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Posts tagged ‘community’

Nov 8

Global Connections in the DOC.

In October, I was in Barcelona for the 2nd European Blogger Summit put on by Animas and had the opportunity to brainstorm with several diabetes bloggers from across the pond.  (And some from waaaay across the other pond there on the far left … I’m talking to you, Australia.)

This video is a compilation of some of the things we took away from the summit, and what our hopes are for the coming year.

Check out these blogs from the folks in the video:

Diabetogenic

Insulin Independent

Mein Diabetes Blog

Project D’s Blog

The Grumpy Pumper

The Understudy Pancreas

Tutti I Diabetici Uniti In Rete

 

Related posts:

Of Cocktails and Community. Summiting the Everglades. Looking Back: PWD in the Wild.

Oct 29

16 Comments

Of Cocktails and Community.

“So what you should do is see what people are searching for and then carefully tailor your posts to draw in those searches.  Pick the search engine terms that there isn’t a high competition for, giving you an advantage in Google’s search algorithm.”

The example he used was pretty simple:  “10 Best Cocktails for People with Diabetes”

In a discussion during the European Bloggers Summit in Barcelona (running alongside EASD), a search engine optimization expert gave a presentation about seeding blog posts with keywords in order to cast a greater net for readership.  The SEO strategist was helpful, and had wonderful advice for people who were churning out content to get it read, but my  body had a tangible reaction to this kind of advice.  I felt myself prickling with frustration because is this really what people are writing for?  Page views?

No freaking way.  Not in this community.

So the top ten best cocktails for people with diabetes?  Fucking sure.  Let’s do this, social media-style:

  1. The #DSMA:  Take 140 characters, a hashtag, and equal parts honesty and humor and mix them thoroughly in Twitter.  Tastes best on Wednesday nights at 9 pm EST.
  2. The Blogosphere:  Start with a URL or a Feedreader and slap it into the search bar on your mobile device, tablet, or computer, or Google “diabetes blogs” for a list of ingredients.  Mix reading these blogs throughout your day for a boost in diabetes empowerment and community.
  3. The Flaming YouTube:  Search through YouTube for diabetes, or “diabetes math,” or “breaking up with diabetes,” or “changing the song on my Animas Ping” and you’ll find a slew of video combinations to add to your playlist.  (Title the playlist “Cocktails for Diabetics” and you’ll probably get a lot of search returns, but you’ll also find people who want to be found.)
  4. The Instagrammed:  Take your phone, photograph any ol’ diabetes bit or piece in your house, and mix with Instagram to create a frothy, fun mix of Dexcom graphs, race bibs, brave new infusion set sites, Halloween-candy-casually-pretending-to-be-hypo-treatment, and friends who understand.
  5. Facebook Your Face:  Take your Facebook account and stir gently with groups, hashtags, and posts about diabetes.  It may take a while for this mixture to fully set, but once it does, you’ll have a shot of community you can take in one sitting, or something you can sip on and scroll through for hours.
  6. The Friends for Life:  Take one part people with diabetes, one part caregivers, one part educators, one part inspirational athletes, one part Disney World, one part green bracelets, and a billion parts love and throw into a salad shooter and spray that stuff everywhere because in-person diabetes meet-ups and conferences will break your heart and mend it within the course of a week.
  7. The Group Text:  No specific ingredients, but a drink best shared with many.  And at 3 am.
  8. The Call Me:  Best served when low, because a phone call to another PWD who understands is the best way to keep from over-treating.
  9. The Honest-Tea:  Equal parts empathy and honesty, this cocktail is a must for people with diabetes who are looking for confirmation that they aren’t alone.  It’s not about enabling, but empowering.  (Goes really well with a side of Communi-Tea.)
  10. The Hug:  Social media is great, but nothing is better than a hug between two people whose much-loved pancreases have taken an extended leave of absence.  There is no set ‘best time’ for this cocktail – serve immediately and enjoy.

The one in the middle looks like pee, to me.

People in the diabetes community don’t communicate with one another for page views or Google search prowess.  Of course, not everyone’s intentions are the same across the board, and there are people who immerse themselves in a community looking for things that aren’t as altruistic, but the majority of interaction in the DOC, from what I can see, is between people who need each other.  That’s why so many of us started doing this, and it’s why so many of us continue.

Because when Google redoes its algorithm and there’s a new system for search engine optimization, when there’s an upheaval in what’s considered the “it” platform for social media, the song remains the same for the DOC.  Diabetes, for many, isn’t just in your body but also resides full-time in your head, and managing emotions and support is as essential as insulin (and with a significantly lower copay).  It’s not about where the discussions are taking place; it’s about the discussions that are taking place.  So “drink” up!

Related posts:

Partnering for Diabetes Change. Friends for Life Frenzy. FFL: Social Media as Part of the Prescription.

Sep 30

11 Comments

Weird Together.

