up to experience Disney with other families living with diabetes, into a global phenomenon - expanding outside of the yearly Orlando Conference - and now includes a series of smaller satellite conference venues throughout the year in the US, Canada, and The UK.

Click HERE to learn more.

The Vibe: Positive, friendly, energetic!

Walking from my hotel room to the Opening Key Note breakfast buffet, I run into a green and orange bracelet wearing family. We exchanged “good mornings” and walked towards breakfast like long lost friends.

I hit the buffet, filled my plate, grabbed a coffee and found my friends in a Ballroom packed with 2,074 people. We talked, went over our schedules for the day, and chowed down.

After a performance by Crystal Bowersox (yes, THAT Crystal Bowersox), it was time for the Richard Rubin Memorial Opening Keynote by Dr. Desmond Schatz, who was discussing diabetes advances and roadblocks spanning the past 25 years.

Key Takeaways

Dr. Schatz believes that eventually, everyone in America will be screened for diabetes.

Paraphrasing Dr. Desmond Schatz: It’s time for combinations of diabetes drugs to be used - instead of a one-time hit - use them in ways that are impactful and pack a punch!

The pancreas is crazy sensitive and crazy complicated – and it’s difficult to study because touching a pancreas can cause bruising and pancreatitis.

Islets (as in Islets of Langerhans - endocrine cells that produce insulin, etc.) are different in children than in adults. Taking it one step further, Islets are different within individuals - which is why diabetes treatment must be personalized. YES!!!!

Like muscles, our immune systems have memory.

The keynote ended, the room emptied, parents made a bee-line to drop-off their “littles” to childcare and then head to their chosen sessions/support groups.

Older kids, tweens, and teens met their counselors in front of the grand ballroom and headed to their own set of activities.

I check my FFL app and realized that I was right where I needed to be for my first session of the day, “Positive Caregiving, AKA - Don’t Be The Diabetes Police”, presented by Dr. William Polonsky - President and Founder of the Behavioral Diabetes Institute.

Dr. Polonsky started off by saying - and I’m paraphrasing here: It’s imperative to have someone in your corner - as both a person with diabetes and a person who loves someone with diabetes.

Loving/caring for someone with diabetes is a delicate dance between positive caregiving and being a nag. Parent and partner insomnia is real, nagging isn’t helpful, neither is abandoning.

Orange and green bracelets need to locate the helping place in the middle.

Key Takeaways

Living with diabetes isn’t always easy - for the person living with diabetes or the people who love them.

And sometimes the people who love us the most (and I’m paraphrasing Dr. Polonsky) can accidentally cross over to the dark side, becoming experts at negative caregiving - saying and doing incredibly dumb things with the best of intentions, in the name of love and out of fear.

We are talking about the Diabetes Police: An individual/group of individuals that the universe has deputized to help a loved one with d to manage their diabetes - and whether they like it or not.

According to Polonsky, every DP Officer joins the ranks from a place of love - and usually in response to the person with diabetes deciding to state their independence and do the opposite of what the Diabetes Police decree, criminalizing the person with diabetes in the process.

Threatening the diabetes perp with complications doesn’t work.

Teens and the majority of humans aren’t concerned with long-term consequences, only short-term realities.

Unsolicited advice, (despite well meaning intentions) isn’t always appropriate or appreciated.

A few of the examples Dr Polonsky gave of what not to say to a person with diabetes:

You eat too much sugar. 

Isn’t your blood sugar a little high?

At least you don’t have cancer!

Challenging blood sugars happen.

Instead of blaming, say something like: Let’s figure out what to do now.

Acknowledge when your person with diabetes is doing something right - not just when they’ve screwed up.

Don’t always be in the face of your person with diabetes - but also don’t leave them alone with it.

Make the effort to understand diabetes from the POV of the person with diabetes.

And when it comes to your role, you don’t have to always try to fix -  just listen when they bitch about diabetes.

After having lunch with friends (both old and new), I headed to Finding Your Tribe Via Social Media. 

The panel discussion was moderated by Scott Johnson and Kerri Sparling, and panelists included; Cherise Shockley, (Founder of #DSMA, #WOCdiabetes, and The Blue Fridays Initiative) Michele Auerbach (creator of the Lovelightandinsulin blog, Co-Founder of the ChronicLoveClub.com, ) and Mary Lucas (Head of Influence Engagement at BeyondType1.org).

All familiar names and faces from the DOC.

Key Takeaways

People participate online for different reasons.

For instance, Cherise began participating in D Social Media when she joined tudiabetes.org back in 2008. because like Cherise, tuD’s original Founder, Manny Hernandez also had LADA Diabetes.

Back in 2008, not many people knew that LADA Diabetes was a type and or existed, let alone sharing their experiences online.

The Diabetes Online Community is continually evolving and changing. 

People in Diabetes Social Media spaces are now being invited to speak and hold seats at the table.  

