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Posts from the ‘Diabetes Advocacy’ Category

Thanks, Diabetes!

Feeling bummed about the bullshit of diabetes?  Me, too.  I needed to find a few things to appreciate about this disease before I tried to throw it off the deck.  So here we go.  A quick round of “Thanks, Diabetes!

  • I had to get my flu shot two weeks ago.  The needle was big and went right into my shoulder muscle but I did not care as I do needles all the time.  NBD.  Thanks, Diabetes!
  • I mentally smirk every time I get on the highway and see the speed limit sign:  65.  Always makes me want to throw glucose tabs at the pavement.  Giggle well spent.  Thanks, Diabetes!
  • I had a long, drawn out phone call with someone at my insurance company’s office, all in pursuit of confirming coverage for some high-risk related ultrasounds when I was pregnant.  The woman who had to deal with me was extremely nice and helpful, and she made me laugh out loud more than once.  Were it not for my stupid disease, I never would have chatted with this awesome lady.  Thanks, Diabetes!
  • I was able to efficiently remove a splinter using a steady hand and a sharp lancet.  Thanks, Diabetes!
  • This week, I’ll have a chance to hang out with friends who might not make insulin but who definitely make the world a better place.  Thanks, Diabetes!
  • The charging cord for my t:slim pump happens to fit the charging port for the bluetooth speaker whose charging cord recently up and disappeared.  Thanks, Diabetes!
  • I forced myself to join some friends for a walk this morning in pursuit of bringing my blood sugar down just a little bit.  Had I not put blood sugars into the top priority bucket, I wouldn’t have had the opportunity to spend a little quality time outside in the sunshine with friends.  Thanks, Diabetes!
  • I bought two bags of candy corn and completely considered them a “medically necessary expense.”  Thanks, Diabetes!

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.

Just a Job.

“I’m just a medical assistant, so my job isn’t as important,” she said as she took my blood pressure and entered the data into my digital file.

“Seriously?  How can you say that?  You probably have more face-to-face moments with patients than the doctors do.  You set the tone for the appointment.  What you do matters.”  I paused.  “Take my blood pressure again,” I laughed.  “It probably just went up.”

She smiled.  “I guess it is important.  But not as important as the doctor.”

It’s strange how people think their interactions don’t matter, don’t have an influence on the patient experience.

When the receptionist checks me in for my appointment, she contributes to the tone of my appointment.  Even if she is asking me for my insurance information for the tenth time, or informing me of an outstanding balance on my account, or telling me that the doctor is running late today, the way she delivers that information colors the experience.

When the phlebotomist is steady-handed and double-checks the information on the blood vial label against my file, their attention to detail and dedication to comfort colors the experience.

When the medical assistant makes eye contact, engages the patient, and acknowledges that the data they are collecting is from a human being, not a lab rat, they color the experience.

When the clinician is on time and the appointment is not an exercise in redundancy and checked boxes on an electronic medical record but instead a discussion between a patient and a provider that influences positive health outcomes, that interaction colors the experience.

And when I’m on time, and I have the necessary and requested data from my diabetes devices, when I have my list of questions and concerns, when I pay my bill or file my claim, and when I’m respectful of everyone’s time and expertise, I color the experience.

There is no “just a …” when it comes to the healthcare experience.  Even when it’s not medically coded as a “shared medical appointment,” the appointment is still shared between the patient and everyone their interact with.  Everyone involved makes or breaks those moments for the patient and the healthcare team alike, with each person playing a crucial role in keeping the process effective, efficient, and evolving.




“Do You Like It?”

“Excuse me … your, um, arm?  What’s that on your arm?”

Ninety-five percent of the time, I don’t care if people ask about my insulin pump or CGM.  More power to them for being bold enough to embrace the awkwardness and actually ask, instead of assuming.  (And even in the 5% moments of “argh – stop looking, don’t ask,” it usually ends up being a moment of discussion and disclosure I’m grateful for.  I should be more open to discussing diabetes in a public setting.  Hang on a second … let me start a blog real quick.)

“On my arm?  That’s my insulin pump.  I have diabetes.”

I was in line at Starbucks, grabbing an iced coffee (under the gestational lock and key of decaf for just a few more weeks), escaping the blazing summer temperatures for a few minutes before heading back to work.  I was wearing a skirt and a tank top, with my infusion set connected to the back of my right arm.  My body – thanks to third trimester expansion, has run out of subtle places to stash my insulin pump, so it was casually clipped to the strap of my tank top.

Kind of noticeable, but in a “who cares” sort of way.  It’s hot outside.  And I’m wicked pregnant.  And I have no waist anymore.  You can see my insulin pump?  Good for you.  You can probably see my belly button, too.

“No kidding.  Diabetes?  Is it because of the pregnancy?”

“No, I’ve had diabetes way longer than this pregnancy.  I was diagnosed when I was seven.”

The guy paused for a second, his eyes lingering on the infusion set on my arm.  “So you do that thing instead of shots?”


“Do you like it?”

That question always throws me a little.  Do I like it?  The pump?  I do like the pump.  I like not taking injections.  I like not whipping out syringes at the dinner table and exposing my skin.  I like taking wee ickle bits of insulin to correct minor highs.  I like running temp basals to beat back hypos.  I like people wondering what it might be instead of assuming it’s a medical device.

“I do like it.  It works for me.”  I paused, already envious of the coffee in his hand.  “I like coffee more, though.”

He laughed and finished paying for his coffee.  “Can’t blame you for that.  Good luck with the baby, and try to stay cool in this weather,” he said.

I don’t like diabetes.  That’s for damn sure.  That shit is exhausting and I’m burnt out on the demands it places on my life.  But the pump?  Yes, I do like it.  It’s  a streamlined delivery mechanism for a hormone I wish my body would just cave and start making again.  It handles diabetes so I can go back to trying to put my socks on without tipping over.


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