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Posts tagged ‘type 1 diabetes’

Looking Back: Visual Reminders.

Nothing helps remind me more about the importance of being familiar with serving sizes and what they look like than being on the road for a few days.  Meals away from the comfort and familiarity of my kitchen make for some guesswork, and these last few days have shown me that I could use a refresher on serving sizes.  Here’s a look back at a post from 2012 about keeping your eye trained as to how “half a cup” really shapes up.

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A deck of cards.  A baseball.  A pair of dice and you only look at one of them. (Sorry for the clumsiness; I think it’s weird to write “A die.” as a sentence.  Looks odd.)  A tennis ball.   A hockey puck.

The things that health-related articles use as “visual cues” for portion sizes and serving sizes makes me wish I was more athletic, because then I’d have a really strong feel for the size of these different balls, etc.  (Sidenote:  Hey. Ever write something you want to immediately delete but then you keep it and just wish your brain was less daft?)  But these visual cue things are helpful for me, because if I don’t take note of just how big “one small apple” really is, it’s easy to lose track of how much I’m eating.  I need to constantly refresh my eyes on serving sizes, which in turn helps me better estimate carbs when I’m SWAG (aka Scientific, Wild-Ass Guessing)’ing it.

(Second sidenote:  The hamburger pictured here looks exactly like a fudge-drizzled chocolate cookie, which is making my brain very confused.)

Which is what I spent part of my morning doing today:  busting out the measuring cups in my house and reminding myself what certain foods look like when properly measured out.  I’m not shooting for serving sizes or anything FDA official.  I needed to do this purely for carb assessment reasons.  What does 35 grams worth of Rice Chex measure out to look like?  How much salad dressing is 10 grams of carbs?  Brain, be reminded of what 28 carbs-worth of banana goodness looks like!!

Birdy thought I was a basketcase this morning, measuring things out and then putting them back.  “No eat banana, Mama?”  “No more cereal and milk, Mama?”  “That chicken is very good, right, Mama?” By the time I started eye-balling the lunch meat and measuring it on our kitchen scale, she threw her hands up in disgust and went to find her Thomas trains.  (Tertiary sidenote:  Spencer, the silver, streamlined diesel train, is the same size as 15 grams worth of banana, dagnabit.)

But now my brain is brought back to reality.  Less guesstimating and more true and proper estimating, which should help me fine-tune my boluses a touch.  Reminders like this are helpful in keeping me from sliding down that slippery slope of eating 18 lb apples and bathtubs full of Golden Grahams.

(Last sidenote:  I’m sorry that only 2/3 of this post made sense.)

 

Stress!!!! and Diabetes.

Do your blood sugars respond to food?  Of course.  How about to insulin?  And exercise?  A big “hell yes” to those, too.  Food, insulin, and exercise have tangible influence on my blood sugar levels.  But one influencer that I don’t often take into account is stress … which is a ridiculous variable for me to ignore because stress can make my blood sugars leap over tall basal rates in a single bound.

Oh look – a video!

How does stress change the mapping of your blood sugars?

Stream of Consciousness.

Time for a bullet list of purged thoughts, brought to you by the bottom of my coffee pot.

