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The Friday Six: Catching Up.

Hi!  I still write here.  I write a blog about things here.  This is my things blog, with diabetes stuff and other times not so much diabetes stuff.  Welcome to it.  (My brain is not entirely tuned in this morning.  Working on it.)  Coffee is helping, but it may take a few days to kick in.

Yesterday was a long day of traveling and I can say with certainty that my five year old kid is managing her jet lag better than I am.  (And we, as a family, were all up at 5 am and confusingly chipper about it.)  Thankfully, I really love to fly.

The wifi access while we were traveling was majorly woofy, allowing me to connect for brief minutes to let emails load and then not letting me reply to them, so my inbox is a muddled mess of things I’ve read and spazzed out about but haven’t had a chance to reply to yet. I missed a lot of really excellent Diabetes Blog Week posts.

Like this one.

And this one (the photo, once you see it, is un-see-able)

This one as well.

And this, about the personification of Sugar.

Oh how I loved this one, tooAnd this.

But this one was my favorite of all.

A huge THANK YOU to Karen for bringing the DOC together for the sixth year running.  I love Diabetes Blog Week, and she works so hard to keep it fresh, engaging, organic, and inviting.  You rock, Karen.  (#meowmeowmeow)

And in non-Diabetes Blog Week linky sort of things, I wanted to make sure I share, and reshare, the PLAID Journal.  Martin will be contributing a little Q&A here about the inception and development of his journal in the coming weeks, but in lieu of that you can read his post about it here.  His work is amazing, and as a contributor and a member of his editorial board, I am really proud to be part of it.  You can view issue 1 here.

Here’s a great update on glucose-responsive insulin.

I learned quite a bit about the type 2 experience from Brian’s post.

And a big CONGRATULATIONS to the lovely Dayle and Chris!!!

Oh, some photos from our trip?  I have a ton.

I feel like I missed a lot of work in the last week, with spotty Internet access.  Woofy wifi is not my favorite, but I can’t complain too much because the distractions of traveling were worth it.  Happy to have gone, but very happy to be home.

 

Diabetes on the Red Carpet … Ish.

For Chris’s Sea of Trees premiere this past weekend at the Cannes Film Festival, diabetes was almost the furthest thing from my mind because we were so damn excited about the event.

Diabetes came into play for a brief moment when I was looking for a dress. I tried to adopt a “dress first, diabetes second” philosophy, picking a dress that felt comfortable and pretty without caring if my insulin pump fit into it. After spending some time looking for and trying on a bunch of dresses (a post I’ll never write, because I made the mistake of looking for formal ball gowns in the same week that girls were shopping for their prom dresses, leaving the ladies that worked at the dress shops very confused about why this older woman was coming in amongst the sea of teenyboppers and leaving me just as confused about my place in this world of women … not my best moments), I settled on a navy blue dress that hit the marks for fancy and comfortable without making me feel like I was trying to be someone I was not. Trouble was, my insulin pump did not fit into the dress easily. Or at all. Instead, it felt once again like I was clomping around with a toaster clipped to me. Which is why I decided to go on injections for the night and not wear my pump. Going MDI meant I needed my CGM data more than ever, though, so I kept my Dexcom sensor on my lower back, underneath some of the lace overlay for the dress, which perfectly masked the subtle bulge of the transmitter. (Hee hee … bulge.)

Thankfully, going back to injections and monitoring via Dexcom receiver wasn’t too tricky because my insulin pens fit easily into the glittery clutch I had for the night, as did a tube of Glucolift. I decided not to carry a glucose meter for the night because it was too bulky. Chris tucked my Dexcom receiver into the inside pocket of his tuxedo (“You turned it to vibrate, right?” “Yes, I promise you won’t go off during your own movie.”) I deliberately ran at the 160 – 180 range so I wouldn’t go so low as to need a snack or so high as to need to dash to the bathroom.

