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The One About Broken Windows.

Tackling diabetes, one window at a time.

(See also:  caulk)

(And the second part of the CGM in the Cloud write-up will be up on Monday. A long night with a cranky Bird didn’t make for any decent writing. Thanks for your patience!)

We Are Not Waiting: CGM in the Cloud (Part 1).

Waiting, when it comes to diabetes, frustrates the hell out of me.  According to the “cure in five years!” mantra that rang out constantly when I was diagnosed in 1986, I’ve been waiting for a cure for almost 30 years.  Currently, I wait (impatiently) for the Animas Vibe to become available to US patients.  I wait for the Dexcom Share application to become available.  I wait for doctors to call me in for appointments and on the phone with mail order pharmacies and on and on … lots of waiting.

I hate waiting.

But people aren’t waiting anymore.  There’s a whole movement in the diabetes community embracing that very concept.  And today (and tomorrow) I’ll be taking an in-depth look at how amazing people in this community are taking their diabetes data into their own hands.  We are not waiting, indeed!

Today, John Costik, one of the founding members of the CGM in the Cloud Facebook group, an engineer, and diabetes dad to Evan, talks with me about the #wearenotwaiting movement and how he was inspired to make CGM data bend to his needs.  (This is a long post, but his perspectives are awesome.)

Kerri:  What is your connection to diabetes?  And can you tell me about the CGM in the Cloud group, with some background on the We Are Not Waiting movement?

John Costik:  When Evan was diagnosed, it felt like the floor to the lives we knew had vanished. The grief, anxiety and denial were all very real, and once we had our hospital training and sent on our way, the reality of it all sank in. Type one management is hard! But my wife, Laura and I are both engineers; we saw, almost immediately, that processes can be improved, data can be collected and analyzed. If we could make life (even just a little) more like life without T1D, we had to try. After researching pumps and CGMs around Christmas of that year, we decided we wanted to start on the [Dexcom] G4 as soon as possible. The DOC was very helpful – your first and second impressions posts, along with other reviews, made it pretty clear that this was an amazing device.

We danced with the insurance company, fortunately not for too long, and we had Evan’s CGM in hand in late February of 2013. I decided to start tweeting about it – it was a very real shift to a more optimistic attitude in all of us.

I was hooked, and the anxious father in me never wanted those numbers and trends to be more than a glance a way. Less than a week after getting the G4, using files provided with Dexcom Studio (libraries), we had a windows laptop pulling the data and sending to a simple Google doc for Laura and me to pull up throughout the day. I built a simple trend and number app for our iPhones that pulled this data – sitting in a dock at work, Evan’s BGs were a glance away.

I also wanted to cover the “gaps” in data – recess, walks around the ponds at daycare; arguably the riskiest times for a low to creep up on Evan. I then began to look into using a cellphone to read the G4, and send the data to a cloud service that any number of devices could pull from. I took family medical leave starting in April 2013: Evan’s honeymoon was ending, pump therapy was beginning, and Kindergarten prep wasn’t going to be as simple as we’d expected (plus, Laura and I were exhausted). I set aside a few weeks in May to see if I could make the cellphone chat with the G4. Fortunately, I didn’t let my technical shortcomings keep me from trying, and I figured it out pretty quickly. An Android app that can read G4 data became a thing!

This led up to an email from the wonderful Lane Desborough. We got talking, I shared my simple Windows uploader with him, and he began working on “Nightscout” – a glance-able BG chart that could be viewed throughout a home. After several months of testing, improving the Android app to work more reliably, I shared the code – Lane continued to develop Nightscout, with assistance from Ross Naylor – I leveraged the chart code in our own “Care Portal” and grabbed a Pebble watch to play with.

We continued to work on our apps and tools, more folks on twitter began to notice – and it became very clear that people really wanted this tool. It was life changing for us, and other parent’s immediately saw the value, the hope for a less complex, safer, healthier life it can bring. Freedom!