  • It’s not snowing.  I don’t usually have a rage response to winter, but this one has been more than we could properly manage.  (Like when our snow shovel broke under the weight of the drift we were shoveling through.  Or when our snow blower ran out of gas and the gas was in the shed out back and we couldn’t get to the shed because the show was up past our hips.  #fuckyousnow and I mean it.)  So for it to be #notsnowing and #melting is a good thing.
  • Get these hashtags off my blog. #nottwitter
  • For a solid five year period, I did not lose a single pair of gloves.  If one fell out of the car when I opened the door, I saw it immediately.  If I dropped one, it always managed to fall into my bag and not end up lost forever.  Gloves were among the most lose-able things in my wardrobe and yet they always managed to stay paired up and on hand (literally).  But this year, something happened to my glove mojo and I’ve lost four pairs this winter alone.  I don’t know how to recover my good glove karma.
  • I have bought the same pair of moonstone stud earrings a dozen different times, and yet I still only have two singular earrings.  It’s unnerving.  Do these cheap little earrings go where the gloves go?
  • This weekend, I’ll be at the Diabetes UnConference in Las Vegas, where there isn’t any snow and there are many PWD on tap to attend.  I’m looking forward to making new friends, seeing old ones, and bolusing for copious amounts of iced coffee.
  • Way to GO, mySugr!!!
  • Does emotional stress spike up your blood sugar?  Caroline dives in to find out.  (But the answer is yes.  A firm and confidence yes.)
  • Did you guys see that the Spare a Rose totals have been boosted, thanks to a donation program from Asante426 lives saved, thanks to all of you.
  • Thanks to #dblogcheck day, I found some gluten-free lemon bars on this blog.  And now I love this blog.
  • At the Rhode Island JDRF TypOneNation event last weekend, I heard about a new sort of barrier tape to put underneath my Dexcom sensors to help mitigate the wicked rash.  It’s called Mepitac tape and I bought my first roll off of Amazon this morning.  I have no idea if it will work better/worse than the J&J Toughpads I have been using for the last three years, but I’ll try anything to keep the itch at bay.  Will report back after I give it a go.
  • Ripped from DHF’s site:  “The Diabetes Hands Foundation is happy and excited to offer scholarships to diabetes conferences as a part of the Diabetes Advocates program. We offer these scholarships to help get advocates to the major conferences in the US so the patient voice is present.”  You can find out more about the scholarships here, and then you should APPLY because your voice MATTERS.  All caps and such.
  • My friend Jenni Prokopy (the ChronicBabe) kicks ass, and I want her to continue to kick ass.  Check out her kick(ass)starter here.
  • I keep circling back to this David Sedaris essay about his FitBit because I am in a hardcore week of competition with an equally-competitive friend on FitBit, and I’m afraid I may wear holes in the soles of my soul in efforts to win.
  • But as I write this, I’m already itching to get up and clock a few miles on the treadmill in an attempt to gain some ground before traveling this afternoon.
  • In related news, I am relentlessly competitive.
  • And with that, I need to go run.
  • While I’m gone, the cats will guard the door like little, furry sentinels.


Guards.

A photo posted by Kerri Sparling (@sixuntilme) on

 

 

It’s a Good Tune.

“BEEEEP … BEEEEP… BEEEEP!”

“Mom, your Dexcom is making noise,” my daughter says casually, as we’re kicking the soccer ball around in the basement (because we’ll never, ever go outside again because snow).

“It is. Hang on a second,” I told her. A click shows that my blood sugar is over my high threshold, with a few yellow dots taking up residence on my graph. I’m not totally worried, though, because a check of my pump reveals some insulin still on board. I decide to let things play out and see where I land a bit later.

“I’m fine, kiddo. Let’s keep playing.”

The Dexcom has been part of my daughter’s life for as long as she can remember. When she was very small and figuring out her letters for the first time, I remember her running a tiny fingertip along the bottom of my receiver – “D-E-X-C-O-M spells … whaasat spell, Mama?”

“Dexcom. That’s the name of the machine.”

(Unlike most kids, my daughter’s list of first words included “pump,” “Dexcom,” and “diabeedles.” Maybe she’ll grow up to be a doctor? At the very least, this knowledge base has given her a leg-up on winning a few topic-specific spelling bees.)

As Birdy grew older, she started to understand some of the information that different diabetes devices provided. We’ve talked a little bit about how three digit numbers on my glucose meter that begin with “2” most often require me to take some insulin from my pump (same goes for the ones that begin with “3,” only those also come with some curse words), and how when the Dexcom makes an alarm sound, I need to check it and take some action.

“But that alarm – the BEEEEP … BEEEEP… BEEEEP! one – is one we can ignore, right Mom?”

“Ignore?”

“Yeah. When it goes BEEEEP … BEEEEP… BEEEEP, you don’t always look at it. But when it goes like this,” she raises her hands up in front of herself, like she’s sneaking up on something, “BeepBeepBeep really fast, then you look right away and get some glucose tabs.”

Funny how much she notices, how much of my diabetes self-care ritual has become a natural part of our time together.

