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Posts tagged ‘type 1 diabetes’

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.  

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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.”

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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

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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.

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.

Emergency Plan.

Was just 106 mg/dL.  Tumbled fast to 40.

Took minutes.  Felt like seconds.

Dizzy.

Wait – get phone.

Put the baby in his crib.

He’s safe in there.

Already drank juice – plenty of it – now wait wait waaaaaaaait.

…. waaaaaaiting.

Wall edges seem wiggly, like if I poked them they’d shudder like Jell-O.

Baby is safely in the crib, giggling and playing with his feet.  I sit on his floor with my phone in my hand, ready to make a phone call to a neighbor if the waves of confusion start to erode my mental shore.

Briefly wonder what I’d say if I called.  “Hey, this is Kerri.  Can you come over?  I feel like I’m going to pass out.”  I’m sure I’d try to sound casual when casual is not how I feel.  I keep 911 dialed so if I need to just hit the call button, I’m ready.

Emergency plans.  I have them.

My tongue becomes less thick, less clumsy in my mouth.  I flex my fingers, which are attached to my still-shaking hands.  They feel responsive but like their wings are still clipped.

Juice starts to change the course of my blood sugar.  CGM alarms still blaring from my phone, less urgently now.  Walls seem less gelatinous.

Baby burps and then laughs at his own burp.  I laugh, too, the fog of hypoglycemia unwrapping itself from my brain.  I remember that it’s morning.  That it’s a week day.  That I’m due on a
conference call in 20 minutes.

CGM shows me a comforting arrow.

Emergency over.  Status quo returned.

Before I retrieve the baby from his crib, I grab a cloth and clean up the juice that leapt from the glass while my hands were birds.

 

 

Let’s Get it ON!

Happy St. Patrick’s Day!  Whether you’re Irish (I am) or not, today is a day when people will wish you top o’ the morning and will also potentially offer you a beer at 9.30 am (I am not).  Today I’m looking back at a post from ten years ago wherein Mills Lane mediates a melee between a beer and a cocktail.  Read on to find out who wins …

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The microphone drops down and Mills Lane plucks it out of the sky.

“In this corner, bringing a bevy of boluses and carbonated carbohydrate content, wearing Gold Shorts and a lime wedge, weighing in at about 12 oz is the mysterious new challenger, La Corona!”

He raises his fists in the air and burps.

“And in this corner, The Titan of Tight Control, the A1c Ally, weighing in at about 9 oz and made up of cheap vodka, cranberry juice, and a splash of Tropicana orange juice – the reigning champion, The Mighty Madras!”

Madras also pumps his fists, holding tight to a thin, red straw and a test strip.

“Gentlemen, this is the title match. Nothing below 50 mg/dl and nothing, nothing above 250 mg/dl – do you hear me? I want a good, clean fight. Now let’s get it on!”

Bell rings.

“And the Corona lurches forward right away, fists flailing! Look at those carbs, folks! The Mighty Madras is backing off a bit – I can hear those ice cubes clanking against the side of him! Corona reels back, swings out and oooooh! A solid hit to the jaw of the Madras! He’s falling back! He’s staggering! Could he be out already? Is this newcomer going to knock the ol’ Tried and True out of the ring?

The Madras is leaning against the ropes … he looks exhausted! Only a few minutes into this fight and the Cold Corona definitely has the upper hand! This could be it! …

… But wait, what’s this I see? Yes, the Mighty Madras is on his feet! He’s taken out a blood glucose meter from his pocket. He’s looking to test Kerri – judges? Are we allowing this? Yes, the judges are allowing a blood test. And Kerri, after having two of the icy cold Coronas, is up to 253 md/gl! Her bolus was grossly under estimated! They’re flashing the results across the marquee – indeed, Kerri is high and the Corona can’t stop staring at the number!

And – ooooh! – the Mighty Madras has snuck in a jab while the Corona isn’t paying attention! He’s now pummeling the Corona! There’s lime juice everywhere, my friends … this is truly a gruesome beating!”

Corona is leaning against the ropes, exhausted from the beating. The Madras reels back his fist, angry that Kerri didn’t measure correctly for her drinks and is now high as a kite. He knows he would have been easier to count. He knows he could have let Kerri enjoy steadier blood sugars and a night out. Why did she pick Corona? Was it the price? Was it the fact that “out having a beer” is what she preferred over a more pretentious mixed drink? Madras didn’t know. He didn’t care. All he knew is that the Corona was horning in on his woman and he wasn’t standing for it.

“And the Madras has brought out a bottle of insulin!! And OH MY GOD he’s cracked it over the Corona’s head! Corona is out! It’s a knock-out, dear viewers! This fight is over! Over!”

Corona falls flat against the mat, out cold. The ring smells of sweat and insulin. Mills Lane grabs the championship belt and thrusts it into Madras’s hand, declaring him “Winnah!” Madras, bleeding profusely from the eye and crying, raises the belt to the air and yells, “Kerri! Kerri!” Kerri comes running from the stands, meter in hand, and stands in front of him as she tests. “153 mg/dl. I’m coming down. I’ll be more careful next time I drink high-carb beers, O Mighty Madras. I promise!”

They embrace. The “Rocky” theme swells in the background. Kerri decides that the next time she wants to have a beer, she needs to measure more carefully and bolus with more precision. She also discovers that she has run this storyline into the ground.

Mills Lane wipes the tears from his eyes. “I love a good fight.”

The NEW Jerry the Bear.

Since they’re local to me here in Rhode Island, I drove up to the Jerry the Bear office to meet with my friends Aaron Horowitz and Hannah Chung, creators of Jerry the Bear.

