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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.

Stream of Consciousness.

Time for a bullet list of purged thoughts, brought to you by the bottom of my coffee pot.

  • It’s not snowing.  I don’t usually have a rage response to winter, but this one has been more than we could properly manage.  (Like when our snow shovel broke under the weight of the drift we were shoveling through.  Or when our snow blower ran out of gas and the gas was in the shed out back and we couldn’t get to the shed because the show was up past our hips.  #fuckyousnow and I mean it.)  So for it to be #notsnowing and #melting is a good thing.
  • Get these hashtags off my blog. #nottwitter
  • For a solid five year period, I did not lose a single pair of gloves.  If one fell out of the car when I opened the door, I saw it immediately.  If I dropped one, it always managed to fall into my bag and not end up lost forever.  Gloves were among the most lose-able things in my wardrobe and yet they always managed to stay paired up and on hand (literally).  But this year, something happened to my glove mojo and I’ve lost four pairs this winter alone.  I don’t know how to recover my good glove karma.
  • I have bought the same pair of moonstone stud earrings a dozen different times, and yet I still only have two singular earrings.  It’s unnerving.  Do these cheap little earrings go where the gloves go?
  • This weekend, I’ll be at the Diabetes UnConference in Las Vegas, where there isn’t any snow and there are many PWD on tap to attend.  I’m looking forward to making new friends, seeing old ones, and bolusing for copious amounts of iced coffee.
  • Way to GO, mySugr!!!
  • Does emotional stress spike up your blood sugar?  Caroline dives in to find out.  (But the answer is yes.  A firm and confidence yes.)
  • Did you guys see that the Spare a Rose totals have been boosted, thanks to a donation program from Asante426 lives saved, thanks to all of you.
  • Thanks to #dblogcheck day, I found some gluten-free lemon bars on this blog.  And now I love this blog.
  • At the Rhode Island JDRF TypOneNation event last weekend, I heard about a new sort of barrier tape to put underneath my Dexcom sensors to help mitigate the wicked rash.  It’s called Mepitac tape and I bought my first roll off of Amazon this morning.  I have no idea if it will work better/worse than the J&J Toughpads I have been using for the last three years, but I’ll try anything to keep the itch at bay.  Will report back after I give it a go.
  • Ripped from DHF’s site:  “The Diabetes Hands Foundation is happy and excited to offer scholarships to diabetes conferences as a part of the Diabetes Advocates program. We offer these scholarships to help get advocates to the major conferences in the US so the patient voice is present.”  You can find out more about the scholarships here, and then you should APPLY because your voice MATTERS.  All caps and such.
  • My friend Jenni Prokopy (the ChronicBabe) kicks ass, and I want her to continue to kick ass.  Check out her kick(ass)starter here.
  • I keep circling back to this David Sedaris essay about his FitBit because I am in a hardcore week of competition with an equally-competitive friend on FitBit, and I’m afraid I may wear holes in the soles of my soul in efforts to win.
  • But as I write this, I’m already itching to get up and clock a few miles on the treadmill in an attempt to gain some ground before traveling this afternoon.
  • In related news, I am relentlessly competitive.
  • And with that, I need to go run.
  • While I’m gone, the cats will guard the door like little, furry sentinels.


Guards.

A photo posted by Kerri Sparling (@sixuntilme) on

 

 

I’m Not a Doctor, But I Can Help.

“Mom, what is that rose?” she asked as colored at the kitchen table.

“It is part of a thing I’m working on that helps kids with diabetes who need insulin.”

“You give them insulin?”

“Kind of.  These kids live in countries that are far from here, but they have diabetes like I do.  And their fridge doesn’t have insulin in it, so we’re helping to give them insulin.”

“What happens if they don’t get insulin?”

“They can get sick.  And feel really bad.  So insulin helps keep them from getting sick.”

It’s hard to explain to my daughter why our fridge has insulin in it and why I don’t worry about where my next injection is coming from.  It’s hard to explain why insulin is so small, so silent, but so important in keeping her mother alive.

“I want to help.  I’m not a doctor but I can help,” she said.  “We can take one of your bottles of insulin in the fridge and put it in a FedEx and send it over to those kids.”

