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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.

Boop Beep Boop.

“Boop beep boop!”

The sound is unmistakable, as it used to ring out from my hip for so many years.  That noise, the sound of a Medtronic insulin pump alerting for whatever reason, used to be my soundtrack before Fur Elise and the “boop boop boop!” of the Animas pump replaced it.

Boop beep boop!”

I was sitting outside of the classroom where my daughter was meeting with the school administrators for her pre-kindergarten screening tests when I heard that familiar noise.  (The tests upon which I will not comment because this whole process is so strange and so involved – whatever happened to reading books and milk cartons and coloring?  In related news, I’ve become an old bird.)

Looking up, I saw a teacher walking down the hallway, casually talking to her colleague with their lunch bags in hand, her fingertips deftly and instinctively pressing the buttons on her insulin pump, administering what I assumed was a lunch bolus.

“Boop beep boop!”

Even though I’ve found so much comfort in the diabetes community and have made lifelong friends who are funny, kind, and also happen to not make their own insulin, I wanted to leap up and say hi to the woman in the elementary school who also wore an insulin pump.  She was here!  In my town!  Randomly!  A PWD (person with diabetes) spotting in-the-wild is always exciting.  Kind of like finding Bigfoot, only with fewer over-the-shoulder glances and more “see a birthday cake!” faces.

But instead, I sat in the folding chair and minded my own business, secretly thrilled once again by the knowledge that it only takes a quiet series of beeps and boops to remind me that I am not alone.

 

HealtheVoices 2015: Stepping Outside the Diabetes Bubble.

Getting all my disclosures out of the way first:  I am on the advisory board for this conference and also presented as a speaker.  My travel, lodging, and expenses for the conference were covered by Janssen, and I was compensated for my participation and my consultation.  My opinions on the process and the conference are mine, but admittedly influenced.  Bias lens in place!  Moving on.

Two weekends ago, I was in Jersey City for the first (of what I’m hoping will become an annual event) HealtheVoices conference, put on by Janssen.  The formal tagline description of the conference was “HealtheVoices Conference: Empowering Online Advocates” but in my head it was “HealtheVoices: Finally, A Bunch of Us In One Room.”

Most of my advocacy work takes place in the diabetes space, talking with people already familiar with diabetes.  Or folks newly introduced to diabetes.   Or working in diabetes.  However you slice it, the majority of the people I come into contact with in an advocacy sense are touched by diabetes somehow.

But diabetes is only one “patient space” on the Internet.  There are patient communities everywhere, spanning a slate of conditions.  Cancer, Crohn’s disease, Rheumatoid arthritis, mental health, HIV/AIDS, lupus, multiple sclerosis … these conditions are just a small cross-section of the topics covered online.  People come together through common needs and experiences, and dealing with health-related issues creates a melting pot of discussions and camaraderie.

the attendees – all photos courtesy of the Janssen photographer

I was really excited to be part of this conference because it helped me pop that diabetes bubble, bringing me outside of my comfort zone of personal experience and immersing me into a diversity of experiences.  I could not have been more grateful for the opportunity, because it was inspiring and humbling all at once.

“I know I have something in common with all of you,” I shared during the presentation on compassion fatigue (a discussion about managing personal health needs and the growing needs of a growing health community) “But I don’t know the specifics of it yet.  I know what my peers with type 1 diabetes are dealing with, but I am still learning so much about other health conditions.  There’s so much I’m learning about what it takes for each individual here to have a ‘good day.’”

And I loved learning.  Seriously, there were some amazing people in attendance.  Here are few blog recaps from folks who attended, and other viewpoints can be grabbed from the #healthevoices15 Twitter discussion:

me, Karen, Kim, and Jenni

I don’t know all the proper language and subtleties and nuances that are necessary to speak eloquently and respectfully about the health experiences of others, but I did feel that strong, unspoken, powerful thread of “me, too” running through this conference.  We don’t deal with “the same” but we are all in pursuit of a life worth living, despite or because of whatever health challenges are in our lives.

the healthevoices patient advisory panel

Personally, I loved the diluted focus, stepping away from personal blood sugar checks and the beeping of pumps to see the patient community from 10,000 feet and the diabetes trenches, simultaneously.  It wasn’t about a specific health condition, but about the human condition, (and as cheesy as that turn of phrase might be, I’m sticking with it because there’s been a surplus of coffee today).  There was a high level of respect, community, and inspiration that left me needing a few days to process, and a lifetime to act upon.  People with diabetes have a great and empowered community to draw from, and outside of the diabetes community is a bigger, broader, more diverse community of patient advocates who are aiming to change the world, moment by moment and breath by breath.  Together, we are powerful.

To that, I give a solid “hell yeah.”

Writer’s Block.

Sat down at the keyboard
And I couldn’t find the words.
I found the letters, that was easy.
Home row right there in my face.
But the words? The words?  The words?
I can’t find those anyplace.

(I grabbed a pen and paper
To see if that would start the flow
… but it didn’t.)

I’ve run out of things to talk about.
Run out of things to say.
I don’t want to document the hold
That my disease has here today.

Yesterday we watched a movie.
And today, I’ll go outside.
I want to run and run and run until
inspiration and desire collide.

I’ll water plants – all the green beans.
I’ll log miles like a race.
I’ll hug my smallest Birdzone
And let the sunshine hit my face.

I don’t want to think about my meter.
Incessant arches of my graph.
I want to test and bolus and move on
Not let disease incite my wrath.

Burnout?  No.  Frustration?  Nah.
It’s not like I’m done caring.
I just need a break.  A small one.

And then I’ll go back to sharing.

Plug It In.

I’m not a good traveler, but I am a good packer. Part of my preparation ritual is to make sure I only bring what I need and that outfits are tried on and coordinated before I go. (Because there was that one time I brought a shirt and forgot pants and that made for a different sort of panic before a presentation.)

Thinking ahead helps me prevent over-packing. (I have made a rule about not checking baggage, ever, if I can help it.) So before I left for a business trip on Thursday afternoon, my house was a brief flurry of coat hangers, dresses, and shoes. I tried on four or five different things before chucking them into my suitcase (who am I kidding – I military roll everything so it fits) and then it was time to get ready to leave the house.

It took me almost an hour to realize that, in my frenetic fashion show, I had my pump clipped to my hip but not connected to my infusion set. It wasn’t until I heard the Dexcom alarm let loose with the HIGH ALARM! that I realized my tubing was wagging like a tail. Disconnected from my body. Leaving me on an unintentional insulin hiatus.

So many variables influence my blood sugars – exercise! Insulin levels! Food! Stress! Exclamation points!

But sometimes it’s as simple as remembering to plug shit in.

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