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Posts from the ‘Robot Life’ Category

Guest Post: Does Diabetes Tech Assist or Insist?

Several years ago, I “met” DCScribe (who remains mostly anonymous) on Twitter and he and I did not see eye-to-eye on much, aside from sharing the diagnosis of type 1 diabetes.  For a while, the lack of common ground frustrated me because I identify with and bond over experiences, but then I realized the alternative viewpoints he provided were not only important but essential to my growth as an advocate.  It is good for me to hear perspectives outside of my comfort zone; they help keep me realistic.  And when I had the chance to sit down and have lunch with DCScribe several months ago, it was really nice to confirm that two people who might butt heads constantly can still share a mutual respect … and a lunch table.

He was diagnosed with type 1 diabetes at 8 months and has lived with T1 for more than 50 years. Over the course of his career as a journalist, he has worked as a reporter in Washington for 26 years covering the White House and Congress as well as conflicts overseas, hurricanes including Andrew and Katrina, and every presidential election since 1988.  He’s recently embarked on a new career in global health that will take him to the frontlines in the battle against Ebola, malaria, AIDs and other scourges around the world.

And today, DCScribe is taking a turn here at Six Until Me to talk about diabetes technology as something that assists or insists.  Read on for more.

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The older I get the more I’m struck by how the decisions I make in so many facets of life are deeply informed and influenced by my long career refereeing soccer at the highest levels.  It’s even shaped my relationship with diabetes technology. And yeah, I can hear the rumbling. “Holy hell. Where’s this going? That dude ought to check his ‘sugar.’”

But it does. And here’s why. Reffing has helped me understand the difference between someone (or something) who “assists” and someone (or something) who “insists.”

It’s a question every diabetic should ask when making a decision about the technology you need (and don’t), how to use it and whether it means being in control or under control. Understanding where that line falls and enforcing it is central to my D management and my easy, stress-free life with the disease.

I speak only for myself, of course, and concede there might be gaps in my perspective. After all, only two other people outside my wife and kids and my doctor knows of my condition and my identity. My wife knows I use a pump but doesn’t know the brand or really how it works. I never share my BGs with anyone, though I’ll offer vague updates at home such as, “I’m gonna wait a bit to eat dinner.” It works for me; I’ve never had a single bad day from diabetes in more than 50 years. Sure, some days are better than others but not one has been truly bad or difficult.

There are lots of reasons, but an important one is my comfortable but always skeptical relationship with technology.

I have no idea if I’m different in that respect. But from scanning the Diabetes Online Community twitter feed and beyond, I wonder if enough people asking the question about technology’s proper place and power. (Here’s one place where it was asked and discussed publicly. It’s a cautionary tale and luckily I can’t ever imagine finding myself in a similar place.)

At the same time, I’m not immune from the pull of technology. I use a pump and have for 16 years (though my current pump is 7-years-old. Let’s face it: a pump is little more than a tricked-out syringe.) It’s why I got my first blood glucose meter in the 1970s and have used one ever since (though my one-and-only meter today is 9-years-old.) It’s why I’ve never used a continuous glucose monitor and never will. I’m constantly examining that distinction and that, along with my natural skepticism keeps me from chasing the latest, often imperfect, shiny object until its use and accuracy are proven.

This also fits with my belief that too much information can be more of a burden than a savior, especially if that information is imperfect. I wonder too if a fixation on technology diverts attention from proven and powerful “human factors.” For me, the basis of my success and easy life with D is rooted in discipline when it comes to food, making sure I’m physically fit and a refusal to ever use diabetes as an excuse for anything at any time.

Which brings me back to the beginning and “the pitch.”

In soccer, most games have three refs (though in a lot of my games there’s also a Fourth Official.) The Center Ref is the only one with a whistle. He or she prowls the entire field and is the one person responsible for fair play and safety; for keeping the official game clock and chaos to a manageable level. The Center Ref is the ultimate and singular authority. All decisions start and end with him or her.

The Center Ref uses his or her experience, training, knowledge and physical fitness to manage the game, navigate nuances and the many “gray areas” woven into the Laws of the Game and to ensure the rules are applied in a fair and consistent way.