The Diabetes Online Community is responsible for helping to direct how we want to be communicated to and with - we are changing the game and driving the agenda ourselves.

Both the diabetes industry and diabetes (dot) Orgs have changed because of Social Media.

In the session, Kerri reminded attendees and panelists alike, of the VERY LONG HISTORY of the diabetes online community - which has been around for decades, pointing to Jeff Hitchcock, who founded childrenwithdiabetes.com back in 1995 as an early example.

AOL chatrooms, D forums, and the early days of blogging were brought up by moderators and attendees.  

Diabetes blogs and online communities are not new.             

Sidebar: Scott started blogging about diabetes in 2004, Kerri started sixuntilme.com in 2005, and Cherise started the weekly diabetes #DSMA twitter chat in 2010.

On a personal note: I started diabetesaliciousness in 2007 and participated in AOL Diabetes Chatrooms in the late 90s.

The Diabetes Online Community needs to use diabetes media mishaps as teachable moments to educate the masses, not vilify.  

If you want to get to know the community better - look up different diabetes hashtags - not just your type of diabetes - there are more similarities than differences - and together we are stronger.

No matter the platform(s), don’t be afraid to let others know that you are new to diabetes social media.

It’s easy to get discouraged and overwhelmed because the landscape is huge.

Letting others know you’re a newbie helps you to feel less stressed and makes navigating through and between social media platforms and communities easier.

Never lose track of your WHY. As in: Why you posted. Why you started blogging.

Why you started engaging online.

Worry about the quality of support and communication - not about the number of followers you have.

There’s something for everybody in the Diabetes Online Community. Find what works for you!

My last session of the day was Language Matters -  presented by Jane K. Dickinson  - RN, PhD, CDE, 2018 AADE’s Educator of the Year.

Jane a t1D herself, likes to focus on living well with diabetes - and has done so for 44 years.

Key Takeaways

Acknowledge that parents/others who love people with diabetes are going to be more focused on a cure for diabetes - but until then, language makes a difference in the moment and in the long-term.

In diabetes, language makes a difference - both in the moment and the long term.

It's not just word choice that makes a difference re: diabetes, it's also the tone of the words and body language. As in a trifecta re: Language matters.

Ditch the labels. Attaching labels to people (good, bad, smart, stupid, non-compliant vs compliant) means that people (including healthcare professionals) tend to treat people like the labels they use to describe them.

Favorable labels, more often than not, lead to favoring by healthcare professionals.

Negative labels impact us negatively.

GOOGLE “Expectancy Theory.”

The words we as people, and people with diabetes, use to portray ourselves to the world, become the way the world sees us - and that’s a key takeaway worth remembering.

Introducing Friends For Life

For those of you that don’t know, Friends For Life is an almost weeklong conference for people with diabetes held every July at Disney’s Coronado Springs in Orlando, Florida. 

Focused on children with diabetes, adults with diabetes and their families, and providing opportunities for all of the above to learn about the latest research, trends, treatments and technology in diabetes. And there is no other conference like it.

A place where green bracelets outnumber orange, carb counts accompany most meals and the conference halls are abound with laughter and Low Blood Sugar stations.

A conference with sessions for all ages and covering a myriad of diabetes topics across the board! 

A place where friends for life are made and diabetes stress washes away.

The Backstory…

1995: Children With Diabetes founder and President Jeff Hitchcock created the website childrenwithdiabetes.com because his daughter Marissa was diagnosed with t1 in 1989, at the age of 2.

1999: Laura Billetdeaux (CWD Vice President of Education & Programs) and her family - including her t1 son Sam, were planning a family vacation to Orlando.

Laura reached out to Jeff and other Children With Diabetes parents asking if they wanted to join her and her family on a trip to Disney.

550 people (110 families) said yes, and the first FFL conference was born.

20 years later, the 2019 conference boasted 2074 attendees - including a family from New Zealand!

2019 also marks the first time that there were more adults with diabetes than children.

It’s Personal

In 2010 I attended 1 day of FFL at the tail end of another conference held at the same hotel.

In 2012 I attended my first full FFL - ten months after my mom died from sepsis and two months after our family home was sold and torn down.

Burned out in all dimensions - I needed to decompress, I needed a vacation, I needed to know that everything was going to be OK.

FFL provided all of the above and more.

I’ve been a conference volunteer since 2013, until this year, when Ascensia Diabetes Care hired me to write about the conference as an attendee!

The Vibe: Positive, all encompassing, at times incredibly overwhelming - but in a great and exciting way.

My First 24 hours at FFL 2019

Land in Orlando, immediately grab a Cuban coffee, then head towards baggage claim and catch Disney’s Magical Express to the Coronado Springs Resort.

Exiting the Magical Express I spy 3 women - two wearing orange Disney Magic Bands, the third sporting a green DMB. I walk over and ask if they are here for FFL.

