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Word Choice.

“Mom, why do you wear that bracelet again?”

She knows why, but every few months, she asks again.  Why do I wear a medical alert bracelet?  Why is that thing as important to leaving the house as having my keys?

“I wear it because it says I have diabetes, just in case someone needs to know.”

“Why would they need to know?”

“In case I wasn’t able to say it myself.  Like if we happened to be in an accident or something, or if I was asleep.”

She thinks about this.

Medical alert bracelet #diabetes

A photo posted by Kerri Sparling (@sixuntilme) on

“Is this why we have a house phone?”

“Yes.”  She knows the reason but asks anyway.  We decided to get a landline telephone in the event that there was a storm that knocked the power out, or if we had a babysitter and needed to call the house.  Or if my husband or children ever needed to call 911 on my behalf.  “We have a house phone on the waaaaay off chance that I’d have trouble waking up because of a low blood sugar.  You know, if I was passed out.”

I forget that the words we use matter.  That they are easily confused and conflated.  That she’s just a little kid.

“Passed out?!!”

“Yes, but that’s a very rare thing.  It hasn’t ever happened to me.  It probably won’t ever happen, but it’s smart to be prepared, just in case.”

“PASSED OUT?!!!”

It was then that I remember hearing her and her friend talking about her friend’s grandmother, who had recently passed away.

“OUT, honey.  Not AWAY.  Passed out means I would be having trouble waking my brain and body up and need extra help.  Not dead.  It’s very different,”  I scooped her up and held her close, aiming to hug the panic away from her as I listed all the reasons why passed out was different from passed away and also how it wouldn’t ever happen to me, right?  Right.

The reality of my own thoughts every night before bed stood in contrast to the confidence in my voice talking to Birdy.  The thought is fleeting, but also sharp and cuts through my mettle, reminding me that diabetes looks easy and seems quiet but exists with an undercurrent of worry.

And I’m learning that I’m not the only one who worries.

Pizza (A Christmas Poem).

T’was the night before Christmas and all tinsel’s in,
Not a creature was stirring or making insulin.
The stockings were hung by the chimney with care
In hopes that my islet cells soon would be there.
My children were nestled all snug in their beds;
While visions of pizza boxes filled me with dread.
I took out my pen, assessed the amount
And settled my brain to complete the carb count.

When out on the lawn there arose such a clatter
I sprang from my chair to see what was the matter.
Away to the window I went with a fright
(And on the chair arm almost ripped out my pump site).
The moon on the breast of the new-fallen snow
Highlighted the … thing? there at rest down below.
When what to my wondering eyes did appear
But a miniature Panc, looking all cavalier.
He looked like a corn cob, or maybe a penis.
I knew that he saw me, despite distance between us.

More rapid than eagles my insults they came,
As I whistled and shouted and called out his name.
“You stupid old pancreas! Where have you been?
It’s been 30 dumb years since I’ve seen you again.
From my childhood years to now raising my own,
Diabetes is the only life that I’ve known!
And now you waltz back, sitting there on my lawn
Expecting me to give hugs or to kiss or to fawn …”

But while I was ranting, the Panc, he just flew
Straight to the shed roof while I shouted, “Go screw!”
He stood there, so regal, and then, the rogue mutt,
He pulled down his pants and he showed me his butt.
And it became clear, as I fumed and I seethed,
That he came here to fight me, is what I believed.
So I steeled myself there, as the doorknob did rattle
And my pancreas came in my house to do battle.

He took out his betas, I whipped out a spoon
We stalked one another in my living room
His eyes, how they narrowed, his islets, how lazy!
(I was glad Chris was out ‘cause I’m sure this looked crazy.)
His droll little mouth was all knitted with rage
As he jabbed with his right, then drown dropped the steel cage.
It was just me and him, in a fight to the pain
“If you won’t make insulin, I’ll go full hurricane!”

We fought there for hours, just me and that thing,
I had a black eye and he pulled his hamstring.
Until finally – finally – I landed the punch
That sent the panc reeling and hurt a whole bunch.
While nursing his knee and cradling his arm,
My pancreas said, in efforts to disarm,
“You’ve bested me for decades, and I owe you a prize.
So grab that there pen and now open your eyes.
There’s a carb calculation, a quest for the ages,
And in minutes you’ll know it, so mark up those pages.
You’ve won, fair and square, and I owe you some solace.
So Kerri, here it is: the coveted Pizza Bolus.

