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Posts tagged ‘social media’

Sort-Of Guest Post: What Do You Wish Health Care Professionals Knew?

[Hey guys.  This post was not written by me, but was instead written on my behalf. It's more streamlined and professional, and I didn't want to toss it out there without some kind of explanation or positioning.  Take a look, read through, and please do participate if you're inclined.  Also, please share this post if you'd like to help highlight this effort.  It's a very cool study aiming to take a look at how HCPs can learn from communities like the DOC, and I'm looking forward to seeing the results.)  

A researcher in a medical school in Quebec City, Canada (who is type 1 herself) is doing a study about how health care professionals might learn from online communities of people living with conditions like diabetes.

I have been collaborating with her on this study since November 2012. Other people in the DOC are involved, too. I encourage you to participate in the study and to spread the invitation to be a part of this.

This study is open to anyone who has personal experience with diabetes. You may have type 1, type 2, LADA, gestational diabetes, or another type. You might have diabetes yourself or you might be a family member or friend of someone with diabetes.

Tell us what you wish that health care professionals (doctors, nurses, dietitians, physiotherapists, counselors, you name it) understood better about diabetes.

If you want to participate, sometime in the next two weeks, put up a blog post or post a video, and then post a link to it here: click this link for the study.  Tell us what you wish health care professionals knew!

After the two weeks are over, we will ask you to vote to help us prioritize which ones we should show to health care professionals first.

If you have questions about the study, contact Dr. Holly Witteman, PhD, the lead researcher on the study, or Dr. Selma Chipenda-Dansokho, PhD, the research professional running the study.

Looking Back: PWD in the Wild.

As the ladies of Team Sparling prepare for our trip to Orlando for the Friends for Life conference, I’m looking back at a moment from last November, when my friend Renza and I were spotted as “PWD in the wild.” 

*   *   *

We were sitting at the coffee shop having a really nice Melbourne cappuccino (they make the best cappuccinos I’ve ever had in my whole life, with the steamed milk almost like a marshmallow topping on each coffee – amazing), talking about the Australian diabetes social media summit. The weather was sunny and crisp, with plenty of other patrons enjoying their caffeine jolt at the outside cafe tables.

“I guess when I was diagnosed, it didn’t matter much to me that I didn’t know anyone else who had diabetes.  I didn’t really know what diabetes was.  But as I grew older, I wanted to find that community, and that’s where the Internet has helped tremendously,” I said to Renza, talking about the impact of the diabetes community on my emotional well-being.

“And here we are now,” said Renza, laughing as she stirred her coffee.

No joke - Melbourne has the best coffee I've ever tasted.

We chatted on about the Summit the day prior, and what we thought of it. And then our conversation tumbled into our personal experiences with diabetes and pregnancy.  Thinking back on this conversation, we probably said the word “diabetes” at least a dozen times in a ten minute conversation.

Which is probably why the young woman was staring at us from her table, just a few feet away. She was holding her coffee cup near her mouth, but hadn’t had a sip yet.  She was fixated on us.  Her young daughter was drinking a frothy mug of hot chocolate, swinging her feet as the wind caught and tousled her bangs.

“Excuse me,” she said, almost to herself.

My seat was facing her table, so I leaned in and said, “Hello!”

“I couldn’t help but overhear – you both have diabetes?”

Renza shifted in her seat.  “Yes, yes we do.  I’m sorry – were we being too loud?”

The woman laughed nervously, her cup still close to her mouth but merely an accessory at this point.  “No, not at all.  I was happy to hear … I mean, my daughter was just diagnosed with type 1 diabetes a few weeks ago.  We’ve never met anyone else who has diabetes.”  She made a sweeping gesture with her hand.  “And here you both are!”

“Real life people with diabetes, in the wild,” I smiled.

Renza leaned back and extended her hand, introducing herself and explaining to the woman that she had type 1 diabetes and also worked down the street at Diabetes Australia Vic.  “You can come visit us any time you’d like – and I’m at this coffee shop all the time.”  She handed the woman her card.

Thank goodness for the poise and professionalism possessed by Renza.  I couldn’t help myself – I waved animatedly at the girl and her mother and this stream of information passed my lips:  “I’m Kerri and I live in the United States and I’ve had type 1 diabetes for twenty-six years and I have a husband and he and I have a daughter who is two and a half.”

