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Posts from the ‘Diabetes Advocacy’ Category

One More Sneaker.

This week, in my quest to become a Lady of Suburbia, I went to Marshall’s to pick up a lamp.  (I also bought pumpkin coffee beans.  Whilst wearing yoga pants yet not doing yoga.  In the middle of the day.  Forgive me.)

This visit was on the same day that I was sharing a #dayofdiabetes (peek in on the hashtag here), so diabetes was a documented focus.

The cashier was a nice lady who wanted to chat.  As she was ringing my purchases up, we both overheard the cashier next to her ask a patron if they’d like to donate to the JDRF.  “No, not today.”

“I hope some people say yes about donating to JDRF,” I said quietly to my cashier.

She nodded as she put my things into a bag.  “Yeah, most people say no.  I haven’t had a single donation yet today, but I had a few yesterday.   I always ask, though.  It means a lot to me.”

“Oh yeah?  Do you have a personal connection to diabetes?”

“I do.  My dad has diabetes.  Type 1, since he was about eight years old.”

“Really?  Me, too.  I was diagnosed when I was seven.”

She looked at my face, then her eyes drifted to my hip, where my insulin pump was visibly clipped.  “No kidding?  Is that your pump?”

“It is.  I’ve been pumping for about ten years.  I use a continuous glucose monitor, too.”

“My dad is old school.  He does the injections with syringes.  He’s had it my whole life.  He’s had some low blood sugars that I remember.”

“My daughter is five.  I bet she’ll have stories about my diabetes when she’s our age, too.”  I smiled at this woman who was the fast-forward of my own little Bird, a child without diabetes raised by a person with diabetes.  This woman’s understanding of my own day-to-day was intimate, and we had yet to exchange names.

As I paid for my purchases, she raised an eyebrow.  “Do I even have to ask if you’re donating?”

I shook my head.  “Nope.  Count me in for a sneaker or two.  One for me, one for your dad.”


To A Crisp.

The folks at Diabetes Daily have cobbled together a day to discuss diabetes social media burnout.  (Yes, ironic to dedicate a day of online discussion about diabetes social media burnout …) but the topic is real and something that we have all encountered over the years, so it bears discussion.

Only I’m not talking about it today.

Why?  Because I don’t really feel up to it.

The crap that I have to do to stay on top of diabetes is non-negotiable.  Checking blood sugars, making careful food choices, exercising, blah, blah, blaaaaah.  That stuff is part of the repertoire I cannot ignore without putting my health at significant risk.

But the blogging partTwitterInstagram?  Answering emails?  That’s not required for diabetes management.  That’s auxiliary.  And mostly positive, in my experiences.  The Internet isn’t always the cuddliest place, but in the diabetes community there is a welcomed trend of positive interactions and real, substantial relationships with people touched by diabetes coming together to share experiences, ideas, and to help someone carry the parts of diabetes that get a little heavy at times.

But these connections are not required.  They are a choice you can make, just like opening your computer or clicking away on your smartphone.  More choices follow from there, steeped in personal preferences:  Download the Facebook app on your phone?  Only use Twitter during #dsma?  Take weekends off from social media?  Engage with trolls?  Engage in supportive interactions and fruitful friendships?  Give a shit about cruel things that people might say?  Ignore/block/delete unwanted commentary?  Seek out local, in-person meet-ups?  Have long text message threads with friends you’ve made in the DOC?  Dedicate your personal and professional life to diabetes efforts?

… or how about take a breath?  Enjoy a combination of what’s available.  Relax a little bit.  Enjoy social media as an option, not as a requirement.  The Diabetes Online Community is a tool in our diabetes management toolbox.  And just like with any toolbox, you don’t always need the same one.  (Avoid trying to use a flat head when you need a Phillips.  Don’t use a hammer when you need a steamroller.  Learn the difference between a level and a wrench.  Never substitute playdough for a nail.  Don’t chew on a socketwrench.  Et cetera.)

For more on diabetes burnout with a side of social media, check out these posts:

Slightly Charred

Show Me Your Pump … Or Not


Talking About Diabetes Burnout

Happy Birthday, Dr. Seuss!