“I travel a bit and go to conferences and events where there are people who have diabetes, too.  It can be kind of isolating, diabetes, so knowing other people who have it makes it easier to manage on all levels.  Does that make sense?”

“Yeah.  It’s like, ‘Hey, we’re weird together.’  And when you’re weird together, you get closer.”

That Guy George From the Plane (TGGFtP) and I spent the flight from San Francisco to Chicago sitting next to one another, talking first about how hung over he was (he was in San Francisco for a bachelor party and had a collection of air sickness bags in his seat pocket, jokingly at the ready) and then touching into trickier topics, like religion, politics, healthcare, and other topics that Miss Manners suggests keeping to yourself.

But honestly, after all the time I’ve spent in planes this past week (BOS -> LHR -> BCN -> SFO -> MDW -> PVD = WTF), I was happy to talk to someone, instead of picking through emails.

I laughed, harder than I’d meant to.  “Yes, that’s it.  That’s it, exactly, and a very eloquent description, at that.”

It’s true, though.  Even though I don’t have friendly feelings towards every person with diabetes I’ve ever encountered due to personalities, preferences, and proximity, there still is a strange draw to them.  It’s intrinsic.  At the MedX conference this past weekend, I was in a conference room with three PWD I knew (Sara, Chris, and myself), but when I heard a Medtronic pump go off somewhere a few rows behind me, I was intrigued and started doing the math.

“Sara and I are on Animas, so we don’t make the boop beep boop sound, and Chris is on MDI, so that’s not him going off.  Who is it?”

The boop beep boop’er didn’t make their presence known, and I didn’t pry, but if that person came up to me and needed to bum a fresh lancet or a test strip or a fistful of glucose tabs, I would have emptied my pockets for them, no questions asked.  There’s a level of understanding in play that’s automatic, and feels downright autonomic.

George was right:  I like having people to be weird together with.  And I like the fact that being weird together makes us closer.

Related posts:

FFL: Social Media as Part of the Prescription. Looking Back: PWD in the Wild. On Being An Athlete.

Jul 22

123 Comments

Pumped for the Pizza Man.

The oven broke.

image source

It took me a while to notice, because it was upwards of 90 degrees inside of my house (no central air … we will not be making this mistake with our next house), but once I realized the stove was kaput, it was about 6.30 pm and very much time for Birdzone’s dinner.  While I’d like to say that I walked out to our garden and picked enough fresh green beans, tomatoes, and lettuce for a healthy salad, then followed up with chicken on the grill, with a dessert of fresh blackberries and cream, I can’t.  Because I never ended up planting the garden I wanted to (too much time on the road) and we don’t have a grill (still haven’t bought one) and the frigging birds keep snaking our blackberries so, to this day, I haven’t had a single blackberry from the huge bush outside due to the aforementioned dickheaded birds. /digression

So we ordered a pizza.  Judge all you want.

Birdy and I were playing in her air-conditioned room when the door bell rang, signaling the arrival of the pizza man.

“The pizza man is here!”  Birdy opened her door and let in the dragon-breath heat from the kitchen, scurrying towards our front door with her yellow Batman Princess tutu flapping at her waist.  (She wears pieces of that costume all the time.  Even the itchy bits.)  I handed her a few dollars so that she could tip the delivery person.

I opened the door and the guy handed us our pizza and drinks.

“Here you go, miss.  It’s hot, isn’t it!”  It wasn’t a statement, but a declaration, as the heat was undeniable.

“Yeah.  Our stove broke, so there was even less of a chance of me cooking.”

He smiled as Birdy said, “Hi!” from behind my legs and darted out to hand him the money.

“Thank you … um, Batman,” he said, slightly confused but offering her a friendly smile.

“You’re welcome!”  and she took off.  I thanked him, and shut the door.  A few seconds later, the door bell rang again.  (The pizza man always rings twice?)

“Hi again.  Sorry, but I forgot to have you sign the debit card slip.”  He handed me a slip of paper, and as I signed it, he asked, “Do you have diabetes?”

“Excuse me?”

“Diabetes.  Do you have diabetes?  I noticed the sticker on your car said ‘insulin’ or something on it, and I wondered if you were diabetic.”

I laughed, surprised.  “Yes, I do have diabetes.  Type 1, diagnosed as a kid.  Do you?”

“Yeah.  Diagnosed as a kid, too.”  He reached into the pocket of his cargo shorts and pulled out a Minimed insulin pump.  “I’ve been pumping for about six years.”

I lifted the corner of my shirt and flashed him my silver Animas Ping.  “Almost ten years for me.   Small world!  And that sticker on my car is for Insulindependence.  It’s a diabetes organization focusing on sports and exercise.”

“Cool – I’ll check it out,” he said, winding his pump tubing around his fingers as he shoved the pump back into his pocket.