The “CGM in the Cloud” facebook group started from these early twitter interactions and helping just a few other d-parents looking for a better way. We have wonderful tools, but they can do more! Jason Calabrese, Jason Adams, and Toby Canning deserve the credit for scaling this system.

Jason Adams started the group, because he knew that we were not the only ones tired of waiting.

A simple tweet that started something bigger:

#wearenotwaiting was coined by Howard Look, d-parent and CEO of non-profit start-up Tidepool. It was the call to arms for the first “d-data exchange” hosted by Tidepool and DiabetesMine, just prior to their Innovation Summit in November 2013.

As a movement, it is all about doing more & not waiting for:

  • Anyone else to step up and change the standard of diabetes care.
  • To cut through the old proprietary systems of big medical.
  • To take ownership of our data.
  • To use the combined data (BGs, Nutrition, Insulin, and Biometrics) to unravel the unique mystery that
  • everyone’s T1d is.
  • To go out on a date with a spouse, without T1d’s shadow tagging along.
  • So many things!!

Kerri: What kinds of discussions have you seen taking place in the group?

JC:  Wonderful Testimonials! I can’t express how amazing it is to see so many people “taking back” from T1D.  Parents out on dates, children riding bikes, going on sleepovers – these events were either put off or filled with anxiety and fear over the constant “???” Removing the mystery makes it possible. It makes averting dangerous lows possible… To see others experience what we experienced, it is still overwhelming.

HELP! And lots of it freely given… New folks learn, and teach others, the combined learning of hundreds, now (potentially) 1,500+ people. How do you pack this setup together? How does your child carry it?  What phone works best? What cables do I need? How do I compile the code? I see the full spectrum of technical prowess in the group members, but no one should ever (and I hope hasn’t) feel that there are any questions off limits. I know, as I’m typing this, that there are at least 20 conversations going on covering how to install the pebble watch to the best Nintendo 3DS case to stuff this setup into.  The future! Don’t like ???’s We can see through them – Want less lag in your CGM data? That’s coming.

The discussions in the group also point out the very real shortcomings of a DIY system – all of a sudden, instead of just worrying about a sensor problem or being out of range – you have cell service drops, weak wifi, bad cables, phone battery life, all these new points of failure… but we work through them, because not one or all of those new concerns can topple the improvement in life the “CGM in the Cloud” brings.

Kerri:  How is this group moving current diabetes technology into tomorrow’s tech space?

JC:  CGM in the Cloud gives us a look at the future of connected devices – a space that consumer products are starting to fill, but medical devices lag. It’s understandable: regulatory delays, walled-off device ecosystems that, by design, keep you tied to a single device maker, and device hardware focus (not the integration or software) induce this lag (among many other things). CGM in the Cloud bridges this gulf in time – simply knowing how to “talk” to a device and get the same data we see on a receiver screen, that’s all we need to get started. The remaining technology is there to be bolted on and consume the available data, to display it in such a way that unobtrusively integrates it back into our lives. What works for me may not work for someone else, but that’s fine – there’s no limit to what or how we use or access the data.

Light bulbs that can turn themselves on, change color, audio systems that can wake up the neighborhood, an app that can call someone when conditions merit. Standards, and organizations like Tidepool will make this fly – I would much rather read a standards document than decode byte arrays. I would love a single platform or application that lets me talk to all of my medical devices – not three separate and poorly designed apps that I hate so much I never use anyway…

Publishing protocols and using standards will benefit device makers – I wonder how many new G4 Platinum systems have been sold because CGM in the Cloud exists? I know people that were on the fence between Enlite & G4 – and CGM in the Cloud was the deciding factor (I know people that have switched out right – Insulin suspend or Remote monitoring … remote monitoring was a bigger benefit to them)

Kerri:  Is this group only for Dexcom G4 users? Or is someone dabbling in Medtronic/Abbot space?

JC:  I “hacked” the G4 because it is the best CGM product for us, available to us – d-parents, PWDs – anyone that uses a medical device to keep them alive & well should be able to use device that suits them best. The company name on the device should be irrelevant – I have zero brand loyalty when it comes to CGM, BGM, and pumps – I will use the best product available, and that’s it.

