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Posts from the ‘Psychosocial Support’ Category

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!

ConnecT1D Retreat: Sign Up NOW!

Last summer, when I was 17 1/3 months pregnant, I traveled to Seattle to take part in the ConnecT1D Retreat.  Despite being a round mound of hormones, I had an awesome time connecting with other PWD adults and sharing experiences.  It was put together by an amazing team of PWD leaders, and today, the Board President of ConnecT1D is sharing details about the 2017 conference.  

(And note:  registration ends on March 15, so register today!!)

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Kerri:  Hi Cassady! Thanks for making some time to talk. Can you let readers know a little bit about you and your connection to diabetes? 

Cassady:  Hi Kerri! A few fun facts about me: I enjoy plants but do not like to garden; gummy bears are best served cold so I keep mine in the refrigerator; my current binge-watching show is “Seinfeld”, and my two cats were in my wedding this past year when I married the coolest guy in the world. We created a special wagon covered in toole for them and my niece pulled it down the aisle—not as a flower girl, but under the official title of “Head of Feline Transportation: Ceremony Division.”

Also, I was diagnosed with type 1 diabetes about 22 years ago. As a teenager, I struggled quite a bit with T1D, both physically and emotionally. Despite having all the medical care I needed, I was labeled a “non compliant” patient who just couldn’t seem to get it together. I remember feeling so alone and overwhelmed with shame and guilt during those times. That’s when I came to see the bi-directional relationship between physical health, especially chronic medical conditions and psychological well-being. Luckily I started seeing a counselor, and discovered the power of emotional support and connection.

I decided to take my personal experience and combine it with professional training as a mental health therapist, and that’s what I do now! I help people with diabetes and other chronic illnesses address the psychosocial issues that, much like that awful bunny onesie Ralphie gets in “A Christmas Story,” so often show up uninvited. No one gets what he’s going through, but I bet they would if they had to wear one. I get it, because I, too, have worn the pink bunny suit.

Kerri:  Who hasn’t worn the bunny suit?  You’re involved with ConnecT1D. Can you tell readers what that organization is about and what your role is there?

Cassady:  I am the Board President of ConnecT1D, which is a nonprofit in the Pacific Northwest that sees social support as a vital part of type 1 diabetes treatment. That’s why we create social support opportunities for families, teens, and adults living with T1D. We do this by bringing people together for meet-ups, educational meetings, retreats, and lots of other fun programming. Speaking of which, I am also the Co-Chair of the ConnecT1D Adult Retreat

Kerri:  Good timing with that mention. The ConnecT1D retreat is coming up soon! What makes this event awesome?

Cassady:  The Retreat is an opportunity for adults living with T1D (partners welcome!) to get together to relax and connect with people who have a deep understanding of what life with diabetes is like. It’s great to be in a room where people are whipping out needles, talking about carb counts and you are not required to explain yourself when you mutter things like, “I’m high” or that when you say “basal”, you are not referring to an underrated garden herb. (Please see “Fun facts” in Question 1.) Inclusion can be life-saving. Isolation can be devastating.

Kerri:  I was lucky enough to visit last summer and hang out with the ConnecT1D team. The event was awesome. What can attendees expect from the 2017 conference? 

Cassady:  We will spend a weekend at the Clearwater Resort and Casino, just a 15 minute ferry ride from Seattle, WA. National and local speakers (who have T1D themselves, or a close connection to it) will lead workshops on a variety of topics promoting social connection and emotional wellness while living with T1D. Mike Lawson of the Diabetes Hands Foundation will be our keynote and he’ll talk about his own experience with and ideas for overcoming diabetes burnout. We even have a workshop for partners/T3s! Being a support person of a PWD is not always easy and often has it’s own set of challenges, and we want to have a dialogue about elements of the T3 life as well! In the evening, we’ll hang out and take advantage of the Resort—whether that’s heading to the casino to listen to live music or sitting fireside with a new friend.

Kerri:  I’m sure people want to go check it out. How can folks find out more about the event??

Cassady:  For more information or to register, please go to connect1d.org/retreat. Once you register, you can join a closed Facebook group where attendees can connect and get updates on the Retreat. The page also ends up being a cool resource even after the Retreat because it’s a place where we can build on and keep in touch with the community formed during the weekend, ask questions, share resources, and post hilarious cat-themed diabetes gifs.

Just kidding. They don’t have to be cat themed. Registration ends March 15th and space is limited!

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Thanks, Cassady!   Whoops one more:

 

 

#amadiabetes: Preparing for College.

“In your senior year [of high school], what did you do to prepare for being away from caregivers?”

This question came in from someone through the #amadiabetes form, and I have some ideas.  Thing is, I only have one version of the answer, so I’m hoping others from the community can chime in either here in the comments section or on Twitter using #amadiabetes so that the answers can be seen.

