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Posts from the ‘Diabetes Advocacy’ Category

Guest Post: E-Patient Dave Takes on T2D.

Dave deBronkart and I met several years ago through patient advocacy and online connection points, and I’ve followed his health story as he has simultaneously followed mine.  Dave comes from the perspective of a cancer survivor who almost died and has turned his “free replay in life” into a crusade to open healthcare’s minds to the idea of partnering with patients.  So when he messaged me to tell me that his lab results for A1C came back a little elevated, I watched our health stories smash up for the first time.  Nothing like the experience of trying to change an A1C to bring people together.

Today, Dave is guest posting about his experiences toeing line of type 2 diabetes, and his take on patient guidance in the diabetes space.  (And for more from Dave, you can follow his very lively Twitter account or blogOr just Google him and see all the fun that pops up.)

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Dealing with an “increased risk” of T2D
by ePatient Dave

A1c Nov 2014

A year ago this week I got some blood work done and it came back with this great big numeric fart in my face: the number 5.8, followed by “Increased risk for diabetes.”

WHAT?? I. Am. Not. A. Diabetes. Person. Those people are Kerri, or Amy, or Dana, or Manny, or Scott, or Eric, or Dominick. It’s all those people I like and respect and enjoy knowing, but it’s not me. I mean, they’re not me. I’m not them – they’re a special class. What?  I mean, I’m a kidney cancer guy, not an insulin problem guy. I don’t even know what that is, really. And I certainly don’t know how to do it.

In hindsight it feels like it was easier when I was diagnosed in 2007 as almost dead with kidney cancer. And that episode was over in less than a year. Me with a permanent thing? (I know I’m sounding like an uninformed idiot here. That’s what it’s like when you’re in the denial phase.)

What to do? Back then I got it in gear, doing what I could despite bad odds, and I was one of the lucky ones, aided by a great online patient community, which my oncologist said (in the BMJ!) he thinks helped save my life.

So, what to do this time? My PCP told me about a diabetes prevention program run by the YMCA that reduces by 58% the odds of ever developing T2D, if you lose x% of your weight and get 150 minutes of activity every week. I’d have to pay for it – a few hundred bucks – but it seems worth it.

Withings weight curve 2015-08-30And boy has it been effective for me – check the graph from our wifi bathroom scale. (My results were not typical!) I lost 30 pounds in four months (January to May), dropped a few more to 197 in August… I’m back up over 200 now but I’m also a gotta be active guy … first time in my life I’ve felt I have to get outside and move around.

It’s really a lifestyle program – they teach what I’d call food awareness, but it’s really not a diet. They have you count fat grams, with a book or an app or whatever, but that’s no diet. Then later they get into some more detail. But it’s not complicated. And they have you get active – no particular exercise regimen, no in-your-face smiling Sweat Coach.

You know what, though? Effing stupid insurance won’t pay for it.  If the insurance industry wanted to reduce medical spending they’d obviously spend a few hundred on prevention, so I conclude that they’re either stupid or corrupt. (I know I don’t usually talk this way but I honestly can’t figure out any either explanation. Can you?)

Plus, the effing stupid program isn’t available to people who aren’t yet officially pre-diabetes! It’s a good program, and my wife wants to do it too, but they won’t let her in because she’s not almost in trouble! What the !@#@! are these people thinking, not even letting someone buy their way into this course?

And you know what else?  When I measured my A1c again in September, it was up … it was worse. 5.9.

So now I’m in the middle of trying to educate myself about that.  Do you have any idea how hard it is to find out what to do about that??

Well, I imagine you do know. I’m here to say, for sure, that although T2D is different from T1D, it’s clear to me that the system (whatever that is) sure doesn’t make it easy for us to do the right thing.

I do know this: digital tools made (and continue to make) my own work on this a lot more practical … I mean, without important information and without feedback tools, how is anyone supposed to do a good job? As I always say in my speeches – “We perform better when we’re informed better.”