If the Enlite is the best product for someone, and they want to use the CGM in the Cloud tools, they can – we just need to know how to get the data from a 530g to the cloud, preferably wirelessly, and the rest is ready to go. I actually think Medtronic would be doing themselves a favor by letting us know how to read the data in this way. As I mentioned, I know people that have switched or picked the G4 because they can see the data virtually anywhere in the world.

I hope these companies understand that something as “simple” as internet accessible, real-time CGM data makes a big difference for a lot of people.

Kerri: Do you fear the FDA? The CGM companies? Anything? (Or is part of the movement to also #techwithoutfear?)

JC:  I don’t fear the FDA or CGM companies … anymore. My biggest concern, and why it took nearly a year to make the code open source & available on github, is the fear of litigation from individuals. Covering those bases was extremely important. Doing all this work to make our (my family) lives better, only to risk financial ruin would’ve been, well, awful. Licensing, disclaimers, LLC’s – they can cover you pretty well, but it’s the larger CGM in the Cloud community that offers the most help. The programs that CGM in the Clouds use are part of an open source repository owned, not by me or anyone else, but to the group – it’s open to any and all contributors. Ben West has taken on curating the group code, and that code is as much yours as it is mine.

The FDA is coming around – the group will “pre-submit” to the FDA at some point, and if their new guidance is any indication, we could eventually see a “CGM Uploader” app in the “Google Play” store.

In fact, I have several apps and tools that remain private, and these regulatory changes would make sharing them a no-brainer.

Dexcom has been largely silent, but always aware of what we’re up to – I see very little reason to be afraid of them. Every interaction with them has been great. I hope they like what they see!

Kerri: I’ve downloaded the “CGM in the Cloud” high level set up. How easy is it for members to get one another suited up and running on a remote device?

Photo credit to the CGM in the Cloud Facebook grouplarger image here.

JC:  Pretty easy! From phone advice to actual setup help (Rajat Gupta is amazing, I think he’s helped over 60-70 people get it set up), it’s all there, and Facebook group posting style can make it challenging to find an answer – so a new post is always okay.

Laurie Schwartz, Jason Adams, and Jason Calabrese are the group admins, and they’ve done a great job guiding users and staying very current on the posts with their very sage advice. As much as any of us that wrote the original code may have done, they’re the ones that carry it up and on to a level I never would have thought possible. [Editor's note:  Look for more from Laurie tomorrow!]

Kerri:  John, why is this tech important to you?

JC:  It makes life better, it gave Evan a school year with but a single BG below 60. It gives Evan non-diabetic A1c’s – with pizza and cake still on the menu! And hypo and hyper a mere 1% for over a year. (Caveat: Evan eats anything and everything, which allows very good timing and 100% pre-bolus capabilities – solving for specific foods by collecting the data, analyzing and improving the bolus strategies)

It lets Laura and I go on dates, and actually pay attention to something other than diabetes!  Evan and Sarah can play for hours outside, without mommy and daddy hovering or interrupting constantly.  As I’ve said before, it takes back some of what type 1 took from us that day in August.

Technology is only as good as the good it does for people. If it doesn’t make life better, easier – skip it,find something that does. For us, and our use, it goes beyond merely seeing BGs all the time. The increased awareness, even at its most passive, helps us understand diabetes a little better, and it gives a CWD or PWD a team of people that understand it as well. Our school nurse is amazing, and she used a custom site (which will end up in the open source repositories this summer) to view his BGs, log treatments, and view those treatments on the same Chart. Her own intuition about Evan’s diabetes was key to a virtually hypo-free year.

I hope the shared awareness continues to lighten the burden for Evan, and helps prevent burnout as the tasks ramp up. I told him, if we haven’t cured it, I will always be happy to mind his diabetes if he needs a break from it – whether 13 or 53. Technology like this enables me to do just that, without actually impeding or limiting Evan’s ability to enjoy life.