He spat out some numbers and fine ratios
And I scrambled to write down his mathematical prose.
By the time he was done, our fight fences were mended.
I would remain the Lead Panc while his ass just pretended.
And he reached out his hand to shake, sealing the deal
I extended mine back, not knowing how to feel.
But I heard him exclaim, as he limped out of sight,
“You’ve won this round, Kerri. Enjoy pizza tonight!!”

Participate in Research: Peds to Adult Endo Care.

As an adult with type 1 diabetes who, a hundred years ago, transitioned from pediatric care to adult care, I have a ton of interest in how that process takes place. There are so many factors that play into making that transition effective.  Does the child have a chance to talk one-on-one with their doctor as they get older?  Is there room for group visits in the pediatric space to help transition to adult care?  Is independence and responsibility tossed to the kid all at once or is it a gradual process.  And hey, does the waiting room inspire confidence in peds while the waiting room in the adult clinic generates despair?  (Oooh that last one.)

Growing up with diabetes includes learning how to take the baton of self-care and run with it, and everyone does it differently.

Always working in pursuit of improved patient outcomes, Drs. Tamara and Sean Oser, along with their colleague Dr. Kanthi Krishna, are studying the process of transition from pediatric diabetes care to adult diabetes care. I cannot wait to see what comes of this study and I hope lots of SUM readers click through to see if they qualify to participate.

tl;dr: To see if you qualify and to participate in this study about the journey from peds endo care to adult endo care, you can access their survey here:

HERE IS THE SURVEY!  CLICK ON MEEEEEEE!

Feel free to share this survey with your PWD peers so we can help improve quality of life and health outcomes for our community.  And if you’d like a psychedelic Santa gif, you can have that, too.

Digging Up Some Joy.

I have been trying to actively distance myself from the desire to dive deep into all the bad stuff that’s been going on lately.  Headlines get more and more distressing and humanity seems to have gone off the rails.  It feels gross to even watch the news because … well, the news is gross.  Everywhere.

Happy frigging holidays, right?

I’ve been in a little bit of a buzzkill cycle and I need to bust out of that in a hurry.  So I’m actively digging up some joy in order to remind myself that there is joy out there, and in here, and in me.

  • HAPPY! HAPPY! JOY! JOY!  – My son had his first sleepover at my mom’s house, which was a success.  And after I fell asleep on the couch at 9 pm and then moved upstairs to bed at midnight (after pumping and then freaking out briefly because I had almost forgotten to move the Elf – more on him in a second), I slept through until it was time to wake Birdy for school.  That’s a lot of sleep.  It helped make me feel like an adult human again.
  • HAPPY! HAPPY! JOY! JOY! My insulin pump took a hard hit against the bathroom tile yesterday and didn’t get injured at all.  Same goes for my cell phone, which was accidentally thrown across the room in a separate moment.  Props to durable devices.    
  • HAPPY! HAPPY! JOY! JOY! – Nothing says loving like a giant iced coffee.  Nothing.
  • HAPPY! HAPPY! JOY! JOY! – My son has just realized that his hands are attached to him and that they are delicious.  He also figured out how to manipulate said hands in order to grab squishy blocks or to pat my face.  After several months of doing the route infant circuit, the smiling and grinning and playfulness of this little boy is exciting and adorable and makes me so happy.  He is the smiliest of all the Guy Smilies.  I love watching him explore and expand his world.
  • HAPPY! HAPPY! JOY! JOY! – The Birdzone has also recently discovered the Elf on the Shelf, which means we have one in our house.  His name is Chippy.  I love him because she is so excited by his presence, but I kind of hate him, too.  Waking up at 1 am by inhaling all the oxygen in the room in a panicked “ohmygodthefuckingelfneedsmoving” moment is not optimal.  But her face when she sees where he’s moved to gives me intense happies.
  • HAPPY! HAPPY! JOY! JOY! –  My neighborhood is awash with holiday decorations and people hanging out.  I love this stuff.  Mostly because we live among some really wonderful people, but also because of cookies and holy shit are there some delicious cookies going on.
  • HAPPY! HAPPY! JOY! JOY!  Like these cookies.  Four ingredients, one of which is peanut butter so instant win.  I would live inside of a tin of these cookies, no problem.
  • HAPPY! HAPPY! JOY! JOY!  – Also, in terms of recipes that bring joy, check out these penguins.  I want to make a waddle of these little fellas and set them loose in the neighborhood.  (Note:  It feels so right that a group of penguins is also called a waddle.)
  • HAPPY! HAPPY! JOY! JOY!  Also, the cats are no longer experiencing feline PTSD (yes) as a result of the little Guy joining the family.  Siah’s hair isn’t falling out anymore and Loopy has stopped pawing relentlessly at the bedroom door.  (And now that they are back to being their normal cat selves, their nocturnal routines have returned in full.  Which means that Siah’s chubby ass going down the stairs happily at 3 am sounds like the heavy boot steps of someone who has broken into my house.  Cat burglar?)
  • HAPPY! HAPPY! JOY! JOY! – Exercising is also still going forward, albeit a little tangled up with my family’s constantly-shifting work schedule.  And that’s a plus, since I was feeling very sluggish and lazy these last few months.  Related:  The West Wing is a good show.  Currently a few episodes into the first season and am getting way into it.
  • HAPPY! HAPPY! JOY! JOY! – Also, I started using the Verio Flex (switched from my beloved Verio Sync) and that’s been a good experience, too.  The meter has less of an MS-DOS feeling than the Sync, and I’ve returned to uploading my meter results to the Reveal app.  Granted, I’m still not checking my blood sugar as frequently as I’d like to be (aiming for six times a day, still only clocking in around 3 – 4 times per day … but am wearing my Dexcom religiously, so that’s a plus), but the meter itself is a good upgrade from the Sync.
  • HAPPY! HAPPY! JOY! JOY! – And one thing that’s been consistently bringing good feelings to the forefront has been the diabetes community.  Seriously.  Every time I manage to log on and check out what people have been writing, it’s confirmation that people are in this to help one another.  From new voices in the DOC (like Today with Tubes and the posts on DOColors) to a whole list of benefits to life with diabetes (thanks, Catherine!) to policy efforts and #insulin4all and organizations aiming to improve lives for PWD, this community is still a huge source of good in my world.  I’ve always valued this space, but lately it’s been a bright spot in these times of crappy headlines.