Guest Post: Keep Calm Once They Cover Dexcom.

Today, Colleen is taking over my blog while I’m taking a few days off.  And I love her introduction bio so much that I’m pasting it in without edits.  Colleen is terrific, opinionated in a way I respect deeply, and today she’s talking about the importance of having access to a continuous glucose monitor (CGM) as she ages.  Take it away, Colleen!

*   *   *

I signed up for Medicare this year. Deep breath. (I’m having a really difficult time believing that I’m 65.)

I’m not using Medicare (yet) because I’m still working. I like my job. I like my insurance. I like my five minute commute. But mostly, I like my Dexcom CGM (Continuous Glucose Monitor).

I always thought I’d be retired, lazing around, maybe playing some tennis.

Not really, I’m not lazy and I haven’t played tennis in a gazillion years. But, I really was looking forward to doing some volunteer stuff, especially working with kids who have learning difficulties. I’m a former Special Education teacher and I love seeing/helping kids to “get it.” Literally watching that invisible light bulb start shining when they would “get it.”

Instead, I’m working so that I can keep my Dexcom CGM.

Not to worry. I’m not suffering – I work as a church secretary, an absolutely delightful job!

Several years ago, when I started seeing a dermatologist, he explained that removing those things growing on me would be covered by my insurance because, “It’s covered by Medicare.” I was insulted and stated, “For heaven’s sake, I’m NOT on Medicare.” He then explained that if it was covered by Medicare, then insurance would pay for the procedure. “Oh…”

And now, turning 65 – my own light bulb has turned on. But it’s not going anywhere.

I remember talking with my primary care physician at an appointment once and saying how I work so hard to maximize my use of health insurance. I am careful to coordinate lab work with her and my endocrinologist. I keep up with scheduled appointments. I try very hard to be a wise consumer of health insurance. And she calmly replied, “You’re cheaper to Medicare if you’re dead.”

Well, that sucks.

Maybe – but – the cost of keeping me alive might be a sh**load more (Kerri said I could use bad words) [Editor's interjection:  You can use all the words you'd like, Colleen.]  without my CGM.

And I truly believe that soon – Medicare will figure out that the expense of a CGM is whole lot less than the expenses of ambulances and ER visits and hospitalizations.

There is no public transportation up here in the woods so, I have to drive.

I almost always (I’m being honest) (95% of the time!) check Dexcom before I drive anywhere. I frequently have to make short trips during the day for work and Dexcom has certainly kept me in my office/the parking lot sipping on juice before leaving.

I hate shopping. Yes, really. Shopping irritates me. Shopping and going low is really annoying. The nearest real mall is over an hour away and there have been times that I’m pulled over at an exit or a rest area because Dexcom beeped at me. More juice … (Not easy in the winter when it’s frozen. Yes, I have glucose tablets, also.)

We get a whole lot of snow up here on our hill. And it’s not plowed every hour on the hour. There are times we literally cannot get out (or in). I’ve checked with our local police to ask – what would happen if I needed an ambulance in the middle of a snowy night? The answer – They’d hike up our hill with a sled to get me out if needed. Scares the sh** out of me.

Way back when I was diagnosed, I knew I would want a pump. At that time, you had to have been on MDI (Multiple Daily Injections) for a couple of years before they (insurance) would even think about approving a pump. By the time I was ready to start pumping, it wasn’t that difficult.

Thank you to everyone who advocated for pumps for all of us who want one.

Way back when, Kerri was one of those people writing about her fight to get a Dexcom CGM – with letters and refusals and more letters and more proof and finally – Dexcom. By the time I was ready to start using a CGM (I always swore there was NO WAY – have you seen the needle in those things?), getting a CGM wasn’t as difficult. (That needle? Not an issue.)

Thank you to everyone who advocated for CGMs for all of us who want one.

And now – those of us who are and will be the d-elders need to be able to continue using or begin using CGMs for better health and safer living. And your help is needed. You’re not just helping the older d-people. You’re helping yourself. Because you know what? We’re all leading healthier lives even with Diabetes because we work hard to stay healthy. If a CGM helps, we should all have access to that.

How can you help?