“Kind of. The long beeps mean my blood sugar might be higher, but it’s not an emergency. The short beeps mean I have low blood sugar, and I need to get something to eat so it doesn’t become a big deal. Does that make sense?”

“Yeah.”

The sounds of the low and high alarms ringing out from my Dexcom receiver have become familiar, like a subtle (and sometimes not-so-subtle) soundtrack for my diabetes life, but I didn’t realize until recently that they are also sounds that remind my daughter of her mother.

The other morning, I heard Birdy walking into the bathroom to brush her teeth, and she was humming a little tune to herself, one that I recognized.

“Hey you. Are you singing a song?”

“Yeah. It’s the Dexcom beep song. It’s a good tune.” She grinned at me, toothbrush hanging out of her mouth.

That Escalated Quickly.

After downloading and uploading and reloading all my device data to Diasend, I’ve seen the Big Picture, and it kind of blows.

For a good, long clip, things have been completely fine.  In range most of the time, not too many gross lows, and highs were classified as an extended 180 mg/dL, with symptoms to boot.  Well done!  Diabetes on point!  Celebrate by shoveling snow!

But a hiccup here and there have given way to a slippery slope of fuckery.  My two week average a month ago was fine.  My two week average yesterday was gross and not at all where I want it (and know I can have it).

I’m glad I’ve looked at my data, because I’m not sure I would have noticed just how dodgy things had become.  (And a quiet but still curmudgeonish thank you to the need for a flurry of paperwork in order to get my new insulin pump through insurance approval, forcing me to provide blood sugar logs and other data points in order to convince my insurance company that yes, I do have type 1 diabetes.)

I didn’t realize how much higher my two week average had become until I looked at it and recognized the need for change.  Two weeks for me makes a big difference, because it’s in that time frame where I make crappy tendencies into crappy habits.  Ignoring high alarms is okay for a day, but not for a week.  Forgetting to pre-bolus can roll by a few times but more than that equals out to crummy postprandials.  Carby food choices that are lackadaisically carb-counted brings on the blood sugar roller coaster.

Eff that noise.

Time to deescalate this.  Quickly.  Before it becomes as piled on as the three foot mound of snow on the back deck.

Knotted Tubing.

Apparently I knit insulin pump tubing into cute little pretzels while I sleep.

#WeAreNotWaiting: The (Not So?) Brief Story of Tidepool.

Technology has scrambled forward by true leaps and bounds in the last few years, making my Clinitest urinalysis kit of 1986 seem pretty archaic.  Now, people touched by diabetes can see their glucose levels with a flick of their wrist, and there’s more on the horizon as far as data and diabetes management.  Today I’m so happy to have Howard Look, President, CEO and Founder of Tidepool, sharing his personal diabetes story on SUM, talking about why he simply cannot wait.

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“Katie, why are you going to the bathroom again?”

“I have to go! And I’m SOOOO thirsty!”

Our story is probably familiar: We were on a weekend camping trip and all together in our family-sized tent. Katie, now 14 but 11 at the time, had gotten up THREE TIMES that night, unzipping the tent and wandering with her flashlight to the campground bathroom. The next morning, breakfast was the usual campground fare – several glasses of orange juice and pancakes.

By noon, Katie was throwing up.

It was an exciting time in our family, full of possibility. Katie had just started 6th grade at a new school. She was making new friends, trying out for the softball team, and was ready for new challenges and a new chapter in her life. Who knew.

Katie one week before diagnosis. I look at this now and realize how much weight she had lost.

Katie one week before diagnosis. I look at this now and realize how much weight she had lost.

A day later, we were at Lucille Packard Children’s Hospital at Stanford. I just wanted someone to say “Don’t worry, your daughter is not going to die.” I wasn’t so sure. After a sleepless night and a morning full of words we didn’t understand (beta cells, boluses, ketoacidosis…) our heads were spinning. Fortunately, our day-one angel, Jen Block, looked Katie straight in the eye and calmly reassured us: “Katie, I just want you to know that everything is going to be OK. You are going to be fine. I have type 1 diabetes just like you.” Jen showed Katie her insulin pump and explained how she could have the same thing. In Jen, I could see a grown-up Katie. And finally I knew everything was going to be OK.