Man, that felt good to list.  Channeling Ren and Stimpy entirely now.

Accountability.

We have a newly-minted kiddo.  That’s an established fact.  He is cleaned, fed, and loved all day long.

Here’s the problem:  I’m not cleaned, fed, or loved all day long.  It’s embarrassing to admit that, but it’s the truth.  I’m struggling hard with self-care.  And I also kind of buck up against even the admission of struggling with self-care, because parents in general are sometimes tsk, tsk‘d for putting their needs on the to do list at all.

But that oxygen mask metaphor that I used back when Birdy was born?  Applies to the little Guy, too.  I can’t take care of him, or her, or anyone if I’m off my own game.

Maybe I’m not off my game so much as I need to change the game.  Gone are the days of plotting and spreadsheeting fertility goals, and with them went the fastidious monitoring of blood sugars and doctor’s appointments.  It’s okay to loosen the reins a bit there, but I need to keep up some semblance of diabetes management.  Checking blood sugars?  On it.  Using the features of my insulin pump to my advantage, like inputting my blood sugar and carb intake and letting it calculate my insulin needs?  On it.  Keeping my CGM graph top of mind instead of succumbing to alarm fatigue?  I can do that, too.

But oh the exercise and food thing is a frigging quest.  Uphill.  In the snow.  With that Sisyphus ball thing.

I thrive when held accountable, and I need accountability in order to reignite some healthier habits.  There was a short discussion about this on Facebook last week, which led to the creation of a small Accountabilibetes group, where we’re trying to help one another stick with some kind of exercise program, and that camaraderie has been a big boost.  Even though the weather has been fuck all cold (snowed last night), I’ve been back on the treadmill the last few days, easing in with some interval training that’s heavy on the incline and gentler on the speed for now.  (I’ve started watching The West Wing, which I’ve never, ever seen even an episode of before.  Now I have seven seasons of Sorkin-saturated dialog to work through.  Should keep me entertained throughout the winter treadmill months.)  A fully-charged Fitbit helps, too, as I’ve avoided that thing for the last 12 months as well. As far as food goes, improved food choices usually follow exercise for me, so I know that I’ll battle food temptations less when I’m physically active.

So far, it’s only been a few days, but I’m hoping that a few more days will wet cement these habits.  Once that mental cement sets, I’ll be in my pre-pregnancy planning circuit and my health overall will improve.  Right?  RIIIIIIIIIIIGHT.

Before that cement dries, I need to stick my finger in it and write “It’s worth it.”  And maybe also draw a cat out of the word “cat.”

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