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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.”

 

Running the Gamut of Emotions.

In my diabetes life, emotions are right up there with insulin and food as influencers of blood sugar management.  And I wish it wasn’t so, because stress and excitement are hard to “plan.”  (Replace those actual quotation marks with finger quotes, because they fit the bill a bit better.)  And the emotions that come up as a result of diabetes crap?  Holy shit, they are a circus all their own.

The emotions of diabetes are a thing for me, and one that I need to work to manage as fastidiously as I work on my numbers.  Which is why my Animas column this month is about that exact thing:

“Diabetes is more than the lab work results and pricking fingers, taking insulin, counting carbs.  That’s the to-do list we have to check every day, but it doesn’t even begin to touch the other side of life with a chronic illness, and that’s the headspace part.  Some of my academic friends call it the psychosocial part; I think of it as the emotional portion of managing my diabetes, and in my life, managing my headspace is as important as managing my blood sugars.

There’s a whole range of emotions connected to diabetes that I run though on any given day.”

For the full article, click over to my columns at Animas.  And for more on emotions and diabetes, you can basically read anything I’ve ever written here on SUM.  :)

Feed Me.

“I spent [insert slightly obscene amount of money] at the grocery store this afternoon … again,” I said as I put the grocery bags on the kitchen floor.

Chris looked over and assessed the content of the bags.  “It goes into our bodies.  This is what we should be spending our money on.”

Food is an important topic in our house, ranging from its complicated relationship with my diabetes, its influence and  role in my daughter’s health, and overall how society pushes a confusing food agendaFood is a reward.  Food is a punishment.  Food is confusing as fuck and I’d rather just view it as food.

But as much as I’d like to say that I follow all the “rules” and do right by my body at all times, I slip a lot.  Unhealthy food habits creep their way into my regimen almost unnoticed at times.  (Sneaky little bastards.)  For example, about a year ago, I actively tried to cut back on the amount of coffee I was drinking, but after a few months of half-decaf and picking water over iced coffee, I found myself reintroducing that second, and then third cup of caffeinated awesomeness.  (Because that’s a huge problem for me – coffee is awesome, and I like it very much.)  But despite how much I might want to snuggle up with a giant iced coffee, it’s bad news to consume so much of the stuff.  I need to scale back.

I also have a tendency to defer to things like prepackaged and pre-measured yogurt in order to take a crack at keeping blood sugars from going nuts.  If I need a snack, it’s easier to reach for something already carb-counted, but that’s not always the best plan because I’d much rather avoid pre-packaged, if I can.

I won’t even mention the gluten-free journey, because that’s been an exercise in dedication and frustration all unto itself.

Basically, I’ve worked hard to cut out some bad eating habits, and some of them are working their way back in.  This trend needs to be met with an “Oh hell no” because I work too hard at being healthy to derail efforts by something as daily as food.  I need to revisit food logging, even for just a few days, to realign my brain with my mouth and hands.

In the past, I used an app to log food choices, but this time, I have a sharpie marker, a piece of printer paper, and a firm resolve.  I need to see my choices in black-and-white (or, specifically, teal-and-white, as the teal sharpie marker is really lovely) so I can make better choices.  Otherwise, I’ll end up swimming in an endless pool of iced coffee and protein bars.

… which kind of sounds delicious, aside from the whole “protein bars looking like poop” thing.  I think I need to stop this post now, because it just derailed.

The Emerging Diabetes Online Community.

I’m really proud of this paper, The Emerging Diabetes Online Community, written with Marisa Hilliard, Jeff Hitchcock, Tamara Oser, and Korey Hood, about the diabetes online community and the importance of peer-to-peer support between patients on the Internet.

The official abstract: “Diabetes self-management is complex and demanding, and isolation and burnout are common experiences. The Internet provides opportunities for people with diabetes to connect with one another to address these challenges. The aims of this paper are to introduce readers to the platforms on which Diabetes Online Community (DOC) participants interact, to discuss reasons for and risks associated with diabetes-related online activity, and to review research related to the potential impact of DOC participation on diabetes outcomes.”

There are a lot of friends and colleagues mentioned in this paper, like Children with Diabetes, Scott Johnson, Diabetes Mine, Texting My Pancreas, the CGM in the Cloud group, and several others.  Actually, that’s one of my favorite features of this paper, noticing how many of these resources are created and maintained by people I consider friends.  Speaks to the true connectivity of the Diabetes Online Community and how what we provide for one another is hard to quantify but easily recognized as “important.”

It continues to amaze me, seeing how much this community has changed and grown and evolved since I ventured online ten years ago.

To download the paper, you can click on this link and the PDF is free.

Artist.

While I was making lunch for my daughter this afternoon, she occupied herself with construction paper, markers, scissors … and my glucose meter, glucose tabs, insulin pump, Dexcom, and lancing device.

“Mom, I made all of your diabetes things.”

Hard working artist. #diabeticmommy

A photo posted by Kerri Sparling (@sixuntilme) on

Her creations. #diabetes #diabeticmommy

A photo posted by Kerri Sparling (@sixuntilme) on

#diabeticmommy #diabetes

A photo posted by Kerri Sparling (@sixuntilme) on

Caught the Bird making construction paper diabetes devices. #diabetes #diabeticmommy

A photo posted by Kerri Sparling (@sixuntilme) on

#diabeticmommy

A photo posted by Kerri Sparling (@sixuntilme) on

“So what’s the deal with the smiley face, Birdy?”