Well, sort of…

Like Crawling through Broken Glass
I’m a nerd, a Geek Dad. I’ve lived and worked in Silicon Valley since college and have been really fortunate to be a part of some really cool things: I was on the founding team at TiVo and was VP of Software at Pixar. Just prior to Tidepool I was VP of Software at Amazon.

Like geeks do, I dove in to try to understand what T1D was all about. Katie had mastered computing doses and giving herself shots really quickly (great at math, that’s my girl) and we saw the value in an insulin pump and CGM right away. Within three months, Katie was on a pump and a CGM.

I tried to get us up and running with the software that came with her pump. Bzzzzzt. No sorry, thank you for playing. It won’t work with your browser. OK, you made it work with your browser, but your plugin is out of date. OK, you updated the plugin but BEWARE: it’s an unsigned app that you shouldn’t trust. OK, you are willing to take that risk, but your new computer has USB 3.0 and the USB stick isn’t compatible with that.

Some people wonder why almost no one uploads their pump data… I think I know why: because getting it to work can be like CRAWLING. THROUGH. BROKEN. GLASS. And remember: I’m a software guy, a Geek Dad… I usually LIKE dealing with this stuff. But I found that even if you could get it all to work, the software didn’t provide intuitive, actionable insights.

To make matters worse, Katie didn’t like her first CGM. It hurt to put it in (we called it “the harpoon”) and it wasn’t accurate for her. Fortunately, the Dexcom G4 had just come out, which worked MUCH better. It hurt less and gave readings that were dead-on with her BGM.

But unfortunately, Dexcom Studio is PC only we are a Mac family. I sorted that out (with Parallels for Mac), but still, we had one piece of software for the CGM, a different piece of software for the pump and BGMs, and no way to see it all together in one place.

I asked myself, over and over:

Why is this so hard? And WHY ISN’T ANYONE DOING ANYTHING ABOUT IT???

Right around that time, fellow Geek Dad, T1D guy and tech blogger Scott Hanselman posted
The Sad State of Diabetes Technology in 2012”. I was fist pumping and shouting “Yeah! What he said!!!” while reading it. If you scroll halfway down the comments, you’ll see me chiming in:

“… I have a dream that a smart, motivated team of people could create ‘The Mozilla … of Diabetes Technology.’ … What if we … did it in a way the wasn’t constrained by VC funding and sought goodness, not profit?”

Scott’s article catalyzed me to take action. I met with anyone that would talk to me and looked for people who felt like I did. Jen Block introduced me to Lane Desborough (at Medtronic at the time), who introduced me to Aaron Kowalski at JDRF, who introduced me to Brandon Arbiter, who had invented this amazing app called Nutshell. I had found my peeps.

Jen also introduced me to Dr. Joyce Lee, who connected me to Dr. Saleh Adi at UCSF, and to Steve McCanne, yet another Geek Dad (or as I called us “D-Dads with Attitudes”). Steve also has a teen daughter with T1D, and had been hacking some code to make it easier for Dr. Adi to review his daughter’s data, all in one place. When I saw what Steve and Dr. Adi and the team at UCSF had put together, I knew it was the start of something beautiful.

#WeAreNotWaiting
Fast forward to now, early 2015. Tidepool has existed for just over a year and a half and I’m really proud of what we’ve accomplished in a very short period of time. As the hashtag says, #WeAreNotWaiting.

In the beginning, we got funded by some very generous donors. That allowed me to hire an amazing team of developers and designers. Six of us have T1D, and two of us have family members with T1D. We like to say “We have pancreas in the game.”

Our mission is simple: Deliver great software that helps reduce the burden of managing T1D.

We’re tackling that mission in a pretty unique way:

  • We are a non-profit. We’re not in this for the money. We’re in this to help make things better for the whole diabetes industry. By not competing, we can get more done.
  • We are an open source project. This lets us leverage a vibrant, motivated community. It also means we are giving away the source code for free.
  • We feel strongly that design and usability matter. T1D is a burdensome disease. You don’t need the software to be making it worse.
  • We are building everything with the utmost attention to privacy, security, HIPAA and regulatory compliance. Yes, this is more work and takes longer, but without this, we can’t achieve broad distribution and help as many people as possible.

