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Posts from the ‘Diabetes Community’ 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. 

Spare a Minute for Spare a Rose?

The Spare a Rose campaign is on tap again for February 2016, and time is marching on at a very quick clip.

Now is the perfect time to start thinking about your involvement in the 2016 campaign, and how your workplace can get involved.  Have you seen the Spare a Rose In My Office site?  You’ll find some tips on making Spare a Rose a company-wide effort.  (Hey Diabetes Companies … I’m looking at you.)

Media campaigns are already thinking about their February outreach efforts, so now is also a great time to connect with your local diabetes organization or media outlet, asking them to support people with diabetes in developing countries.

We’re in this together.  And we can use Diabetes Month as our catalyst for coming together to support our own.

To reiterate, from last year’s campaign,

“From February 1 – 14, the diabetes online community is hosting our annual Spare A Rose campaign.  You remember that one, right?  The one where you send eleven roses instead of twelve on Valentine’s Day, taking the value of that saved rose (averaged out to $5) and donating that to the International Diabetes Federation’s Life for a Child program, which provides life-saving insulin and resources for children with diabetes in developing countries.

We need you.

Yes, you.

You’re part of this, you know.  If you’re reading these words, or any words written by a person touched by diabetes, you are touched by diabetes.  Maybe you’re the parent of a child with diabetes.  Maybe you’re an app developer looking to connect with the diabetes community.  Maybe you run a magazine that hosts health-related articles.  Maybe you’re a PR company that hopes to influence the diabetes community.  Maybe you’re a representative from a diabetes company, or a teacher who has a student with diabetes in their class, or a researcher who studies this disease.

We need you to help amplify the Spare a Rose message.  You can donate to the charity, share the Spare A Rose link with your friends and colleagues, and truly take this initiative, this passion – and our global community -  to a powerful new level.

If you’ve emailed a diabetes advocate, asking them to share your latest press release or to engage in your survey, please spare a rose.

If you work in the diabetes industry and you leave diabetes in your office when you go home at night, remember that people with diabetes don’t ever leave diabetes behind.  And that many people with diabetes struggle to gain access to the drug that keeps them alive.  Considering bringing this campaign to your office.  Please spare a rose.

If you are touched by diabetes in any way – the partner of, the friend of, the coworker of, the child of, the parent of, the neighbor of a person with diabetes – please spare a rose.

If you are part of the greater patient community, I’m asking you to walk with the diabetes community for two weeks and help us make a difference in the life of a child.  With your raised voices, we make a greater difference.  Please spare a rose.

This is where we shine, you guys; where we take care of our own.  Where we can take our collective power, not as people with picky pancreases but instead as people with full and grateful hearts.  Show your love for this community on Valentine’s Day by sending one less rose to a loved one and instead providing life for a child.

Flowers die.  Children shouldn’t.

Please spare a rose.

And please spread the word!”

Looking Back: Of Cocktails and Community.

Today, after a lovely morning at the dentist (once again fixing this issue), I’m recovering from a half-droopy novocained face and, as a result, am looking back at a post from 2013 about search engine optimization, diabetes, and cocktails … sort of.

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“So what you should do is see what people are searching for and then carefully tailor your posts to draw in those searches. Pick the search engine terms that there isn’t a high competition for, giving you an advantage in Google’s search algorithm.”

The example he used was pretty simple: “10 Best Cocktails for People with Diabetes”

In a discussion during the European Bloggers Summit in Barcelona (running alongside EASD), a search engine optimization expert gave a presentation about seeding blog posts with keywords in order to cast a greater net for readership. The SEO strategist was helpful, and had wonderful advice for people who were churning out content to get it read, but my body had a tangible reaction to this kind of advice. I felt myself prickling with frustration because is this really what people are writing for? Page views?

No freaking way. Not in this community.

So the top ten best cocktails for people with diabetes? Fucking sure. Let’s do this, social media-style:

  1. The #DSMA: Take 140 characters, a hashtag, and equal parts honesty and humor and mix them thoroughly in Twitter. Tastes best on Wednesday nights at 9 pm EST.
  2. The Blogosphere: Start with a URL or a Feedreader and slap it into the search bar on your mobile device, tablet, or computer, or Google “diabetes blogs” for a list of ingredients. Mix reading these blogs throughout your day for a boost in diabetes empowerment and community.
  3. The Flaming YouTube: Search through YouTube for diabetes, or “diabetes math,” or “breaking up with diabetes,” or “changing the song on my Animas Ping” and you’ll find a slew of video combinations to add to your playlist. (Title the playlist “Cocktails for Diabetics” and you’ll probably get a lot of search returns, but you’ll also find people who want to be found.)
  4. The Instagrammed: Take your phone, photograph any ol’ diabetes bit or piece in your house, and mix with Instagram to create a frothy, fun mix of Dexcom graphs, race bibs, brave new infusion set sites, Halloween-candy-casually-pretending-to-be-hypo-treatment, and friends who understand.
  5. Facebook Your Face: Take your Facebook account and stir gently with groups, hashtags, and posts about diabetes. It may take a while for this mixture to fully set, but once it does, you’ll have a shot of community you can take in one sitting, or something you can sip on and scroll through for hours.
  6. The Friends for Life: Take one part people with diabetes, one part caregivers, one part educators, one part inspirational athletes, one part Disney World, one part green bracelets, and a billion parts love and throw into a salad shooter and spray that stuff everywhere because in-person diabetes meet-ups and conferences will break your heart and mend it within the course of a week.
  7. The Group Text: No specific ingredients, but a drink best shared with many. And at 3 am.
  8. The Call Me: Best served when low, because a phone call to another PWD who understands is the best way to keep from over-treating.
  9. The Honest-Tea: Equal parts empathy and honesty, this cocktail is a must for people with diabetes who are looking for confirmation that they aren’t alone. It’s not about enabling, but empowering. (Goes really well with a side of Communi-Tea.)
  10. The Hug: Social media is great, but nothing is better than a hug between two people whose much-loved pancreases have taken an extended leave of absence. There is no set ‘best time’ for this cocktail – serve immediately and enjoy.

The one in the middle looks like pee, to me.

People in the diabetes community don’t communicate with one another for page views or Google search prowess. Of course, not everyone’s intentions are the same across the board, and there are people who immerse themselves in a community looking for things that aren’t as altruistic, but the majority of interaction in the DOC, from what I can see, is between people who need each other. That’s why so many of us started doing this, and it’s why so many of us continue.

Because when Google redoes its algorithm and there’s a new system for search engine optimization, when there’s an upheaval in what’s considered the “it” platform for social media, the song remains the same for the DOC. Diabetes, for many, isn’t just in your body but also resides full-time in your head, and managing emotions and support is as essential as insulin (and with a significantly lower copay). It’s not about where the discussions are taking place; it’s about the discussions that are taking place. So “drink” up!

Photo Challenge: #DOCtober.

Taking pictures is something I like to do very much.  I’m not terribly talented when it comes to doing it and my equipment is pretty basic, but I enjoy framing something up and preserving that moment.  I used to take a lot of pictures, but I’ve tapered off in the last few years, and I miss it.




I am forcing myself to get back behind the lens with a daily photo challenge for October.  The twist – BET YOU DIDN’T SEE THIS COMING – is to see if I can find something diabetes-related to photograph for the month.  If I can, awesome.  If I can’t, that inability shows how diabetes can’t and shouldn’t always be front-and-center.

Want to join me?  I’ll be posting on the blog and Instagram under the hashtag #DOCtober.

For #DOCtober 1/31, I’m already cheating a little by posting a photo from last week.  The sign reads, “Unusual Pumpkins + Gourds.”  And it reminded me of you guys, the diabetes community.  The patient community.  The community of people who are touched by some kind of health condition but aren’t owned by it and are beautiful because of and despite it.

Well sheeeeeeeeet, if we aren’t all a pile of beautifully unusual pumpkins and gourds.

Guest Post and Giveaway: Overcoming Diabetes Overwhelmus.

Today, I am honored to have Susan Weiner and Paula Ford-Martin contributing a guest post to SUM, writing about diabetes burnout and their new book, Diabetes 365: Tips for Living Well.  I’m pretty biased, as I used to work for Paula at dLife (and with Susan), but their book and their message are a tremendous resource for newly diagnosed and veteran PWD alike. 

I’m also excited to host an opportunity for three folks to win a copy of the book.  To enter to win, please leave a comment with your best tip on dealing with “diabetes overwhelmus.”  (Be sure to include your email!)  The giveaway will be open until Thursday night at midnight EST, and winners will be announced on Friday morning. 

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Overcoming Diabetes Overwhelmus
Guest bloggers Susan Weiner and Paula Ford-Martin

The late, great Dr. Richard Rubin had a great knack for turning a quality phrase. “Diabetes overwhelmus” (a.k.a. diabetes burnout) was one of our favorites. Layman’s definition? When the continuous demands of diabetes, and the non-stop flow of diabetes-related information, simply become too much to deal with and you’re ready to throw up your hands and have a mad as hell moment.