“That’s because you’re happy. And people with diabetes are happy.”

Thank you, thank you, little Bird, for bringing a smile to my face that should have been there the whole time.

Time Consuming.

“Thank you for calling [insert every company name I had to call yesterday here].  Please listen carefully, as our telephone options have changed.”

“Please press one to continue in English, para español oprima dos.”

“Press two if you are a patient, press three if you are a provider, press four if you are a member of the media, press five to return to the main menu, press one if you noticed that we skipped right to two and didn’t mention one.”

“Enter your twelve digit prescription number.”

“Enter your date of birth.”

“I’m sorry – your date of birth is not valid.  Please re-enter your date of birth starting with a two digit month, two digit date, and four digit year.”

“Enter your six digit group number, followed by the date of birth of the primary policy holder.”

“What is your shipping address?”

“I’m sorry – I didn’t understand that.  Can you please confirm your shipping address?”

“Your shipment will be to you in seven to ten business days.  One of your orders requires special packaging and will arrive on your doorstep wrapped in pillows of ice with penguins stamped on the side and your neighbors might think you have ice cream delivered every three months in bulk but you and I both know it’s just insulin – wink, wink.”

“Your confirmation number will be given to you at the end of this call.  Please be sure to write that confirmation number down.”

“If you’d like to enroll in our automatic refill program, please listen to the following message.  If you don’t want to enroll in our automatic refill program, please listen to this message because you can’t hang up until you hear the confirmation number.”

“Please hold while we process your request.  Do not disconnect before hearing your confirmation number.”

“Your confirmation number is the sum of 5+4-(323 x 423)/9.  Would you like me to repeat your confirmation number?”

“Press three to speak with a customer service representative.”

“Are you sure?  Press three again, twice and really fast, to speak with a customer service representative.”

“Please hold while we transfer your call.”

“Thank you for continuing to hold.  Please continue to hold.”

“Thank you for holding.  We heard you pee, even though you thought we were on mute.  Thank you for washing your hands.  Please continue to hold.”

“Hoooooooooooold.”

“Still hold.”

“Thank you for calling.  Please listen carefully, as our telephone options have changed.”

 

Flick of the Wrist.

In the interests of getting through TSA in Orlando as quickly as possible and making my way over to my gate so I could find some iced coffee and a banana, I disconnected my insulin pump and put it through the x-ray machine, caring very little if it melted in the transaction because I was melting in the transaction.

The tram to the gates was arriving just as I was finished at security, so I grabbed my pump off the tray and held it in my hand. dragging my bag to the shuttle. Just after “stand CLEAR of the closing doors,” I reached around to the top of my hip and reconnected my infusion set, sticking the pump into my pocket.

A woman boarded the tram, her infant daughter strapped to her chest. I noticed her noticing me while I reconnected my pump.

“Insulin pump?”

“Excuse me?”

“Is that an insulin pump? Sorry – my son has diabetes and I recognized the pump.”

“Oh, yes.” I searched her wrist for an orange or green CWD bracelet but didn’t see one. “Were you here for the conference?”

“What conference?”

“The diabetes conference. It’s called Friends for Life and it’s put on by an organization called Children with Diabetes. It takes place here in Orlando, over at Disney.”

She smiled. “I’ve never heard of it, and I live right here in Orlando. What’s it called?”

“Friends for Life. It’s a diabetes conference for families with diabetes. Lots of kids with type 1 attend with their parents, and lots of adults like me who go to connect with other adults who have diabetes. It’s really nice, like diabetes camp. Community helps, you know?”

She nodded, and the baby on her chest flapped her arms happily. “My son goes to camp. He loves it. But I’ve never heard of the conference before.”

I reached into my bag and fished around for a pen. Nothing. Checked my pockets for a business card. Nothing. The tram was about to stop and ditch us at the gates, leaving me just a few seconds to try and explain how a few days in Florida can change your life for the better.

“What’s the conference called again?”

I grabbed the edge of my green bracelet and pulled it off my wrist.

It's on. #ffl15

A photo posted by Kerri Sparling (@sixuntilme) on

“I know this seems weird to hand you a slightly-used conference bracelet, but the URL for the conference website is on it. Everyone who has diabetes wears one of these green bracelets. You see one of these and that person understands, you know?” I handed her the bracelet, pointing at the website address. “I hope this doesn’t seem creepy. It’s just an amazing experience, being around all of those other families, and it would be great to have you and your family check it out, if that’s your thing.”

She took the bracelet and put it in her pocket. “This is very nice of you. Thank you. I’ll check it out for sure.”

The tram doors opened and we stepped out.

“Where are you headed home to?”

“Rhode Island.”

“And you come here just for that conference?”

I thought about the week that had just passed, when I was surrounded by people who redefined family.

“All the way here. Green bracelets are pretty awesome.”

She waved, and her baby waved, too. “Thank you for passing this along. Safe travels back home. Maybe we’ll see you next year.”

Usually when I board the plane home from Friends for Life, I like to look down at my green bracelet because it reminds me of my PWD tribe.  This year, with a flick of the wrist, I was grateful it had found a new home.

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