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Spare a Rose 2016

From February 1 – 14, the diabetes online community is hosting our annual Spare A Rose campaign.  You remember that one, right?  The one where you send eleven roses instead of twelve on Valentine’s Day, taking the value of that saved rose (averaged out to $5) and donating that to the International Diabetes Federation’s Life for a Child program, which provides life-saving insulin and resources for children with diabetes in developing countries.

We need you.

Yes, you.

You’re part of this, you know.  If you’re reading these words, or any words written by a person touched by diabetes, you are touched by diabetes.  Maybe you’re the parent of a child with diabetes.  Maybe you’re an app developer looking to connect with the diabetes community.  Maybe you run a magazine that hosts health-related articles.  Maybe you’re a PR company that hopes to influence the diabetes community.  Maybe you’re a representative from a diabetes company, or a teacher who has a student with diabetes in their class, or a researcher who studies this disease.

We need you to help amplify the Spare a Rose message.  You can donate to the charity, share the Spare A Rose link with your friends and colleagues, and truly take this initiative, this passion – and our global community -  to a powerful new level.

If you’ve emailed a diabetes advocate, asking them to share your latest press release or to engage in your survey, please spare a rose.

If you work in the diabetes industry and you leave diabetes in your office when you go home at night, remember that people with diabetes don’t ever leave diabetes behind.  And that many people with diabetes struggle to gain access to the drug that keeps them alive.  Considering bringing this campaign to your office.  Please spare a rose.

If you are touched by diabetes in any way – the partner of, the friend of, the coworker of, the child of, the parent of, the neighbor of a person with diabetes – please spare a rose.

If you are part of the greater patient community, I’m asking you to walk with the diabetes community for two weeks and help us make a difference in the life of a child.  With your raised voices, we make a greater difference.  Please spare a rose.

This is where we shine, you guys; where we take care of our own.  Where we can take our collective power, not as people with picky pancreases but instead as people with full and grateful hearts.  Show your love for this community on Valentine’s Day by sending one less rose to a loved one and instead providing life for a child.

Flowers die.  Children shouldn’t.

Please spare a rose.

And please spread the word!

 

(This post is recycled, but the sentiment remains the same and the mission is just as important.  Show true love.  Save a child.)

Gadgets and Gizmos.

Getting dressed this morning and trying to shove an insulin pump and a Dexcom sensor and not map the silhouette of my dress with pump tubing was an exercise in frustration, and that song from The Little Mermaid kept going through my head.

“I’ve got gadgets and gizmos aplenty … I’ve got whosits and whatsits galore …”

But I sat at breakfast during my meeting today and elected tea over actual food because my blood sugar, despite excellent technology and fastidious care, was elevated and stubborn about staying that way.  Despite best efforts, diabetes was still a pain in the ass this morning, and there wasn’t much I could do about it.

And that urge for a cure, some version of it, became strong.  Come on, research.  Come on, artificial pancreas teams.  Come on, islets.

I want more.

Happy Thanksgiving, 2015 Edition.

This year, Birdy decorated our hands all on her own.

Happy Thanksgiving, everyone!  Thanks for being part of my extended family.

 

Care What the Community Thinks, Not What the Community Buys.

[I have a working relationship with Animas. My disclosures are here; please read them.]

During the middle of one of our discussion sessions, Daniela D’Onofrio let fly a statement that defined the whole blogger summit for me:

“Care what the community thinks, not what the community buys.”

Last week, the European Animas team brought a group of diabetes advocates together for a face-to-face discussion. This meeting is very special to me because it serves as a portal into the global diabetes online community, bringing advocates from different countries, speaking different languages, together at the same actual table.

And at that same table is the company responsible for believing in our voices: Animas. Several years ago, there was an air of awkwardness when it came to plunking different diabetes demographics into the room – did you really want to talk about the company RIGHT IN FRONT OF THE COMPANY? It felt weird. Strange, kind of like when someone asks if they have something in their teeth and you know you owe it to them to fess up about the giant chunk of broccoli sitting between their two front fangs but instead you say, “Nah! You’re fine,” and then nothing changes.