Aside from checking my Dexcom a few times before we arrived at the event, diabetes took a wicked back seat to the whole experience. Instead, we were able to focus on the surreal aspects of the event itself.

Cannes SEA OF TREES red carpet

A photo posted by Kerri Sparling (@sixuntilme) on


CSparl on the red carpet

A photo posted by Kerri Sparling (@sixuntilme) on

After party for SEA OF TREES at the Cannes Film Festival.

A photo posted by Kerri Sparling (@sixuntilme) on

After a grumbly critical review the day before, it was amazing to watch the filmmakers receive a two and a half minute standing ovation after the screening. I have always felt proud of Chris and I recognize his tremendous talent as a writer (insert all my bias here), but it was so nice to hear from people who felt the same way, both in his industry and in our diabetes community alike. We are very grateful for everyone’s support, and it means the world to me to know our DOC family supports one another in diabetes-related ventures and decidedly non-diabetes adventures.

Thanks for being there on this insanely odd, hard-earned, and exciting journey, you guys. I’m forever grateful.

Diabetes Blog Week: Kicking It to the Curb.

When I was first hospitalized upon diagnosis, I spent two weeks in-patient learning the new and tangled ropes of type 1 diabetes with my parents.  My hospital roommate was a kid named Eddie, who had been bitten by a spider.  The other source of comfort was Kitty.

This grubby thing has been with me since the beginning.  My mom and dad let me pick him out at the toy store to before being admitted to the hospital, and this stuffed animal received as many paw pricks and injections as I did – albeit saline ones – during the course of those two weeks.  Kitty used to have long, fluffy “fur” that became matted and mangy from repeated snuggles.  He has a defined “waist” from me wrapping my little kid arms around him when my blood was being drawn.  You can’t entirely see his eyes, but they are in there, underneath the smushes of fur.

Chris and I moved into a new house a few months ago, and as we were packing, I had a few boxes designated as “important things.”  Those boxes weren’t put into the moving van but instead stayed in my car to keep them safest during the course of all the stuff shuffling.  One box was marked “DIABETES SUPPLIES” and in it I crammed my pump infusion sets, test strips, Dexcom sensors, etc.  And tucked neatly beside a spare glucose meter was Kitty, continuing to secure his VIP place in my diabetes supplies arsenal.

He used to live in my arms, when I was seven.  Then he moved to my shelf in college.  Now he lives in my closet, keeping watch from between boxes of Dexcom sensors.

He’s ancient.  Older than anything else I’ve ever owned.  Some people might think he’s due to be kicked to the curb, weeded out, tossed.

To this, I say, “No effing way.”  I’m planning on playing Uno with my grandkids several decades from now, with Kitty keeping watch from the closet where I’ll keep all my old lady accoutrements*.

*   *   *

This is part of Diabetes Blog Week, where blog prompts help generate a series of posts by folks in the Diabetes Online Community.  Here’s today’s prompt:  “Yesterday we kept stuff in, so today let’s clear stuff out.  What is in your diabetic closet that needs to be cleaned out?  This can be an actual physical belonging, or it can be something you’re mentally or emotionally hanging on to.  Why are you keeping it and why do you need to get rid of it?  (Thank you Rick of RA Diabetes for this topic suggestion.)”

* Like giant pairs of underpants  UNDERPANTS!

Diabetes Blog Week: The Quiet Parts.

Feels weird, and slightly ironic, starting a blog post about the diabetes-related things I don’t share here on the diabetes blog I’ve written here on the open Internet about my personal experiences with the disease.  It’s been ten years of this – the idea that there’s crap I don’t talk about might seem like a big fat lie.

But there are plenty of things I have decided not to share, both in the realm of diabetes and in the regular flow of insulin-free life.  I’m an oddly private person, considering what I do professionally.  So what do I share, and what do I choose not to share, and why?