I wanted them to know I was okay, and that even though my life has included type 1 diabetes for several decades, I was still okay; it was a consolidated diabetes life story in one messy sentence, delivered with a caffeinated edge.

“How are you doing?  How are you both doing?”  I asked.

The woman looked at her daughter, who was staring at us.  “We’re good. We’re doing good.  We come to this coffee shop often because they are the only ones who really listen to how I want her hot chocolate prepared.  Her daycare is right around the corner, so it’s a nice place to stop.  They do listen …” her voice trailed off.

“We do know.”

We talked for a few minutes, and the woman gathered up her belongings.  “It was so nice meeting both of you.  Really.  Thank you.”  Her daughter stared at us with her big, brown eyes, the same as her mother’s.

“Our pleasure.  I hope to hear from you.  Please do reach out,” said Renza warmly.

The woman took her daughter’s hand and crossed the street toward the daycare center, her delicious Melbourne coffee still untouched on the table but every single sip of her daughter’s special-made hot chocolate all but devoured.

A #dayofdiabetes.

There’s not much of an option for a day without diabetes, but sometimes the friends and acquaintances I’ve made through social media aren’t as acutely aware of the food math and thought process behind each insulin dose decision, so I’m jumping on the #dayofdiabetes bandwagon. Chris Snider at A Consequence of Hypoglycemia took up the challenge of “live-tweeting” a day with diabetes, and then Storify’d it, giving readers a 24hr glimpse into a full day with T1D.  I loved reading his Tweets, and after following Cherise’s go a few days later, I wanted to join in the storytelling.

I took this concept for a spin back in 2007, when I tried on my first CGM (the Dexcom STS, which was only cleared to work for three days and wasn’t waterproof, so you had to slap this giant plastic bag-type shower patch over it so you could clean yourself).  There have been some “all day diabetes” Twitterers – didn’t Bernard do it on World Diabetes Day one year? – but this new iteration will hopefully inspire other PWDs and people with different health conditions to share their story.   (My first Tweet ever was about the Dexcom sensor – does participating in #dayofdiabetes mean my social media matrix may fold into itself today?)

I started my live-Tweeting journey this morning, and I’ll be working straight through to tomorrow morning.  Hopefully it will be boring as can be, with numbers sorting themselves out all happily between 80 and 120 mg/dL, but even a day of in-range numbers comes as the result of a lot of work, and a lot of little, nit-picky diabetes management moments.  I definitely don’t log every diabetes-related physical and mental task throughout the day, but for the sake of the experiment, today I will.

A day of diabetes, running live through Twitter for the day.  If you want to follow along for the day, I’m at @sixuntilme.  If you’re interested in telling your story for a day, adopt the #dayofdiabetes hashtag as though it were a sweet, adorable, lumbering puppy scampering towards you on impossibly uncoordinated legs.  And if you want to take a look at Chris or Cherise’s live-Tweet sessions, pop over to the Day of Diabetes Tumblr account for a snapshot view.

Diabetes Resources and Social Networks

AADE Side by Side Blog:  Part of the American Association of Diabetes Educators’ Side by Side: A Partner Approach to Diabetes Self-Care program.

Children With Diabetes:  Started as a place for parents, but is evolving into a place for all PWD.

Chronic Babe:  The website for babes who just happen to have a chronic illness.

dLife:  For your diabetes life!  (Also where I used to work.)

Diabetes Daily:  A better life starts today.

Diabetes Monitor

Diabetes Self-Management:  Online companion to the magazine

Diabetes Social Media Advocacy:  Strengthening the diabetes community, one Tweet at a time

Diabetes Talkfest

Diabetic Feed:  The first podcast about diabetes.

Diabetic Living:  Online companion to the magazine

diaTribe:  Informative newsletter serving the diabetes community

I’m Type-Free:  Live your life.

Insulindependence: Join the revolution

Official Diabetes Blog (AU)

Tu Diabetes:  A community for people touched by diabetes

EsTuDiabetes:  A community for people touched by diabetes (Spanish)

TCOYD: Educating and empowering the diabetes community since 1995

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