The side effects of diabetes overwhelmus are a tendency to become less active in one’s own self-care. So diabetes management starts to slip, stress goes up (along with stress hormones and blood sugar), and then you’re caught in a vicious cycle of bad feelings – both physical and emotional. It’s a crappy place to be.

Now we want to take a moment to pause for a disclaimer here. We both work in diabetes, we support friends and family with diabetes, and we know a lot about the academics of the disease. But neither of us can say we have the intimate knowledge of knowing what it’s like to live with diabetes 24/7.

But stress, the broader idea of “life overwhelmus,” and the negative impact both have on the human body? We’ve got loads of personal experience there. The busier life gets, the harder you need to work to maintain your physical and emotional well-being. Yet most of us let life’s obligations push those things down in the priority list. And even though we’ve both worked in the health education field for many years, we admit we have let stress get the better of our health and well-being more than once in our lives. In fact, we wish there was a frequent flyer program for hospital visits and doctor’s appointments – we’d be Platinum Club Members.

A survey on stress in America found that almost half of the population has experienced a major stress in the prior twelve months, and health problems were cited as the most common source of stress. Thirty-six percent of people living with a chronic illness reported high stress levels in the prior month, with a whopping 60 percent of those in “poor health” reporting those same high stress levels. That’s probably not a surprise to anyone reading this blog post. Being “sick” makes you stressed, and stress makes you sick.

Susan has a patient, Tess (not her real name). Tess has type 2 diabetes, works full-time, takes care of a family, parents teenage children, and is the primary caregiver for her live-in mom, who was recently diagnosed with Alzheimer’s disease. Over time, she found herself completely overwhelmed and bombarded on all fronts. Eventually she stopped taking care of herself. She ate food on the run, sometimes skipped her meals completely, didn’t refill her medications, and didn’t keep doctor appointments.

Tess felt terrible and had high blood sugars. But she went to visit Susan because she was ready to take one small step to get out of her diabetes rut. Susan listened to what Tess’s biggest stressors were and her desire to address them, and they started with one simple goal focused on an issue plaguing Tess – taking time each night to pack up snacks and plan the next day’s meals. Over time, they added more small goals based on Tess’s real life problems, and now she feels in control of her life and health again. She isn’t eating out of frustration or anxiety, and is starting to gain better control over her blood sugar.

It was this small step approach that inspired our latest project, Diabetes 365: Tips for Living Well (Demos Health, 2015). We wanted to help people like Tess come at diabetes from a less intense, more manageable angle. Our intent was not to offer a soup to nuts guide on treating your diabetes; instead each day of the year offers a new start and a focused tip, idea, or action you can take to improve your health and happiness. In other words, it’s not the OED of diabetes, it’s daily Cliff Notes. As our friend Jim Turner says, “Diabetes is complicated and overwhelming enough. I like simple, straightforward suggestions.”

“Bite sized” diabetes goals may be your way out of diabetes overwhelmus. Or, you may find relief in other ways – diabetes support groups, meditation, or reading a daily dose of inspiration here at SUM. But at the root of it all is not letting life get in the way of living, and finding a way to co-exist with all of those personal, professional, and diabetes challenges. In the words of our gracious host Kerri: “I need to remember that I can do this. I can conquer this. I can design this and devour this and delight in this.”

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Susan Weiner is owner of Susan Weiner Nutrition, PLLC, in New York. She is an award-winning author, registered dietitian-nutritionist, and certified diabetes educator. Susan is the 2015 AADE Diabetes Educator of the Year, the 2015 Diabetes Health Monitor LifeChanger award winner, and the 2014 Alumna of the Year for SUNY Oneonta. She is also the 2015–2016 editor for On the Cutting Edge, a peer-reviewed journal for the Diabetes Care and Education practice group of the Academy of Nutrition and Dietetics. Susan advises several nonprofit groups devoted to diabetes advocacy; she is on the advisory board of Diabetes Sisters, and is an educational advisor for Marjorie’s Fund. She is also the diabetes medical advisor for and is on the medical advisory board for dLife.

Paula Ford-Martin is an award winning health writer, editor, and content producer. She is the author of more than a dozen consumer health and parenting books, and currently works as a freelance content strategist and consultant. Paula was part of the core team that created and launched dLife, a groundbreaking multimedia diabetes consumer resource. She served as the Chief Content Officer of dLife for eight years, and her work on CNBC’s dLifeTV—the first and longest running primetime diabetes television show—garnered her 26 Telly Awards. You can learn more about Paula and her work at


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.”


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.


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