Skip to content

Posts from the ‘Real Life Diabetes’ 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.)

*   *   *

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. 

Sleep Number.

I love sleep.

But I did not love sleep while Chris was traveling for work these last few weeks.  Mostly because I did not sleep.

From the middle of September to last week, my husband was away for work. He came home three times for 24 hours apiece, which meant that we missed him terribly. And it also meant that Birdzone and I held down the fort for two months on our own, which, for the most part, went very well. Now that she’s five and a half years old, Birdy is excellent company and we had fun hanging out with friends and playing games. (For the record, she can kick my ass at Uno Attack. And Crazy Mates. If you haven’t played Crazy Mates, look into it. Buccaneer Bob is quite the fella.)

Doing the school routine and maintaining my work schedule was one thing, but getting enough sleep was the most difficult, and somewhat unachievable, goal. The compounded effects of not getting enough sleep took their toll over the last two months.

The first week that Chris was gone, I had a low blood sugar during dinner that was pretty intense. My best friend and another friend were over for dinner, with their kids, so there were people in the house.  I wasn’t afraid that my low was going to leave my daughter unattended.  But this low was long and drawn-out, making my mouth and cheeks numb and leaving my brain unable to formulate anything even close to a coherent thought.  I remember sitting at the dining room table, my Dexcom receiver hollering, and I didn’t respond for a few seconds.  I’d already had a juice box and some glucose tabs and my dinner, for fuck’s sake, but the food wasn’t hitting as fast or as hard as the hypo, so I was floating around on adrenaline and scraps of glucose.

It went on for about 45 minutes, and afterwards, the low hangover was epic.

I didn’t realize this low had scared me so much until a few days later, when I realized that sleep was not happening.  I wasn’t able to fall asleep at night and I woke up several times throughout the night because I was paranoid about experiencing that hypo intensity again.  I decided to share my Dexcom information, usually shared only with my husband and a trusted friend, with my best friend for the duration of my husband’s trip, because she was familiar with what the numbers mean, she knew how to respond in an emergency, and she lives five minutes away (and has a house key), so she could bust in if she needed to.

But even with the safety net of data-watchful eyes and technology that promised to buzz me awake if I fell out of range, shaking that hypo fear was difficult.  It stuck with me for the duration of Chris’s trip, alleviated only when I was either away briefly for work myself or when my daughter was sleeping at my mom’s house.  It wasn’t the actual low that scared me, but the idea that my child could find me low that kept me awake at night.

I wish this wasn’t the case.  I would love to end this blog post with a clever line with advice on how to manage these situations and the best ways to avoid fear of hypoglycemia, but the reality is that I slept through the night again once Chris was home.  And only then.

“It’s Diabetes Month … have you been advocating?” someone asked me in an email this morning.  And I realized I’ve been avoiding it a little, because diabetes has spooked me a little in the last few weeks.  I didn’t want to write about being nervous to go to sleep at night.  That didn’t feel like the “right” kind of advocacy (though there isn’t a “right” kind).

But then I realized that it was the truth.  And as much as I have accomplished despite diabetes, this disease influences my daily life in a way that far exceeds the seconds I spend checking my blood sugar or dosing my insulin.  I had trouble getting any sleep because I was scared.  Plain and simple.

The clever last line of this blog post?  I’m fucking thrilled, for a dozen reasons, that my husband is home.

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!”

How Often?

“How often do you think about diabetes on an average day?”

“Not sure,” I said, checking my blood glucose twice so I could calibrate my continuous glucose monitor, mentally calculating the lunch insulin bolus I needed to take cover my food without making me low for my run later this afternoon. Looking at the five strips left in the bottle, I realized I needed to refill my kit. And to also reorder supplies.

“Probably a lot.”

Bionic Pancreas Update and Call to Action.

A few weeks ago, I met with Ed Damiano and we spent an afternoon talking about recent developments in the bionic pancreas program and what’s up next.

“Here’s our new device,” he said, placing the iLet on his desk, inadvertently putting it right next to his cell phone, which didn’t look much bigger/thicker by comparison.  (I asked for a quarter for comparison, because otherwise this thing could look as small as a whisper, or as big as a toaster, depending on how you feel about devices that day.)

“It’s pretty.  In that device sort of way.  So this is the single device, right?  No more two pumps, one CGM receiver, etc?”

“Yes.  We have two different cartridges in this single device – one for insulin, one for glucagon – that will absolutely not fit in the wrong way.  You can’t make a mistake; there’s no cross-channeling.  The cartridges are already filled, so they aren’t dealing with air bubbles.  There’s no LCD in this device, as that contributes to the bulk, and the e-ink screen [similar to that of an Amazon Kindle] has good contrast and good resolution.  It also has capacitive touch.”

I’ve seen the older device in action at Clara Barton Camp last summer.  It was amazing to hear what little kids thought about wearing three different devices.  But one device should be easier to tolerate, especially when your blood glucose is in range as a result.  So what’s the next step?  How does this thing go from on your desk to on my hip?”

“The iLet exists because of donations from people who believe in this project.  We want to build the consumable parts of this within the next nine months – that’s the infusion sets, tubing, and caps.  We’re on track to do that if we can get the money raised throughout the end of this year.  1.5 million is our 2015 goal.  The next big goal is to test in clinical trials by the last quarter 2016.”

“Tell me more about the clinical trials?”

“Trials will take place in four different sites, out-patient study that’s several weeks long.  It’s a bridging study that goes from the iPhone-based system to the iLet – helps pave the path final pivotal trial.  The pivotal trial takes us straight to FDA submission.  Each study substantiates and builds confidence between investigators and agencies.”

As a person with diabetes, it’s weird to be reminded of many hands are involved in allowing access to technology development and release into the wild.  And how much money is required.

“Can you show me how far we’ve come?  I saw the new iLet device at Friends for Life this summer, but some perspective would be awesome.  What did the first iteration look like?”

Ed’s team kindly dug back into the archives for this photo, which shows the old laptop-based system attached to a study participant.  (And for another old-school take, you can read Abby’s experience with the clinical trials here and here.)

From a team and a laptop and tubes and wires to a single device.  This is the kind of progress that excites me, because it’s happening NOW and the results have already changed lives.  After close to thirty years with diabetes, I’ve seen progress that has made insulin delivery easier and glucose monitoring easier, but the bionic pancreas is a whole new and astounding shift towards life with diabetes.

“And once it’s all said and done, there will be a device similar in look and feel to what I’m using now, only it will be a closed loop.  Which means the pump and the sensor talk to one another, and work with one another independent of my interaction.  Which means I don’t have to think about diabetes nearly as much.  Maybe not much at all,” I said to Chris, all in one breath, when I got home.  “I’m excited.  This is exciting.  I haven’t been this excited in a long, long time about diabetes.”

I believe that the bionic pancreas technology will make my diabetes less of an intrusion, ripping the dangling preposition “with diabetes” off of my life.

To learn more about the bionic pancreas program, please visit the website.  And if you believe in this mission, please consider making a donation to the project.



The team at Disney’s T1D Everyday Magic asked for some meme’ry from some folks in the community.  Here’s mine.  (And you know how I feel about cupcakes.)

Check out the rest, and for more T1D Memes, there’s a whole awesome site:)

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!


Get every new post delivered to your Inbox

Join other followers