Here’s to a radical acceleration of the tools we need – driven by what patients say they – we – need!

And I’m not even T2D yet – I’m just frickin annoyed at how I can’t even get clear instructions on what I should be doing about it! I believe health goals should be patient-driven, and the C word (“compliance”) should be thought of as achievement. So why can’t I get good guidance on that??

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Health goals should be patient goals, and there needs to be clear guidance on how to achieve them.  Thanks for lending your voice here today, Dave. 

You Don’t Look Like You Should Have Diabetes.

“And this, too, please,” I said, sliding the opened and half-consumed bag of gummy candies across the counter, my hands shaking.

This low was bad.  The symptoms were very visible, with unsteady hands and knees that were buckling out and sweat beading up on my forehead despite the 40 degree weather outside.  I knew I was the color of a cotton ball, with the mental capacity of one as well.

My Dexcom had gone off about ten minutes earlier and I picked around in my purse for the jar of glucose tabs that I soon realized were tucked neatly into the cup holder of my car.  Out in the parking lot.  (Useful.)

Necessity forced my hand to grab the way overpriced bag of candies off the shelf and consume a handful.  “Most expensive low ever,” I muttered, aware that coming up from this 45 mg/dL was going to cost me a pretty penny.  I needed to get out of the store and reassemble my wits, but lows don’t excuse shoplifting, so I made my way to the cashier to check out.

“Are you okay?” the cashier asked, probably because I looked half-removed from the planet.

“Yes, thanks.”

“These candies are open.  Do you want a different bag?  These have been half-eaten,” she said.

“No, it’s okay.  I ate them.”  I smiled in a way that I hoped looked reassuring but probably looked weirdly menacing.  “Low blood sugar.”



She smirked.  “And here you are, buying candy.  Isn’t this part of the problem?  You don’t look like you should have diabetes.  Maybe you should stop eating candy.”

I would have rather been eating a banana, to be honest.  Treating with fruit is my preferred way to upend a low.  Or I would have rather had some measured glucose tabs so I knew how much I was consuming and could avoid the post-low rebound.  Fuck, you know what?  I’d rather not have been low at all, because being low in a public place is embarrassing and makes me feel vulnerable.

Let’s just round it out and say that I’d much prefer not to have diabetes in the first place.

“The candy is to bring my blood sugar up.  It’s to keep me from passing out here at your counter.”  It was hard to make the right words come out, but anger jumped ahead of hypoglycemia.  My voice was sharp, like the plummet on my Dexcom graph. “What does someone who should have diabetes look like, anyway?

She didn’t look at me.   And I was glad she didn’t.  I popped a piece of the candy into my mouth, my attempt at a PWD version of a mic drop.  I don’t look like I should have diabetes?  Maybe that’s the point.  Maybe she needs an education on what diabetes does look like, instead of viewing my disease as a punchline, one that society judges unabashedly.

All of a sudden, I can’t wait for November.

GIVEAWAY: My Favorite Medical Alert Bracelet.

The “long and overdue” part of this post cannot be over-stated.  I have had the best medical alert bracelet from Sticky JMedical for a very long time now and am just writing about it this morning.

But it’s lovely and discreet.  Because of that, I wear this bracelet every, single day, which helps protect me in the off-chance that something keeps me from speaking on my own behalf.

This is the bracelet that I have:

Medical alert bracelet #diabetes

A photo posted by Kerri Sparling (@sixuntilme) on

And it is excellent in its simplicity. This bracelet has been worn while running over bridges, while carving pumpkins (it was easy enough to remove pumpkin guts from), on the red carpet, and around the house, no problem. It goes with everything. It doesn’t scream MEDICAL ALERT BRACELET, but if there’s an emergency, this jewelery is obvious in its intention.

