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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.

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.

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!!!

Pump Peelz Giveaway!

I’ve been a fan of Pump Peelz for several years, impressed by both their products and their back story.  The company, founded in 2011 by high school sweethearts turned married couple Scott and Emily, aims to “help people with diabetes live with more confidence by turning insecurities associated with diabetic accessories into a form of individual self-expression.”

Can’t argue with that, as the team at Pump Peelz is helping shift our one-size fits all, sometime very drab diabetes devices into personalized and fashionable conversation pieces.  (Because wouldn’t you rather be asked where you got your Dexcom sticker than “Hey, what’s your blood sugar?”)

The Pump Peelz team has offered some skinz as a giveaway here on Six Until Me, which I am very excited about because the cost to enter is minimal, but fun.  Here are the details:

To enter this giveaway, you need to create a diabetes-related haiku (a poem with three lines, the first containing five syllables, the second line containing seven syllables, and the third line back to five syllables) and share it in the comments section or on Twitter (make sure you tag me with @sixuntilme in your Tweet).  Winners will be chosen from a hat by my kid (because I’m low-tech, but trust me, we have a cool hat) and will receive a prize pack from the kind people at Pump Peelz.

I love adding a little flair to the sometimes mind-numbing plainness of diabetes technology.  Here are a few examples of the work they do at Pump Peelz:

For the Dexcom G4 receiver

A skin for your Omnipod

 

And if you’re a Pebble watch user, they’ll throw in one a decorative skin for your Pebble, too!

Once the three winners are selected, I’ll announce those here on SUM on Thursday morning.  The contest is open starting today and will close tomorrow night at midnight EST.  The winners will connect with Scott for their peelz, and for anyone who doesn’t happen to win, 15% off is available to readers using the coupon code “SixUntilMe”.

For more information on the company, you can check out their website or “like” them on Facebook.  (Is it required to put like into quotation marks?”)  And if you’re interested in winning some peelz of your own, be sure to enter the giveaway.  Huge thanks to Pump Peelz for making this giveaway possible, and I am excited to meet them in person at Friends for Life in a few weeks.

Poems don’t have to rhyme.
But if you count syllables,
You might win fun shit.

Reboot.

Diabetes and I are not getting along these days.  Not even a little bit.

Funny how that shit happens.  You’re rolling along [insert lilting "do de doooo" tune here] and then BAM Dexcom graphs start to get weird and BAM other health concerns start issuing commands that dominate the conversation and BAM all of a sudden, my blood sugars are absolute garbage and I need to reboot my whole system.

So okay, fine.  I’ll reboot my system.  Only it’s having trouble rebooting because of a few hard-to-change-at-the-moment things.  Like a demanding travel schedule for work.  And some meds that are gaffing up my blood sugar numbers all on their own.  And my unparalleled ability to instantly be distracted.  These aren’t excuses, but they are reasons, and these reasons are keeping me from rebooting entirely.  Instead, I’m temporarily stuck in that spinning pinwheel of rainbow doom that my old laptop was stuck in, going around and around in an attempt to reboot but ends up being a “press the power button until the whole thing powers down” moment.

(Yes, I also cannot stop staring at that thing while it spins.  It pulls me in.  Siren song of Mac doom.)

I’m aware of a lot of my shortcomings, though, and I recognize that a full reboot isn’t going to help.  I am not a “change everything all at once” sort of diabetes repair woman.  I’m more of a “change one thing, then change something else” type, leaving me with a breadcrumb trail of good decisions that eventually brings me back to better blood sugar control.  It’s a mixed metaphor that has yet to involve Hansel (he’s so hot right now, so I should get on that), but in time, I can wiggle these glucose numbers back into a better groove.

This time, I know it’s my response time to data that needs the most attention.  I have to be checking my glucose more regularly (and not simply in the morning, before bed, and whenever the CGM needs to be calibrated) and responding to the data I collect ASAP.  (Calling it “data” helps keep me from feeling like those numbers are little pockets of judgement and self-worth assessments.)  High?  Correct it.  Low?  Don’t over-treat it.  In range?  Do a happy dance in the kitchen because hot damn.  But the bottom line is PAY ATTENTION.

Complaining about this crap helps, but working to fix the parts I’m complaining about helps more.  This was my whine.  Now it’s time to work.

 

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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