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Posts tagged ‘children with diabetes’

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.

 

Guest Post: What FFL Was Like as a First Timer.

Wondering what it’s like to be surrounded by thousands of people affected by diabetes?  Today, my fellow Friends for Life faculty member and longtime family friend, Scott Johnson, takes over SUM to share his experience as a first-timer at FFL back in 2010.  

Scott was diagnosed with type 1 diabetes back in 1980 and has been blogging about his experiences since 2004 over at Scott’s Diabetes Blog.  Today, he’s an integral (and huggable) part of the diabetes online community, working tirelessly as an advocate and also as the US communications lead for mySugr.

(And if you’re looking to connect in person with like-pancreased people, you can register for Friends for Life here.  Or, if July in Orlando is not your thing, there’s another conference in Falls Church, VA that might hit the mark for you.)

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As soon as I arrived at the hotel, I started noticing people with diabetes stuff around the hotel. A Dexcom sensor or OmniPod pump on their arm. Maybe a diabetes-related t-shirt. A used test strip. I was gawking at everyone! Rubbernecking my way from place to place as I walked around the hotel. It’s so uncommon to see people like me out in the world, but at Friends for Life, it’s the norm, which is a very powerful experience.

And when it comes to powerful experiences, Friends for Life has plenty to offer. One of my favorite moments was walking into the big breakfast room for the first time. By dumb luck, I picked a corner door and walked inside. That moment stopped me in my tracks.

I was stunned by how massive the room was. I couldn’t see everyone because it was too big. The other side of the room felt lost to the curving horizon line of the earth. And it hit me, suddenly, that everyone there was there for me. Well, not me, exactly, but “me” as in type 1 diabetes. I’d never seen so many people together specifically for type 1 diabetes before I’m my life – and I’ll never forget feeling so amazed, so grateful, and so ready to drink it all in. It tugged on some heartstrings I hadn’t known were there. I’d found a family I didn’t know I was missing.

Friends at Friends for Life

photo credit: Jeff Hitchcock

The whole conference was extremely emotional for me. Seeing little ones with diabetes knowing they’ll grow up with a better experience than me thanks to Friends for Life made me so hopeful and happy for them. But knowing they’ll know the shitty sides of diabetes too made me want to hug them and cry.

Some sessions were presentation style with slides, others were small group sessions offering a safe place to vent about tough topics with others in similar situations. There were different tracks to choose from, depending on interest, relationship to diabetes, age group, and more. I bounced around from session to session and was impressed by all of them. Jeff, Laura and the FFL team pull together an impressive roster of faculty members and volunteers to make magic happen. It was the first time in my life where I could listen to a famous doctor or scientist that I’d only read about give a presentation one hour, then find myself visiting with them later that day somewhere else in the conference. It felt surreal in so many amazing ways.

And then there’s simply sitting with a group of PWDs for hours and commiserating about some situation that we’ve all dealt with or just laughing the night away and talking about everything but diabetes.

It’s hard to describe the level of understanding present at Friends for Life. I remember listening to Rick Philbin give a talk about insulin pumps and exercise, and as he’s up at the podium he described the subconscious urge to check his pockets for glucose tabs every time he programmed a correction bolus out of fear for going low down the line. I was like, “whoa… he can see inside my soul..” but I’d never been able to articulate that subtle fear! And then there’s the story of getting to play basketball with Rick and Gary Scheiner – an awesome experience – until they got into a “discussion” about the score. That’s a day I’ll never forget!

And stay tuned for another guest post all about eyes …

I have to acknowledge Roche Diabetes Care’s huge roll in my first Friends for Life experience. They invited me to the second Roche Social Media Summit and hosted the event at the same location as the Friends for Life conference. This reduced some of my out of pocket expense (airfare) which made it possible for me to attend. That small logistical favor changed my life in so many ways. I’m forever grateful.

  *   *   *

Thanks, Scott.  See you in a few weeks!

Guest Post: My Magical Disney Moment.

The power of peer-to-peer connections is not lost on the diabetes community.  While insulin remains our strongest medication tool, our mental and emotional health is nourished by connecting with like-pancreased people, making any diabetes burden that much lighter.

One of the most amazing peer support cultures in the diabetes community is found at Children with Diabetes’ Friends for Life conference.  As a board member, I’m extremely proud of the influence FFL has on families affected by diabetes.  Which is why stories like Noor’s are so powerful, because they illustrate how finding your tribe can make all the difference in your health.  

  *   *   *

Born and raised in the Middle East, in a culture where a lot of stigma is attached to people with medical conditions, growing up with T1D was very isolating, lonely and resentful. I was diagnosed at the age of 5, the first 8 years went by smoothly; my mom took on majority of my care load and those pesky hormones still hadn’t made their grand appearance. My doctors put me on a pedestal; I was their most “compliant” patient (yes that was a word that was actually used back then). Puberty kicked in and life as I knew it was over; the hormones took me on a never-ending whirlpool ride. I was embarrassed, tired, exhausted and done with diabetes. I was done with being different. I didn’t know how to explain that to my family and doctor. I felt like I was failing them and they wouldn’t understand, so I decided the easiest way to deal with it is to not deal with it at all. The next 3 years were a nightmare; I was in and out of the hospital more times than I can count. I was in severe DKA 3 times, once so severe the doctors said that I was going into cardiac arrest. I was in a coma for 5 days due to a hypo seizure. My a1c was 13%.

