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Posts from the ‘Diabetes Community’ Category

Beyond Type 1: LOVE IS ON.

Despite being up to my eyeballs in parenting stuff [insert baby who doesn’t sleep at all at night plus a big sister who had her first ear infection over the weekend here], I have been online.  And I’ve totally seen the Beyond Type 1 black-and-white photo’d community posts scrolling by, asking for donations and awareness for the Revlon LOVE IS ON Million Dollar Challenge.

I’ll admit that I was a little confused at first.  If Beyond Type 1 was aiming to win a million dollars from this campaign, why were they fundraising?  Of course the goal is to earn $1 MM for Beyond Type 1 courtesy of Revlon, but why are people fund raising if the goal is to win the big prize?  Is it to show how much the community can raise first?  Also, what does Beyond Type 1 plan to spend the prize money on?  I’ve been very impressed by the presence that Beyond Type 1 has created in the diabetes community, but I’ll admit that I’m not exactly sure what the organization does, or plans to do, outside of awareness.  (And I’ll also admit that I haven’t been focused on diabetes stuff in the last seven weeks, making me unaware of The Obvious lately.)  I needed to learn more.

So I emailed with Mary Lucas, Community Partners and Programs Manager for Beyond Type 1, and she provided me with some clarity for my confusion.   (All italicized answers below are from Mary, who is patient beyond patient when it comes to replying to multiple scattered emails from this exhausted new mom.)

From Mary:  

The Revlon LOVE IS ON Million Dollar Challenge is a six week challenge that 150 charities were invited to participate in. At the end of those 6 weeks, the nonprofit that has raised the most money total is awarded an extra $1 Million from Revlon. There are smaller consolation prizes for second and third. Every charity still gets to keep their money raised, it is just an extra added bonus. On top of that, the nonprofit that wins would be accepting a comedically-sized large check in a very public setting with media, etc. and would subsequently drum up a ton of press and hype around that charity and the cause associated with it. It would be really great to have a diabetes charity up there accepting the $1 Million from Revlon, as it would really help get T1D into the mainstream press and media.

As a non-profit, all our operations are covered by leadership and founding friends, so 100% of all money donated to us goes back into our portfolio of programs and investments.   This means we are fully operational funded, so $1 in to us is $1 back out into the diabetes community, not 75 or 80 or 90 cents, but the entire dollar, which is pretty rare for a non-profit. So far, we have invested in both our own native programs (that we currently offer for free for everyone in the type 1 community) such as our Snail Mail Club, the App, Education Initiatives and Resources, Camp Sessions, and the DKA Awareness Initiative we will be rolling out nationwide in just a few weeks.

We have also given grants to organizations working on cure efforts such as ViaCyte and the DRI, technology efforts such as Nightscout and Tidepool, and community /education /advocacy efforts like The Human Trial Film, Riding on Insulin, Marjorie’s Fund, and T1 International. The grant we gave to Marjorie’s Fund last year actually helped open a new diabetes education center in Uganda this summer! (To learn more about all of the grantees, etc. you can visit this page on the website.) We like to fundraise for a variety of things across the areas of educate, advocate and cure — we want to help people living with T1D today while still researching and working towards a cure for tomorrow.

If we won the Revlon Challenge, the extra money would be used not only to help fund our native programs and keep those going, but would also enabled us to open up applications for grants once again.

The Revlon Challenge also has some cool opportunities and bonus challenges they do throughout (such as matching donations, etc.) and we also have done some fun things like offering a Percy the Plushy Snail (our Snail Mail Club Mascot who is not for sale yet but is pretty much the cutest thing ever – he has an insulin pump!) for everyone who donates $50 to Percy’s fundraising page. And of course right now are doing the Nick Jonas meet and greet giveaway – so people have some cool opportunities to win extra stuff!

Thanks for all of the information, Mary!  Now I have a better idea of where our donation is going when we chip in for the Million Dollar Challenge.  Here’s hoping Beyond Type 1 is able to win the challenge and bring diabetes into mainstream discussion.