But the Center isn’t alone. Along for the ride are two Assistant Referees, one on each sideline. Without ARs, the Center’s job is difficult if not impossible, especially on a regulation field that measures 120 yards by 80 yards.
The ref crew is a team in the truest sense, but to work well, everyone understands this: Good assistant referees never “insist.” Their job is to “assist.” That means there are times when the Center Ref will wave down a flag (or tell an AR through the headset) because the Center Ref is in a better position or has more experience or a different understanding of the larger picture.

Replace “AR” with “diabetes technology” and you get the idea.

That’s why I seldom follow the number my bolus “wizard” spits out. Its why, when my meter says I’m 70 mg/dL and I’m getting ready to ref a game that will require running upwards of seven miles and demand thousands of decisions, including a few that are game critical, I don’t hesitate. I appreciate my meter’s “assistance,” jam a granola bar in my mouth, wash down with a gulp of sports drink and go. But not always. Sometimes I simply walk on the field and start the game.

I seek assistance in carefully chosen places. That makes perfect sense to me. It doesn’t mean I’m anti-technology.

I’m a guy, so I’m hard-wired to get all tingly from even most dubious technological “innovation.” It should be no surprise that I would have instantly given up insulin before surrendering my satellite phone or the solar charger for my up-armored laptop when I was reporting overseas. In the early 1980s I had a very public and very serious relationship with my 30-pound Teleram “portable” computer that I happily lugged from one corner of the country to the next so I could transmit stories to the Mothership at the wondrous rate of 1,200 baud per minute.

And yet, I still use a 5-year-old iPhone and have zero urge to change because … it works.

Technology is great. I love it. I use it – a lot of it. But skepticism is more useful for me, as is enough patience to make sure the latest, greatest bit of technology works as advertised, and that whatever tech I use in my ride with diabetes knows its place, no matter how hyped or magical or shiny.

*   *   *

Thanks for your perspectives, DCScribe.  And for the link to the oldest computer ever. 

Diabetes Lifehack: Travel Tape.

Sometimes it’s an insulin pump infusion set that starts to peel back.  Other times it’s a Dexcom sensor that gives up on the edges and needs reinforcement.  And there are times when you just need a band-aid for one of those rogue blisters that pops up.

Which is why I keep little slips of Opsite Flexifix tape tucked into my wallet.  Because you never know when you might need an (opsite flexi)fix.

#diabeteslifehack

A photo posted by Kerri Sparling (@sixuntilme) on

(There you go, Opsite.  Your new tagline, perhaps?)

 

Untethered, After a Fashion.

Around 8.30 am, I took an injection of Levemir.

At about 9 am, I switched my basal profile to “OTHER” and disconnected my insulin pump.  The OTHER profile has me at 0.025U basal rate per hour (as close to zero as I can get on my pump) but still holds all my other settings.  I kept the pump in my purse and the infusion set attached to my body, with one of those pump caps (there are two that come with every box of Insets) to keep the site closed.

At 9.03 am, I put on a skirt with a loose waistband that had previously been tugged down by the weight of my insulin pump BUT NOT ON THIS DAY.

Throughout the day, my basal needs are served by the Levemir injection, but I reconnect the insulin pump to deliver my boluses (allowing me to take my meal boluses and correction doses with precision and also without piercing my skin another time because the infusion set is still in place).

Around 9 or 10 at night, my Levemir injection is pretty much toast (over the years, I’ve seen that Levemir leaves my system after 12 hours, so I usually split my dose completely on pump vacations), so I reconnect my insulin pump and spend the overnight connected, receiving the basal bump at 5 am that is delivered to combat the dawn phenomenon my body experiences.

And then, depending on what I’m doing the next day, I’ll decide to keep my pump on or off during the day.  The Levemir pen in my toothbrush holder serves as a reminder to take a morning dose, if that’s my jam.

I like having a choice.  Can’t un-choose diabetes, so having a choice as to how I deliver my insulin is a plus.

