CGM Data: Around the World and Back Again – to my Pebble Watch

After attending the DiabetesMine Innovation Summit last November and being inspired by the Nightscout crew (and pretty much everyone else there as well!), I finally decided to take the time to set up a Nightscout website. I’ve had it up and running since Dec 2014. Being an adult with Type 1, I monitor my own blood glucose levels. I don’t have anyone that would be interested in following my data on a daily (much less hourly) basis, so I wasn’t sure if the functionality of Nightscout would be worth it for me. After 8 months, I can say with certainty that it has been…and then some!!!

I don’t actually use my NightPebbleWatchscout website or phone app very much but I LOVE wearing my real-time data on my Pebble watch. I’m probably 1000 times more likely to glance at my watch to check on my blood sugar than I am to dig in my purse (through all the snacks and toddler/kid gear) and haul out my Dex receiver or my phone. The setup to get my data to my watch was somewhat complicated but with the addition of the Dexcom G4 receiver in May, my data is almost 100% constant without much involvement from me other than occasionally restarting a few apps on my iPhone.

Last week, however, it suddenly quit working and I got emails written in what may as well have been a foreign language, saying things like “your Heroku app on free dynos needs to recharge.” I’m pretty techno-savvy and am generally an early adopter of new technology but I’m not a programmer and certainly don’t fully understand all of the ins and outs for each step I followed in the pipeline to ultimately setup Nightscout. Going back through them to figure out which accounts I used in my setup needed changes and what else it might affect wasn’t quite like starting at the beginning for me…but it was close.

There are so many different ways to setup Nightscout, including what hardware you’re using, what service providers you chose, what account parameters you chose with some of those service providers, etc., that it’s not an easy task for me to filter through the Nightscout setup guides and Facebook group looking for clues related to updating each piece of the specific pipeline that I selected to use. So, after I finished getting my data stream to my Pebble working again (took me about 3 hours), I decided to make a little diagram to help me understand how all the pieces I’m using fit together. Disclaimer: I’m pretty sure I have my pipeline figured out correctly but wouldn’t bet my house on it : )


My hope is that next time I need to make a change, I’ll be able to get it corrected more quickly…and with a little less terror! My current pipeline configuration prior to last week was free and now, with the required changes, looks like it will cost me $14/month, but it works for me and I wouldn’t trade it for the world.

MeandKidsI can no longer imagine not having my data on my Pebble. I feel so much safer. EVERY time I’m with my kids at the park, or the market, or driving in the car, and I glance at my Pebble, I’m thankful. Quite simply: I want to be the best mom I can be; I want to stick around to watch my kids grow up…and Nightscout helps me do that.

Big House : Small CGM Transmitter Range

So, we finally moved into our new house about a month ago. One of the strangest diabetes-related things I’ve had to get used to is the size and shape of my new house when it comes to my CGM signal. The Dexcom G4 is supposed to be in range as long as the receiver and transmitter are within 20 feet from each other. Our old house was kind of a 50s bungalow, where I could set my receiver in a central location and still have my signal picked up all over the house. Only our master bathroom stretched the range, so showering was the only time I had to remember to pick up my receiver and take it with me. Our new house is bigger and also more spread out. When we first moved in and I was unpacking, I missed hours of data at a time (and I missed a lot of lows and highs).

Caller-ID Big House:Small CGM Transmitter RangeI’ve really had to get adjusted to carrying my receiver with me from room to room in the house. It has turned into a bit of a ball-and-chain but my thinking is if I’m not going to have the receiver collecting a signal 99.9% of the time, then what’s the point of wearing this additional, ugly (yet not inexpensive!) hunk of plastic on my belly all the time, right? I’d love to take a vacation from my CGM occasionally but for me diabetes devices are like the original Caller ID box (remember those days?!) once you have it, you really can’t ever go back to being without it.  I hope to look back at my tummy devices and signal ranges one day just like I look back at the Caller ID box now and say “Wow, can you believe I used to use one of those things all the time? And I thought it was so high-tech!”