Most importantly, we are helping the industry see the value in liberating device data. We’ve made it very clear: We believe that patients own their own health data. People should get to choose what software they want to use to for their diabetes therapy with that data.

We’ve made great progress on the open data front: Asante, Dexcom, Insulet, Tandem and Abbott have all given us their data protocols. We also have great supporters at Animas and Medtronic and they are considering it. We will also implement and support the IEEE 11073 standards for BGMs, CGMs and pumps, which will make it that much easier for device makers to create interoperable products.

What is Tidepool building, and where are we headed?
The Tidepool Platform enables the next wave of diabetes applications. It’s secure, HIPAA-compliant and lets you choose how you want to see and share your data. We hope that it will foster a whole new ecosystem of applications that help reduce the burden of T1D.

The Tidepool Uploader gets data from any diabetes device that has made their device protocol available.  It’s a Chrome Extension, so it works with Macs and PCs (and Linux, too, if you’re a geek like us :) . JDRF generously funded development of the Uploader. The project will also make it easier to gather data that will be useful to artificial pancreas researchers.

Blip is the home for all of your data. You can see it all in one place. You and the people who support you can use Blip to look, learn and make informed decisions together. Blip is currently being used in a pilot study at UCSF. We’re talking to other clinics like Stanford as well. We hope to have Blip ready for broad testing and deployment in the first half of 2015.

Nutshell is a mobile app that remembers what you ate and ties it together with your diabetes numbers. The next time you order that burrito, you can figure out how much insulin you need with confidence. Nutshell currently exists as a working prototype and we’re looking for funding to take it further.

Going forward, we have lots other projects to tackle:

  •  We’ll be asking users if they’d like to donate their data to an anonymized research database. We plan on exposing that database freely. We also plan on creating the “Tidepool Query Language” and APIs that will enable researchers to easily use our platform to conduct studies based on device data.
  • We will integrate fitness data from apps Strava and RunKeeper and devices like FitBit and FuelBand.
  • Our platform is the perfect foundation for artificial pancreas research and commercialization.
  • We’d love to build an advanced decision support interface that will help people and their doctors optimize their insulin therapy. We have a prototype of this called Sonar.
  • Some device makers will choose to let us host their data and applications. For them we’ll need to expose APIs so they can access their device’s diagnostic data and let them connect directly with their customers. We hope to generate modest revenue by doing this so that we can become a self-sustaining non-profit.

Which brings us to…

How you can help?
Most importantly, we need your financial support. So far, we’ve had some very generous donors who have supported us. Unfortunately the funding that we have received up to this point is not enough to get us to where we need to be.

The good news is that we have a solid plan to generate just enough revenue to break even and become a self-sustaining non-profit, hopefully by the end of 2015. That means that you can think of your donation as an investment in the future of diabetes technology. There is no financial return on this investment since we are a non-profit, but you will definitely rack up Good Karma.

There are other ways you can help to. If you are a developer, tester or UI designer you can volunteer as a contributor to the project. Join us at https://developer.tidepool.io for more detail. If you have experience with regulatory filings, you can help us with those. It’s a lot of work!

If you want to stay in touch with us and hear about updates, you can sign up for our mailing list at tidepool.org, join us at facebook.com/Tidepool_org and follow us on Twitter @Tidepool_org.

Thanks to Kerri for letting us take the mic for a little while, and to the entire diabetes community for your ongoing support of our efforts.

#WeAreNotWaiting

Cheers,
Howard

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Howard Look is the founder and CEO of Tidepool, a 501c3 non-profit with the mission of reducing the burden of managing diabetes through technology. Prior to Tidepool, Howard  was on the founder’s team at TiVo where he was VP of Software and User Experience. He was also VP of Software at Pixar, where he led the team developing Pixar’s proprietary film-making system, and at Amazon where he ran a secret software project to develop devices that leverage cloud services. Howard has a BS in Computer Engineering from Carnegie Mellon University. His teenage daughter has T1D.

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