“Cool.”  I paused, and the words tumbled out like I was confessing.  “I don’t normally eat pizza, you know.”

The pizza man grinned.  “It’s like the most complicated bolus ever.  No matter what, I never get it totally right.”  He started to walk back towards his car, waving at Birdy.  “Have a good night!  Stay cool!”

Birdy appeared from behind the door.  “Mawm, he had a pump, too!  He has diabeedles!”

“He does!”

The diabetes world is a small, small one.  Never before had I been so pumped to see the pizza man.

(Yes.  We went all that way for a horrible pun.)

Also, today has been unofficially designated as a “day to check in” (hat tip to Chris Snider) with the DOC blogs that we’re reading.  I read a lot of diabetes blogs, but I don’t often comment because I usually want to say something meaningful, instead of “I like your post.”  (But I do like your post!)  But instead of finding that meaningful comment, I usually roll on and forget to return to comment.  NOT TODAY!  Today I’m commenting on every blog I read, because that’s the name of the game.  I love this community, and today I’ll show that through comments.  So please – if you’re here, say hello!  What’s your favorite color?

 

Related posts:

Friends for Life Frenzy. Looking Back: PWD in the Wild. mySugr: Feeding the Diabetes Monster.

Jul 15

15 Comments

Friends for Life Frenzy.

Bringing Birdy to the Friends for Life conference was awesome, because I was finally able to introduce my bonkers Birdzone to my friends in the diabetes community.  (And by “finally,” I mean in a way that counted.  When I brought Birdy to the conference when she was two months old, it barely counts, because she was more in the “burping and pooping and sleeping,” which she’s still into, but in a different capacity.  Except the “sleeping” bit. She’s not really into that.)  This year, my daughter was part of the party.

This year’s Friends for Life conference was different, for me.  With my mom and my daughter traveling with me, my perspective was skewed, seeing the conference through my own eyes (as an adult T1D PWD and faculty member), my mother’s (the parent of a grown-up CWD), and my daughter (the kid of an adult T1D PWD – holy acronym).  I watched as my mom worked to find her footing, immersing herself into a large network of other parents, even though her own kid was now grown.  I watched my daughter reintroduce herself to some of my favorite people, like Scott and Christel, and hug them fiercely.  I saw how Friends for Life could touch the lives not just of people living with diabetes, but for the people who care about the people living with it.  Because they’re also living with it.

As part of the conference team, I was responsible for co-leading several sessions, including the impact diabetes has on dating, a discussion about pregnancy, one about parenting, and a session on social media and the diabetes online community.  These discussions always serve to reignite my passion for connecting with other people who have diabetes, and talking about ways to improve our collective experiences.  (That, and they’re fun.)  More on these talks later, as I unpack suitcases and reclaim the parts of my brain that smash words together.

It’s a busy conference – lots of running around – and the breaks are brief and coffee/glucose-tab fueled.  There are so many people there that I want to talk to, and so many that I want to give huge “thank you” hugs to.  Running from session to session, with stop-overs at daycare to bring Birdy to the bathroom and then drop her back off with the other little kids, I felt like there wasn’t ever enough time to do or see it all.  I wanted to slow everything down, but the week rushed by at an incredible pace that left me hoping for ways to stretch hours into days.

It’s sometimes too much, trying to find words to describe how this conference has changed my life over the years.  I knew I wasn’t ever truly alone, but sometimes diabetes can capture you in a cage of isolation, making you feel like even small changes are too big to make.  But then you look around, right?  And you see the sea of green bracelets on the wrists of people whose pancreases are the same as yours, holding tight to family members with orange bracelets, and becomes more than diabetes.  It’s more than insulin.  It’s more than meters.

On Thursday night, at the FFL banquet, Scott and I were honored with the Friends for Life award, recognizing our work on our respective blogs, and also in helping to bring the “adults with type 1” track to life for the conference.  That night, I couldn’t figure out what to say.  Even now, a few days later, I still don’t know, other than a “thank you” that doesn’t even begin to scratch the surface.  But I do know that those awards stand to recognize not just individuals, but what the DOC has done and changed over the last decade.  Every voice matters, and every story heals.  For me, sharing these stories has been part of the prescription for good health.  Being part of this community has improved the way I manage my diabetes, and I am forever grateful.

Our lives are all different, from those without diabetes, and even within our own diabetes community.  In a week at Friends for Life, we learn that our differences can be empowering.  And our sames can be uniting.

“Mawm, I wuv confwences,” Birdy told me, spinning the orange bracelet on her wrist.

I touched her orange one with my green one, and she smiled.  “Me too, love.  Me too.”

Related posts:

My Little Orange Bracelet. Partnering for Diabetes Change. Looking Back: PWD in the Wild.

Jul 8

6 Comments

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.

Related posts:

The Friendly Skies. Partnering for Diabetes Change. A #dayofdiabetes.
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