Type 1 Origins: Talking Comic Books with Partha Kar.

Dr. Partha Kar

Dr. Kar has been a Consultant in Diabetes & Endocrinology at Portsmouth Hospitals NHS Trust since 2008 and the Clinical Director of Diabetes from 2009-2015.  One of his main areas or passion is in helping to redesign diabetes care in an attempt to integrate chronic disease management across primary and secondary care.  He’s won many awards and has helped patients with diabetes across the spectrum.  I’ve been following UK endocrinologist Dr. Partha Kar on Twitter for ages now and have been watching the development of his type 1 diabetes-centric comic book with excitement.  Just recently, the comic was released into the wild.

The superhero twist that wraps around the diabetes narrative makes the idea all the more interesting.  According to the comic intro, “As comic and superhero fans, it seemed to us that there were some parallels between the times when a type 1 diabetes diagnosis is made and when a superhero discovers their powers for the first time. There is often shock and surprise among the feelings experienced in both situations, followed by acceptance and adaptation.”

I couldn’t agree more, and was thrilled that Dr. Kar took a few minutes of his time to answer some questions about his work, the comic, and the DOC.

–   –   –

Kerri: Thanks for taking the time to answer a few questions, Dr. Kar! Can you give me a little background on your involvement with the diabetes online community, and how diabetes has touched your life, personally?

Dr. Kar: Social media and interaction with the DOC probably has been the biggest education I have received in my career. Its been fun, enjoyable and educational and I have enjoyed so much of it! Personally, this is my life, my work, my job and everyday in one way or another, diabetes always affects what I do – much needs to improve in my view. I see folks struggle every day with little things – somehow it would be nice if even a little bit of that could be improved.

Kerri: I’ve been watching the development of your T1D-centric comic book with great interest from the US. Can you tell me a bit about why you created this comic?

Dr. Kar: Comics are great source of education-as far as I am concerned – I have always loved how they have explored the issues of social isolation (X men); teenage angst (Spiderman) etc. and has always been one of my loves of life. Somehow it seemed natural to join that and diabetes together – it felt like a medium which hasn’t been used much – and perhaps could help with showcasing type 1 diabetes and raising awareness.

Kerri: What makes the narrative of diabetes so important, in your opinion?

Dr. Kar: Diabetes is and always has been a multifaceted condition – ignorance towards it – or simply labeling it as a condition of “being unhealthy” is wrong on so many levels, let alone the different types which are totally different entities. Its important we make that clear.  Type 1 and type 2 diabetes are fundamentally different with fundamentally different needs – it’s important as HCPs that we help in raising this awareness too.

Kerri: Who helped you bring your creative vision for the diabetes comic to fruition?

Dr. Kar: As regards the comic book, big thank you to many individuals. I don’t have type 1 diabetes – it would be silly as fellas wrong for me to do the narrative – I wouldn’t even know what it is to have a hypo. Thus, my huge thank you to Andy Broomhead, Jen Blackwell, Laura Cleverly, and Joe Griffiths who helped create the story board. Danny Mclaughin from Revolve Comics was the dude who brought it all to life – while my co-conspirator was Dr. Mayank Patel- we have always call each other Bruce & Clark. I will let you figure out who is who!

Kerri: What are you hoping to accomplish with this piece? And what part of the comic are you most proud of?

Dr. Kar: Raising awareness is a key theme, as well as maybe helping to explain type 1 diabetes to someone newly diagnosed slightly differently. My analogy is that its perhaps like a super power – but not one which people want – sort of like the Hulk, who spends his entire life trying to find the cure but along the way, learns to live with it, sometimes control it … a super power he never wanted in the first place. Proudest part? Perhaps the panel where the character meets someone he knows and understands he is not “alone.”

Quality nod to S.H.I.E.L.D.

Kerri: Outside of the comic trade, I know you’re actively involved with the diabetes community as a healthcare professional. What is your background as a healthcare provider, and how does that background intersect with your creative outreach efforts?

