“Your thing is going off.”
Though nondescript, that phrase is a loaded one. It is Chris-speak for, “Your Dexcom is making an alarm of some kind; you need to take a look at it.” And now that the Dexcom SHARE application is feeding my glucose results to my husband and a few other authorized viewers, when the thing goes off, other things go off and people are notified.
I’ve been using the Share for a few weeks, and have had some time to give it a good once-over. My take on the SHARE 2 application itself:
- Overall, my data transmits pretty seamlessly from the receiver to the phone, but there have been weird times when the data just stops. (When I’m on a plane, this makes sense. When I’m at my kitchen table, it does not.)
- Essentially, that means I am poking this fine little fella in the face several times a week, to help jump start whatever is borked in transmission. If he were less cute, I wouldn’t feel so bad about jamming my index finger into his jaw.
- It feels weird to have to put my password into the app in order to access the “followers” screen. Why protect that specific screen, but not the others?
- I thought having the option to only add five followers would feel limiting, but in fact, the ability to share my CGM data has not made me want to broadcast my stuff to the world. Five followers is fine so far; right now, I have my husband, a close friend, a doctor-who-is-not-my-doctor-but-we-are-trying-something-out-for-the-sake-of-SCIENCE, and myself. And yes, I have added myself because I wanted to be able to access my data alongside the data of those who I am following when I go into the Follow app.
- (Does any of that make sense? Let me know if it does not.)
- Also, iOS only? Frustrating because anyone who is not using an iOS device can’t be added to my network.
- The alarms that are issued through the phone are wicked loud, and very useful. I recommended that Chris keep my high alarms off and only receive notifications for hypoglycemia, which is working out reasonably well. (Especially when I am traveling, and can respond to his, “Eat something,” texts with a quick, “Already did.”)
- The application doesn’t seem to eat up my battery life on my phone or on my receiver, which I appreciate. I feel like the Share receiver holds battery life better than my previous receiver. I charge it once a week and even then, it’s not drained.
- I forget that the application is on and working because 85% of the time, it’s on and working. I rarely switch it off because it doesn’t impact my battery life (or actual life) much to keep it on. Except when it becomes emotionally charged, which is a whole different point and one I tackle a bit further down.
- Using the receiver that’s Bluetooth enabled versus the dock you had to plug into the wall is obviously an upgrade, and contributes to ease of use. Also, it’s easier to pack. And harder to forget.
And my take on sharing, in general, with this application:
- Sharing data is personal. Wicked personal. And it’s a choice, one I’m grateful I can make. Again, I can’t rework my islet cells, but I can decide what devices and treatments I use to manage this disease.
- And sharing makes me feel a little ashamed, at times. I can reason as to why it should NOT, but it’s a reasoning I find difficult to follow through on. Keeping my blood sugar data devoid of emotional valuation is difficult for me. I was raised on “good” and “bad” blood sugars, not “in range” and “out of range,” and seeing a graph that pings and pongs all over the place makes me feel weird emotionally as well as physically.
- For example, two weeks ago I had a urinary tract infection (much like this epic one). It was nasty, and both the infection and the antibiotics for it sent my blood sugars into the stratosphere. This glucose saturation was sent up to the cloud and pinged out to the people I trust. None of them knew I had an infection, but I felt the need to say something about said infection so they’d understand why my numbers had gone bananas. I felt good about having people I trusted so much that I knew they wouldn’t judge me, but at the exact same time, I felt the need to explain myself. My knee jerk response of justification kind of flies in the face of the security and trust. And it’s not because of them or how they judge me, but because of me and how I judge me.
- Same goes for the following week, when I was on another medication (everything is fine, by the way – just a flurry of things all at once) that caused wicked blood sugar spikes. We’re talking HIGH with arrows still pointing up. I took a bolus that put every other bolus I’ve ever taken to shame. And after a few hours, I mentioned this medication to those with access to my data because I felt the need to explain the numbers.
- Which opens up my “what the fuck” mental folder, where emotional responses to diabetes end up filed. On the one hand, I really like having a loved one or two able to see my data because that their access offers up a safety net I’m very grateful for (and have written about several times). Also on that hand is the accountability that works to my benefit. As I told my friend who has access to my CGM data, the commiseration angle is empowering because it makes me want to rein things in faster than if I was the only one looking. Blood sugars on display are ones I watch more carefully, for whatever reason.
- But on the other hand is my desire to turn off the data sharing because I want to let my blood sugars stutter and splutter without scrutiny. I want to fail, or do what I perceive as failing, in private. Sometimes I want to leave the Sharing option on only throughout the nighttime hours, or exclusively when I’m traveling, so I can keep a foothold on my dignity. Not that my numbers are shit all the time, but the past two weeks have been tough even for me to see, and I’m familiar with my own bounce. (And there I go again, explaining away the things that make me feel ashamed. This is part of the fuckery, because my management does not come easily to me, and I try every single day to work these blood sugars out. I test and exercise and track and eat well and truly make efforts and yet blood sugars bounce. I can blame diabetes, but since the due diligence list is so long, there’s always something I can look at and blame myself for. Which is a fun dance.)
- Have I mentioned that sharing data is personal? Let’s go back to that for a second, because it is. And the level of sharing that works for me on days when my blood sugar is 94 mg/dL and holding steady is very different than when I’m riding out a 287 mg/dL for three hours.
I’ve made no secret of the fact that I appreciate options, and the option to Share is one I’m happy to have. Coming full circle, I can choose to share or not share. I can also turn off accessibility to others with the click of a button. Honestly, I am grateful that I have a network of people I trust with this kind of personal data because it’s some soul-baring kind of shit. And as an adult, I can decide how these data are dealt with because they are mine.
Maybe, with time, I’ll stop viewing these data as little dots of validation and instead as information to help me live better.