What did I do to prepare for being away from caregivers?  I spent a lot of time trying to ease myself into taking over most of my diabetes care.  And part of that meant talking with my caregivers about what their expectations were, what my diabetes required, what I wanted, and how all those things ended up in a blender together.

Diagnosed as a kid (age seven), my parents stepped in immediately to manage my diabetes.  I was taught how to inject insulin, check my blood sugar, and we talked about the influence of food, exercise, and stress on my blood sugar, but the bulk of the worry and tasks were heaped on my parents.  Specifically my mom, who would check my blood sugar while I was asleep. (She would wake up early to get ready for work and would check my BG first thing … she said my hand would come out almost automatically from underneath the covers, one finger extended.  A PWD reflex.)  My mom assumed/absorbed most of the diabetes-related worry, leaving me to focus on being a kid and letting the torch of care be passed to me bit by bit.

Here’s what worked about how we passed that torch:

  • By the time I was a senior in high school, I had developed a sense of what it took to manage diabetes, and my responsibility for my own care was openly discussed.  My parents made diabetes management part of earning my license (no keys unless there was consistent evidence of checking my blood sugar before getting behind the wheel).  They punished me not for blood sugar results but for the lies about what might have influenced certain results.  (See also:  the time I lied about eating cupcakes)  Diabetes wasn’t something they put on a pedestal; it was treated with careful consideration.
  • Around the time I was 16, my endocrinologist started splitting my appointments between me and my mom together and then just me.  It was empowered as hell to be able to talk with my endocrinologist without a parental ear listening in.  I was able to be honest with my doctor and talk about my concerns or issues without worrying that I was contributing to my parent’s worry.  This approach helped me gain autonomy when it came to my disease.
  • I wish CGMs had been available when I was in college, because I totally would have worn one.  Partly because I would have wanted to be able to see my blood sugars in context, but also because the option to cloud my CGM data would have been enough to take a bite out of my parents’ worry … even if they were not the ones watching my numbers.
  • Before I started college, my mom brought me in on ordering supplies (at the time it was limited to test strips, insulin, and syringes, as I wasn’t on a pump and CGMs didn’t exist).  I gained some insight on what it took to manage the insurance side of all the diabetes crap, which helped me take the reins when I was out of the house.
  • And my parents always impressed upon me the importance of telling someone else that I had diabetes, as a safety net.  They never made me feel as if it was something I was supposed to hide.  Just get it out there, make people aware, and let that awareness serve as an umbrella of protection if I needed it.
  • My parents also had to make an effort to back off while letting me ramp up.  I’m sure that was really hard, but they gave me room to flex my independence and for the most part, it wasn’t a disaster.
  • I also discussed diabetes with my roommate before moving in.  More on that in this dLife column.

Things that we could have done better?

  • I wish there had been more food freedom when I was a kid.  Unfortunately, I was diagnosed in the time of NPH and Regular insulin, so we were always responding to the peaks of my clunky, injected insulin.  Food choices were really restricted due to that, and also because my diagnosis was literally met with a list of foods I couldn’t eat anymore.  That was the case for lots of kids diagnosed back in the 80’s – diabetes came with a list of “can’ts.”  Food was a loaded topic for me and as a result, the freedom of dining halls with unrestricted access and no parental supervision left me over-eating regularly and also over- or under-bolusing for my meals.  I didn’t know how to manage my own portions, and that took some time to figure out.
  • I also wish I had brought a mental health professional into my diabetes care team before college, because that would have helped me sort through feelings tied to disclosure and confidence in college.  My college experience opened me up to the fact that, once again, I was the only PWD in my circles, and I had some trouble being a soloist.  (I wish the diabetes online community had been a thing back then. I could have used the connections.  I’d recommend college students today check out the College Diabetes Network for support.)
  • And I should have had in-depth discussions with my endocrinologist about the effects of alcohol on my blood sugar.  I had to trial-and-error that experience myself, since I was afraid to bring it up to my doctor and also admit what I was doing to my parents.  I wish I had had a better grasp on how alcohol and diabetes mixed because there were some very tricky lows during college that could have been avoided, had I been more educated.

The bottom line?  I survived and thrived, with a lot of effort and a little luck.

How did you prepare for college?  How did your caregivers help you prepare? #amadiabetes

Mystery Date.

There was a board game marketed to girls back in the 60’s that resurfaced again in the 90’s, and that’s when I met Mystery Date.  It was a silly game where you tried to assemble an outfit for a date and then you opened the little plastic door to see if your outfit matched that of the Mystery Date guy.  (For example: if you had assembled the “beach” outfit and opened the door to reveal the guy dressed for a “formal dance,” you lost … the game, and also 20 minutes of your life to this stupid, sexist game.)

