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Posts from the ‘Psychosocial Support’ Category

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

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.

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.

 

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