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Posts tagged ‘type 1 diabetes’

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.

Full Body.

The scar on my lower abdomen is close to healed, after six weeks of careful care.  The incision is evidence of the arrival of my son, the same place my daughter escaped from.  The skin above the incision is still swollen from months of pregnancy and oddly puckered due to surgery.  It’s not a flat, perfectly sculpted specimen of an abdomen.

But I try hard not to care.  My kids were created here.

The marks on my fingertips move every few days as I use a lancet to draw blood every few hours.  Sometimes the dots left behind look like I stuck my finger into a jar of ground pepper, other times they are light brown marks that appear to live deep beneath the surface of my skin.  But they represent moments when I needed to check my blood sugar and actually followed through on gathering that data.

When I look at them, I see evidence of me taking good care of myself.

The scaly patches of skin on my outer thighs are itchy and refuse to respond to lovely lotions and dermatologist intervention.  They are left behind by continuous glucose monitor sensors that I wear to keep tabs on my blood sugars throughout the day and night.  These skin issues are not comfortable or enviable, but the protection provided by streaming my glucose data helps me to sleep better.

My health is worth the inconvenient itch.

And, of course, there’s the shifting of my body, shaped by time and illness and exercise and pregnancies.  Baby weight.  Aging, even when I don’t remember to.  My leg muscles are softer, but eager to be used again.  My eyes have improved during this pregnancy, somehow.  My blood pressure is carefully watched.  My stomach is paunchier than it was 10 months ago.  I weigh myself to see what’s happened over the last six weeks and try not to get too excited or sad at the result.

But the number on the scale doesn’t define me.  Neither does the number on my meter.  Neither does my age.

… right?

I look at my body sometimes and feel a little embarrassed or ashamed because I don’t physically conform to what magazine pages and commercials suggest I should look like.  I’m not tall and willowy with shiny hair and slender arms.  And I admittedly care about the size of the pants or the cut of the dress.  It’s been harder than normal lately because I’m trying to recognize this new person in the mirror, the one who has carried two children and thirty years of chronic illness under her skin, never mind life’s normal wear and tear.

I’ve lived with body image issues that haven’t caused chaos but have given me pause from time to time.  Diabetes has forced me to see my body through a specific lens, not always rose-colored.  Sometimes diabetes makes me feel like I’m broken, unable to make insulin and struggling to create a child.  It’s weird to look in the mirror and see someone who doesn’t look sick but who has felt unwell physically many times, and who requires effort to stay emotionally well.

Other times, the diabetes lens makes me feel as if I have superpowers … like, shouldn’t I be dead because I don’t make insulin?  Every mile I’ve run or weight I’ve lifted stands in contrast to my unmotivated pancreas.  How has my body managed to stop producing a life-sustaining hormone and yet I’m still here?  Can’t I fly, too?  And melt steel doors with my eyeball lasers?

I have to remind myself that there are marks and imperfections on this body that I’ve fucking earned.  There are a lot of scars.  Some visible, others harder to see, but all of them, earned or self-imposed, have contributed to creating me.  This body is recovering from, responding to, reinventing itself in life, and that’s the image of my body I’m holding tightly to.

“How do you explain diabetes to her?”

“How do you explain diabetes to her?”

How do you explain diabetes to your kid?  I wish there was a strategy, a predictable path that conversations about health and wellness could take, like when my daughter brings out The Game of Life and I want to replace all the normal life stuff with the diabetes versions I marked as milestones along the way.

  • First time checking my blood sugar on my own.
  • First time giving my own shot.
  • Explained diabetes to a new friend.
  • Went to a sleepover and my mom didn’t come with me.
  • Earned my driver’s license and permission to get a car after proving I would check my blood sugar every time before driving.
  • Going to the endocrinologist by myself.
  • Moving out and living alone.
  • Managing emotional and physical diabetes-related complications.
  • Creating a family (this would earn me more people in my little car, right?  “People” being the little matchstick shaped things you shoved into the plastic car.)
  • Living beyond diabetes.

Trouble is, there’s no set path that diabetes takes, even with the best intentions and optimal care.  And the milestones aren’t always triumphant.  I’d be inclined to roll again if I landed on the “Manage diabetes distress pockets” or “Deal with health-related discrimination” spaces.

How do I talk about the emotional stuff tied to diabetes without shuffling those emotions right onto my daughter?  When she asks questions like, “Does diabetes scare you?” or “Are you afraid I’ll get diabetes, too?” I’m reaching to roll again.

How do I explain diabetes to my most beloved Bird?  I don’t.  Not entirely.  We have conversations about normal things, with diabetes built into the context clues.  When she was very small, we talked about how she should not push the buttons on mommy’s pump.  As she grew up, we talked about why I wore an insulin pump and other mom’s did not.  Sometimes conversations about low blood sugars came up and we dealt with those as part of the moment instead of scheduling a sit-down discussion with flash cards and a quiz at the end.

But she’s tuned in, and she notices things.  And in the last year or so, she’s elected herself captain of my support team.  If my Dexcom low alarm goes off, she drops everything she’s going and comes over and wraps her arms around my waist.  I don’t know what prompts her to do this – sometimes I think it’s the vacant look in my eyes when I’m low that makes her feel the need to double-check on me.

“Does this help, Mom?”

“It does,” I say, through a mouthful of candy corn.  “You help.”

If she were to list five things about her mom, diabetes might be on that list.  But it comes with expectations of conferences at Disney World and friends around the world, and sure, there are doctor’s appointments and moments where I need a few extra minutes and sometimes I am distracted by the need to reapply a sensor or prick my finger and all these things that beep, but that’s life with this disease. Diabetes is a cumbersome to do list that comes with a monster under the bed who I don’t often make eye contact with.

But we manage.

Explaining diabetes to her is its own challenge.  But sometimes, through her eyes, she re-explains diabetes to me.



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