The Hypo That Changed My Mind About CGM in the Cloud
Even with all my excitement about diabetes data-sharing and the very cool CGM in the Cloud hacking project, I've not been convinced this is the time for me personally to embrace that technology.
In other words: in these times of #WeAreNotWaiting, it had pretty much been in the mindset that I Am Waiting and not signing on to this data-frenzy myself just yet.
That is, until one day very recently when a severe hypo kicked me in the gut and changed my whole outlook on this. That experience pushed me over the edge in deciding that I am going to move forward with CGM in the Cloud.
Yes, I think I'm going to jump into this cloud-universe, even though I still have concerns and don't know how long it will take me to get 100% up and running.
CGM in the Cloud, For Dummies?
Before I dig into the low that changed everything, let me explain that when I first started following all the chatter about this so-called Nightscout project this summer, I hardly understood the basics of what it even was. Huh? A smartphone connected by mini-cables to your Dexcom G4 continuous glucose monitor receiver, in order to transmit that CGM data to a cloud server and then to whatever display device you want -- whether it's a smartphone, tablet, web browser, or smartwatch for easy D-data viewing? That all sounded complicated and expensive -- because yes, there's a cost for all of those items including Internet connection so the data can be shared seamlessly.
So even though I 100% support these data-sharing options -- without any hesitation or doubt -- I just wasn't convinced that for an adult type 1 like me, it was really worth the fuss right now to set up, and may even be more of a burden than a benefit.
Don't get me wrong: I'm thrilled to see so many Do-It-Yourselfers innovating on their own and creating new options for those of us who want to use them -- especially parents, who need better ways to keep their T1 children safe.
It's just that I thought, well... some of us don't mind waiting.
Because setting up Nightscout at home, as this D-Log Cabin post so eloquently explains is "really not quite as simple as buying a Pebble watch from Best Buy and downloading a CGM app that sends data to the watch... Not to mention it isn't cheap. So, this setup... comes in stages."
She goes on to explain all the pieces you need to buy, and: "You have to cart around a phone-CGM setup, which can be incredibly bulky. Your Pebble is kind of married to the iPhone, which is why that has to stay on (although you can see it on any other phone... this is the most convenient way for a parent/SO to see the data.)"
Gotcha, it takes some skill. Time and energy required. OK, so be it.
Yes, there's a whole Facebook community of 6,400+ people who are always willing to answer questions. But hey, I'm the type of guy who doesn't like to connect a new printer or DVR player, and sometimes gets stressed out by things like installing a new iPad app or computer program. So looking through the CGM in the Cloud guides made my brain hurt.
I was worried that I was just tempted to "jump on the bandwagon" because it's a cool, shiny new tool that's all the rage at the moment, but that I might quickly drift back into D-slacking mode and it wouldn't do any good. That's the balance I was struggling with -- is it really worth spending the time, energy, and money to get this fancy data-hacking tool set up? Or do I have enough going on already with my tools on hand?
My Concerns & Motivators
Ironically, I invested a good bit of time outlining my Pro's and Con's. In part, I made note of the reasoning some CGM in the Cloud users have stated as to why they use it, and then added my response to each.
- Easier to Look At? Lots of folks sing the praises of being able to see your data instantly with a quick glance at the wrist, or even at a smartphone or tablet or computer screen rather than a Dexcom G4 receiver. Well, this is not a big deal to me. Seriously, I don't mind glancing at my G4 receiver that's typically clipped to my belt in its flip-open case or sitting nearby on my home-office desk.
- Data Fatigue: Furthermore, if my data were on a Pebble watch, I fear that I'd become obsessed with glancing at my wrist and wasting more time than I need to on diabetes. And at some point, I'd start experiencing serious data fatigue and would be even less motivated to improve my D-habits.
- No Thanks, for My Wife: We already talk about my blood sugars as often as we need or want to. She has an open invitation to check out my CGM and meter whenever, because honestly that kind of spot-checking keeps me accountable. And I invite it, except in those moments when I'm really tired of being hassled and questioned about my blood sugars. #ItMakesSenseIfYouHaveDiabetes
- On the Job: Related to the above, I work from home, and rarely travel without my wife. So I just set my G4 receiver on the desk most days. Even thinking back to when I did work in a company office, I don't believe looking at my receiver on my desk would be a problem there either, so do I really need more?
