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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.

*   *   *

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. 

OMG Nick Jonas … with a Sizeable Shout-Out to Dexcom.

I can’t hear the name “Nick Jonas” without immediately hearing the then-teenaged cousins in my family clutching their invisible pearls and screaming, “OMGNICKJONAS” as if it was one word. In my mind, I think of Nick Jonas as a kind and smart … not because I have any personal experience to base that assumption off of, but because he’s also living with type 1 diabetes and I tend to be somewhat (read: entirely) biased towards people hosting broken pancreases.

Nick was diagnosed with type 1 diabetes about ten years ago and has recently joined Dexcom as a Dexcom Warrior.  He’s been talking with members of the media about his new partnership and how CGM has changed the way he manages his diabetes, and somehow I managed to sneak in as a member of media.  I missed the scheduled call with OMGNICKJONAS but his team was kind enough to carve out some time one-on-one while Nick was traveling.  (And, for the record, this whole phone call took place with my daughter skipping by my office door, a giant inflatable stegosaurus being kicked around like a soccer ball.  Such media.)

Kerri:  You’ve been part of the diabetes community for ten years now, and have been an advocate for this disease almost since your diagnosis, right? Can you talk a little bit about what made you want to go public with your diabetes, and how that’s influenced how you feel about it?

Nick Jonas:  I went public with my diabetes story six months after my diagnosis. The thing for me was about being as open and transparent as I could be to find support.  I didn’t know any other diabetics.  By sharing my story, I wanted to seek out and encourage people that this can be okay.

Kerri:  So upon diagnosis you weren’t immediately greeted with stories about people’s Great Aunt Ethel who was mostly dead?

Nick Jonas:  (Laughs.)  No.  Soon after diagnosis, I actually befriended a nurse whose son was a diabetic. For my mom and I both it was nice to have someone to talk with who had a better understanding of diabetes. People try not to overwhelm you with all of the information, but this friendship helped.  I was encouraged.

Kerri:  I’ve been wearing a Dexcom CGM system since 2006 and the data is incredible to see. How about you – has CGM technology influenced the way you manage your diabetes?

Nick Jonas:  It’s one of those things that, for me, I feel like I have a best friend looking out for me. Which is the best thing. I manage my diabetes kind of by myself.  I’m kind of personal about it.  I like to have control over it, and I’m independent. With my CGM, I know what’s coming, and that makes thing so much more simple.

Kerri:  Do you know the high and low alarms from the receiver by heart?

Nick Jonas:  I do. (Laughs.) I’ve been totally in range for the last few days, though, so I haven’t heard the alarms in a while. One of the directors on KINGDOM, Michael Morris, is also on the Dexcom and we are always comparing our numbers.

Kerri:  When I travel for work, I make use of the Share application for Dexcom so that my family can keep an eyeball on me. What are your thoughts on being able to SHARE data, and do you SHARE?

Nick Jonas:  It depends on the situation. I don’t like my mom to be stressed about my diabetes so I don’t share with her, but my brother has looked in. We were recently in Las Vegas and when we woke up the next day, he knocked on my door and said that he received an alarm, and that I had been a little bit low.

Kerri:  That’s like the ultimate “big brother” moment.  So for those moments when you do SHARE, are there ground rules for the people who can see your data?  Like “Don’t ever call me when I’m high, but call when I’m low” sort of thing?

Nick Jonas:  Yes, we set those rules.  Don’t stress if it’s a number like 200 mg/dL, but if I’m below 60 mg/dL you can call me.

Kerri:  You’ve mentioned the perspective gained from life with type 1 diabetes. How has that perspective shaped you as an artist?

Nick Jonas:  It comes down to responsibility. At an early age, I had to learn to live with a disease and how it affects how I live my life.  I don’t want the things I’m able to do or not do be dictated by diabetes.  It’s not perfect; days can be unpredictable. But at 22, almost 23 years old, I’m aware of what kind of a person I want to be as a result of diabetes.

There’s always a way to see something in a positive light. You’ll live a miserable life if everything that’s challenging is a disappointment.

Kerri:  I’m glad you brought up the idea of perfection, because whether you want to be or not, you’re in the “role model” position in the diabetes community. How do you feel about having people looking to you for inspiration, diabetes-wise, and how do you stay inspired yourself?

Nick Jonas:  I think it’s a two-way street. In moments when I’ve had tough days and needed a pickup, someone mentions that their child or friend has diabetes and that my story helped them.  Hearing that keeps me doing what I’m doing.

