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Posts tagged ‘diabetes’

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. 

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.

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.


All Night Long.

It started out innocently enough.  Just a wiggly little drop before bedtime with a bit of insulin on board, so the need for snacking was elevated.

With .8u IOB. Snacktime. #diabetes

A photo posted by Kerri Sparling (@sixuntilme) on

A small handful of raisins and I’m on my merry way.  No worries!

But then 2.30 am hit and I was in the trenches again.  Dexcom alarms were blaring, texts from my Share friends were pinging, and the sweat was beaded up on my brow.

At least my phone is fully charged this time? #diabetes

A photo posted by Kerri Sparling (@sixuntilme) on

But no worries!  All night long lows?  I’ve got this.  Juice box plus temporary basal rate should bring me up juuuuuust fine.

Then Dexcom alarms went off again at 4 am (this time, I was a little high from over-treating the low). Corrected that shit.  No worries.  (Kind of worried.  I am tired.  When do I sleep?  Maybe tonight.  Aw fuck it – let’s dance.)

Diabetes is all night long.

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.

GIVEAWAY: My Favorite Medical Alert Bracelet.

The “long and overdue” part of this post cannot be over-stated.  I have had the best medical alert bracelet from Sticky JMedical for a very long time now and am just writing about it this morning.

But it’s lovely and discreet.  Because of that, I wear this bracelet every, single day, which helps protect me in the off-chance that something keeps me from speaking on my own behalf.

This is the bracelet that I have:

Medical alert bracelet #diabetes

A photo posted by Kerri Sparling (@sixuntilme) on

And it is excellent in its simplicity. This bracelet has been worn while running over bridges, while carving pumpkins (it was easy enough to remove pumpkin guts from), on the red carpet, and around the house, no problem. It goes with everything. It doesn’t scream MEDICAL ALERT BRACELET, but if there’s an emergency, this jewelery is obvious in its intention.

It’s taken me several years to find an every day bracelet, but this one is it. So much so that I plan to purchase one for whoever wins today’s giveaway. If you’d like to enter, just leave a comment on this blog post with your preferred Muppet (any Muppet will do) and I’ll randomly select one winner on Friday morning. You can enter starting this morning through Thursday at midnight (and if there is a medical alert bracelet in the same price range that you’d prefer, I’m all ears).

Thanks to Sticky JMedical for creating something so timeless that writing about it a bit late is still hopefully acceptable.

[DISCLOSURE: Sticky JMedical sent me the bracelet several months ago for free but did not ask me to write about it, or host a giveaway. I decided to do that on my own because their product is pretty frigging awesome. All opinions are mine, as is my tardiness.]

As a Kite.

Woke up to this little gremlin number on my meter:

Gross, gross start to the day. #DOCtober #diabetes

A photo posted by Kerri Sparling (@sixuntilme) on

I pulled my site and immediately blood streamed out, leaving a trail down the side of my hip and actually running onto the bathroom floor (which is DISGUSTING and makes me feel like queen of the macabre).  The site was sore and tender and 12 hours past the “three day” mark, which may explain why it went gross on me.

Regardless of the “why,” the day started with an insistent need to pee and then drink a ton of water from the faucet.  And then change my pump out.  And then rage bolus.  And then start the day determined to have this be the One Thing that Sucks today instead of letting it set the stage for a crappy Tuesday.


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