But Mystery Date popped into my head for a reason.  Since having my son, I’ve been working to wean myself off the Boston-based care team in pursuit of more hyper-local providers (and because I loathe the arrival/departure board at Joslin).  The promise of pregnancy now the past, I don’t feel the same push to make the long ass drive to Boston in order to meet my medical needs.  So in the last few weeks, I’ve been working to assemble a new, short-drive team of healthcare providers.  I currently have new appointments with an OB/Gyn, a primary care doctor, and am gently shopping for a new endocrinologist.  (I plan to keep seeing the team at Boston to track my existing eye complications, as I don’t want that crap going off the rails.)

Finding new providers is kind of like Mystery Date.  I spend a lot of time combing my insurance company’s website to see who is covered by my plan, then calling those HCPs to see if they are taking new patients, and then getting all of my records shipped from previous providers to the new team.  Then I open the little plastic … I mean, the regular-sized medical office door to see if what I’ve assembled matches what’s being provided.

Finding a new healthcare provider is similar to starting a relationship.  There’s this slightly awkward breaking in period where you are both getting to know one another, and then either the confirmation that, yes, personalities and needs are lining up or NO WAY expectations are way maligned.  For me, I crave a personal relationship with my healthcare team, one that the healthcare system barely makes room for.  Being treated as a whole person provides the best health outcomes for me; it’s important for my team to see my health concerns in the context of real life.

Otherwise, it’s like showing up dressed for the BIG SKI TRIP only to see that your healthcare professional is more into a romantic picnic.  Or worse …  the experience goes full DUD.

 

Diabetes Blog Week: Language and Diabetes.

Language and Diabetes:  There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.

(And for more on the topics of Diabetes Blog Week 2016, click here.)

Language matters.  The words we use matter.

Some words make me all fired up, like “consumer.”  I am a consumer when it comes to cars, or coats, or snow blowers.  When it comes to diabetes, I’m not a consumer.  I would never choose to consume these goods; they are chosen out of the desire to stay alive.  I don’t like “suffering from diabetes” because it makes me feel weak and compromised, which stands in contrast to where I prefer to anchor my emotions about diabetes.  And I totally hate the concept of “good” and “bad” blood sugars.  That whole ideology can fuck off in favor of “in range” and “out of range.”

I appreciate the word “complications” because its connotation is perfect for how I feel about diabetes-related complications; that shit is complicated.  I like the word “empowered” because it reminds me that I have a say in how this whole life maps out, diabetes or not.  I like any words and phrases that tie the physical aspects of diabetes to the emotional ones.  I latch on actively to “hope” versus fear.  And I like being called “Kerri” instead of “diabetic,” but hey, that’s just me.

(And I really like certain curse words, but I am trying to use those less, but it’s difficult.  I don’t make insulin, I do make use of curse words.  It’s a terrible habit, but one I am not changing.)

But it’s not about the words we shouldn’t use, or the ones that seem potentially loaded.  This morning, after hearing about the death of a fellow advocate (outside of the diabetes space), I’m spinning with thoughts of the words I wish I used more, the things I wish I said.  The things I should say.

Like “thanks for sharing this.”  I think this every time I read a blog post, or a Tweet, or a Facebook update from someone and it makes me stop and think.  The DOC is filled with voices that challenge what I thought I knew, and who teach me how to re-examine my chronic illness with grace and determination or perspective or humility … or all of it.  I like the way they think.  I like what they say.

And “How are you feeling today?”  I interact with a lot of people touched by illness – patients, consumers, caregivers … whatever word words for you in this way – and their stories touch me.  A lot of the time, I absorb what they’re saying and store it away in my head, but I want to reach out more, ask “how are you feeling today?”  I want the people in our community, and outside of it, to know how much I appreciate what it takes to share their stories, even when they are worn out by doing it, by living it.  A little ask goes a long way.

Or “You aren’t alone; how can I help?”  Because sometimes people share to get things off their chest (“I hate low blood sugars!”), but other times they reach out in hopes of someone reaching back (“I feel so alone with diabetes.”)  Words matter, and hearing, “You aren’t alone; how can I help?” might make a difference.

And “I’m sorry.”  Because I am.

But mostly “thank you” and sometimes, “I love you.”  Over the last few years, there have been people who have come and gone from my life that left lasting impressions, and I bet I didn’t tell them “thank you” and “I love you” nearly as much as I should have.  I know I thought it – thought it a lot after they were gone – but I should have said it then.  When they were here.  When they could hear me and understand the influence they’ve had on my life, the positive mark they’ve left on my existence, and the ways they’ve rocked my world for the better.

Words matter.  Stories matter.  People matter.  So thank you.  And even though you’re reading these words on a glowing screen and we’re communicating mostly through a digital medium, you are part of a community that has forever changed me.

 

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