Kerri:  And you feel like you can be honest about the good and bad days with diabetes?

Nick Jonas:  Yes, definitely. In the past, I’ve been hyper-insecure about admitting that I had really tough days because I want to stay positive. But without a doubt, anyone that lives with diabetes has tough days.

Kerri:  I appreciate all of your honesty about diabetes.  But diabetes can’t be the only thing we talk about.  People want to know the life that diabetes is a part of, right?  Like what bands are on your playlists these days?

Nick Jonas:  Right now?  I just made a playlist on Spotify, actually.  I’m listening to a band called Purity Ring, this song by Melanie Martinez called Pity Party, and this song by Haim.

Kerri:  Did you know that one of the girls in Haim has type 1?

Nick Jonas:  Yeah, actually.  My brother met those girls at Coachella and told me that one of them was diabetic.  That was pretty cool.

Kerri:  Did that make you like their band more?

Nick Jonas:  I definitely liked them already, but finding that out didn’t hurt.

Thanks to Nick for candidly talking shop, and to Dexcom for supplying media photos that make me feel slightly uncomfortable for posting, but I’m going to do it in the name of science.  For more information on Dexcom, you can visit their website.  And for my personal Dexcom disclosures, you can read my disclosure page.

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.

Pump Peelz Giveaway Winners!

Time for the Pump Peelz Giveaway winners!  The original contest rules are from earlier this week are here, and the entries came in through blog post comments and Twitter. Some were poignant, some were silly, and all were written by people touched by diabetes.


Ahem … here we go.

All were so awesome
Random number thing picked three.
These are the winners:

It’s midnight again
Sugar monsters sucking life
Double-stuffs for win!

- Susan C.

Diagnosed last year
The only thing he can’t do
Is make insulin

- Maria Conroy


Winners!  I’ll be connecting you with Scott from Pump Peelz to receive your prizes, and for those who didn’t win, you can still use the “SixUntilMe” discount code at Pump Peelz for 15% off your order. Thanks for playing, and thank you so much to the team at Pump Peelz!!!

Does Not Compute.

“Do you guys have any fun plans for the summer?”

The question was simple enough, but not even close to a level my hypoglycemia-addled brain could handle.  I had trouble formulating a response, and the lag time was embarrassing.  We’ve only moved to the neighborhood a few months ago and haven’t solidified relationships with our neighbors yet, so being wickedly low in front of someone new wasn’t my favorite way to disclose my diabetes.

Thankfully, a disclosure had already happened, to a certain extent.  When she had asked me about my work travel this past week and what I did for work, I said that I worked in patient advocacy and that I’d had diabetes since I was a kid.  She nodded in recognition and shared that her college roommate was also T1D, so my disclosure was pleasantly subtle and streamlined.  No big deal.  What I hadn’t anticipated was going low during the course of our conversation.

And I was low.  Wickedly low.  The kind of low that made my face feel like it was full of Novocaine and that my hands were like birds at my sides, twitching and flapping absently.

I scanned the trees in the front yard for some kind of hint.

“Pssssst.  You guys!  You, trees!  Do I have fun plans for the summer?  HELP!”

They only waved their leaves at me.  “We have no idea!  Go get something to eat, dummy!”

“We go to Maine.  MAINE.”  I said it twice with way too much emphasis on the second one, an angry seal barking out their summer plans.  My neighbor didn’t seem to notice that my eyes weren’t able to focus on her, and I’m fairly certain she didn’t hear my Dexcom receiver hollering at me from the front steps of the house.  But I knew that another minute or two was the chasm between attempted conversation and calling for medical help, so I had to embrace the awkward.

“I’m so sorry; I know I mentioned that I have diabetes and you said your college roommate also had diabetes.  So I’m really, really low at the moment and I need to go inside to grab some juice.  Would you excuse me for a minute?”  I was trying to be polite and not let on that my thoughts were knocking around in my head like socks in a dryer.  She nodded and I took off for the kitchen, where I downed a glass of grape juice as quickly as I could.  My CGM only told me I was “LOW” and I cursed myself for not responding faster to the beeping.

Coming back outside, we stepped back into conversation without much pause, watching our kids play in the front yard.

“Sorry about that,” I said.  “No problem at all,” she warmly responded, not missing a beat.

And I kept an eye on my CGM graph, watching my blood sugars rise and kindly deposit thoughts back into my head.

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