“You put it out there, so you’re inviting people to judge you.”
That’s true.  By putting our lives “out there,” we are giving people information to judge us, for better or for worse. Giving the specifics of my lab work results or my weight or my fasting blood sugar this morning provides people with a window into my health reality.  It lets people put me into a statistic, or a range, or an assumption.  Some people are comfortable with allowing that kind of access.  I have come to realize that I’m not that kind of person.  No, I won’t tell you my A1C, even if it’s stellar and in-range and covered in fucking glitter.  I work very hard to manage this disease, and I’ve come to realize that I’m not the kind of person who does well being judged for that specific number, especially when that judgment attempts to minimize my efforts.

Because (being totally honest), I cared very much about the critique for a few years.  There was a time when I posted about my A1C while preparing for pregnancy (it was higher than what my doctor’s recommended, and I was writing about my struggle in bringing it down to baby range), and the comments that came back about my number ranged in their tone and sentiment.  Invited, warranted, or not, I can handle critical commentary, but there is a fine line between “constructive criticism” and “cruelty.”  And once I stopped getting all twitchy about the unsupportive commentary (because it’s not all going to be supportive), I felt a lot better.  Getting older has made me care less about being judged and more comfortable and confident about my decisions, decisions like not sharing my personal lab data.  Or like decisions to write about diabetes online in the first place.

“Just because you give them a window doesn’t mean you have to give them a door.”
We are not obligated to share.  We chose to share.  I write this website, and will continue to write here, because of the connection to the diabetes community that sharing fosters.  I love that part of it.  It took me a long time to realize where my boundaries are, and to feel comfortable staying within them.

While I chronicled my pregnancy in a very detailed way, I didn’t share everything.  Before my daughter was even born, I decided to keep her name offline, and after sharing some of her baby stories, I decided to keep her offline, too.  And I share a lot of the silly things related to diabetes, and some of the complicated things, too, but there are thoughts I have about diabetes that are sometimes so terrifying and other times so fucking arrogant that I keep those in, too.  Diabetes is so personal and runs a pile of gamuts.  Sharing it all feels like too much, at times.  Sharing some, however, helps me deal with the emotional side of this chronic illness.

A window in our lives?  That sounds nice.  Opening the door and letting in everything, and everyone?  I can’t manage that kind of flow.  What if a bat flies into my living room?  Fuck bats.  So I’m sticking with the windows, with the screens firmly in place.

“So what kinds of stories will we never hear you tell?  And why won’t you tell them?”
I don’t share stories about my extended family without their permission.  I don’t post about where I live or where I work during the day.  I absolutely do not write about arguments with family.  I do not share things that make me sad while I’m going through them (but sometimes I will share once I’m on the other side of that kind of emotional upheaval, as is my comfort level).  This kind of paints life as though it is “perfect” and without struggle, but I think we all know that the stuff we read on the Internet is always written with specific bias and through a specific lens. (Though I do try to disclose my financial biases, and also, I will always like my kid more than I like your kid.  It’s a fact.  Unless you are my husband, in which case I like your kid as much as I like my kid, for obvious reasons.)

I won’t tell some of these stories because they sometimes hurt to go through, never mind the added pain of retelling them.  I won’t tell them because they are mine, and privacy is an often-underrated but essential part of a peaceful life.

What I will share are stories about how diabetes affects my life, and how it plays a part in shaping my experiences.  I will connect with others through these stories and those friendships will color my existence in a way that I am still understanding and always appreciating.  I will share in hopes that someone will feel less alone, just like I feel less alone every time I read a new blogger or find a new Twitter DOC connection or have an awkward interaction with someone in a bathroom.

Regardless of how much or how little you share, your voice is important, and our community flourishes as a result.

*   *   *

This is part of Diabetes Blog Week, where blog prompts help generate a series of posts by folks in the Diabetes Online Community.  Here’s today’s prompt:  “Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself?  (This is not an attempt to get you out of your comfort zone.  There is no need to elaborate or tell personal stories related to these aspects.  Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.) (Thank you Scott E of Rolling in the D for this topic.)”

