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Posts from the ‘Diabetes Online Community’ Category

Muted.

Ahh bullet points.  Ye be the only(e) way I can process things at the moment.

  • I don’t have a lot to say over here lately, and there are a dozen different reasons for that.  One is that the new baby kiddo keeps me extremely busy, what with his cluster feeding and chatty ways, and also the fact that he is still not much of a nighttime sleeper, with his sleepless nights becoming my sleepless nights.  Which translates into not a lot of creative brain power during the daylight hours.
  • (But holy fuck am I creative at night.  I make up songs on the fly, can produce ounces of breastmilk without a second thought, and have taken to texting writing ideas to myself with one hand while hugging Guy Smiley with the other.  The problem is executing on these ideas once the sun rises, because it’s then that I fall apart.)
  • The baby is getting much bigger, though, and even though we’ve had some issues getting him to gain weight (not a problem now – more on that tomorrow or Friday), he’s thriving perfectly now.  He has also entered that super smiley/finally giving feedback stage, which I love.  The baby grins and gurgles are my favorite.  He sounds so much like his sister at this stage, and yet he’s so distinctly himself.  His smile lights up the room, even when he’s spitting up into my freshly washed hair.
  • My kids are my focus these days, which keeps my heart full but my blog kind of empty-ish.
  • I’m also reluctant to get political in public, mostly because the diabetes community is united by busted pancreases and political discussions have the potential to cut our crucial community in half, but the election did not go the way I had hoped and I have grave concerns about health insurance, safety, and social issues these days.  This is contributing to the maelstrom of thoughts in my head, and the CGM frowns on my desire for Tylenol.
  • The election circus also sort of sucked the wind out of my sails in terms of diabetes awareness month activities, as well.  I’m having a difficult time focusing on the diabetes community when the country as a whole seems to be imploding to a certain extent.  I wear my blue circle pin when I’m out and I gave a presentation at a local hospital system last night, but for the most part, I’ve felt quieter than normal these days.
  • And another reason for my silence is that diabetes isn’t fun to talk about lately.  Back when I first started blogging, I would share a lot of the minutiae because I’d never had the chance to get that sort of stuff off my chest before.  Talking about a rogue low blood sugar that hit while I was in the shower?  That story came out easily.  But all of those diabetes moments feel redundant lately.  Yes, I was low.  I was high.  I was frustrated.  I was burnt out.  I was empowered.  I made steps forward in some areas, backwards in others.  It isn’t interesting to me at the moment.  When I think about diabetes, it’s this hamster wheel of the same tasks and the same emotions earning similar outcomes.  I’m still living with this disease, still trying to manage it, still having good and bad days.  Documenting those moments isn’t coming as easily to me anymore.
  • Maybe it’s because of my increased desire to keep more things private, even in the health space.  I looked back at some of my past blogs and saw that I’d chronicled a lot more of my pregnancy with Birdy than I did with my son.  I definitely blame infertility and fear of losing another pregnancy for that silence, but even now that my son is out and safe, I’m still reluctant to share a whole bunch about him.  I have a monthly letter than I’ve been writing to him (there’s two done already and a third one is in my mental queue … maybe I’ll feel up to sharing that third one here sometime) but I like keeping those in his email account (password to be given to him when he’s older).
  • Maybe this privacy surge is a result of being older.  Or tired.  (Or maybe being tired is a result of being older.  See also: non-sleepy cute infant person)
  • I love the diabetes community – truly love it – and I remain a big fan of blogging,  but maybe long form blogging is starting to shift a little bit.  Lots of activity on Instagram and Twitter (never got into Snapchat – my luck, the cat would walk by and puke while I was recording a video or something), but the long and winding blog posts are harder to find these days.  Do they require more effort to read?  I keep seeing things on Medium marked as “long reads” that are also marked as “8 minutes” and that sends me into “get off my lawn” mode because is eight minutes really a long read?  Does that means all books are becoming pamphlets and Jodi Picoult will suddenly start writing her tomes in tiny tattoo form?
  • I think I’m a little tired, overall.  Tired of diabetes (post-pregnancy burnout in full swing, thank you very much) and tired from adjusting to the arrival, chaos, and joy of a newborn baby. (I think there’s some guilt half-baked into that, because I wanted my son so much that I feel a little guilty about some of the exhausted frustration I’ve felt.  I could not possibly love him more, and I simultaneously could not need a nap more.)

Things will settle down.  I’ll post here as time allows and as inspiration strikes.  Diabetes will always be here, right?  It’s okay to take a breather from talking incessantly about it.

90% of my day is this snuggly.

A photo posted by Kerri Sparling (@sixuntilme) on

#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

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.

THE CONTEST ENDS OCTOBER 26th, SO IF YOU’RE GOING TO GET INVOLVED, NOW IS THE TIME!  🙂

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.

Racing on Insulin: 100th Running of the Indianapolis 500.

What did you do this weekend?  Me?  Oh, I spent Sunday afternoon with 41 of my DOC friends at the 100th running of the Indianapolis 500 race.  Sort of.

Diagnosed with type 1 diabetes in 2007, Charlie Kimball is driving the narrative about type 1 diabetes as the first licensed driver with diabetes and first licensed driver to qualify for and complete the Indianapolis 500 in the history of Indycar.  He and I have known one another for many years (he’s been a good sport as far as videos, Twitter, and allowing my infant daughter to sit in his race helmet), and it’s been truly humbling AND EXCITING to watch Charlie rise in the Indycar circuit.

And on Sunday afternoon, Charlie Kimball got behind the wheel of his No. 42 Tresiba Chevrolet and took to the racetrack.  But he wasn’t alone; he had his Novo Nordisk Chip Ganassi Racing team by his side, and the names of 42 diabetes community friends emblazoned on the sides of his car.

I talked with Charlie on Friday, before the race, and he shared a little bit about why he raced with diabetes advocates on his car.  “With the Indianapolis 500, there’s so much history, so many stories, so many anecdotes.  Novo Nordisk and Chip Ganassi Racing wanted to do something to kickstart the conversation about diabetes.  We wanted to do something cool, something to make sure that the diabetes community had their story heard.”

This weekend, Charlie wasn’t racing as #83, but instead as #42.  “The number 42 comes up often – there are 42 names on the car, Tresiba [new basal insulin available through Novo Nordisk] lasts for 42 hours, and 42 is the number on Kyle Larson‘s car.”  (Kyle Larson races NASCAR, and Kyle’s cousin Justin has T1D.)  “People don’t often see that Chip Ganassi has real team relationships across series, which is why I’m proud of the tie-in this weekend with Kyle.”

“Yours was the first blog I read that gave me the confidence to talk openly about diabetes.  You, them, us as a group drive that conversation about diabetes and engagement.  Diabetes is a big part of what I do and who I am.  And [putting the names on the car] is an opportunity to encourage the story to be told.”

And Charlie told his story, and ours, by finishing 5th in the Indy 500.

 

Way to go, Charlie!!  Thank you for continuing to represent the diabetes community – we’re proud to be part of your team.

(all photos credited to credit to LAT Photography USA)

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