JDRF makes it easy. Go here:

Help others, and help your future selves -  and the children who will grow up – just by contacting a few of your state’s senators and representative.

It’s a win-win for all of us.

*   *   *

From Colleen:  “I’m Colleen and I have type 1 LADA – Latent Autoimmune Diabetes in Adults. Diagnosed at the age of 55 (yes, really!), I was just a tad surprised. My husband and I live and work in New Hampshire and even enjoy the snowy winters. We could be retired but, the need for health insurance has us both working at a local church. Yes, together. Yes, we’re surprised. No, we haven’t killed each other, yet.  Hope you’ll introduce yourself and it’s nice to meet you!”

Please say hello to Colleen, either on this post or at her blog, D-Meanderings.  For more on the goal of covering CGMs for Medicare, check out these links:

Slightly Charred.

Diabetes burnout and social media burnout have a tendency to go hand-in-hand for me because it becomes tiresome to document my failures.

“No, the failures of your pancreas,” said a friend.

Nope.  The failures of me, pancreas and all.  I can’t separate the two.  Diabetes challenges me emotionally and physically because I am lucky enough to deal with a disease that offers me a fair amount of control … which translates into a predictable to do list.  As much as I try to reduce my level of responsibility when it comes to this crap, I have to own my role in this disease.  It’s not something I could have prevented, but it is something I have to deal with.  I look at other health issues in my life and realize how little influence I have over them.  And then I look at diabetes and I’m forced to acknowledge that this disease is a confluence of intention and reaction.

Writing about diabetes has become hard some days.  It used to feel good to write about a low blood sugar and get that story out there because it felt like a purging of bad feelings, and the flood of “me, too!” moments made the edges of frustration softer.  Now there are moments when sharing feels pointless; no one needs a reminder of why my disease can be a pain in the ass … least of all me.

I have good intentions.  I intend to take care of myself, and despite the variables that influence diabetes outcomes, I make efforts.  (I exercise.  I eat well.  I don’t smoke.  I am proactive with my medical appointments.  I check blood sugars and take insulin.  I list things that seem smug, like the aforementioned list.)  But diabetes is still diabetes, and I am still reacting to the disease a fair amount of the time.  Reacting to a low (eat something!) or reacting to a high (bolus!) or reacting to a skin irritation (Toughpad me) or reacting to frustrations related to the diagnosis of complications (eyeball fuckery) or reacting to the underlying theme of always hoping for the best and yet being pragmatically prepared for the worst.

Community helps me process this stuff.

Community is a good way for me to manage my emotional health as it relates to diabetes (directly).  Connecting with peers helps me find my footing in moments when I feel like diabetes is dominating.  But that sounds so formal, like secondary headline on a journal article.  The diabetes online community and all this blogging stuff has given me so much in terms of emotional health success.  So what am I doing, writing about social media burnout?  I actually feel stupid saying that there can be burnout from social media, even though I know there can be.  It just feels like the most first world issue there ever was.  Almost like having too many pairs of sturdy shoes – “I simply cannot manage all of the opportunities that are available to me!  Woe is my woe-crammed self.”

So am I burnt out?  Or just slightly charred?  And do I need someone’s permission to voice this issue?  (No.)

Sometimes I question my decision to (over)share so much of my diabetes process in a public setting.  Putting information out to the Internet invites strangers to comment and critique, which is productive when the discussions are empowering and awful when the discussions are cruel.  I’ve had a lot of positive experiences overall via the Internet but it’s been a mixed bag at times.  Which I’m not surprised about – not everyone will like everything, or support everything, or spell everything correctly – but at the same time, it surprises me when I see people rip others apart for their shortcomings or vulnerabilities.  Watching people run commentary that’s hurtful detracts from the nice, mellow community vibe that I appreciate most.  Basically, sometime people (myself included) are dicks, and I hate when that happens.  It makes it harder to share openly and to support.  As the years go by, I want to share less because I want to protect my right to fuck up.  It’s a weird halfway, because the moments where I fuck up are the ones I need the most support during.

So what’s the point of this post?  Here you go:  On September 1st, the team at Diabetes Daily wanted to generate some discussion about social media burnout.  And I hope people talk, because discussions like these make our community stronger.  Or at least that’s the goal.

