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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.


Clouding on the Road.

The CGM in the Cloud concept matters most to me when I’m traveling alone.  While I was in Orlando last week, my bedside table looked like this at night:

A Moto G hooked up to my Dexcom G4, sending CGM data to the cloud.

And that data being routed to my family back in Rhode Island and to my wristwatch.

A few questions I heard from people throughout the conference:

“What peace of mind does it give you that the CGM itself doesn’t?”

I slept better with this thing rigged up.  It’s a clumsy set-up (all those cables and wires and plugged-in-ports) but the ends justify the means.  Chris could see my data while I was sleeping, and his system would alert him to any wicked overnight hypos, should they occur.  That’s some good peace of mind for me when I’m a plane ride away from my support system.  While my overnights are usually unnervingly spot-on (nailing down my overnight basal has been the luckiest break ever, and I blame my in-range A1C on spending those 6+ sleeping hours in-target), low blood sugars still creep in and can cause chaos.  I liked being hooked up while I was sleeping.

“Why wear it connected throughout the day?”

It was more convenient than I thought to have the graph running on a watch.  I didn’t realize how often I go digging through my bag for my Dexcom receiver until I spent a few days not doing that.  I like the seamless flick of the wrist and the “Hey, that’s my number,” and moving one sentiment.  But, to be honest, I think I kept it hooked up during the day partly because I knew people would have questions/want to see the rig and I wanted to be able to show them. Nothing answers questions better than seeing the system “in the wild.”

“Why don’t you wear it all the time?”

What made it less convenient to keep the system “clouding” on this trip is that I haven’t purchased a data plan for the Android phone yet, and have been running it off of open wifi signals (the hotel, convention center, restaurants, etc).  That’s a definite hurdle, and since the system is most important for me to run while I’m sleeping during travel (or home while Chris is traveling), using wifi seems to work best for my needs.  It’s simple to connect/disconnect from the cloud system as I need to.  I’m also hesitant to tax the USB port on my Dexcom receiver because I don’t have a spare receiver and I also don’t want to break the device I have come to rely on.

“Do you really want your family seeing your numbers all the time?  What about your privacy?”

Really good question.  This is why I’m looking forward to the Dexcom Share application, because that app will allow me to revoke access to my data if I choose.  As it stands now, my CGM data is clouded to a site that I have shared with my husband and my mother, and if I’m hooked up to the CGM in the Cloud system, they have access to my data.  It’s not a password-protected application.  I would love to see the data protected by some kind of password system.  I appreciate the option to share the data for my safety, but not for their scrutiny.  However, when it comes to the overnights while I’m traveling, I don’t care who sees those numbers.  Their having access makes me feel less vulnerable, and I’m willing to sacrifice my data privacy for those 6+ hours.

Clouding CGM data is a work-in-progress.  Much like life with diabetes.




The No Good (Sort of Good) Food Diary.

It was easy to avoid food logging because, on the whole, my blood sugars aren’t a disaster.  I bolus for the foods I’m eating, and I don’t graze much so stacking insulin doses isn’t as much of a problem as it has been in the past.  But the other night, when 9 pm rolled around and I was asking Birdy for the fifth time why she isn’t ever tired ever, I realized I’d had six cups of coffee that day.  Technically, it may have been seven cups of coffee, because one of them was an iced coffee and those don’t follow any rational serving size.  And I couldn’t remember if I had eaten more than a handful of almonds as a snack earlier in the day, and did I end up actually sharing a doughnut with Birdy at the coffee shop, and I know I had a wrap sandwich at some point but some grapes ended up in the mix somewhere and where the hell did that glass of wine come from??

My schedule throughout the day doesn’t afford for much consistency.  Each day is pretty different from the previous one, and sticking with a set schedule is challenging on the days when I’m both working and playing with Birdzone.  Not that it can’t be done, but it isn’t usually done.  I’m becoming more scatterbrained as time goes on, to the point where I am actively forcing myself to take certain actions in order to reclaim and make sense of my days.

Which is why I decided to start logging food for a week or two, because it’s clear that I have absolutely no frigging idea what’s actually happening each day.  (I’m using MyFitnessPal for the time being, until it frustrates me and I revert back to keeping a list in my bottomless basin of a purse.)

I don’t like it, though.  It’s a level of accountability I don’t joyously embrace.  (“YAY!!  Writing down everything I’m eating?  So that I’m now tracking blood sugars and exercise AND food intake so that I can feel both powerfully informed and terribly guilty about every single choice I’m making all day long?  OH YAY!!!”)  I don’t like having to be honest and log that, yes, I ate chicken and green beans for dinner but yes, I also went berserk and had a big, fat slice of banana bread for no reason.  I don’t like looking at the food log and noting that less-than-healthy food choices really toss the calorie count for the day up into the air and then out the window.  I don’t like logging anything (read: blood sugars), and keeping a food diary is no exception to my pre-established log loathing.

But … big, reluctant sigh … it’s useful.  (bah.)

After only a day of logging foods, I realized that my coffee intake is abysmal.  Way too much.  Blood sugars don’t seem to care, but the caffeine influx makes for trouble sleeping, and I’m in no position to sacrifice sleep.  After three days of logging foods, I realized that my willpower and organizational skills are top notch in the morning and afternoon, but around 7 pm at night, I lose control over what I’m thinking/doing/eating and I consume most of my unneeded calories at night.  And while I don’t like writing down every healthy (and otherwise) decision I make during the day, the food diary does hold me accountable for my actions.

Fine. I’ll curmudgeonly accept that logging foods for a week or two is useful.

