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Posts from the ‘Diabetes Community’ Category

A Fonder Heart.

Spending a few weeks offline was nice.  Good for me.  Removed that panic from, “What can I write today?” and replaced it with, “What can I do today?”  Stepping away from my website for the bulk of December was in efforts to shake the dust off my advocacy and outreach efforts by allowing a little room to not advocate or reach out.

Funny how that works, that absence thing doing weird things to the fondless levels of my heart.

When last Wednesday rolled around, I was excited to join the #dsma chat.  Emails are being answered with renewed excitement because I had a couple weeks to disconnect from things, making me appreciate the * ding * of email a little more.  Diabetes doesn’t feel like the narrator anymore; I’ve taken that role back for myself.

And doing non-diabetes things was good.  Traveling a bit with family and friends distracted from the constant hum of pancreatic chaos.  Christmas and New Year’s included hosting a lot of people in and out of our home, filling the space with voices and laughter and pleasant mess.  We made busted-up looking gingerbread cookies that ended up looking more like Super Mario Sunshine stars, but there’s joy found in Mario so yes.

I did a lot of laundry.  Yes, super boring, but superior therapy for me.  Things go into the machine horrible and come tumbling out of the dryer smelling fantastic and all fluffy-clean.  You can have your resolutions for 2016; I just want a pile of clean laundry to snuggle with.

I found one of those big, tupperware packing containers downstairs and it was filled with unused yarn.  The squeal I let out upon discovering this treasure was embarrassing, but I’d do it again because I frigging love yarn.  Currently dreaming up projects, while Birdy steals snippets from skeins to make wigs for her dinosaurs.

I watched my kid go bananas in a New Hampshire snowfall.  “MOM!!” and then EXCITEMENT.  After a winter where shorts have been more necessary than snowsuits so far, it was a beautiful thing, watching her scoop up handfuls of snow and lob them in her five year old rendition of a snowball.  The snow was beautiful.  (Remind me in February that I said that.)

… does this stuff sound boring?  MAYBE IT WAS but at the same time, boring felt nice.  Mellowing out is not my strong point, and neither is sitting still, but a concerted effort to not mentally and physically fidget myself into oblivion was such a stark change of pace that I liked it.

But now the holidays are over and it’s time to ramp things up again, keeping the pleasant mellowing on-call when necessary.  School is back in session and work is edging towards full swing here at home.

But the break was good.  Necessary.  And now my brain feels ready to do its job.

… can’t say the same for my pancreas, but that little bastard is a work in progress.

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??

*   *   *

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.

* * *

“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.

Which.

is

why

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.

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