My parents did everything in their power to try and help; they tried soft love, tough love, grounding, reasoning, bribing, yelling, etc. but nothing worked, nothing fazed me. My doctor back home recommended attending the Friends For Life conference in Orlando; he thought it would be an encouraging experience. Little did he know it would save my life, LITERALLY. My parents dragged me kicking and screaming (maybe less kicking and more screaming); the last thing I wanted was to be in a room filled with “outcasts” and “weirdoes,” because you know as a teenager I was a “cool kid.”

The turning point of my life wasn’t when one of the amazing inspirational speakers talked about how he won the super bowl with T1D nor when a world renowned researcher talked about the effects of high and low blood sugars on our organs. It was on a Disney bus on the way to EPCOT with a group of teens who took me in and invited me to join. Kenny, a T1D teen, who was on top of his diabetes game, was checking his blood sugar using his forearm. I asked him the reason behind it and he casually answers, “In case I ever develop complications and need to read braille, I don’t want calluses on my fingertips.”

THAT was my wake-up call, THAT was my holy moly moment, THAT was all it took, THAT was my magical Disney moment.

Fast-forward 13 years; I haven’t missed a single conference, besides one because I was too busy having my twins (I know my priorities are off psht). I am not a mushy cheesy person; sarcasm is my language but brace yourself for this. These people have become my family, my friends for life and my squad. We have been through birthdays, relationships, breakups, marriages, childbirth, graduations, political turmoil (yes that’s a big one), highs and lows together. They inspire me everyday to do better and be better, not only with T1D but also with life in general. They made me comfortable in my own skin (after that summer I agreed to go on a pump after years of resistance); proud of the person I am with my diabetes and embrace it every day. When I’m having a screwed up T1D day, I know I can text them and they “get it.”

When I manage to workout and stay in perfect range they “get it” and understand what a huge deal that is. When I send them a screenshot of my dexcom with 2 arrows up after eating pizza, their “but that was worth it” response lets me know they “get it.” They have normalized this disease; suddenly I wasn’t alone, an outcast, or scared. They are nurses, doctors, advocates, athletes, chefs, photographers, businessmen/women and the list goes on. They proved to me that you can be anything you want to be and be amazing at it, in spite of the struggles.

That is the power of a community.  This is what they meant when they said “it takes a village.”

  *   *   *

Noor Alramahi has been living with diabetes since the age of 5 and since she wrote her own bio, I’m going to paste it here in full.  Mostly because she adds “had twins” as this NBD sort of thing when it is SUCH a BD.

“I’m a 28 year old curly brunette who’s in love with Tiramisu and Justin Timberlake. I was diagnosed with diabetes at the age of 5, since then I have learned to play piano, played varsity soccer, competed in horse jumping, travelled to more than 19 countries, had twins and can’t think of one thing that having diabetes has stopped me from doing. I am married to my best friend and have 2 year old boys. I have been part of  CWD FFL staff for the past 8 years, I also help run their social media platform. Five years ago CWD FFL inspired me to leave my corporate job and join the T1D nonprofit world and focus on helping people. I work as the community manager at Carb DM and am the co-founder of T1D females group in the family planning, pregnancy and post pregnancy phases called Sugar Mommas

Click to make a donation!

Thanks for sharing your story, Noor!

If you’re interested in seeing how Children with Diabetes can change your life, check out the website and consider coming to a conference.  If you already know how Children with Diabetes can change your life, please consider donating to support the organization.  And if you’d like to share your story about how the support of CWD has influenced your life, please email me at kerri (at) sixuntilme (dot) com.

Perspectives on Diabetes: Why Children with Diabetes Matters.

People ask me why this conference matters, why the organization matters, and it’s sometimes hard to sum up.  What’s so great about sitting in a room full of people with diabetes?  Isn’t it like surrounding yourself with a reminder of something that is a pain in the butt (diabetes)?  Doesn’t it suck to talk about diabetes all the time?

DUDE.  NO.  This is kind of the opposite.  Being around people who understand diabetes doesn’t breed a boatload of discussion about it.  Instead, I’m sitting at a lunch table with folks who know the ins and outs of diabetes, but we don’t shout out our blood sugar results or bolus amounts.  It’s not like that.  We’re talking about what our lives are like outside of diabetes, about the life we build that includes diabetes, not built around diabetes.

People with diabetes wear green bracelets, to both alert to potential emergency situations (you see a green bracelet in distress, think glucose tabs in a hurry) but the green also threads together the people who are playing host to diabetes.

A quick glance at someone’s wrist lets you know that they get it.