It sounds complicated, but it works for where I’m at right now, because I am aiming to make good on the whole “fit diabetes into life, not work life around diabetes.”  And as petty and superficial as it may sound, it made me bananas (read: super angry, not yellow and slippery) when I went to get dressed for the sticky, summer heat and didn’t have a good place to shove my pump.  On the waistband pulled my skirt down.  Between the cups of my bra made for weird lumps and also unnecessary warmth.

This kind of frustration is the shit that can send me into a week-long DBM (Diabetes Bad Mood) and I am trying to mitigate as much of that as possible.  So off came the pump.  On came the highly structured plan to untether in the most graceful way possible.

Keeping an eye on my CGM showed when things were working and when things need tweaking, and I felt at peace with my diabetes instead of Rage Against the Islets.  Which, while a solid band name, doesn’t do much for my emotional health.

Couched.

“Can I lay here?”  I pointed to the almost-available section of the couch, where if Chris moved his legs juuuuust a little bit and Siah got her fat furry butt off the cushion, I could curl up and let my brain go quiet after a full day of writing.

“Sure thing,” and Chris adjusted his body.

“No,” was the message Siah sent me with her cat telepathic powers, but I snuggled in anyway.

And in one, seamless movement, the couch cushion leapt up and grabbed the infusion set from my arm with its teeth and ripped it off.  The couch’s fangs were gigantic and its talons just as daunting, determined to keep any diabetes device from properly resting against my skin.  I was livid – this infusion set was only a day old! – but I knew I was no match for the couch.  It was huge, and it had an agenda of rage.

I eased away from the cushion slowly, trying to keep from agitating the angry beast.  The couch snarled and tensed, poised to make a play for my Dexcom sensor if I dared to get comfortable against its fabric again.

“You okay?”  Chris asked.

“Yeah.  The couch ripped off my infusion set,” I started to say, and then I felt the slow drag of couch claws against my shin, warning me to embrace silence.  “I mean, I ripped off my infusion set.  I did it.”

The couch quieted and settled back against the floor.  And I went upstairs into the bathroom to put a new infusion set on.  And when I came downstairs, I sat on the floor, the steady breath of the wicked couch prickling the hairs on the back on my neck.

“Next time …” it panted like Dr. Claw.  “Next time.”

 

Beach-Borg.

Yesterday, my daughter and I went to the beach (with my mom and my aunts and half of the state of Rhode Island) and I wore a bathing suit.  I also wore a CGM sensor on my thigh and an insulin pump infusion set on my arm, connecting to the insulin pump clipped to my bathing suit.

There were a few glances, but nothing too awkward.  (Except the older kid who was sitting on the steps heading up to the bathrooms who, after staring at my diabetes cyborg stuff, nudged his sister in the shoulder and said, “What’s wrong with her?”  To which I replied, “Plenty,” and kept walking because honestly, I had to pee.)  It always surprises me, though, that I’ve never seen another pump or sensor on the beach.  All these people who are supposedly living with type 1 diabetes – where the hell are they?

It reminded me of the lady who was so concerned about the cell phone she thought I was about to ruin at the beach … hey, there happens to be a video discussing that very topic right here!

I’m rarely self-conscious about diabetes, and thankfully I have a small child who doesn’t leave much room or time for me to be stressed out about beach-borging.  But I am reminded regularly throughout the summer that my tan lines are a little different from that of my insulin-producing counterparts.

(Yes, I’m ready for Friends for Life, where borgs are the norm.)

 

Robot Arms.

[You can read my Dexcom disclosures here.]

The low alarm slammed into my ears from across the bed, coming from my Dexcom receiver on the bedside table.  A half second later, it echoed from my cell phone, where the SHARE app threw out a loud warning of its own.

LOW.

I reached over and clicked on my phone, which was closer than my receiver, going to the app to look at my blood sugars.  I “follow” two PWD friends in addition to following my own data, so the screen showed three different profiles.  The two that weren’t me were fine – nothing to worry about.  They were perfectly safe.  Everyone was safe!

Everyone but me, because my data stream claimed “LOW.”  Somehow that number wasn’t registering in my head.  It wasn’t mine.  Clearly.  Wait, what’s happening?

