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Posts from the ‘Diabetes Online Community’ Category

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.)”

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.

A Look at Diabetes Blog Week, With Karen!

Karen Graffeo is a talented knitter, devoted cat owner, and tireless advocate for diabetes, and I am so proud to call her a friend.  Six years ago, she launched the first Diabetes Blog Week, an effort that serves to expand the diabetes online community and embrace the beauty of diversity of voices.  Today, Karen is sharing some of the how’s and the why’s of Diabetes Blog Week here on SUM.

Kerri:  Congratulations on the sixth annual Diabetes Blog Week!!  For those who aren’t familiar with what it’s all about, can you shed some light?

Karen:  Thank you, I’m so excited to be doing this a sixth time!  Diabetes Blog Week was inspired by a similar event in the knitting blog community.  There is a set topic each day of the week, and participating bloggers write about that topic on their blog.  There is a list set up for each day and bloggers add the link to their post once they’ve published it.  Then we can all hop around the DOC blogosphere and read the different perspectives on each topic.  And, in the process, we can find some new blogs to read and make some new connections.

Kerri:  Is it tough to come up with topics every year?  Where do you draw your inspiration from?

Karen:  It does get tougher each year to think up fresh and enticing topics.  Every year has seven topics (one for each day) and two “wildcards” that bloggers can use if a certain day’s topic doesn’t inspire them.  So that’s nine topics a year, and we’re in the sixth year – yikes!!  However, in the past few years I’ve been asking bloggers to submit topic ideas and that has been a huge help and inspiration.  And since Diabetes Blog Week is for the community, putting out a call for topics seemed like a great way to get the community even more involved in DblogWeek.

Kerri:  What is your favorite part of Diabetes Blog Week?

Karen:  My favorite part is definitely all of the excitement and enthusiasm the DOC shows.  I remember back in 2010 when I held the first Diabetes Blog Week I wasn’t even sure anyone would sign up.  So I’ve always been very thankful for all of the support over the years and I’m so happy bloggers still are willing to join in.

Kerri:  What is the hardest part of Diabetes Blog Week?

Karen:  That first year, Diabetes Blog Week had 142 participants.  Although it was no small task, I was able to read and comment on almost every post written.  As of last year we had more than 200 participants and it gets harder to leave as many comments as I’d like.  It’s a good problem to have, but I definitely feel disappointed that I can’t find the time to comment on every single Diabetes Blog Week post.

Kerri:   And how can people participate this year? 

Karen:  I have put all of the information (I hope!!) and a sign up form in this year’s Diabetes Blog Week post.  Also, the topics have been posted here so bloggers can check them out and start thinking about what they want to write.  And if anyone has a question I haven’t addressed they can email me at DblogWeek@bittersweetdiabetes.com.

To sign up for Diabetes Blog Week, click on that snazzy little button there (designed by the endlessly talented Mike Lawson) and fill out the quick and easy form!  Diabetes Blog Week is an amazing way to become reacquainted with diabetes blogs you’ve been reading for years and to discover new voices to add to your support team.  Have fun!  Make friends.  Write bunches.

Thank you, Karen, for bringing us all together for a sixth year.  :)

 

Turning Ten.

I’ve written ten years of content here at this blog, and today marks the beginning of an eleventh year.  Ten years is a frigging long time.  When I started blogging, I was 25 years old and living in a one bedroom apartment in southern Rhode Island with Abby the Cat and a newly-minted Siah Sausage, starting my relationship with Chris and clumsily finding my footing as a proper adult.

Rocketblast forward ten years and I’m a self-employed writer and proud diabetes advocate, married to the guy whose name I still write in the peanut butter, mother of one small but fierce little Bird.  (And, as Rhode Islanders should, we came back to Rhode Island.)  Throughout the last ten years, so much has changed.  But type 1 diabetes has been a constant.  (A constant pain in the butt.  A constant source of humility and perspective.  A constant thing to be conscious of and diligent about.  All of it.)

What makes my diabetes management easier?  A healthy diet, lots of exercise, checking my blood sugar, taking insulin appropriately … check.  What makes doing all those things easier?  A healthy community, lots of community, checking in with the community, taking community appropriately …

… check again.

I could go on and on about how blogging about diabetes has opened up opportunities for support and camaraderie, but I’ve kind of already done that.  So I’ll just say thank you to each and every one of you who reads this blog or writes their own blog or Tweets about diabetes or posts about diabetes on Facebook or Instagram or Tumblr or [insert shiny, misspelled social media thing here].


Thank you for sharing your stories, and for creating our diabetes community and helping it grow.  It’s been an amazing journey, the one from “alone” to “connected,” that “grateful” doesn’t even begin to touch.

Onward and upward.

FitBit Motivation.

I like my FitBit.  I’ve been using one since March of last year and it has consistently kept me motivated to keep moving.

… okay, let me check that for a second.

It’s not the device itself that keeps me on the move. Initially, I liked seeing the numbers climb on my step count and watching that ticker drove me to earn higher numbers.  It was a stark mental contrast to how I felt about my diabetes numbers, where I was aiming for more of a game of golf (bring that number DOWN, not UP).  FitBit was cool because the higher the number, the better.

Eventually, the newness of the self-tracking incentive wore off and I wasn’t as eager to fight to hit my step goal.  I still exercised daily, but with a little less oomph, if that makes sense.

What reinvigorated my motivation are the people I’m interacting with through the FitBit community.  And this is where diabetes intersects a bit, because most of the people I’m connecting with through FitBit are friends from the DOC (diabetes online community).

One of the things I like most about the FitBit are the challenges you can engage in.  Here’s a screenshot of what’s available (over there on the right) –>

The ones I like the most are Workweek Hustles, because you have five days to not only reach your own self-set goals, but you can pace yourself against friends, making it a friendly* competition.  As the FitBit devices sync with the app, you can watch your step count climb and see which participant will come in “first” (with the most steps).

Dude, it is FUN to play and to flex my competitive muscle.  (I’m a little bit competitive.  Maybe more than a little bit, judging by my husband’s bemused raised eyebrow every time I go to use the treadmill at 9 pm.  “FitBit challenge again?”  “Yep.”  “Go get ‘em.”)  And while exercise isn’t something I’ve ever shied away from, it’s more exciting when I’m held accountable.  If I’m in first place, there’s no way I’m going to skip a workout or avoid going for a walk or run, because I want to keep my foothold on that leader board.

These competitions play out awesomely for my blood sugars, if I stay on top of things.  Making an effort to move more during the day has brought my total daily doses of insulin down by more than 20%, which for me is quite a bit.  (Also, this is not medical advice or science of any kind.  Talk with your doctor if you are considering taking anything you read on the Internet as medical advice, because they are a doctor.  And I am simply an over-caffeinated FitBit addict.)

More importantly, I noticed that my activity level goes up significantly when I’m engaged in a FitBit challenge.  If there’s a competition to participate in, reaching my step goal of 12,000 steps per day is a piece of (gluten-free) cake.  It’s like having a dozen workout buddies.  (Read Laddie’s take on the challenges here.)

FitBit challenges are pretty freaking awesome.  And fun.  And help break up some of the mundane ho-hummishness that my exercise routine can fall into.  A dose a fun, friendly competition and accountability is exactly the gentle incentive I needed.

* “Friendly” sometimes needs to be in quotes because a certain academic who shall not be named has a tendency to become a thorn in my competitive side.  Cough – @miller7 – cough.

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