Read the reports from the Children With Diabetes 22nd Annual Friends For Life Conference

Orlando, FL, USA, July 6-11, 2021

With that being said, I’m going straight to the key takeaways from the majority of the sessions I attended because there’s a lot to cover.

Inclusion, Diversity, Community 

Inclusion, diversity and community were words heard throughout this year’s conference, beginning with the amazing Richard Rubin Memorial Opening Keynote speech, presented jointly by Cherise Shockley (LADA diabetes) and Leigh Fickling, mom of a CWD.

Two women. Two very different diabetes stories who learned from one another and encouraged everyone to not only share our own stories, but to listen and learn from others, no matter the diabetes type.  These ladies were an inspiring reminder that in life and life with diabetes…inclusion, diversity and community are not only key, they make us stronger.

As people with diabetes, we want/strive to be acknowledged, included, and understood by the masses. People with diabetes also need to practice inclusion and diversity within our own community when it comes to different diabetes types and cultures.

Speaking of Differences that Collectively Make Us Stronger As A Community…

“Unifying Differences: Conversations About Culture And Diabetes” was the name of an eye-opening session. Sitting in a room with diabetes POC dialoging with everyone in the room about their experiences (diabetes and other) openly and honestly and in safe space.

Things I’m still Thinking About:

Noor Al Ramahi, (T1, mom, Muslim, citizen of The United Arab Emirates of Palestinian heritage) asking us to “re-evaluate how you think of people of color — it’s not just black or brown.”

Phylissa DeRoze, PhD, LADA – as a PWD she pointed out that she wears a purple sparkly insulin pump not because of purple and sparkle, but because she never wants police to mistake her insulin pump as a gun and stated: Racism impacts the way we choose our devices.

A black insulin pump being perceived as weapon was something that I never thought about when purchasing my insulin pumps. I never had to.

That was such a lesson in my own privilege and it made me angry that POC with diabetes have to calculate that equation of racism into EVERYTHING.

Sidebar: In 2012 I wrote a blog post about a woman’s insulin pump being mistaken as gun by TSA at LAX. I was infuriated and couldn’t comprehend how TSA could mistake an insulin pump for a gun. Now??

At FFL Inclusion Means Everyone

Between sessions, a friend and I were chatting about how FFL made us feel.

Taking her name badge dangling from the rainbow lanyard from around her neck (that accompanied every FFL badge this year) she pointed to the LGBTQ ribbon attached and said: See this? THIS makes me feel safe.”

I’ve attended a lot of diabetes conferences, I’m straight, not feeling safe because of my sexual orientation, not a worry. My friend felt safe because of FFL putting the messages of inclusion, diversity, and community into action. BRAVA.

Diabetes Misdiagnoses

In another session, Dr. Phylissa DeRoze shared her diabetes story.

After receiving a T2 diagnosis in 2011, she created her blog and became an active participant in the diabetes community. After years of struggling with her health (while traveling the globe for work and giving birth), she finally found answers and a proper diagnoses of LADA Diabetes. 

Dr. DeRoze, “is living proof that even with a PhD, black women deal with medical bias.”

Her advocacy role is evolving and one of her primary goals is eradicating racial bias in ALL the diabetes types.

Navigating Health Insurance and Diabetes On A Budget Sessions

“The US Healthcare system including verbiage is clear like mud.” Stewart Perry

Things That Stuck:

• People with diabetes meet their deductible 100% of the time.
• Some companies use fiscal year as start dates for insurance instead of calendar year start dates.
• Vision and Dental have separate
• PBMs (Pharmacy Benefit Managers) control the pricing of drugs, and insurance companies control PBMs. How’s that possible? While PBMs claim they exist to keep the cost of our medicines down, they are in fact actually owned by insurance companies.
• If you’re a PWD, a high deductible plan is normally not a good choice.
• Choosing an HMO can equal more surprise bills.
• Honestly, this session could have gone on for weeks because not only is there so much information, that info changes on a daily basis and by state. Oh yeah, health Insurance is different in every single state.
• IMO, there’s nothing united when it comes to healthcare in the “United States of America.”
• “If you don’t walk out of this session ticked off, there’s something wrong.” George Huntley

No worries George,  I did.

