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Posts from the ‘Diabetes Online 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. 

Opportunities to Participate in Research Studies.

The best way to change diabetes is to participate in diabetes.  Research is important because it shapes and informs how the medical community takes care of people touched by diabetes.  So when there is an opportunity to participate in a research study – especially one that doesn’t require any travel or a huge time commitment – the “Yes, I’ll help!” is hopefully easy to offer.

I wanted to share two diabetes research studies that are currently recruiting participants.  There are gift cards as payment, so there’s extra incentive.  Even though I know helping the diabetes community is incentive enough [insert group hug emoticon here].

And please share this information with others who might be interested.  Thanks!!

Opportunity No. 1

This explanation is short and sweet, and comes from my friend Sean Oser (and his research team).  They are look to find out more about the challenges and success you might have as a person with diabetes.  This study is for people living with diabetes and will take about 30 minutes to complete.  (You’ll be given a $20 Amazon gift card for participating.)  Take a look at the information below, and please take the survey to see if you are eligible to participate.

The survey can be found here:

Opportunity No. 2

There’s a lot of talk in the diabetes community about artificial pancreases and bionic pancreases, but usually about the device functionality.  There haven’t been a lot of conversations about the potential emotional influence of these devices, and one research study is trying to change that.  Jill Weissberg-Benchell, psychologist and CDE out of Chicago, is hoping to have a focus group dedicated to that topic … which I think is very important because tech is terrific but you have to actually use it, and what it emotional factors keep you from using it?

I asked Jill to provide a little background on the study and what she’s hoping to accomplish, so that I could share that information with you guys.  Here’s what she said:

“Whether you have had experience with insulin pumps or continuous glucose monitors (CGMs) or not, whether you have participated in artificial pancreas trials or not, we would love to hear how you and your loved ones feel about the potential impact that automated insulin delivery systems (also called artificial pancreas or closed loop systems) could have on your daily lives.

The INSPIRE study team hopes to identify both the potential benefits and  the possible difficulties or barriers people may face in using such technology so that we can develop  ways to support people when these systems are available to use.  Your feedback will also be shared with teams around the world who are developing these systems so that they can integrate the feedback into their products before they are commercialized.

These focus groups, to be held at your convenience, using an internet-based video conferencing system, will involve one group for PWD and a separate group for their loved ones. In both groups, members of the INSPIRE team will help lead the discussions. These two hour meetings will give you the opportunity to share your thoughts about automated insulin systems in a casual environment and in a confidential manner.  We will mail each family a $50 Target gift card for their participation.

If you would like to learn more about the focus groups, please e-mail Jill and her team at: or call at (312) 227-0330.”

Sticky JMedical Giveaway Winner.

Through a very official and terribly complicated process of asking a friend to pick a number between 1 and 169, we have a winner!  Congratulations to Jennifer, who is a sentimental fan of Kermit.

(Yeah, I called you sentimental.  Mostly because you told me to.  Also, Sentimental Jennifer, I sent you an email this morning, so please check your inbox!)

A big thanks to everyone else who entered.  If you are interested in checking out the bracelet online at Sticky JMedical, click this link.  As far as Muppet responses, the diversity was incredible, but my favorite was the person who mentioned Bean Bunny.  (Also, did you know there is a Muppet wiki?  Say goodbye to the rest of your morning.)

Happy Friday!  And thanks for playing.

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!

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.

Guest Post: Can Neither Confirm Nor Deny.

There’s power to the “me, too!” moments for sure, but there’s vulnerability involved in raising your hand first to say, “Me.”  Today, I have a guest post from a writer who wished to stay anonymous but who is looking for others who may have experienced something similar to what they went through.  If you’ve ever passed out or had a seizure, or have experienced a pocket of time where you know something diabetes-related happened but you can’t quite explain it, please leave a comment for this writer.  They need community now, more than ever.

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The day was just like any other. Except it was a Friday before vacation where the afternoon is extra stressful to complete everything before heading out and not looking back for one week. That morning the Dexcom sensor was incredibly itchy, so I removed it.

When the work day was done I left with a bunch of errands to run before I could really enjoy myself. At the first stop I couldn’t find my wallet in my bag even though I knew it was in there. I was disoriented and didn’t know why. I kept apologizing.  I was so embarrassed about my lack of functionality that I returned to my car with nothing completed for my errand.

An hour later I “woke up” confused as to where my phone could possibly be. I found it in the trunk of my car. There is no memory of what happened after I sat down in my car (parked). However, as soon as I woke up I knew I had passed out. Presumably from a low blood sugar based on my actions during my errand. Based on the location of my phone, I believe it is possible I seized as well. I have no way to confirm or deny this assumption.

I do not know if this will ever happen again. I do not know how I came-to on my own. I do not know why I am lucky enough to have survived this. I do know that I reached out to my support system. I reached out to the people who would take it as is and not freak out. I was doing enough of that on my own. I do know that it is a hard event to move on from. I also know I’m not willing to let the whole world know yet.

But! Has anyone had this happen to them? Or something similar? How did you continue to live your whole life with diabetes without this always being in the back of your mind? Or front and center? Did you over treat? Or start treating almost lows, which weren’t lows but actually acceptable blood sugars? How do you keep your focus on your sugars and not raise your perception of what’s an “acceptable blood sugar”?

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I’m glad you’re okay, Anonymous.


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