This was a meeting that included talking about that broccoli. We weren’t in an ivory tower talking about ivory tower-type things. We hit upon topics that felt uncomfortable at times, including the absence of type 2 voices at the table, and the perception of our meeting from the outside. It got sticky, the discussions, because we didn’t dance around any awkwardness. Instead, we tried to embrace it to move forward. When respect is coupled with honesty, more good comes of it. Now, years after those first meetings between the diabetes community and diabetes companies, people are being straight up about their needs and wants. There’s a power to that.

And, as a group, we recognized our privilege. We knew we were flipping lucky to be in that room, many with the support of Animas, and that the meeting is not a yearly guarantee. So we took advantage of our time together. We were honest, regardless of who was listening or taking notes. Our agenda included topics around incorporating and encouraging type 2 diabetes voices, diabetes and well-being, working through advocacy burnout, and building trust between diabetes companies and diabetes communities.

Annie has written about her experiences at the summit here, with some detail from her perspective on the sessions. More posts from other attendees are in the works, and the event was sort of documented on Twitter using the #IntlDOCExchange15 hashtag.

For me, the discussion about type 2 voices was the most eye-opening. It was understood that we were there with the Animas team, so therefore the folks in attendance were either Animas users or caregivers to Animas users. With insulin pumps not indicated for use by people with type 2 across the board, it made sense that the attendees were people touched by type 1 diabetes. Made sense, but still seemed wrong. We talked for a long time about how uncomfortable it can be, at times, to bring different groups together at times, but how necessary it is on the whole. I’ve been a longtime proponent of bridging the gaps between types (ashamed to admit my own preconceived notions in the past) and it felt good to see the people in our sessions talking openly about the common ground between the diabetes types, even if not everyone saw that common ground at first glance. People are people, regardless of their diabetes “type,” and to pretend we don’t have common ground is truly unreasonable.

Together, we’re stronger; no caveat added.

It was in that last session that Daniela summed up every company interaction (or simply every interaction, ever) that’s been productive, at least for me. Understanding and caring about the needs of the people touched by diabetes is what really matters; community and business objectives alike benefit from that level of interaction and involvement. This applies to people with type 1 diabetes, type 2 diabetes, type whatever diabetes.

So how can diabetes companies best serve the overall community? By caring more about what people think than what they buy. (Or, in terms that are more my speed: Give a shit about PEOPLE, not purchases.)

And I think that’s happening. Less slowly than before, and certainly surely, patient advocates across the health condition spectrum are raising their voices and being HEARD.

EU Blogger Summit

A photo posted by Kerri Sparling (@sixuntilme) on

Our group’s viewpoints were not representative of the entire diabetes community (just as my post here is not representative of the entire summit), or even of our respective regions, but it was powerful to have different individual opinions shared comfortably and openly. Many people in the group were returning to the meeting for the third or fourth time, but there were a few new faces, and it was encouraging (inspiring, even) to see those new voices welcomed into the fold.

I’m very appreciative that Animas trusted me to facilitate these discussions, and allowed me the opportunity to meet with my global DOC partners to move the mission forward. Especially when they, as a company, are not dictating the mission, but are instead along for the ride with our community as a partner. Props, and thanks, for that, and for pointing out the broccoli while simultaneously picking it out of their own teeth.

(And with that, I’ll end that particular gross and specific metaphor.)

No Hiding It.

“So that’s a …” and her question trailed off with a note of empathy and curiosity, her hand gesturing towards the Dexcom sensor on my body.

In the summer time, I can most often be found either on an airplane headed somewhere for work or on the beach, pretending not to work. (There appears to be no in-between. And I’ll admit that there might be a little sand in my laptop.) On airplanes, it’s easy enough to conceal my diabetes devices and allow disclosures, if any, to take place on my time.

But at the beach, in a bathing suit under the bright sun, there’s no hiding anything.

There’s a new column up at Animas.com, closing out summer officially for me with “No Hiding It.”  TL;DR (but please do go read) – my daughter’s new friend’s mom and I went to the beach, and my pump and sensor, and their associated tan lines, were a discussion point.

Nothing like educating others with our toes in the sand.

 

[Read my Animas disclosure here.  Please?  Thanks.]

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