Apparently I knit insulin pump tubing into cute little pretzels while I sleep.
Apparently I knit insulin pump tubing into cute little pretzels while I sleep.
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.
* * *
“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.
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.
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:
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:
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!
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.
* * *
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.
My sweet tooth is completely jacked up.
Bypassing the dessert table isn’t a tough choice. I can skip the brownies and pie since the Great Palette Change of 2010 (when I was pregnant and my body decided that chocolate was gross and seafood was suddenly on the approved list) and now that I’ve been off the gluten stuff since August of last year, avoiding sweet treats has been a no-brainer (because if I have gluten, my body becomes a vessel of extreme bloat – no effing thank you).
But oh holy cow do I love coffee, and the amount of sweetener I would add to a cup of coffee was abysmal.
I think my taste buds ended up a little warped as a result of drinking diet soda when I was a kid. After my diabetes diagnosis in 1986, Equal replaced sugar in my house, and the sweet power of Equal is eleven billion times sweeter than regular sugar. (Not entirely true – 160-220 times sweeter than sugar seems to be the information I found online. Correct me if I’m wrong, please?) Convincing my tongue that less sweet is sweet enough has taken some time.
Over the last few months, I’ve been actively cutting back the amount of artificial sweetener I’m cramming into my coffee cup. At one point, I was using three Splenda in one iced coffee, and for me that felt like way too much. So, week by week, I tried to use less. The first few days it was two and a half packets, in an attempt to show my tastebuds that less is more. After a few weeks, I had cut back to one packet. (And one packet helped, because then I felt like I could let go of that matchy-matchy OCD thing.)
Trying to cut back on artificial sweeteners and am down to half a packet of Splenda in my coffee … down from three. #supersweet
— Kerri / Diabetes (@sixuntilme) January 12, 2015
And now I’m using half of a packet, or sometimes none at all (depending on how nice the coffee/milk combo is). My goal is to make “none” the new standard.
It took some time to adjust to the lack of sweet. My body craved that cloyingly sweet taste bud burst, but weaning was the way to go for me because cutting out sweetener entirely and all at once would have been an exercise in futility. I’m not there yet, but working to make this a “habit of less” because I’m ready to ditch sweetener as much as possible.
It’s hard, though. Sometimes I just want to rub the contents of a packet of Truvia on my gums. (Too much?)
Have you ever worked to ditch a habit? How did you do it? I think the process of weaning is BORING and if there are ways to trick my mouth into not caring about sweetener, I’d love a tip or two.
When you wear something every, single day, you notice every, single bit of it. I’ve been wearing this pump for four years and I know the lines of it by heart. (I remember the day that I switched from Medtronic to Animas and even those similarly-structured insulin pumps felt entirely different to me in weight, curve, and especially clip. As I wrote in my Animas Vibe initial review, change can be awkward.)
Two weeks ago, I dropped my insulin pump on the bathroom floor. It survived the fall, but happened to fall just so and smashed the edge of the battery cap the teeniest bit. See? (Ignore the hard knocks look of my pump overall. I’m tough on this thing.)
Okay, so maybe it’s not obvious (I can barely see it myself, even when it’s pointed out to my eyeballs), but my hip knew instantly. The jagged catch on the battery cap bit into my skin all day long and drove me bananas. (The photo is not accurate as far as how the chip lined up with my skin. The battery cap pictured is not screwed tightly onto the pump. When it’s on right, the chip faces my body.)
“Do you feel this?” I asked Chris, running his finger over the edge of the battery cap. “That teeny chip? It’s making me crazy.”
“You can feel that?” he asked, surprised.
“I can. I’m like the Princess and the Pea of insulin pumps.” (That would make for an excessively long fairy tale title.)
The point of this post? To illustrate how fully integrated these devices become into our lives, where we notice even the most seemingly insignificant blip. And to also note how awesome it is when your local pump rep just happens to have a replacement battery cap in the trunk of her car.
I can’t cook, but I can bake. (Which is a bit ironic, because the things I create are best avoided, for my own, personal blood sugar reasons. /digression) And for our annual holiday dessert party, I worked with a cookie recipe from the How Can It Be Gluten Free Cookbook to bake up some delicious treats.
Here’s the low-down on how Birdy and I baked these up:
1 3/4 cups Bob’s Red Mill gluten-free baking flour
1 tsp baking soda
3/4 tsp xanathan gum
1/2 tsp salt
10 tablespoons salted butter, melted
3/4 cup packed light brown sugar
1/3 cup granulated sugar
1 large egg
2 tablespoons whole milk
1 tablespoon vanilla extract
1 cup chocolate chips
3/4 cup Heath Bar bits
The recipe in the How Can It Be Gluten Free Cookbook is pretty spot on, but we tweak it just a little bit. The ingredients in the book call for unsalted butter, etc. but Birdzone and I made some changes based on preference. (We like cookies that are chewy and soft, and this chart serves as a gorgeous guide.)
First, we combined the flour, baking soda, xanathan gum (the magic ingredient!), and salt together in one bowl. Then we whisked together the melted butter, brown sugar, and granulated sugar in another bowl, mixing until it was smooth. To the butter, etc bowl we then added the egg, milk, and vanilla and beat the crap out of that mixture with a whisk until it was one smooth mixture. Then we added the flour mixture to the butter bowl (Does this make sense? Refer to the original recipe for accurate info.) with the intention of mixing it together slowly, but when Birdy helps, she dumps the whole bowl in at once, so it all went in at once. (Oh my, run on sentence.)