“It’s awesome to see you guys! Where have you been the last few years?”

After hugs and hellos, I realized my question was unfair. Because they haven’t been hiding but instead, the team behind Jerry the Bear has been working tirelessly to change their business in efforts to meet their mission of getting Jerry into the hands of every child diagnosed with type 1 diabetes globally.

That’s quite a mission. But if anyone can accomplish this goal, the driven, passionate, creative, and all-heart team behind Jerry can.

Just your friendly neighborhood Jerry the Bear!

A post shared by Kerri Sparling (@sixuntilme) on

“As a business, we know that Jerry the Bear works, but in order to succeed and survive, we need to make the business work. We’ve been working to move our company from a direct to consumer model to a business-to-business model. This means we’re not selling our bears directly to people but instead have partnered with two different distributors in order to get Jerry into kids’ hands,” said Jerry the Bear co-founder and CEO, Aaron Horowitz.

Namely, they’ve partnered with Beyond Type 1 to handle domestic and international orders (except Canada) and Diabetes Express for our neighbors to the north.

“We want to improve life with diabetes for kids by giving them something positive to associate with diabetes,” said Hannah Chung, co-founder and CCO.

The Sproutel team did a lot of research in developing new Jerry. In addition to marathon sessions with post it notes, building paper prototypes, and “body storming,” the team went into the field to access kids in their natural play habitats. Hannah told me that she went to playgrounds during the development phase in order to work with kids and see if they could hold a bear and a phone at the same time, testing out how the app might be physically managed by their target age range of 4 – 9 years old.

“I’d go into the playground with a bear peeking out of the back of my backpack and a handful of permission slips, talking with kids and their parents. We play games like Simon Says in order to see if kids could find the bear’s belly button or elbow, and whether or not they preferred phones or tablets.”

The mental image of Hannah traipsing through Rhode Island playgrounds with a mission to improve the diabetes experience and a stuffed animal keeping watch over her shoulder sums up the Jerry philosophy for me. This team – Hannah, Aaron, Joel Schwartz, and Brian Oley – are changing the way newly diagnosed kids with diabetes are introduced to diabetes.

I think about my own diagnosis back in 1986 – what a difference it would have made to be handed a friendly bear instead of an orange to practice injections on.

In meeting the new Jerry the Bear, the first thing I noticed was that the touch screen tummy of his predecessor was gone. Coming in at a price point of $55 versus the $299 cost of Original Jerry, New Jerry (henceforth known simply as Jerry) is a soft, plush animal without any plastic or metal hardware attached to him. He’s snuggle-ready. Looking similar to my daughter’s army of Build A Bear stuffed animals and sporting giant, Beanie Boo-esque eyes, Jerry looks like huggable buddy, the perfect comfort companion for kids with diabetes.

What’s replaced the touch screen belly, however, is an amazing upgrade. Jerry now comes with a digital world that lives on an iOS or Android device, and the app is completely free. And on Jerry’s plush body are scannable patches that serve as unique QR codes, giving rise to augmented reality play.

“We were excited to see Pokemon Go! come out and see such success,” said Aaron. “Jerry has that same kind of virtual world superimposed onto the real world. Now it is easier for Jerry’s actions to be procedurally detailed.”

Checking Jerry's BG.

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This means that you’re not just squeezing the pad of Jerry’s finger, but instead you’re walking through all the details of checking blood sugar, from putting the test strip into the meter, pricking his finger, squeezing out a drop of blood, and applying the blood to the strip. The tasks feel real, and they feel thorough.

DO feed the bear!

A post shared by Kerri Sparling (@sixuntilme) on

The app doesn’t require an actual Jerry the Bear stuffed animal to engage in Jerry’s world, though, and that’s one of my favorite upgrades to this experience. While Jerry himself requires a purchase, the app is free for download. And with that download comes a full world of diabetes experiential learning through the Jerry lens.

“My favorite things about [new] Jerry are that you can explore Jerry’s world in full just on the app, and also that scanning his sites gives you detailed steps around how to use Jerry’s diabetes kit,” shared Hannah. Aaron agreed, adding, “Also that you can experience Jerry instantly through the app. And that the action of scanning changes the world around you, through augmented reality play.”

“What’s the weirdest thing you saw during the test group sessions?” I asked.

Aaron laughed. “You wouldn’t believe how often kids feed Jerry’s butt.”

So there’s that.

While Jerry is aimed at helping kids in the  4 – 9 year old range who are newly diagnosed with diabetes, his potential reaches FAR past that specific demographic.  Jerry, in our home, has been used to help my daughter understand her mother’s diabetes.  He’s been a teaching tool to show kids in her class and our neighborhood what diabetes is all about.  Imagine Jerry as part of a diabetes camp experience, where teenagers can lean on levity and being silly with a stuffed animal to work through some of their frustrations.  Or helping open up discussions for all age ranges about diabetes distress or burnout.  Jerry could be a powerful conduit for conversation for all people touched by diabetes.

This little bear has potential, and plenty of it.

One more thing:  I’d love to share Jerry with two Six Until Me readers, and all you need to do is leave a comment.  Through a random number generator, I’ll select two commenters to ship a snuggly Jerry to.  This giveaway will be open until Sunday night at midnight eastern time, and winners will be notified by email.

Want to enter?  Leave a comment, and be sure to include your email!

You can check out Jerry the Bear’s new app by downloading it from iTunes or Google Play. You can also follow Jerry on Twitter, Facebook, or Instagram. To order your own Jerry, visit Beyond Type 1 (or Diabetes Express, if you’re in Canada). Thanks to the Sproutel team for letting me come over and play!

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