Just a Little Girl and her Mommy…and Mommy’s Diabetes Accessories

Ruby's-AccessoriesLittle girls do love their accessories and mine has an eagle eye for detail.  Here, my daughter Ruby has on her cool Reef flip-flops, a white snap bracelet with cherries, blue mirror shades, a pink and green striped raccoon tail, and a multicolored hair wrap with hot pink feathers on the end.

Needless to say, when I changed up my diabetes supply cases this weekend, she was quick to notice.  “Mommy I like your new gold case with the white case better than the old silver case with the green case.  And I like the pink case too.”  Hmmm, that’s a lot of cases. She’s grown up knowing it’s “Mommy’s diabetes stuff” but we haven’t ever talked about which case is for what.

New-Diabetes-CasesMy husband and I explained that the white case was a “skin” case for Mommy’s OmniPod, the gold case was Mommy’s diabetes kit and the pink case was for Mommy’s CGM, which stands for Continuous Glucose Monitor.  “Rubes, do you know what continuous means?”


“It means all the time and Glucose means sugar.  Do you know what monitor means?”


“Monitor means watcher.  So, the pink case is Mommy’s all the time sugar watcher.”

Ruby grinned and chimed in with “And your bracelet is your sleep watcher!”

Oh, yeah, that’s right…there’s also the Fitbit Flex I wear, which tracks activity and sleep. Little girls…they don’t miss an “accessory” beat!

Big Diabetes Data Requires Big Analyses

If you’re anything like me, you’re currently clocking data on your CGM, your insulin pump, your BG meter, and any other number of devices including mobile apps for diabetes, fitness, or menstrual cycle, and wearable fitness devices like Fitbit.

It’s easy to look at one post-meal high and make a judgment call.  But it’s really hard to look at months worth of data and try to pull out patterns to really improve overall BGs and health.  Websites that integrate with my OmniPod and CGM (and are Mac compatible…don’t get me started on this…Gah!) only have the capability to really track BG and carb counts well.  But we all know it’s the type of carbs, not the number of carbs that really matters.  Also, was I especially active on a particular day?  Stressed from a big meeting at work?  Having PMS?  So many variables to consider!

big diabetes dataSince I already have all the BG and insulin data on my pump, meter, and CGM, (that I’ve laboriously collected!) I literally fantasize about just uploading those items to a single program online and then using apps of my choice to input details about my other “life variables,” such as food, exercise and activities, moods, monthly cycle, etc…..and finally (here’s the kicker) have the apps sync their data with the existing pump/meter/CGM data online in the same program!  Perfect!  Easy!  Right?  No way!

As you’re probably well aware, most of our diabetes meters, pumps, and CGMs have proprietary software and/or limited relationships with other diabetes-device companies.  So, based on who manufactured our devices, we’re all pretty much limited to one or two platforms for viewing the data…and those options sadly don’t integrate with apps we’re using to track our food, fitness, etc.

My current work-a-round solution for viewing OmniPod and CGM data (on a Mac) is Diasend, however even here you need a Clinic ID# (or to register as a non-US citizen) or your CGM tab will be grayed out.  I also use the mySugr app for logging (btw…I love mySugar), Google Cal for my monthly cycle and HRT, and just started tracking activity and sleep with a Fitbit Flex.  I make it work but it’s still me piecing together data from four different locations.

fitbit open apiFortunately (and just in the nick of time if you ask me) the US is at the beginning of a wave of personalized, data-centric healthcare, sometimes called the Quantified Self.  A lot of new data collection platforms designed for non-PWDs (like Fitbit and Lose It!) are using open APIs, which means they share and can integrate data.  After years of finding work-a-rounds and “making do” I feel like the current big data trend in healthcare is finally going to make my fantasy a realty…in the very near future.  So, everyone put down your proprietary diabetes devices for a second and raise your glass!  Here’s to hoping!

Super interested in the Quantified-Self movement like me?  Here are a few really cool recent articles:

Will An App A Day Keep The Doctor Away? The Coming Health Revolution (Forbes)

Solving America’s Big Health Care Challenges With Big Data (Huffington Post)

How Patient Generated Data Changes Healthcare (Information Week Healthcare)