- Sci-Fi or Reality? OK... this one may seem somewhat off-the-wall crazy to some, but it is seriously in the back of my mind: Terminator and Judgement Day. Movies in which the machines basically used cyberspace to hack into everything and eventually take over and wipe out the human race. Along those lines, it makes me a bit nervous to trust all my info to "the cloud." I am by no means a Doomsday Prepper, yet I like the comfort of knowing that I can simply unplug and get off the grid if I ever want to. Or you know, more realistically: I travel to the middle of nowhere and lose all Wifi or cell data access and the rug is pulled out from under my CGM in the Cloud.
- Better Understanding and Communication: We all know how complicated the multi-colored spaghetti charts and graphs can be, and how looking at little dots squeezed together can be nearly impossible to decipher. OK, so if this tech can provide clearer insight into your glucose trends or a better way to talk about blood sugars with someone else in your life, then that's a big draw for me. Like D-peep Melissa Lee has written, having that second screen for better insight as a way to better understand what my data is telling me... that could be huge!
- Accountability: This is worth repeating -- I get lazy with my diabetes quite a bit and having the additional accountability of seeing my CGM data all over the place (our big screen TV?) might help me focus more and want to stay more on top of my D-Management.
- Amazing Personal Security. D-parents like to monitor their kiddos from afar, whether it be at school, a sleepover, during a sporting event, or if the child is outside playing or napping in another room of the house. Makes perfect sense. Some adult PWDs point to this reason, too -- those who live alone and are worried about going Low and some married D-peeps who have those same fears and want their partners to see their data, whether they're traveling or in the next room. Or maybe we adult PWDs might sleep through the Low alerts on a pump or CGM, or maybe we're hypo unaware. So in perfect contradiction to what I listed as a Con above, having this access could indeed help my wife keep me safe. And when I think about that, it becomes the biggest reason for my interest in this tech.
So you can see that if you weight the items on relative life-impact and brush aside my irrational Sci-Fi fears, I was pretty evenly split for and against.
The Hypo That Changed My World
Now, to get to the point: I had a BAD hypo last week that made my final Pro bullet point stand out above all others.
On Wednesday morning, I dipped into the 40s right after my wife Suzi left for work, and even though I saw the CGM data, it didn't register with my hypo-brain and I ignored it. To the point of laying down and falling asleep, causing me to plummet even lower and continue to ignore my low alerts for more than an hour! I missed a dentist appointment thanks to that Low, but thankfully I was lucky enough to catch a stray thought of cohesiveness long enough to figure out what was needed and treat my low.
If Suzi had known what was going on from afar (or the few miles away at her office), there would've been a way to catch this. After drinking my weight in orange juice and going through the post-hypo hangover, I began to feel strongly that CGM in the Cloud is something I need to get on board with... sooner rather than later!!
And then, the next day as I was driving home from a meeting about an hour away, Suzi and I were playing phone tag and she suddenly sent me a text message asking, "Are you OK?!" This made me think that if we'd been using CGM in the Cloud, she wouldn't have had to ask and worry that I was lying in a ditch somewhere due to a hypo... We'd have another level of security, and that's well worth it.
Looking to the Future
The reality is that I've been pretty impressed by all the clever hacking skills in the D-Community, from those using Pebble watches (see DIYPS) to offer us better alerts to those who've even rigged their house alarms, TV screens, and bedroom lights to flash or change colors in case of an alert -- which you just can't ignore. Now, if only someone comes up with an electro-shock collar to nudge me even more.... I'd be all over that!
Of course, all of this CGM in the Cloud stuff is a stop-gap to future solutions, like the Dexcom Share that should be FDA approved soon to basically do what Nightscout already is. And perhaps best of all, this past week JDRF announced its support of Tidepool's development of a "Universal Device Uploader" that will allow us patients to access, view and share our data from any pump or CGM anywhere, without being locked into the proprietary software offered by the vendor.
There is a lot to look forward to, and it makes me want to get in at this ground floor so I'll be ready when these future innovations are ready for prime time.
And that right there is what I think ties it all up for me. The future potential for actual seeing all my data, from any device, all in one place, is exactly what I want. In the meantime, will Suzi and I spend the roughly $300 required to get Nightscout set up how we want, so she can wear a white Pebble watch at work to see what's happening with my #BGnow at all times?
Yes, I think we are persuaded to stop waiting and go for it.
#IAmNotWaiting... for another severe hypo, one that could take a scary turn and end badly.