Kerri:  And lastly, how can the greater DOC support this movement?

JC:  Share use cases – how would you make it better, how could it make your life better? YMDV, and no system will meet all needs all the time, but we can try – the beauty of a crowd-sourced tools like this -someone else probably wants what you want, and if you’re alone, there’s still someone more than willing to help make it happen for you.

The DOC can spread the word, and help build the community. Together we can show the device makers what products we really want – if a group of 1,500 can get some attention – the stronger our voice, the better. It’s hard to find better motivated people than the DOC – what we do to keep ourselves, a child, a spouse, a friend, (and so on) happy and healthy comes from a place of great love. I suspect our best ideas, our biggest innovations come from the heart, and not a desire to make money.

Thank you, John, and to learn more about CGM in the Cloud, visit the Facebook group. 1909 members … and counting. More about this group from group admin and D-Mom Laurie Schwartz tomorrow!

Friends for Life: Madcap Recap.

A bulleted list because that’s what bloggers do.

  • My personal schedule had me running around like a chicken with its head (and pancreas?) cut off, and while I felt really lucky to be so busy, I didn’t have enough quality time with people I love.  It’s a nice problem to have, but it was frustrating because now that I’m home, I wish there had been long coffee chats with so many different people.
  • Coffee tastes best out of my new favorite mug –>
  • One of my favorite moments was during the Parenting with Type 1 Diabetes session, when Marissa Town and Melissa Lee started singing the Dexcom “ATTENTIVE” low alarm song, complete with facial grimaces and in perfect harmony.
  • It’s weird how therapeutic it can be to cry in a room full of “strangers.”
  • Even odder still is putting the word “strangers” into quotation marks because anyone living with diabetes has intimate knowledge of moments in my life that even my closest family members can’t quite wrap their head around.
  • It was so nice to meet the team from Kedz Covers, and yet so odd to meet them in Florida, seeing as how they live here in Rhode Island.  Only in the diabetes community do you meet your actual neighbors at a conference 1300 miles from home.
  • (And yes, that’s the “Don’t Mess with Rhode Island, Either” t-shirt, but I negated its awesome message by wearing my bag cross-body style, covering the little Rhody and making it look like I’m on the welcoming committee for Texas.  Whoops.)
  • The “Reducing Social Stigma from Diabetes: A Patient Perspective” session with Richard Wood, Kelly Close, and Adam Brown was one that I wish I had been able to attend, because the stigma related to (and nestled around) diabetes of all kinds is a topic that is very top-of-mind for me.  I’m looking forward to seeing and hearing more about this survey and have been stalking the #dstigma hashtag for feedback.
  • Watching Melissa pass the diaversary torch (so to speak) to Briley in the bar at midnight was a moment that made me laugh, but also gave me goosebumps because marking a diaversary can be intense, but doing it a room full of people who love you is fucking empowering.
  • It was an absolute honor (and wicked fun!) to partner with Dexcom last week, sharing stories and giving away copies of Balancing Diabetes. A huge thank you to Dexcom for their support, and also to the diabetes community for stopping by to say hello at the booth.
  • And thanks to Scott for lending me a pen to use at the book signings, which just so happened to be a pen from George’s office, making me feel like a little bit of George was at Friends for Life, too.  Full circle, there.
  • I loved being part of a session for parents of children with diabetes aiming to answer the questions they might not be asking their own kids, and it was an honor to partner with Adam Brown (of Close Concerns) for this session.  The discussions were intense, but productive, and for anyone in attendance who didn’t end up watching The LEGO Movie that night, here’s a link to what the hell I was talking about.
  • I learned that Scott, aka “Pockets,” keeps an army of diabetes (and non-diabetes related) supplies in his pocket.  The man is half kangaroo.
  • (Happy belated birthday, Pettus!)
  • After Friends for Life was over, Chris and Birdzone flew down to Florida to meet me and we spent a few days at Disney.  Getting ready to head out to the park the next morning, Chris asked why I still had my conference bracelet on.  “I like it,” was my response, because it’s hard to articulate what the green bracelet really means to me, or how the orange bracelets keep me going.
  • I still have my green bracelet on.  We walked through the Magic Kingdom and I found myself glancing at wrists around the park to see if anyone from the conference was there.  I didn’t see any green bracelets.  But I kept mine on in case someone was looking, too.
  • I still have it on now, only I don’t think the cats give a shit.
  • (Total sidebar:  It was Loopy‘s birthday two days ago, and Birdy and I will be making her a “cake,” which equals out to Birdy wanting to eat cake and this is her excuse.)
  • Attending Friends for Life is a place where I can wear my emotions on my sleeve and my pump on my hip.  It’s somewhere I can feel safe admitting the things that weigh heavily on my mind but also celebrate something as simple as a 100 mg/dL on my glucose meter.  And nothing reminded me of this more than when I was walking towards my next session and I saw Briley outside of it, tears streaming down her face.  “I just had my eyes checked.  And they’re totally fine!!  After twenty-five years, they are still fine.”  I couldn’t hug her fast enough, or hard enough, because that’s what you do.  You celebrate the things others would never think to celebrate, and you appreciate the people who understand.