It’s taken me several years to find an every day bracelet, but this one is it. So much so that I plan to purchase one for whoever wins today’s giveaway. If you’d like to enter, just leave a comment on this blog post with your preferred Muppet (any Muppet will do) and I’ll randomly select one winner on Friday morning. You can enter starting this morning through Thursday at midnight (and if there is a medical alert bracelet in the same price range that you’d prefer, I’m all ears).

Thanks to Sticky JMedical for creating something so timeless that writing about it a bit late is still hopefully acceptable.

[DISCLOSURE: Sticky JMedical sent me the bracelet several months ago for free but did not ask me to write about it, or host a giveaway. I decided to do that on my own because their product is pretty frigging awesome. All opinions are mine, as is my tardiness.]

These Boots Were Made For Talking.

At the airport two weeks ago, I was coming home from Washington and my flight to Rhode Island was delayed.  The wait in the cramped US Airways terminal was long and oddly warm for October, giving people a certain irritated twitch.  I was still dressed from my meeting, with a dress and tights and boots and not enough real estate in the dress itself to hide my insulin pump so eff the bullshit, I clipped my pump to the top of my boots.  (Like this.)  It felt comfortable and somewhat discreet.  A nice change of pace.

The other people on my flight and I kept close to the gate, watching the delay extend and hearing sighs from fellow travelers.  There was a thick tension to the air, one that even the smell from the Dunkin Donuts kiosk couldn’t cut through.

And then suddenly a fight broke out between these two random ladies, one of whom was heavily pregnant.  There was excitement and a scuffle and lots of “Oh no you did NOT” and the response of “But I DID.”  Security showed up around the same time as our plane, which added to the chaos.

“This was unexpected,” the man next to me said, shaking his head.

“Almost makes the plane delay tolerable,” I agreed.

He looked at me and then his eyes traveled to the top of my boot.

“Is that an insulin pump?” he asked, with a look on his face that indicated he knew exactly what it was.

And as I said, “Yes,” I realized that I meet people touched by diabetes everywhere.  In coffee shops, at Disney World, on planes, going through TSA, and now, watching a pregnant lady and another lady try to punch one another in the face while waiting for my delayed plane.  People with diabetes are everywhere, and I am lucky to find a lot of them.

… that, and it probably helps catalyze conversation, keeping my medical device clipped to my shoe.

“My daughter has type 1 diabetes,” he said.  “She was diagnosed when she was nine.  She’s 18 now and at college.  Volleyball player,” he added proudly.

“No kidding?  I’ve had it for 29 years, diagnosed when I was seven.”

“Yeah?  Wow, 29 years.”  He looked impressed, as if I had mentioned an ability to build functional spaceships out of pasta noodles instead of an inability to produce my own insulin.  “And you’re okay?”

I shrugged, thinking about the difficult last few months.  But I was okay.  I’d be okay.

“I’m not picking fights with pregnant people at the airport, so I’d say I’m pretty okay.”

He looked at me with those hourglass eyes that parents of children with diabetes often have, visibly fast-forwarding his own daughter’s life another two decades, wondering what her life would be like when she had lived with diabetes for almost thirty years.

“That’s a plus,” he said.

And all at once, I wanted to give him a run-down of my life, telling him everything that I had still done and would still do, despite or because of diabetes.  I wanted to show him pictures of my daughter.  I wanted tell him about how Chris takes care of me without smothering me.  I wanted to tell him how my mom and I are immeasurably close through diabetes.  I wanted to tell him it would be okay and his kid would be okay.

And then I wanted him to tell me I would be okay, and that the people I love who have diabetes would also be okay.

The gate attendants called for people to start boarding our flight.  We shook hands and did the “Nice to meet you; good luck with everything” send off.

But there was a moment that hung between us, one of understanding and connection that only people who really understand this life can share.  He knew my life and I knew his, to a certain extent, yet we’d walk away from the conversation without sharing our names.  Which, strangeness aside, was really comforting.

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!




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