Diabetes On A Budget: This session led by PWDs who practiced what they preach and provided D money saving tips and tricks like….

Copious Notes Are Key

Keep a notebook and take detailed notes every-time you speak with your Health Insurance Company - including date, time, name of the person you spoke with, and your insurance issue(s).

Insulin Affordability Options

GetInsulin.org

• Tap Insulin Manufacturers Assistance Programs
• Research what Diabetes Programs exist in your state
• Ask your doctors for samples
• Call your lawmakers and let them know how much your insulin costs

 Knowing What Insulins Are Available Over The Counter And Where

• Walmart’s Relion Analog Insulin - A generic version of Novolog costing $72.88 per vial and $88.85 for a package of Flex-pens.
• Educate yourself how Walmart’s older (antiquated) Relion Insulins work. These insulins are $25 a vial and require education before using and include:
• Regular Insulin - 30 minutes before a meal and up to 6 hours after
• NPH 12 hour life span
• 70/30 - twice a day

Compare, Call, Prepare

• Compare diabetes tech costs/coverage on your policy’s DME (Durable Medical Equipment) verses your pharmacy coverage.
• Take the time to find out what all your meds and diabetes hardware cost with/without insurance. Sometimes things are cheaper if you don’t go through your insurance.
• Learn the difference in cost for your preferred insulin verses your insurance company’s preferred insulin.
• Call Customer Support every time a CGM sensor, insulin infusion site/pod fails so you can get them replaced.
• Traveling out of state/out of the country? Invest in medical travel insurance for the duration of your trip. If you end up in the hospital out of state or outs of the US, your personal health insurance won’t cover you if you get sick or injured.
• Sidebar: I bought travel insurance for FFL and it cost $60.

Friends for Life is About Finding Friends For Life

“Find Your Fiffles” (friends for life) a session where attendees had the opportunity to participate in icebreaker discussions on a variety of topics.  Including; significant others, parents of CWDs, LADA and newly diagnosed, nonprofit, diabetes and legal/civil rights for people with diabetes, navigating diabetes and Social Media, and diabetes and nutrition.

I focused on Nutrition. Our table: Adults with T1s and parents of T1s.

We discussed whatever came to mind in terms of struggles/strategies re: food and dietary issues  —  both mentally and the physically. Being able to share our frustrations, what works/what doesn’t was educational, comforting, and validating.

After the session one of the moms told me: I understand a little better what’s going through my kid’s head.

Friends for life also means offering multiple private (as in behind closed doors), support sessions for parents/grandparents of children with diabetes, partners of people with diabetes, T1 teens, and adults living with diabetes.

In the sessions I took part in, we talked open and honestly with others who “get it.”

Be it the mundane (bolus worthy Starbucks drinks, diabetes tech annoyances), the frustrating (misdiagnoses, difficulty getting insurance to approve pretty much everything we need to stay alive), or the scary (as in dealing with complications), there’s nothing like community support.

Closing

The end of FFL is emotional. Being part of moment in time where children, teens, and adults with diabetes and their families are experiencing joy at every turn, be it in the hallways, between/during sessions and at social events is life changing

Brought together because of our diabetes - collectively experiencing FFL magic that manifests itself while wearing the FFL green bracelets (for people with diabetes) or orange bracelets (for people who love us) is priceless and empowering.

After spending most of the lockdown alone — and the first 120 days of 2021 in a cast for a misdiagnosed, partially torn ligament with a side of multiple sprains in my foot, my spirits were low and my anxiety (like most humans on the planet) has been dialed up to 11.

So, when I learned that Children With Diabetes was holding their Friends For Life Conference (#fflOrlando21) in real life this year I was ecstatic! I’ve previously reported from congresses for Ascensia - I pitched the idea and was graciously hired to report on my experiences attending FFL and traveling in a COVID-19 world.

I was anxious as hell because of COVID-19 (and the Delta variant), airports, planes, hotels, crowds, etc.

But I needed to do this - to get back out there, safely. I needed to catch glimpses of my old self because the pandemic had forced her into hiding and I worried she might never return. And quite frankly, I needed a good dose of Friends For Life to recharge my diabetes batteries.