I’m already looking forward to stopping the food logging in a few days, but I know it’s a good way to realign my brain, and my schedule … and my stomach. I have already seen for myself that there are choices I can improve and decisions I can pat myself on the back for. And it’s confirmed, officially, that I drink way too much effing coffee.

Guest Post: How the MiniMed 530G Changed My Diabetes Management (Without Ever Even Seeing it in Person)

SUM is being borrowed today by Christopher Angell, fellow PWD and creator of GlucoLift, so that he can share his thoughts on the Minimed 530G … without having ever seen or used the system.  What is he on about?  Find out …

*   *   *

Leading up to the launch of the Medtronic 530G (and what a long lead-up it was) I kept asking myself “What’s the big deal?” It seemed like, apart from a new sensor (which some data had already shown to be a minimal improvement over their previous sensor, and a far cry from the already-extant Dexcom G4 Platinum) the only real innovation was the introduction of the low glucose suspend (LGS) feature, which shuts off insulin delivery after a series of alarms alerting the user about low blood sugar are ignored. “How useful could that possibly be?” I wondered.

We’re constantly told that, because of the action curve of our rapid acting insulins, changes in pump basal delivery should be calculated for events 30-60 minutes in the future. So how does shutting off my basal drip help me if I’m crashing NOW?

Still, my curiosity got the better of me.

Now, I don’t use a Medtronic pump (Tandem t:slim), or a Medtronic CGM (Dexcom G4), and I don’t even get all of my basal insulin from my pump (my current split is about 57% from my pump and 43% from a single bedtime Lantus injection). So my experience is probably in no way directly comparable to what someone using the Medtronic system would experience. Nonetheless, I started experimenting with what I’ll call MLGS (manual low glucose suspend). I didn’t use it for all of my lows, but there are a couple situations where I’ve found it to be rather useful.

The first is where my bolus and my food may be correctly matched, but are out of step. For example, say I bolused for a meal that’s mostly protein, fat, and some slower carbs, like a steak with sides of spinach and broccoli. Then after the meal, I notice a slow dip on my Dexcom, but I KNOW that once the meal starts digesting, there will be plenty of food to give the insulin I have on board something to do.

Previously, I would have eaten one or two proactive glucose tablets to keep the insulin busy while the steak and veggies get over their stage fright. Now, I’ll just unhook my pump, or set a temp rate of 0 units for 15-30 minutes. And as long as I didn’t way over-bolus, that dip tends to reverse on its own, and I’ve managed to avoid unwanted, unnecessary carbs (delicious though they may be). This is especially useful if I’ve eaten a late dinner, and don’t notice the dip until after I’ve brushed my teeth. I can still get into bed, unhook, and read until I see the CGM line flatten out, then hook back up, without re-fouling my pristine pearly whites.

The other situation where I find myself implementing MLGS is with my serious, all-hands-on-deck lows. You know, the ones where every second spared from their depths means less of a hangover, and more of my day returned to my control. There are two caveats to using MLGS with this type of low. The first is that, since I’m not at my most functional when these lows hit, I’m more likely to use the “unhook the pump” method than the “very responsibly set a temp rate” method. This means that it’s very important to remember to re-attach my pump after I turn the corner on the low. The second is that since disconnecting, even for a little while, leaves me more vulnerable to a rebound high, I always treat these lows with glucose tablets, as opposed to my fridge-clearing binges of yore. I know when I’ve eaten enough glucose to right the ship, but I have to be disciplined enough to trust it and not pile another 50g of future disaster carbs on top.

When I do those two things successfully, my bad lows feel less bad, and I seem to recover from them faster. Can I measure/prove this? No. Do I care? Not really. If it feels to me like it’s working, and I believe it’s an improvement, then it kind of is, even without hard data to verify or explain it.

So even though I’ve never used the new Medtronic MiniMed 530G, or even seen one in person (as far as I know), it has nonetheless made a positive contribution to my diabetes management toolkit, which, when you think about it, is pretty impressive.

*   *   *

Christopher Angell is the founder of GlucoLift glucose tabs (I have a stash of them in my cabinet, and they are so much better than your average glucose tab) and a good friend, diagnosed with type 1 diabetes at the age of 30.  He’s contributed here before, exploring the t:slim insulin pump and both travel and dental woes.  For more from Chris, you can check out the GlucoLift company blog.  To taste test GlucoLift glucose tabs for yourself, you can purchase them from their online store, or write to for samples.  Tell ’em Loopy sent you.

Endless Lows.

I do not know what makes them stick like this, the lows that creep in and stay creepy for hours at a time.

“Is this thing serious?” I asked.  Then I’d prick my finger to confirm that, indeed the Dexcom was serious, and I was in fact still low.

There are times when high blood sugars are stubborn and refuse to come down, even when I rage bolus and exercise.  But I can tolerate a sticky high because, even though it’s not comfortable, I can still function properly-ish.

The endless lows, though, work me over in a way that’s entirely different.  Last night, I came home from the gym with a downward drop in my Dexcom, and it lasted for two and a half hours.  Which meant that, for two and a half hours, I had a combination of numb lips/tongue, shaky hands, mental fogginess, and that urge to cry without reason.  I had to constantly tell my daughter, “I just need a few more minutes, because my blood sugar is low.”  I was thankful that Chris was home to help me negotiate parenting stuff/reminding me to eat something else.

What makes this happen?  How can I chomp down ten glucose tabs and a banana and some applesauce over the course of three hours and barely see a blood sugar budge?  It took over a 150 carbs to make a dent (And that dent peaked up to 200 and then promptly fell again.  What the eff?).

“What are you now?” Chris asked before bed.

“202.  And I’m fine with that,” I replied with finally-not-numb-lips-and-a-shirt-collar-dusted-with-glucose-tabs.


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