We send a little bit of money that helps do that.  Five dollars.  It helps.”

“So they can have insulin, too?”

“Exactly.”

“And so they can not be sick?”

“Exactly again.”

“That sounds like a good idea, mom.”

Exactly.  

Sausagebetes.

Man, I hope this cat is okay. Siah Sausage is the best.

The cat is being tested for diabetes. There goes my whole "it's not contagious!" assertion. ;)

A photo posted by Kerri Sparling (@sixuntilme) on

Inside Track: Chris and The Atticus Institute.

This afternoon’s post is an interview with the screenwriter in my house … because he lives here, too.  With our kid.  And the cats.  He wrote and directed a film called THE ATTICUS INSTITUTE, which is available on-demand and on iTunes today!

*   *   *

Kerri:  We’ve done this before, but we’re doing it again.  So hi.

Chris:  Hi.

Kerri:  So you’re my husband, you’ve come here into my office and you are sitting right next to me.  And you haven’t left yet.  So what would you like to talk about?  Today’s a big day, right?

Chris:  Is it trash day?

Kerri:  That seems like a not-so-nice thing to say about your film.

Chris:  I thought you were being passive-aggressive about the trash needing to go out.

Kerri:  That’s Friday.

Chris:  Right.  So today is Tuesday, which means that it’s the day my film, THE ATTICUS INSTITUTE, comes out on VOD and DVD.

Kerri:  And that also means you have three days until the trash goes out.

Chris:  Now you’re just being aggressive.  Regular aggressive.

Kerri:  Fair point.  Okay, so for people who don’t know what THE ATTICUS INSTITUTE is, can you give a brief “this is what it is?”

Chris:  In short, it’s a pseudo-documentary about the government’s efforts to weaponize possession.

Kerri:  And you wrote this film.  And directed it.  I know this because I am your wife.

Chris:  And because I was away shooting a film for two months.

Kerri:  Right but you’ve written a number of films, and this was your true directorial debut.  So how was that, going from putting it on the page to putting it on the screen?

Chris:  I liked the process.  I liked being able to see my vision through to the end, instead of passing off the baton.

Kerri:  Hang on, I wrote “bison” instead of “vision.”

Chris:  I’d like to see my bison through to the end as well.  If at all possible.  But wildlife aside, I liked being able to fully explore this idea.  Rather than the more familiar version of a possession movie, where the church sends in an exorcist and all that jazz, I wanted to take a scientific approach in dealing with the supernatural.

Kerri:  So you wanted it to be more grounded?

Chris:  Ultimately, yeah.  I wanted to play out the scenario of “what if there was a government confirmed case of possession,” studied and proven scientifically, and then show how the government might want to militarize something with that much power.

Kerri:  Wow.

Chris:  Yeah.  So it’s pretty much a romantic comedy.

Kerri:  I know you’re being cheeky, but honestly, this film isn’t a horror film.  It’s not like a jumpy-out scary sort of thing.

Chris:  No, it’s not.  It’s creepy more so than scary.  It’s unsettling.

Kerri:  Do you find it unsettling to sit here and do a formal interview with me?

Chris:  I wouldn’t exactly call it “formal,” since you’re in your bathrobe.

Kerri:  Fair point again.  Thanks for taking the time to talk with me today.  I appreciate it.  Please take the garbage out on Friday.

Chris:  Since we are now being formal, I seriously want to say thank you to the people in the diabetes community.  They’ve been a great support to you, and I’m grateful for how supportive they’ve been of me, too.

*   *   *

Thanks to Chris for the interview, and for the taking out of garbage things.  You can download ATTICUS from iTunes, watch the trailer here, and follow CSparl on Twitter @chrissparling.

SMASH.

Sometimes the symptoms of my low blood sugars are frustration and anger, which is often misplaced and taken out on the people closest (proximity-wise, and emotionally) to me. I was trying to explain this to Birdy two days ago, as I was treating a low blood sugar that was making me feel every inch angry and disoriented.

She nodded solemnly.

“You’re like the Hulk, then?”

… you wouldn’t like me when I’m low.

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