Dr. Kar: I like trying different things- for example a one stop shop for those with type 1 diabetes or indeed TED style talks. I like changing things, shaping new things, exploring new horizons … I suppose I like a challenge and for certain, improving type 1 diabetes care is no small one. I have a huge desire to improve type 1 diabetes care – let’s see where it takes me!

Kerri: How can readers of Six Until Me check out your comic book? And also, how can they connect with you on social media?

Dr. Kar: Comic book is free! Go to Revolve Comics and feel free to download- use it, spread the word and hey if you like it and want more, come back with ideas! Who knows – I have ideas swirling in my head about turning this into an animation … early days but who knows!

As regards getting in touch- just follow me on Twitter (@parthaskar) and feel free to poke, ask anything you want. As I say to all and sundry, if asked with respect, no question is tough- if I don’t know it, I will be the first one to put my hand up. I look forward to interacting with as many folks with T1D as I can.  As I said, it’s always such a fab learning opportunity and I genuinely enjoy the chats.

 –   –   –

Thanks for chatting with me, Dr. Kar, and I’m looking forward to more from your team of superheroes!  To download the comic, visit Revolve Comics and you can grab it for free.

ConnecT1D Retreat.

Until a few months ago, I didn’t know much about the peer-to-peer support and family connection accomplished by ConnecT1D.  It wasn’t until Susan Horst reached out to me to see if I was available to visit for their ConnecT1D retreat that I was thrown into their world of the powerhouse diabetes outreach taking place in the Pacific Northwest.

Susan Horst, project manager at ConnecT1D, shared her personal story over at A Sweet Life, shedding light on what brought her into the diabetes space in the first place and what keeps her here.  She was tasked with organizing and launching the first ConnecT1D Retreat and it was an event that both inspired PWD and ignited friendships. Joe Solowiejczyk and I were charged with facilitating discussions and delivering the keynote addresses, alongside Jody Stanislaw, Cassady Kintner, and other speakers touched by diabetes.

The Facebook group for this event was a little quiet before the retreat, but after everyone had a chance to connect, discussions started to blow up (in a good way) in the threads.  People were reconnecting, firming up plans, and sharing photos of experiences with new friends.  It was awesome to watch the group transition from “functional” to “frigging unstoppable.”

Jo Fasen, an attendee with T1D, said, “[The] ConnecT1D Retreat created a wonderfully unique opportunity, offered no where else that I am aware of, to connect in a safe, fun and friendly environment. Everyone could share in their own way and we learned from everyone while the speakers addressed serious issues and concerns with humor and humility. Memorable, compelling, impactful are only some of the words to describe this experience … and I don’t know anyone that won’t be back next year.”

Julie Schliebner said, “To connect with others sharing in the same struggle was invaluable to me. When I feel less alone and understood I am able to ride the roller coaster with greater self compassion. I am so grateful to ConnecT1D and each attendee. I really look forward to more time with this community. I want to attend every single year!”

Jim Cheairs chimed in with two things:  “I understand that I don’t have to live with T1D in a vacuum and I am in the process of ordering a CGM … [a] Dexcom, which is a result of info gleamed from others at the retreat.”

“The retreat aspect of the weekend is what made it the best ever,” said John Highet.  “Saturday’s conference was great – don’t get me wrong, with really good talks and really good participation & interaction.  But the real connecting didn’t start for me until the walk to the ferry with Brandon and Brenna VanDalsen and didn’t end until the ferry ride back to Seattle with David, Patricia, Alex, and Joel. In between were connections with many more, enjoying the sun and resort, just hanging out, and some inspiring, vulnerable and emotional small group breakouts on Sunday. It will be hard to top this, but I will be there whenever it happens.”

“For the first time in my life I felt like I wasn’t alone with type 1 diabetes,” shared Lauren Sorteberg.  “Connect1D was amazing and the speakers were down to earth and real! It shaped me in more ways than I could have imagine! It was an emotional, eye-opening experience.”