 

Ante Up.

During one of the discussion groups at Friends for Life, one of the attendees took a look at their Dexcom, gave it an exasperated sigh, and threw it into the middle of the room in frustration.

“I don’t want it near me.”

There was a brief pause.

“Ante up,” someone quietly said, their own Dexcom case hitting the floor alongside the first.

And within a matter of seconds, a diverse pile of diabetes devices met in the middle of the floor in solidarity.

This is Friends for Life.

Guest Post: It’s All Happening.

Most of the time, I make sure I know two phrases whenever I’m traveling abroad – “I have type 1 diabetes,” and “Where is the bathroom?” – because … because.  Diabetes might require more planning ahead when it comes to travel, but it can be done, and Sarah from Coffee & Insulin is proving that with every stamp in her passport.  Thanks for guest posting about diabetes and international travel today, Sarah!

*   *   *

Leaving for my 10-month study abroad trip in Europe, I lugged my carry-on through the airport, stuffed to the gills with test strips, insulin, pen needles, syringes, glucose tablets, batteries, glucagon, and an extra glucose meter. I handed the flight attendant my one-way ticket to Marseille, France and boarded the plane, cradling a year’s worth of diabetes supplies in my arms.

The day before, I’d put 3 small slips of paper in my wallet. They read J’ai le diabète, Tengo diabetes, and Ich habe Diabetes. “I have diabetes” in French, Spanish, and German. (I actually have diabetes in every language, but my wallet is only so big, you know?) I had copies of every prescription folded in my bag. I had travel notes from my endocrinologist. At 21 years old, this would be my third time traveling to Europe. I was beginning to get the hang of the whole “international travel with diabetes” thing, which is certainly an adventure of its own.

I made it to France without a hitch, but my travels abroad didn’t stop there. Over the course of the next 10 months, I visited 11 countries. I went by train, plane, bus, bike, and foot. With each trip, I became a stronger traveler. I became more knowledgeable and more confident. My packing list was an art form. I kept a smaller, pre-packed bag of all the diabetes supplies I would need for a trip, so I could just grab it and stuff it into my backpack. I learned how my blood sugars reacted to hiking hills and winding through narrow cobblestone streets for hours. I learned how much I needed to bolus for a French pain au chocolat… but more importantly, I learned how incredibly delicious a freshly baked French pain au chocolat tastes. I learned and learned and learned about the workings of the world and the workings of myself simultaneously.

While in the Netherlands for a few days, I met a fellow type 1. We were staying at the same hostel, and after spotting her insulin pump, I introduced myself.

Her name was Anna, and she was an American backpacking through Europe for a few weeks with three friends. We became instant friends because of that great, invisible diabetic bond, and we swapped stories on the role diabetes plays in our travels.