It’s not about curating a perfect online existence; it’s about living a real, healthy life even with the raw and ragged edges.

Panel: Challenges in Healthcare Leadership.

Yesterday, I took part in a panel discussion at the Executive Master of Healthcare Leadership Class of 2017 Convocation at Brown University (say that three times fast … I sure as hell can’t) and part of our discussion was about leadership in the healthcare space.

My fellow panelists were folks who were employed in the healthcare arena (Michael Hudson, EVP of Blue Cross Blue Shield, Secretary of the Executive Office of Health and Human Services Elizabeth Roberts, President and CEO of Care New England Dennis Keefe, Director of Alnylam, Ironwood, Momenta Pharmaceuticals Marsha Fanucci … and me), and I thought about who I work with:  medical device companies, diabetes advocacy organizations, magazines, publishers, etc.  I like the work that I do and I like the organizations I work with.

But, but, but.  Who do I work FOR?

The people I work for are people touched by diabetes, and to be honest, that starts with me and my family.  (My oxygen mask on first, right?)  One of the attendees yesterday asked me what kind of advocacy work I did as a kid with diabetes, and I admitted, “None.  I decided to get involved when I was in my mid-20s.  Before that, I didn’t do much at all in terms of diabetes advocacy.” It took time for me to grow into a desire to connect, and that desire was driven by isolation.

I joined this community because I didn’t know anyone in my day-to-day who was dealing with diabetes.  That absence of community drove me to seek out my peers and find people with whom I could be weird together.  And now this community of like-pancreased people can lean on one another and learn from one another in ways and about things that healthcare professionals aren’t able to provide.

Spent some quality time yesterday with the EMHL class of 2017 at Brown University. #rhodypride

A photo posted by Kerri Sparling (@sixuntilme) on

I spoke about the positive influence of patient communities a lot yesterday.  When discussions turned to the silos of healthcare and the dissemination of information, I advised people to take cues from patients who are sharing their stories online for a how-to.  “If you want to see information that’s crowd-sourced and self-policed, hopefully without a whole bunch of egos and competing interests, the online patient communities can give you some tips on how it’s done.  It’s not medical advice but it is honest and shows what illness looks like in the wild.  Patient communities take information from medical teams and integrate it into real life, with better health outcomes as the goal.  And that’s what we all want, right?”

Discussions about “what makes a good leader” took up the better part of the afternoon discussion, and I leaned heavily on bursting the bubble of privilege.  “My job as a voice in this community is to recognize what I have access to and what others are striving to gain access to.  My refrigerator is stashed with bottles of insulin, while some of my fellow people with diabetes are panicked about where their next injection will come from.  I need to remember that and raise their voices, whenever I can.”  (See also:  Spare a Rose.  See also also:  CGM Medicare Coverage.  See thrice-so: DPAC)

I’m hopeful it was an interesting panel discussion to listen to; I learned a lot by listening to my fellow panelists.  Secretary Roberts repeatedly voiced concerns about the different factors that play into health (socioeconomic, literacy, etc) and urged discussions about improving society’s views on proactive health efforts instead of reactive ones.  Dennis Keefe voiced hopes for true universal healthcare and how we can transition to that system most effectively.  Michael Hudson made an excellent point about throwing bias and stigma aside when communicating with one another; we aren’t just “the insurance guy,” or “the patient.”  Each panelist brought their unique flavor to the discussion, and I did my best to inform this EMHL about the crucial need for input from patient perspectives.

One of the other panelists mentioned that high deductible insurance plans force patients to have “skin in the game,” but I’ll counter that being responsible for paying doesn’t give us skin in the game.  We’ve always had skin in the game.  Now we have a voice at the table, and it’s high time we raise it for the betterment of our communities.

I’m proud to work with diabetes organizations, but I’m prouder still to work for people with diabetes.  This community, and all perspectives in it, have improved my life and my health in ways I’ll spend the next few decades gratefully and respectfully repaying.

The Emerging Diabetes Online Community.

