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Spotty Service.

In the earlier part of this week, I was up in Ogunquit, Maine with Chris and Birdy, following through on our family obsession with Maine (“the way life should be!” claims the sign you drive by when you cross into the state, marking the moment when Chris usually points a finger at the sign and says, “YES.”).  The place we stayed at had a fantastic view but spotty cell service, making access to the Internet (aka “how Chris and I do our jobs”) difficult.  But cutting back on emails and access wasn’t the worst thing.  In fact, the first few hours give me twitchy fingers but then I love it.  Love.

Last photo from Maine (probably not, though). Photo credit to CSparl.

A photo posted by Kerri Sparling (@sixuntilme) on

My best girl

A photo posted by Kerri Sparling (@sixuntilme) on

Maine

A photo posted by Kerri Sparling (@sixuntilme) on

When I signed back online to catch up on things, I saw that there was a whole crossfit clusterfuck that took place, with the Crossfit CEO running his mouth about diabetes and making crappy attempts at humor (?) that lit a fire underneath the diabetes online community, bringing my Twitter feed almost to capacity with back-and-forths about misinformation, stigma, and a pile of -isms.  A few people pinged me for my reaction on this whole thing and I felt embarrassed that I didn’t really have one.  Yes, I thought his joke was fucking stupid and offensive and perpetuated countless stereotypes and misconceptions about diabetes on the whole.  I was happy to see the diabetes community rally in support of education. I was also encouraged to see how many people stepped up to raise their voice.  I was disappointed to, once again, see the whole “Wait, he means type 2 diabetes!” shouted out as if we de-stigmatize one portion of our community by further stigmatizing another.  And also, I was frustrated to see that people were quick to talk about how sugar doesn’t cause diabetes (which is doesn’t) but there wasn’t a whole lot of recognition about how fucking gross it is that there is so much added sugar in our diets (which there is), unrelated to diabetes but entirely related to overall health. 

Basically, this whole thing made made me a little mad at myself because I couldn’t drum up the desire to care too much about the whole thing, making me feel like a crumb of an advocate.

But I think all kinds of advocacy are necessary and important, even if all the issues on the table aren’t ones I’m super passionate about.  Everyone gets to pick their battles, to a certain extent. I hope we continue to attack issues like policy and under-served populations with the same vigor as we correct misinformation on Twitter.  If it were up to me, this brouhaha would segue into a broader campaign of awareness and advocacy that helps touch the lives of people outside of our bubble of privilege.  (I’m adding a link here to Spare a Rose because when I think about bursting a bubble of frigging privilege, this campaign comes to mind in a big way.  Yes, I’m biased.  In related news: my bias is not news.)

I’m experiencing spotty service again, only this time it’s in my own advocacy mindset.  Brain attention flits between wanting to make a difference in how society, and our own community, views diabetes sometimes and exhaustion at the effort of attempting that whole “difference” thing.  Which is why I’m looking forward to Friends for Life next week, with a special focus on MasterLab.  I want to hear more about launching your advocacy movement from Kim, and about changing policy from DPAC, and about alerting the media from Stacey.  I need to take a little bit of my advocacy burnout and frustration and channel it towards something useful. A reboot of all kinds would be good. I hope FFL does it for me because I sorely, sorely need it.

The View.

Main(e)ly awesome.

A photo posted by Kerri Sparling (@sixuntilme) on

Taking a little time this week. The view from not-my-computer is awesome. (Ignore the irony of posting this kind of sentiment from definitely-my-computer. You can take the girl away from the Internet, but DO NOT TAKE THE INTERNET AWAY FROM THE GIRL.)

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.

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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