Smiling, we acknowledged that any concern, fear, and doubt didn’t manage to stop either of us. Now being on the other side of the pond, being the travelers, knowing the risks and rewards, we thought, how could it?

Just as we made room for diabetes in our daily lives, we made room for diabetes in our travels and more literally, in our suitcases. Once, I wore the same pair of pants for a week so I could fit another jar of glucose tablets and my extra glucose meter into my backpack. And you know what? It was great. Who needs two pairs of pants when you’re busy paddle boating in Prague with an eased mind, knowing you have all the supplies you need?

We laughed (as that is all we can really do) at the awkward moments: when the language barrier was too strong to explain why I had a syringe in my pocket, or trying to find the translation for the word carbohydrates on foreign food packaging. (FYI: In Greek, it is υδατάνθρακες. You can remember that, right?)

We agreed that we’d both hit some bumps in the road. Traveling can be rough. It can be unpredictable. Even if we show up at the airport 3 hours early, the plane might be delayed. Even if we write clearly and legibly and have all the necessary tags on our luggage, it might get lost. And as we know, diabetes can also be unpredictable. Even if we count every carb, bolus precisely, go to the endocrinologist every three months, check our blood sugar 18 times a day- high blood sugar will happen. Low blood sugar will happen. And beautiful, rainbow skied 100mg/dl will happen. It’s all happening.


It’s super cheesy and super true to say that bumps in the road are part of the best adventures, and as long as we are aware and prepared for our needs as diabetics, everything will be okay. I’m not saying everything will be seamless. Our luggage might still get lost (which is why I never put diabetes supplies/medicine in a checked bag!) and our blood sugar might go high because of French baguettes and Italian pizza, but when it boils down to it, we’re stronger than the ups and downs and highs and lows. We’re brave and cool and we’re not going to let diabetes-related fear limit our adventures.

We’ve totally got this.

“If anyone can handle a bump in the road,” Anna laughed when I showed her my backpack full of glucose tablets, “it’s definitely us.”

*    *   *

Sarah is a recent college graduate, writer and literature nerd, expert coffee drinker, and type 1 diabetic of 9 years. She currently lives in Virginia, but is moving to Europe in the fall! New to the diabetes online community (and amazed by its support and kindness), she hopes to become further involved and continue to connect with other inspiring individuals living with diabetes.  You can read more of her adventures with type one diabetes and world travel on her blog, Coffee & Insulin.

Tamagotchi Diabetes.

Remember the little Tamagotchi pets that were creepy/trendy 20 years ago?  (Yes, that was 20 years ago.  I’ll wait while you pluck out the gray hairs.)  As much as I wanted to not give a shit about that weird little egg, I did.  I wanted to press the buttons and feed it, pet it, care for it, and when the little X’s over the eyes popped up because I killed it, I felt like a crumb because I failed at doing the simple tasks required to keep it alive.

So much of the public perception of life with diabetes is that it runs Tamagotchi-style, a simple matter of pushing the right buttons and following the formula.  But diabetes doesn’t always run within the rules.  If there’s one thing I’ve learned during the last few decades with diabetes, it’s to always hope – hard – for the best but to be prepared for the inevitable hiccups.

Not in a “woe” sort of way, but more like avoiding the “whoa.”

Like this past weekend, when Chris and I took Birdzone to Maine for a few days.  It makes absolutely zero sense to me that a three hour drive would produce lingering low blood sugars, but playing on the beach would give rise (literally) to my Dexcom graph.  Eating the same breakfast two days in a row produced wildly different post-prandial numbers, despite similar fasting blood sugars and insulin doses.  Nothing went foul (fowl, in keeping with the digital chicken theme?) because I was pressed the buttons, fed it, petted it, cared for it, but it was paying it mind instead of “set it and forget it” that kept me between the lines.

“You just take your insulin and avoid sugar, yes?”

Run around and collect things, with the main requirement for success being to stick to the task list?  Dude, I wish.

Gone Offline!

After too much time away from my family, I need to keep this laptop lid slammed shut for a few days.  See you next week!

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