Sometimes, when days are kind of rough, I’ll put on a green bracelet to remind myself that I am not alone. Support from the community is as important as the insulin I take; both keep me healthy, and keep me going.

But it’s not just the green bracelets that make this community so powerful. Orange bracelets are given to folks who don’t have diabetes, but who remain touched by diabetes.  My daughter and my mother came to Friends for Life with me a few years ago, and they were also able to connect with their respective tribes, the orange braceleters. My mother, after decades of raising me without a vast diabetes support network, was immersed in a sea of parents who understood so much of what she’s experienced as my parent. And my daughter, her understanding of mom’s diabetes expanding with time, was able to hang out with other little kids who had parents with diabetes.

This kind of support, community … whatever you want to call it, it matters.  I mean, you’re here reading on a diabetes-centric blog, for crying out loud.  Clearly we, as a group, have a pull towards one another and benefit from connecting.  For me, knowing I’m not the only PWD (person with diabetes) on the planet makes diabetes easier to handle.  This is a hard thing to build studies around and quantify how it affects health outcomes, but taking my insulin is easier when my mental health receives care.  My A1C has been consistently steadier since engaging with the community.  My level of diabetes health literacy has grown by leaps and bounds.  And diabetes scares me less, on the whole, because I am surrounded by people who are in it with me.

Whole person health, remember?  Diabetes doesn’t exist in a damn vacuum.


The annual Friends for Life conference is coming up this July, and if you haven’t checked out the conference, now is the best time.  There are also other regional conferences (Anaheim in September, Falls Church this past April) that offer the same connection and community on a slightly smaller scale.

Full disclosure:  I’m a board member for T-1 Today, which is the parent non-profit organization for Children with Diabetes.  My bias includes that, and the fact that I haven’t produced any insulin for the last 30 years.  If you’re an organization interested in finding out more about how to make a tangible difference in the diabetes community, please connect with me.  And if you are interested in making a charitable donation to support the organization, click here.  And thank you!

SUM Related posts:

Flick of the Wrist.

In the interests of getting through TSA in Orlando as quickly as possible and making my way over to my gate so I could find some iced coffee and a banana, I disconnected my insulin pump and put it through the x-ray machine, caring very little if it melted in the transaction because I was melting in the transaction.

The tram to the gates was arriving just as I was finished at security, so I grabbed my pump off the tray and held it in my hand. dragging my bag to the shuttle. Just after “stand CLEAR of the closing doors,” I reached around to the top of my hip and reconnected my infusion set, sticking the pump into my pocket.

A woman boarded the tram, her infant daughter strapped to her chest. I noticed her noticing me while I reconnected my pump.

“Insulin pump?”

“Excuse me?”

“Is that an insulin pump? Sorry – my son has diabetes and I recognized the pump.”

“Oh, yes.” I searched her wrist for an orange or green CWD bracelet but didn’t see one. “Were you here for the conference?”

“What conference?”

“The diabetes conference. It’s called Friends for Life and it’s put on by an organization called Children with Diabetes. It takes place here in Orlando, over at Disney.”

She smiled. “I’ve never heard of it, and I live right here in Orlando. What’s it called?”

“Friends for Life. It’s a diabetes conference for families with diabetes. Lots of kids with type 1 attend with their parents, and lots of adults like me who go to connect with other adults who have diabetes. It’s really nice, like diabetes camp. Community helps, you know?”

She nodded, and the baby on her chest flapped her arms happily. “My son goes to camp. He loves it. But I’ve never heard of the conference before.”

I reached into my bag and fished around for a pen. Nothing. Checked my pockets for a business card. Nothing. The tram was about to stop and ditch us at the gates, leaving me just a few seconds to try and explain how a few days in Florida can change your life for the better.

“What’s the conference called again?”

I grabbed the edge of my green bracelet and pulled it off my wrist.

It's on. #ffl15

A photo posted by Kerri Sparling (@sixuntilme) on

“I know this seems weird to hand you a slightly-used conference bracelet, but the URL for the conference website is on it. Everyone who has diabetes wears one of these green bracelets. You see one of these and that person understands, you know?” I handed her the bracelet, pointing at the website address. “I hope this doesn’t seem creepy. It’s just an amazing experience, being around all of those other families, and it would be great to have you and your family check it out, if that’s your thing.”

She took the bracelet and put it in her pocket. “This is very nice of you. Thank you. I’ll check it out for sure.”

The tram doors opened and we stepped out.

“Where are you headed home to?”

“Rhode Island.”

“And you come here just for that conference?”

I thought about the week that had just passed, when I was surrounded by people who redefined family.

“All the way here. Green bracelets are pretty awesome.”

She waved, and her baby waved, too. “Thank you for passing this along. Safe travels back home. Maybe we’ll see you next year.”

Usually when I board the plane home from Friends for Life, I like to look down at my green bracelet because it reminds me of my PWD tribe.  This year, with a flick of the wrist, I was grateful it had found a new home.

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