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Posts from the ‘Diabetes Online Community’ Category

What Does the DOC Mean to You?

This video is one of the last ones I did for Animas, but it’s one of my favorites because it features some of the friendliest faces in the Diabetes Online Community.

Much love to the folks who offered to share their perspectives on the diabetes community, and thanks for being part of the family.

If you are up for chiming in: What does the DOC mean to you?

Pump Peelz Gift Card Winners!

Giveaways are fun, but the entries received on this Pump Peelz Superhero gift card giveaway were truly awesome.  From Sir Lancet-a-lot to Carbo-Man to Madame Betta, the superheroes created by insulin-infused imaginations are incredibly fun.  And now, on to the winners!

The superhero call:

To enter the giveaway, you need to leave a comment on this post that includes a fictional diabetes superhero name and that superhero’s special power.

Through a fastidious screening process that included (but is not limited to) which entries made everyone in my house giggle and which ones the cats sniffed the computer screen longest for (<– this part is not true … perhaps), the entries have been narrowed down to three winners.

THIRD PLACE:  “Agent Sticky”. Who happens to be able to scare any Dexcom sensor or infusion site into actually sticking on someone’s skin until they want it to come off, even if they go swimming. Or bump into doorways, as I’m prone to do when I cut a corner too hard. I’m picturing a cross between Agent K from MIB and Coulson from The Avengers.  — submitted by Morgan T

SECOND PLACE:  “My superhero is Queen Islets of Wonderhans, who can cross her arms and stomp her feet and create perfectly working cells that make insulin again.  Why not!?” – submitted by Lucia Maya

And … FIRST PLACE! “My super hero would be Master No-No Carb. His super power would be to remove all carbs in your favorite foods by using a super high powered vacuum to suck the carbs out all while leaving the sweet goodness behind.”  -  submitted by Andrea

Our first winner will receive a $25 gift card, the second place winner gets a $10 gift card, and third place wins a $5 gift card.  Winners, you’ll receive an email from me connecting you with Scott and Emily from Pump Peelz, and they’ll send along your gift cardCongratulations!! 

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.

New Year, New Disclosure.

Disclosures are important, so I’m making a new one today, and my disclosure policy has been updated accordingly.  There are some big changes on deck for 2016, with the first one being a change in some of the companies I’m partnering with.  Which is why I’ve decided to end my contract with Animas, because it was time for a change.

I wore a Medtronic pump for seven years before switching to Animas, and I’ve worn my Animas pump for the last six years.  Both of these pumps are solid insulin delivery devices and worked great, and Animas has been wonderful to work with and for, and I’m forever grateful for their support over the last few years.  But change is necessary at times.

Over the last two years, I’ve had some non-diabetes health hurdles (everything is fine, promise) and those issues put a different lens onto how I viewed my diabetes.  I wanted frustrations with diabetes kept at an absolute minimum.  Sometimes that meant ditching all technologies for a few weeks in order to give my body some breathing room, and to give my mind the opportunity to focus on the basics of my diabetes.  (I did MDI a few times this year, for several weeks, and it was good to revisit that method of delivery.  I learned, and relearned, a lot.)  Sometimes that meant acknowledging that the features I needed and appreciated were allowed to change.

But ultimately, it meant that I needed to let myself move on to different technologies that better suited my diabetes needs these days, and to different opportunities that fit where I’d like to lend my voice.

So here’s the disclosure:  I have signed an agreement with Tandem Diabetes Care.  My new agreement with Tandem went into effect on January 1st, and includes compensation for consulting services, including speaking on Tandem’s behalf at diabetes-related events. When speaking on Tandem’s behalf at such events, my relationship with Tandem will be disclosed to the audience.  (They won’t be involved in everything I do this year, so I’ll make sure I disclose appropriately when they are.)  With my physician’s prescription, Tandem provided me with products at no charge, including a loaner Tandem insulin pump and the cartridges and infusion sets I need to use the pump. Tandem does not compensate me for content on Six Until Me.  All of the content on Six Until Me remains my own, per usual, so my apologies that things aren’t suddenly going to become All Professional.

I’m really looking forward to working with the team at Tandem, and continuing to draw inspiration from the diabetes community as a whole.

And getting back to blogging.

And finding where the cats hid all of Birdzone’s hair ties.

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. 

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