Once the bowls are combined, we add in the chocolate chips and the Heath bar bits. Then the dough sits, tightly covered, for 30 minutes. Only we left ours for 45 minutes, which made it even easier to work with. (I haven’t tried refrigerating the dough overnight, but that’s next on my list.)
After 30 – 45 minutes, preheat the oven to 350 degrees. The dough is ready to shape into tablespoon’ed balls (that sounds perverse, sorry) and spaced out on the cookie sheet. Bake the cookies for about 12 minutes, or until the edges are golden and the middles don’t seem sludgy or weird.
The final product is a chewy, delicious cookie that doesn’t have any gluten in it and will make everything other than your blood sugars happy. (The photo up at the top of this post is of our first attempt at these cookies, without Heath Bar and without extra butter or salt. They were good, but not nearly as good as the ones we didn’t snap pictures of … mostly because the cookies didn’t last long enough to photograph. They were that good.)
Happy baking and for Pete’s sake, BOLUS.
“What’s insulin?” my daughter asked me as I was buckling her into the car seat.
She knows the word because vials of insulin sit where the butter usually resides in other people’s refrigerators.
“Insulin is a hormone that people’s pancreases make. It helps make the foods we eat into something our bodies can use for energy. My pancreas doesn’t make any insulin, so I put it into my body using my pump or the needles,” is my explanation.
“Right. And that’s why you have diabetes and my dad and I don’t,” she replies.
“Exactly. My pancreas is lazy sometimes. Instead of making insulin, maybe my pancreas goes to the beach?”
She latched onto this idea immediately. “Yeah! Instead of making insulin, your pancreas goes in a ferris wheel!”
“Instead of making insulin, my pancreas has an ice cream party!”
“Oooh, oooh! Instead of making insulin, your pancreas goes to the library and listens to story time and then takes out three books!”
The game went on for the entire car ride home. “Instead of making insulin, your pancreas writes a letter to Santa!” “Instead of making insulin, my pancreas takes a trip around the moon!” “Instead of making insulin, your pancreas jumps on a trampoline!” “Instead of making insulin, my pancreas grows peanuts on a peanut farm!” “Instead of making insulin, your pancreas hangs out on Sundays with Batman!” (On Sundays only.)
As the car pulled into the driveway, we were giggling madly about the adventures of my under-employed pancreas, outlined in great detail.
“Mom, your pancreas is extremely silly.”
“It totally is.”
“I wish it made insulin, though,” she said, snapping reality back into place in that plain, matter-of-fact way only she can. She gave me a grin that made my heart swell and my pancreas shift uncomfortably in its seat.
“Yep. Me too, love.”
When I was younger, my pediatric endocrinologist told me that I shouldn’t be poking the syringes into the parts of my skin that didn’t hurt. “If you don’t feel the pinch of the needle, that means you have scar tissue building up, which can lead to poor absorption of the insulin.” She stayed on me about rotating injection sites, and even though I didn’t like rotating to new spots that hurt a little, she was right. The more I rotated, the better my skin felt and fewer egg-bumps of scar tissue formed under my skin.
… shame on me for not following that same rotation protocol when it comes to Dexcom sensors. I wear mine almost exclusively on my outer thigh because that’s where they feel the best, stay put the best, and are least apt to peel away before their time is up. For several years, this worked fine because I rotated within the thigh site, making sure not to reuse an area in the same month. But once the Dexcom adhesive rash started, I was screwed because the skin was taxed not just by the sensor itself, but by the residual rash.
Dexcom rash management has been better lately because of precautionary measures, but sometimes the rash flares up as a result of ten different factors (all ones that itch). Last week, I was traveling for work and kept applying Opsite Flexifix tape to my Dexcom sensor as it was starting to peel away (and yes, I had a spare sensor on me but still didn’t want to pull the one that was working. I’m a stubborn human.) I covered that thing with tape. And for two days, it was great. But then it started to turn a little red underneath the tape (not the sensor adhesive, but the skin underneath the tape). After another day, it went entirely bananas and turned bright red and started to swell.
“I can feel the heat of the infection through my jeans,” I said out loud to Chris. At which point, I realized I was a frigging idiot for not pulling the sensor off.
Off it came, and what lurked beneath was gross. (“It was the worst Dexcom rash … I ever seen!!” Actual Large Marge quote.) No way was I going to take a picture for evidence because it was horribly nasty and I’m irresponsible for letting the cost/convenience/reinstallation of the sensor supersede the integrity of my skin. What was underneath the Toughpad was completely fine, but every bit of skin that had come into contact with the Opsite tape alone was raised, red, and borderline blistering.
It took a week for that site to heal, and only after I carefully applied Neosporin and bandaged to it. Which brought me to that unfortunate realization: I suck at rotating my Dexcom sensor sites. And I need to be better about it, especially since the data is very important to me.
So I’m trying out a new spot in efforts to give my thighs some time to properly heal. For the last week, I’ve had a sensor on my lower hip and it has worked much better than I thought it would. It’s just below the belt time on my outer hip (see Gingerbread Man for placement accuracy because holidays) and despite the rub of pants, etc. it is staying put and not peeling up. I have a little bit of Opsite tape on the lower edge and so far, so good.
I hope this sensor can run its seven day course without leaving a mark. Because otherwise … itch, please.
Copyright © 2015 Kerri Sparling & Six Until Me. 2005 - 2015. All rights reserved.
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