Diana Cheairs brought some spousal perspectives, attending the retreat with her husband (who has type 1 diabetes).  “I missed the first day so I didn’t know I am a T3 [person who supports a PWD]. All the T3 met outside by the beautiful willow tree. Looking around at all of us, many of us realized that we had never spent any time with other spouses of T1’s. Most of us had never even met another spouse of a T1.  Wow , that was weird to realize that in the 20 years out of 38 years that Jim and I have been together I had not spent any time with a T3. I shared things with the group that I have not shared with others because those others would not have understood.”

Access to sound and reasonable medical advice is necessary for a healthy life with diabetes, but peer-to-peer connections are just as essential.  Sitting with a group of people who understand the intimacy of diabetes, both emotionally and physically, can be a powerful healing and dealing strategy.  I’m grateful to have had the opportunity to visit the ConnecT1D group and see the power in their collective stories.

Attendee Tracy Wu summed it up perfectly:  ” It was such a great weekend for my mental well-being and gives me more oomph to face tackling diabetes for another 32 years!!”

Diabetes Blog Week: Tips and Tricks.

Tips and Tricks:  Let’s round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There’s always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.) 

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

Let’s jump right in and say that every suggestion I have is borderline dangerous.  Why?  Because I am someone without a medical degree writing about my personal diabetes best practices on the Internet.  That said, anything you read here that’s considered a “tip” or a “trick” is not something you should try without talking to your doctor.  Because I am not a doctor, nor am I your doctor.  And this morning I let the coffee pot run without a coffee cup underneath the spout thing.  Consider your source(s).

That also said, I have close to thirty years of experience with type 1 diabetes, so there is more than a shred of validity to my scope of experience.  If something resonates, party on.  But don’t take any of this stuff as medical advice.  Please.  For the love of god.


Tips and tricks.  Here’s a bulleted list of weird shit I do to make diabetes less intrusive and more malleable:

  • I put Toughpads underneath my Dexcom sensors to keep my allergic reaction to the adhesive at bay.  This works reasonably well – the blistering welts have stopped, but long-standing patches of scaly, raised skin remain for weeks, if not months, at a time.
  • Re: the scaly skin bit, I sprayed anti-fungal spray on the most irritated patch of skin this morning.  Mostly out of frustration, but also because I read somewhere that it might help.  If it does anything useful for healing my skin, I will share that information.  For now, please don’t judge me because I off-labeled the shit out of athlete’s foot spray.
  • Out of pockets?  Wear your insulin pump in your bra (but beware those pesky disco boobs).
  • During all three pregnancies (and most notably the two that made it past the first trimester), I downloaded my diabetes devices and examined the data.  This is cumbersome and annoying and one of my least favorite diabetes to-do tasks but it HELPS.  Citing it as a trick or treat tip feels goofy because I should be doing this anyway, but I usually don’t.  And now I do.  And it helps.
  • I charge my devices when I shower.  And since I am a hygeine-freak, I shower very regularly.  I charge my t:slim every three days or so (usually not letting the percentage of charge fall below 50%), and my Dexcom receiver (using the G4, per my doctor’s preference, until I deliver the baby) once or twice a week.  I charge my Verio Sync meter once a week, at best.  A full battery is exciting to me.  Which illustrates how much I need to leave my house today.
  • I keep a charger thing in my car.  And Tandem provides a snazzy one with their pump, which I keep in my glove compartment.  (Hey, disclosure.)  Seems like overkill when you don’t need it, but when you do need a power boost, it’s beyond handy.
  • I also keep a few slips of Opsite Flexifix tape in my wallet.  Has been busted out as necessary on dozens of occasions.
  • And while they are most noted for keeping cans of beer … safe?, I guess? … I have an insulin bottle rubber sleeve to protect the vials.  Has kept more than a few bottles safe from the bathroom tile.

Do you feel tipsy now?  All full of tricksies?  There you go.

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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