So I reminded myself that I was fully vaccinated, could continue to wear a mask and came up with a plan to maintain my mental and physical well-being throughout the conference.

Mental Prep

Education: I read articles focused on traveling in a COVID-19 world, talked with others who had already tackled traveling (flying and staying in hotels), purchased an extra box of masks specifically for the trip, and made sure I had hand-sanitizer for my carry-on, handbag, and luggage.

I knew it was imperative to get myself out among people before my trip for multiple reasons:

1. I worried I was becoming agoraphobic (not joking),
2. I DID NOT want to have a big COVID-19 “freak out” at Philadelphia International Airport or at Disney’s Coronado Springs

And so I did, safely and on my terms.

How?

1. I had dinner outdoors, at a restaurant with my family at the end of April and for the first time since December of 2019.
2. The week before I left for Orlando I made myself sit inside a mostly empty Starbucks (and wiped down my table and chair with Clorox wipes), for the first time since February of 2020.
3. I attended a 10:30am showing of JAWS on July 3rd, at a recently opened and refurbished movie theater with stadium seating. Children wore masks, as did most adults, and everyone was socially distanced re: seating.

Scoping Out The Deal With Food

Diabetes makes us acutely aware of the importance of food when it comes to preventing and treating low blood sugars and I knew I needed to scope out the food situations/workarounds — at both my destination and at the airports.

After my flight was booked and I knew what terminal I was departing from, I checked Philadelphia International’s website and found out what food options were available in my terminal. And I did the same for Orlando International.

I always bring food with me when I travel, but knowing the choices available at each airport eased my anxiety.

The pandemic also changed hotel dining - I needed to find out what my options were. Several hotel restaurants were closed, those that were open had COVID-19/Disney rules in place including; reservations (for some,) limited seating/times and or takeaway for the rest. Room Service was not available.

Off-site, Disney Springs used to be an option. This year, the majority of restaurants required reservations (via Open Table or various Disney Apps/websites) and offered limited seating.

I had no desire to deal with Disney Springs crowds and eliminated it from my list.

I discovered that both Instacart and GrubHub made deliveries to Coronado Springs Bell Services for a nominal fee.

Conference friends also suggested mousewatcher.com , a site that for a daily fee will text-alert you real time reservation openings at Disney restaurants and the My Disney Experience App, which provides up-to-date restaurant availability throughout the parks and Disney Springs.

But Is Your Smart Phone Smart Enough?

FTR, know your smart phone’s limitations re: software updates.

Why? Instacart, MyDisney Experience, and GrubHub apps required ISO 13.

Unfortunately, I have an iPhone 6+ (yes, I’m aware I need a new phone), and the latest and greatest update is 12.5.4, so I was unable to install those apps. Luckily, I had my laptop with me and ordering groceries wasn’t an issue. Most people don’t bring their laptops to Disney, but a good number bring tablets.

Getting To The Airport, Sitting On A Plane, Getting To The Hotel & Anxiety, Oh My!

Thanks to COVID-19, certain businesses and services closed, so I had to change my pre-flight routine. Instead of driving to a carport valet service near to the airport, (they drive you in your car to the airport, store your car, and pick you up in it) I drove straight to the airport and got lost for a good 40 minutes in the mess known as short term/long term parking at Philly International. 

After checking my baggage I headed towards TSA. TSA was empty — like there were maybe 7 people ahead of me and it was the most surreal TSA line in the history of TSA lines… dare I say it was almost a pleasant experience? Almost being the operative word, because it changed once I asked for a visual inspection of my insulin pod’s PDM and CGM. Clearly some things never change. SIGH.

After my pat-down, I was detained and questioned, while my diabetes tech was swabbed and tested for explosives. When I was allowed to finally proceed, I stopped for water and yogurt en route to my Gate.

At this point I was nervous, agitated, and so damn thankful to be double masked and surrounded by hand sanitizer stations. I did my best to keep my distance from others, which wasn’t easy. I held my ground and hoped for the best.

When I boarded my packed flight, (HUH), I was handed a Lysol wipe, and immediately used it to clean my seat and arm rests. I said a little prayer to all the deities that came to mind, placed my backpack in the overhead compartment, sat down, buckled my seatbelt, and double checked my jacket pocket to make sure my hand-sanitizer was within reach. Everyone on board was masked and nobody complained about having to wear them.