The answer is yes, the ice is broken and we start chatting away!

Sidebar: OK, Let’s Talk About The Bracelets

Green for people with diabetes, orange for those who love us.

FFL bracelets are magic, acting as both key and talisman for participants.

They allow entry in the world of FFL, while providing you with community and strength in the process.

Sidebar: Those with celiac/gluten issues sport an additional yellow bracelet and have their own GF Buffet stations.

After checking in, I make the trek to FFL registration. 

I am now in my happy place. I get my conference packet, tee-shirt, and name badge - and lots of hugs along the way.

And I am given and proudly put on my green bracelet.

I immediately meet a FFL First Timer named “Miss Sassy,” a three and half year-old girl with t1 who noticed my green bracelet and promptly exclaimed: Hey mom, her have a diabetes too!

Together we show off our FFL bracelets a’la Wonder Woman style, showing the world that we are part of the FFL tribe.

Cut to the next morning and attending my first in a round of sessions: Pilots With Diabetes - Setting The Record Straight, The Sky Is Not The Limit. The Speaker is Douglas Cairns - creator of flyingwithdiabetes.com, cofounder of pilotswithdiabetes.com and author of “Dare to Dream: Flying Solo With Diabetes.

Born in Scotland, Douglas Cairns was living the life of a British Royal Air Force jet pilot.

At the age of 25 he began losing weight and feeling horrible - he knew something was up.

Douglas feared going to the doctor because he was afraid he’d hear something he didn’t want to. That’s exactly what happened. The doctor told him that he had t1 diabetes and his RAF career was over.

In 1989, there wasn’t a country in the world would allow a person with diabetes to fly.

Forced to leave RAF, Douglas switched to a career in asset management.

In 1999 learned that he might be able to fly again in Thailand - where he was living at the time. And fly the friendly skies he did!
Douglas was able to obtain a Third Class Medical License as a private pilot (he wasn’t allowed to fly alone,) eventually becoming part of a gang of diabetes pilots who fly together, set world records, and work to change the rules of flight to include people with diabetes.

Since then, Douglas has done incredible things - like (but not limited to) flying around the world (and is the first t1d pilot to do that), setting a world record with fellow t1 pilot Thor Dahl, flying non-stop and visiting the most states - 29 states, in a 24-hour time period - all while advocating for pilots everywhere (aspiring and existing, private and commercial) with t1 diabetes.

Interesting Facts Re: Flying/Flying With Diabetes

• The more complex the aircraft, the easier it is to fly.
• Diabetes or not, insurance won’t cover anyone flying over the North Pole.
• It’s easier to hit the autopilot while low than to actually land the plane.
• Canada requires pilots with diabetes to wear insulin pumps. Europe does not.
• The language of aviation is similar to the language of diabetes - THINK ABOUT IT.

My next session, “Docu-Diabetes” was part session, part film fest - spotlighting 60 second videos re: life with diabetes and created by FFL attendees who submitted their entrees by the July 12 deadline.

The 5 videos with the most votes (obtained by multiple Docu-Diabetes sessions) win trophies and have their videos played at the Banquet Dinner.

The room was packed with green and orange bracelet wearing tweens and a smattering of adults. We watched the videos, laughed in all the right places, filled out and handed in our ballots, then headed to our next session.

Sidebar: Two of my faves: Adult t1d Becky Thompson’s 365-day video montage to celebrate her 10th year of living with t1d and another video of the trials and tribulations of being on hold with your health insurance company FOR EVER.

The Future is Now: Omnipod

In this session, Trang Ly, Insulet’s Medical Director, talked to the group re: the history of Insulet, (founded in 2005,) the Omnipod DASH™ Insulin Management System and briefly mentioned the Omnipod Horizon Automated Glucose Control - their developmental Hybrid Closed Loop System.

Takeaways

150 thousand people use the Omnipod – that’s 3 times the daily visitors to the Magic Kingdom!

The DASH™ PDM is an Android smart phone on lockdown - as in we can’t talk/text with it, but can mirror the info via our smart phone.

A Smart Phone as PDM - Why? Because it brings both the modern and the familiar of everyday tech into insulin therapy and is an indication towards future technology - as someday we may be bolusing via cell phones.

You can connect to Wi-Fi to see DASH™ data remotely on other devices.

In the US, the CONTOUR®NEXT ONE meter is supplied with the Omnipod DASH™ and is designed to link directly via Bluetooth with the DASH™ PDM.

That same day and in conjunction with FFL, Insulet launched their new microsite, advocacyforaccess.com, which focusing on educating, empowering, and mobilizing the diabetes community efforts re: affordable access towards diabetes tech and meds.

And with that, the day’s sessions were done. I met friends for the opening of the Exhibit Hall, we checked it out and then grabbed dinner. Afterwards I headed back to my room knowing that the first 24 hours were behind me and excited for what was to come.

I was exhausted. I was happy. I was home.