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Dexcom SHARE: First Impressions.

“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.

And by way of notification, I’m disclosing right here and now that I have a relationship with Dexcom.  It’s kind of serious, and I look forward to when they meet my dad.  Details here.

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.

 

The Friday Six: Sea Serpent of Doom.

I’m not going to complain about the weather.  Nope.  Not even a little bit, because eventually it will be so balls hot that the sidewalks melt and crumble into an oatmealish texture, so I am going to be quiet about the fact that we STILL HAVE THE HEAT ON and it’s mid-April.

It’s time for some link-sharing, because there’s lots of curious bits and pieces to read.

Sixty-three years with type 1 diabetes.

Charlie Kimball and his continuous glucose monitor make the news again.

Is being a night owl bad for your health?  (I hope not.)

I really like this Instagram account:  Beyond Type 1.

Adam Brown issues ten diet commandments for better diabetes management.

What are your plans for July?  If you haven’t attended the Children with Diabetes Friends for Life conference, this year would be a great year to get to know your extended diabetes family for the first time.  Or to reconnect.  Either way, your heart will thank you for it, even if your pancreas is still too lazy to even get out of bed.

In pursuit of closing the loop.

DHF Joins Diabetes Advocacy Alliance.

diaTribe takes a look at the Diabetes UnConference.

This stupid fucking headline made me want to throw my computer.  The JDRF UK’s response on Facebook was awesome, though.

Patrick Peterson discloses that he’s diabetic.”  Yes, I had to cut-and-paste that headline because I know zero about anything related to football.

Dexcom® Introduces Apps That Enable the First Ever Continuous Glucose Monitoring (CGM) on the Apple Watch”  Well hot damn, Dexcom!

I had no idea the Brontosaurus was ever up for debate.

And last week, I did one of those “drink wine and paint something while carefully supervised” sorts of events.  It was fun.  I’ve never painted anything before (other than the walls of our house and a birdhouse one time), and I followed most of the instructions. Until I got bored.

We did a paint-and-drink-wine thing, with careful instructions from a local artist. I followed most of the directions.

A photo posted by Kerri Sparling (@sixuntilme) on

Happy weekend!!

Slackadaisical.

Self-tracking isn’t limited to the number of steps I take in a day or mapping out the data of my blood sugar trends. In my life, tracking emotional health is important, as it influences my physical health. Yeah, even if I try to pretend it doesn’t.

Gripper socks are those socks that have the little bits of plastic on the bottom, designed to keep you from slipping and falling on your face. They help you gain your footing when you need it most.

Playing that metaphor out from a diabetes perspective, there are some things I do to keep from doing a horrible faceplant into apathy (which leads to less-than-optimal diabetes management, for me). Kind of like gripper socks for self-management, giving me traction instead of sending me into a free-fall of slackadaisical not-giving-a-shit.

This video is about recognizing my own apathy signs and signals and making attempts to wrangle them back under control.

Gripper socks!

Potent Potion.

Turns out I’m not unique in experiencing the dreaded “Dexcom rash.”  (Which sucks for anyone else who gets the major sensor scratchies, but at the same time, the diabetes community is innovative as eff.  We work around the workarounds.)

When it comes to dealing with my own Dexcom rash, wearing the Toughpad underneath my sensor helps a ton, but it doesn’t remove the reaction entirely.  Which means that after a seven days, I will peel off a sensor to find a raised, slightly irritated area underneath.  (And that patch of skin usually gets worse the next day, particularly after showering or if I’m in recycled air like in an airplane.)

After talking about the rash with my endocrinologist, I asked her for some recommendations for lotions to use after the fact, when I need to soothe my skin post-sensor removal.  She said that Amlactin was something that she’s used in the winter when hand-washing causes rotten skin, and suggested I give it a go.

So I did.

Magical rash healing powers.

A photo posted by Kerri Sparling (@sixuntilme) on

And it works better than I had expected.  It’s not the best smelling stuff (kind of like a stick of butter mixed with stale toothpaste and a dash of freezer burn), and it sometimes makes my skin feel hot for a few seconds after application, but if I slather this stuff on my sensor-irritated skin, it helps so much.  Rashes that took a week to properly mend were fine after two days, and the rapid-healing helped keep the curb appeal of my skin real estate intact.

There you go.  A post about a lotion that helps deal with Dexcom rashes.  No, it’s not sponsored.  Yes, it’s kind of boring.  But this shit works for me.  And it might work for you.  So go forth and slather.

Here’s a flying cat, just in case you wanted one:

Green Beanery.

Winter started around November of last year and continued onward with a vengeance until yesterday morning, when “42 degrees and sunny” seemed to constitute as “spring.”  The snow is all but melted (except for a few very stubborn igloos built by resourceful squirrels), so Birdy and I took advantage of the sunshine yesterday to explore our backyard.

We moved house several months ago, just before the winter came crashing in, so we don’t know much about what’s actually outside.  For all we knew, there was a hole that went straight through to Renza’s house.  We did know that there was a shed with a fenced in garden-looking area, and my hope was that it would be useable for a vegetable garden.

So yesterday, my daughter and I went out with our rakes, clippers, and yard refuse bags to find out what was underneath all the pine needles.  After a bit of raking and cleaning up, we saw that the garden was decently set up for planting.

“Good thing!  Because we have all those green beans, Mom!”

Oh hell yes we have green beans.

A few weeks ago, she and I took a crack at starting some seedlings in the house, preparing for the eventual moment when Jack Frost would loosen his grip on New England and we could plant our starter garden outside.  We bought one of those seedling trays from Home Depot and with steady preschool hands, my kid planted seed after seed from packets she picked out at the store.  (I didn’t want to stifle her excitement, so we are growing all kinds of stuff – green beans, cucumbers, eggplant, watermelon, carrots, and a woman from the ground.  It’s a festival of greenery.)

Now, several weeks later, the seedlings are starting to sprout.  We moved them to bigger pots so they could become more badass, and in a week or two, we’ll move them outside into the garden.

I’ve always wanted to have a vegetable garden, but needed a partner to help me tend the feeble crop.  (Chris is not a gardener.  He mows the lawn, rakes the leaves, and deals with any snakes/spiders/chupacabra we might stumble upon in the yard, but he’s not into weeding.)  After watching my kid diligently don her gardening gloves and rake, weed, and create impromptu shelters for any worm we came across, I realized I have my vegetable gardening partner now.

Here’s hoping I can go from seed to plate without screwing it up.  But so far, we’re having fun,

 

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