I rolled over and went back to sleep, entering the fifteen minute cycle of hear beeps, respond to beeps by clicking a button, head back on pillow (drenched with sweat, but somehow the low still was recognized by my consciousness), repeat.  My daughter was asleep next to me (she had appeared in our room around 4 am) and for a split second, my brain wondered who belonged to the brown, curly ponytail spilling across the pillow.

And then all at once, the alarms made sense; their intention clicked firmly into place.  Their sounds reached across and tapped me on the shoulder, pushing me with frustration towards the juice.  I uncapped the little bottle and drained half of it, relief hitting the hypo-panicked parts of my mind.  It only took a few minutes to paddle back from confusion, and within minutes, I was fine.

Once I was downstairs in the kitchen, I checked my email on my phone while the coffee brewed.  I spun through the data on my SHARE app, seeing the long, red tail of the low that had wrapped around me for over an hour.  I felt frustrated by the fact that despite well-timed alarms, sometimes the lows themselves remove my ability to respond.

Some hypoglycemic moments are quieter and laced with a gentle fog of frustration, one that makes me reach for glucose tabs and forget how many I have already eaten but ha ha ha that’s okay, everything will be fine in a few minutes.  But the lows that come while I’m asleep and my body wakes up in the trenches of leave me entirely confused and oddly content to sit in a puddle of my own cold sweat, a bottle of juice within reach on the bedside table but my brain is too damn stupid to encourage my hand to reach over.

Eventually, science and technology will find a way to add two arms to my CGM receiver that, in the event of a low, will reach over and slap me, then hand me the bottle of juice.  Then those robo-arms will hand me a towel to wipe my forehead.  And once it’s over and done with, they’ll hug me quickly but firmly and tell me to suck it up because there’s shit to do.

Device Frustration.

Am I a crumb because I want to rip my devices off sometimes and throw them into a great, blue hole?  Like this one?  My skin is so irritated by the adhesives and intrusions of my insulin pump and my CGM that the desire to heave them into this abyss is intense.

the Great Blue Hole – I look at pictures of this thing all the time

I hate the bulk of them.  The amount of room that my devices take up on my body and the trauma they have a tendency to leave on my skin.  I simultaneously absolutely love the convenience of them.  The fact that I can take teeny, precise doses of insulin without using a magnifying glass on a syringe or when the alarm goes off in the middle of the night, alerting me to a 70 mg/dL that was sliding towards LOW … this is the stuff that makes wearing diabetes devices worth it for me.

The pros outweigh the cons by a long shot, but the cons are a thorn in my side these days.  Or, more accurately, a wicked itch on my skin.

I took my insulin pump off one morning because the site was so sore, and so red, and the mark it left on my body was like a little diabetes bullet wound.  I have a high threshold for irritation and itch, but this site was terrible and after pulling it out, I didn’t have anything even close to resembling the desire to put a new one back in.  I went on injections for 12 hours before realizing that being on the road wasn’t doing my blood sugars any favors (I was having trouble bringing myself back under 200 mg/dL – rage bolus, anyone?), so once my Levemir injection timed out, I reluctantly put a new pump site in.  Admittedly, blood sugar control for me these days is better on the pump.

It’s not just my pump sites that are irritating these days.  This morning, I noticed that my CGM site had become red, itchy, and irritated OUTSIDE OF THE TAPE.  What the actual fuck?  Usually, I have a skin response underneath where the sensor actually is, or where any of the tapes connect.  But this round, I have a proximity rash thanks probably to continuously compromised skin (linking to it here because it’s too gross to put on the blog).  So now I’m getting a frigging rash in the places where the sensor isn’t even touching?!  I’m in a hard place of feeling safer with access to CGM data but access to CGM data produces a fierce itch.

I need a breather.  But taking one leaves me exposed.  HEAVE this shit into the great blue hole!  That’s what I’m doing mentally, chucking all these things that make my skin hurt and itch into the watery hole and watching them sink to the bottom.

… but then diving in to rescue them.  Because I hate injections and I hate going to bed without seeing my CGM trend arrow.

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