I’m really proud of this paper, The Emerging Diabetes Online Community, written with Marisa Hilliard, Jeff Hitchcock, Tamara Oser, and Korey Hood, about the diabetes online community and the importance of peer-to-peer support between patients on the Internet.

The official abstract: “Diabetes self-management is complex and demanding, and isolation and burnout are common experiences. The Internet provides opportunities for people with diabetes to connect with one another to address these challenges. The aims of this paper are to introduce readers to the platforms on which Diabetes Online Community (DOC) participants interact, to discuss reasons for and risks associated with diabetes-related online activity, and to review research related to the potential impact of DOC participation on diabetes outcomes.”

There are a lot of friends and colleagues mentioned in this paper, like Children with Diabetes, Scott Johnson, Diabetes Mine, Texting My Pancreas, the CGM in the Cloud group, and several others.  Actually, that’s one of my favorite features of this paper, noticing how many of these resources are created and maintained by people I consider friends.  Speaks to the true connectivity of the Diabetes Online Community and how what we provide for one another is hard to quantify but easily recognized as “important.”

It continues to amaze me, seeing how much this community has changed and grown and evolved since I ventured online ten years ago.

To download the paper, you can click on this link and the PDF is free.

Flick of the Wrist.

In the interests of getting through TSA in Orlando as quickly as possible and making my way over to my gate so I could find some iced coffee and a banana, I disconnected my insulin pump and put it through the x-ray machine, caring very little if it melted in the transaction because I was melting in the transaction.

The tram to the gates was arriving just as I was finished at security, so I grabbed my pump off the tray and held it in my hand. dragging my bag to the shuttle. Just after “stand CLEAR of the closing doors,” I reached around to the top of my hip and reconnected my infusion set, sticking the pump into my pocket.

A woman boarded the tram, her infant daughter strapped to her chest. I noticed her noticing me while I reconnected my pump.

“Insulin pump?”

“Excuse me?”

“Is that an insulin pump? Sorry – my son has diabetes and I recognized the pump.”

“Oh, yes.” I searched her wrist for an orange or green CWD bracelet but didn’t see one. “Were you here for the conference?”

“What conference?”

“The diabetes conference. It’s called Friends for Life and it’s put on by an organization called Children with Diabetes. It takes place here in Orlando, over at Disney.”

She smiled. “I’ve never heard of it, and I live right here in Orlando. What’s it called?”

“Friends for Life. It’s a diabetes conference for families with diabetes. Lots of kids with type 1 attend with their parents, and lots of adults like me who go to connect with other adults who have diabetes. It’s really nice, like diabetes camp. Community helps, you know?”

She nodded, and the baby on her chest flapped her arms happily. “My son goes to camp. He loves it. But I’ve never heard of the conference before.”

I reached into my bag and fished around for a pen. Nothing. Checked my pockets for a business card. Nothing. The tram was about to stop and ditch us at the gates, leaving me just a few seconds to try and explain how a few days in Florida can change your life for the better.

“What’s the conference called again?”

I grabbed the edge of my green bracelet and pulled it off my wrist.

It's on. #ffl15

A photo posted by Kerri Sparling (@sixuntilme) on

“I know this seems weird to hand you a slightly-used conference bracelet, but the URL for the conference website is on it. Everyone who has diabetes wears one of these green bracelets. You see one of these and that person understands, you know?” I handed her the bracelet, pointing at the website address. “I hope this doesn’t seem creepy. It’s just an amazing experience, being around all of those other families, and it would be great to have you and your family check it out, if that’s your thing.”

She took the bracelet and put it in her pocket. “This is very nice of you. Thank you. I’ll check it out for sure.”

The tram doors opened and we stepped out.

“Where are you headed home to?”

“Rhode Island.”

“And you come here just for that conference?”

I thought about the week that had just passed, when I was surrounded by people who redefined family.

“All the way here. Green bracelets are pretty awesome.”

She waved, and her baby waved, too. “Thank you for passing this along. Safe travels back home. Maybe we’ll see you next year.”

Usually when I board the plane home from Friends for Life, I like to look down at my green bracelet because it reminds me of my PWD tribe.  This year, with a flick of the wrist, I was grateful it had found a new home.


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