Diabetes Blog Week: I Can.

Decades ago, my body did whatever it did to reroute the purpose of my pancreas, and left me with a diagnosis of type 1 diabetes at the age of seven.

As a result, I can’t make insulin.

Diabetes was presented as a series of “You can’ts” to me, back in 1986.  You can’t eat that, you can’t do that, you can’t try that, you can’t be that.  It was an unsettling feeling, being a child and living by a series of perceived restrictions.  But not knowing any differently, I spent way too much time thinking that there were things I just could not do instead of recognizing and celebrating how capable my body remained.

It wasn’t that I didn’t make insulin.

It’s that I had to coax out the instinct to live beyond diabetes.

I had to relearn how to trust myself, which was a weird paradigm shift because I was used to not trusting my body.  (When your immune system unexpectedly turns on you, you might develop a trust issue or two.)  It’s a learning curve, even to this day.  I trust my body to run for miles and hold my daughter in one arm, grocery bags in the other, but there are hiccups thrown out by diabetes here and there.  Like last night, when my low alarm went off for an hour and a half because my blood sugar was cemented in the 50′s for that long and I had to put reason and restraint into practice by treating the low cautiously instead of devouring the contents of the fridge with reckless abandon.  I had to trust the food and trust myself to bring my blood sugar up enough but not too much, aiming for that balance without caving to frustration.

I don’t know how to achieve balance, but I do know how to remain in pursuit of it.  I’m still learning.  I’m always learning.  Diabetes is not a hole in me or the whole of me.  It’s a thing that requires thinging, and I’ll thing the hell out of it until my last breath.

But not at the cost of giving in to it.

I need to remember that I can do this.  I can conquer this.  I can design this and devour this and delight in this.

I can.  I fucking can.

*   *   *

This is part of Diabetes Blog Week, where blog prompts help generate a series of posts by folks in the Diabetes Online Community.  Here’s today’s prompt:  “In the UK, there was a diabetes blog theme of “I can…” that participants found wonderfully empowering. So lets kick things off this year by looking at the positive side of our lives with diabetes. What have you or your loved one accomplished, despite having diabetes, that you weren’t sure you could? Or what have you done that you’ve been particularly proud of? Or what good thing has diabetes brought into your life? (Thank you to the anonymous person who submitted this topic suggestion.)”

Click for the I Can – Monday 5/11 Link List.

Changing Behavior.

This week, I saw a Tweet from Close Concerns President Kelly Close about the idea of behavior and “behavior change,” which sparked some conversation on Twitter (and woke up the bats in my head):


Talking about diabetes in the context of behaviors makes sense to me, because it puts an appropriate balance in play between the influence of diabetes on our actions and the influence of our actions on our diabetes.

I have type 1 diabetes, so the need for synthetic insulin is something I cannot change at this point.  I’ve had the c-peptide test to prove that my insulin production is undetectable after almost 29 years with diabetes.  What I can change is how much insulin I take on the whole – which, for me, means choosing foods that are lower in carbohydrates and offsetting some of the higher carb meals with exercise.  Diabetes influences my behaviors in that way, making food and exercise feel like an actual science experiment at times.  My behaviors influence diabetes, because while there are things I can’t change about the way my body produces (read: doesn’t) insulin, the choices I make every day map how my blood sugars might play out.

I have way more control of diabetes than I think, but not nearly as much as I’d like.

It’s a strange dance.  Fine and not fine.  Influenced and influencing.  Can you actually control diabetes, or is does it become an analogy of lemons into lemonade?

Kelly is looking for some feedback on her question.  If you have opinions on behaviors, the ease/difficulty of changing behaviors, the definition of behaviors, an alternate spelling of “behaviors,” please share.  The diabetes community is not short on opinions and perspectives, so please share yours.

Finally.

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