Partner Follies: My Wife on Good and Bad of Diabetes Data-Sharing

It's been seven months since I started using CGM in the Cloud, and had my Dexcom G4 connected to the Nightscout setup.

Much has changed since then, with some important D-tech upgrades that have helped the system evolve and get easier to use. It's been great seeing all of this ground-level #WeAreNotWaiting work rapidly transforming our landscape of choices. Of course, adults using these CGM in the Cloud tools can run into some interesting issues as they get weaved into our personal lives.

This brings a whole new spin to the periodic "Partner Follies" series at the 'Mine, where we feature guest posts by spouses and loved ones. And today we're excited to share a story from none other my own wife, Suzi, about her perspective on the CGM in the Cloud experience so far. As she says, it's not always about the data...

(And since wives are never wrong, I insist my editing has been kept to a minimum here.)

A Guest Post by Suzi Hoskins

It all started with a phone call.

“Hello, Mr. Hoskins, this is Chandler Leonard. I’m calling because we are seeing some high blood sugars coming from your location.”

The confused voice on the other end of the phone was oddly at a loss for words. That was my husband Mike, and he just didn’t know how to respond to this “Chandler Leonard” person he didn’t know.

 “Umm...  I’m sorry. Who is this?!”  Mike asked.

“This is Chandler Leonard, calling because of those higher blood sugars -- I wondered if you had an explanation.”

Within seconds, this “Chandler Leonard” started laughing and revealed who he really was – a coworker of mine, who was calling as a joke after seeing my new Pebble watch that displayed real-time diabetes data from Mike’s Dexcom G4 CGM.

That fun phone call came about seven months ago, right after we hooked up to Nightscout for CGM data-sharing. It’s been an interesting ride we’ve shared together since that start.

Most of the time it’s been smooth sailing and without any big disagreements, but there have been some moments where the data-sharing wasn’t all that.

The whole point was to allow me to could keep on top of his blood sugars when he’s traveling, since he tends to go Low when away from home. That’s actually led to some hotel calls in the middle of the night, which can be dramatic, since I can be annoying at 3 a.m. when I really want to get ahold of you. :)

(I think the front desk hotel clerks would agree.)

When he’s not on the road, we’re not that far apart since I only work a few minutes from our house. That has helped a number of times when Mike seemed to be going Low, since my boss is very understanding and sometimes I can just leave work and head home to make sure everything is OK.

Yes, the CGM in the Cloud has brought me some peace of mind, being able to just look right down at my wrist and see what his blood sugars are doing.

At first, the big challenge was finding the right setup and equipment – like the needed cables and carrying case. I have acute Purple-colored Pebble watch, while Mike has a boring steel-faced one… But of course he’s also the one who has to wear and carry the rest of the Rig around, so I guess it’s really up to him if he'd prefer it to stand out less.

After a few months, the biggest issue became the cable connections. The cables were so fragile and really didn’t stay connected between the uploader phone and Dexcom receiver very well. It got to the point where Mike couldn’t even look at the Rig without it losing the connection. So for all practical purposes, our setup sometimes became unusable for critical travel experiences.

Then in April, Mike was able to get the newest Dexcom SHARE receiver with built-in Blutooth, and this got him excited about CGM in the Cloud once again. He’s been using this new setup and is totally excited about it. Why? No cables to deal with!!  No cables = no extra case to carry around, no ports to break, and an all-around better use of this solution for us.

He’s now able to just carry the small Android uploader phone in his pocket, connect it via Bluetooth to the Dexcom SHARE receiver that he wears on his waist, and then have the data streamed to our Pebbles watches.

He had to upload a new app on his Android phone to use with this setup, and it’s called xDrip. I honestly know nothing about this, so I must be a bad wife. :(  As Mike explains it: This is basically the bridge between the Bluetooth SHARE receiver and the uploader phone, and it sends all the data up to the cloud where it gets processed, and then relayed back down to us for easy viewing on our Pebble watches. Magic!

That’s the system we used when he visited Michigan over Mother’s Day weekend, and had a string of High and Low blood sugars. And that’s where we got into our first disagrement about data-sharing.

He thought I was just being annoying, like the “diabetes police,” asking about his blood sugar readings. But I wasn’t, because that’s not me. I was just concerned. He was Low and the arrow was pointing downward, and it didn’t move after some time. Plus, I hadn’t talked to him in awhile. So, I was checking in to see if everything was OK and whether he knew what was going on.

Apparently, after we exchanged a few messages, the arrow and Low reading still weren't changing and I asked if the CGM sensor was working correctly. Apparently, that was the final straw and my constant checks became too annoying for Mike. He sent me a text: “That’s it, I’m turning off Nightscout.”

You can imagine how the rest of that conversation went. 

There was another example not long afterward, when we were at home and Mike had some very high blood sugars. He was struggling for most of the day with those, and then (not surprisingly) after enjoying “flat bread pizza night,” his BGs showed no sign of budging or trending downward.

I could tell he was frustrated, but still I made a comment: “Why so High?”

That set him off, again threatening to disconnect from Nightscout or cut off my access to the CGM data.

Again, we had a long off-the-record conversation about communicating with each other and navigating this world of CGM in the Cloud data. In fact, we have talked about this quite a bit, and Mike says sometimes it feels like I’m nagging him or peering over his shoulder about blood sugars. That’s not something we want to be the norm, so we try to have an open dialogue and keep the conversation going all the time. We made some realizations:

1. Just because I’m asking about blood sugars or trends, it doesn’t mean I’m policing. Just concerned.
2. If I notice a High or Low number, or even a trend arrow pointing up or down, I should not be too quick to ask about them. It’s taken me some time to figure out that Dexcom has a lag time, even after Mike’s already taken care of the issue.
3. When possible, it's great if Mike can text or call to let me know that a hovering Low has already been taken care of and he’s sucked down candy or juice, and that the CGM just hasn’t caught up yet. That helps us stay on top of our reactions to this. Especially during the recent ADA conference in Boston, when he was constantly going Low because of all the walking and little food. So, that helped us make sure he was both safe, and I was not “policing.”
4. Sometimes, we just don’t need to be connected to CGM in the Cloud. We talk about that, and figure it out as needed. Moods change, so maybe Mike is just more burned out and doesn’t want all that data staring him in the face. Or maybe he’s just at a point where he doesn’t want to be talking about D-data all the time. So we make sure that it’s clear between us when and how we are using Nightscout from a mutually-agreeable place.

At the same time, we don’t want this diabetes stuff to dominate all our conversations. So it’s a balancing act.

This is something all couples and probably families need to deal with when navigating this new world of streaming diabetes data. Technology only goes so far, but in the end it’s really about communicating with those important people in your life. We're partners in this game, so working together and sharing our feelings about all of this is so very important.

I don’t want to be the mysterious “Chandler Leonard” voice on the other end of the phone, pestering him to explain his blood sugars.

I’d rather be the voice on the phone asking: “What are you making me for dinner?” :)

 

Thanks for writing this, Suz! I am very glad we both have this extra peace of mind, especially when I'm traveling. Even though it can make things a bit tense at times, I'm glad we have access to this kind of tech and we're able to use it effectively in our life together. Love you! 

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Originally published at DiabetesMine on June 5, 2015.