Once we landed, my double masks stayed on as I made my way through a jam packed Orlando International (which freaked me the hell out). I took the crowded airport train (and touched nothing), to Baggage Claim, retrieved my suitcase and headed to catch Disney’s Magical Express. There was like 8 people on my shuttle, normally ME shuttles are packed and seats 40 or 50 people. By Disney decree, everyone sat in their own row and wore masks, including the driver.

Hotel Check In

I wore my mask, as did everyone else in the lobby (employees and guests), and the overall experience felt safe and relatively painless.

Until I asked a hotel employee walking by about the hotel’s policy re: guests’ vaccine status. I was told that Disney uses the honor code when it comes to asking people who weren’t vaccinated to wear masks. Quite frankly, that made me uncomfortable and I wasn’t happy.

I signed a Disney waiver a month before I arrived that stated I wouldn’t hold Disney liable if I contracted COVID-19.

l noticed generous numbers of hand-sanitizer stations, and some areas where socially distanced open seating spaces were created.

UPDATE: On July 29th, Disney changed their mask rule - ALL Disney guests over the age of 2 must wear masks indoors at all Disney properties, no exceptions.

My hotel room was spotless and I opted out of daily House Keeping services.

Friends For Life Arrangements

FFL made conference check-in simple and safe. FFL Check-in lines were divided alphabetically, everyone socially distanced in the line, and most wore masks.

I saw several FFL staff informing parents of children under 12 that masks were required at all times.

The vibe was electric with continuous warm welcomes from old friends and first timers.

The session rooms included abundant seating, assuring that everyone could spread out according to both COVID-19 social distancing suggestions and the attendees’ comfort level.

Kudos to Disney and the FFL staff! Meals were not only scrumptious, food was handled with the utmost of care. Two out of the three conference days included breakfast and lunch to-go meals, which were pre-packed, bagged, and magically delicious! Hands-down, the best to-go breakfast and lunches I’ve ever had. Pickup was timed according to the letter (A or B), on the back of your conference badge and meal seating was offered in a Ballroom, outdoors, or in the hallway seating areas.

The banquet, opening reception, and farewell breakfast meals were served in one room by gloved and masked waitstaff standing behind plexiglass panels at multiple stations and eaten in another ballroom.

All meal carb counts were available via QR smart phone scans.

What About Hugs?

Hugs are a big thing when it comes to attending FFL - it’s a real part of the conference and something that everyone not only looks forward to, but requires. This conference isn’t only informative and empowering when it comes to living and managing diabetes, it’s incredibly emotional. This time around, hugs weren’t automatic when you encountered old friends.

Instead, combinations of the following terms were continually uttered:

“Are you comfortable/OK with hugging?”

“Are you vaccinated and can I give you a hug?”

“Am I allowed to hug you and no problem if you’re not comfortable.”

Some people hugged, some people didn’t. Others half-hugged or elbow bumped — nobody was offended with your choice(s). 

So Am I Glad I Went?

Honestly? Yes, I am.

Even with all the anxiety re: travel in the pandemic world in which we currently live, I’m glad I took the opportunity to travel and attend #FFLOrlando21. FFL helped me to find my pre-COVID self again. It allowed me to connect and feel connected, and it gave me the nudge to pick up the reins re: travel, even though I was anxious.

As always, FFL gave me a space to learn about diabetes in all dimensions, meet new people, and reconnect with old friends.

I had some moments where I was freaked out in the hotel room — especially on Saturday when I woke up with the sniffles — until I reminded myself that every time I spend more than 3 days at a hotel in a hot climate, especially one with massive amounts of continual forced air conditioning throughout, I end up with a stuffy nose. At several FFL conferences I’ve lost my voice by day six.

Did I practice self-care by going to bed early a few nights? Yep.

Was I anxious having to do deal with another day of travel to get back home? Hell yeah!!

But I did it.

I’m hoping to attending #FFLOrlando in 2022.

Until then, I’ll keep washing my hands, wearing masks and sticking to small gatherings. And I’m scheduling a COVID-19 test for my own peace of mind.