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Posts from the ‘Diabetes 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

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.

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.

KERRI STOP WITH THE CAVEATING OKAY FINE.

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).
  • YOU GUYS THIS t:slim CLIP IS THE BEST.
  • 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.

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