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Posts tagged ‘advocacy’

Urgency – #Vote4DM and #DOCasksFDA.

Today is the last day to participate in the #DOCasksFDA survey.  The link is HERE and you can just CLICK ON THIS LINK and I’ll stop using the caps lock key.

Also, if you’d like to contribute your voice and share your dream for the future of diabetes, do it.  Do it via video, if you’re so inclined, like so many others have done.

Also, the Strip Safely team is bringing about a new advocacy initiative, using Twitter to target our legislators.  As the campaign tagline says, “We voted them into office.  Tell them to #Vote4DM.”  There are three diabetes bills that are currently in play up on Capitol Hill, and by visiting the Twitter page for Strip Safely, you’ll see some customized messaging all ready to go for your specific representatives.  For more information on the bills on tap and how you can raise your voice, CLICK HERE (damn it – that all caps button is my best friend these days).

Thank you, as always, for being such a crucial part of the diabetes community.  This whole thing would fall flat without you.  (SERIOUSLY.)

Walk with D: Join My Diabetes Journey.

How can people without diabetes understand what living with diabetes is really like?

This is why I have written this blog for almost ten years – to connect and share with my peers, but also to educate those who don’t exist in the diabetes bubble.  The DOC shares so much about their personal lives with diabetes in efforts to find community, empathy, and that whole, “Me, too!!” vibe.  But even within the diabetes community itself, there are levels of misunderstanding, misrepresentation, and mistaken messaging, often creating a divide where there should be a bridge.

By increasing understanding and empathy, we can work together to raise the visibility of real life with the ‘betes.  And the aim of the Walk with D campaign is to help peel back the layers of misunderstanding in efforts to build those bridges between the community itself and society.

Participation is simple: Share your story.  Using social media as your megaphone (like so many of us already do), show what your diabetes life is really like through blog posts, photos, tweets, status updates, and videos, and tag your stories with the #WalkWithD hashtag.  (Were you thinking about starting a Twitter account?  Today would be good – you’ll have three days to practice before #dsma!)

Gone are the days of stock photography representing diabetes (besides, it always pissed me off to see the stock photography lady who had diabetes one week and who also came back as a search for “office meeting frustration” – show me REAL PEOPLE with ACTUAL DIABETES, not the same reused stock photography model) – social media gives us the opportunity to replace the stock photos with real faces, real stories, and real life with diabetes.

To see the patchwork quilt of stories assemble real-time, check out the Tagboard in place at WalkWithD.com.

Together, we can create a collage that shows people both in and outside of the diabetes community the reality of life with diabetes.  This is what we do when we write blogs about our experiences, when we create videos, when we Tweet, and when we take on documenting a #dayofdiabetes.  This campaign is help us better understand one another, and to reach outside of the diabetes bubble and drop some diabetes slice-of-life on society as a whole.

Every voice matters.  I hope this campaign helps bring more voices to the community because I love learning from the DOC.  Are you caring for a child with diabetes?  Living with type 2 diabetes?  Newly diagnosed with diabetes?  Living with type 1 diabetes?  Gestational diabetes?  In a relationship with someone touched by diabetes?  There are so many different walks with D.  Connect with others touched by diabetes to understand their journey and to let them know that they don’t walk alone.

This advocacy campaign was developed by the Partnering for Diabetes Change group and runs from today through the end of Diabetes Month (9-15 through 11/30).  The goal is simply to raise awareness for, and highlight the dignity of, life with diabetes.  Walk with me, walk with D.

Bag of Hope … For Adults?

I’ve always thought Rufus was pretty cute, so when the JDRF link for their Bag of Hope flew by in my Facebook feed, I clicked.  (Rufus is my clickbait.)

According to the website, the Bag of Hope includes (but isn’t limited to):

  • Rufus Comes Home, A First Book for Understanding Diabetes, reference books
  • A JDRF DVD
  • An ACCU-CHEK® Nano SmartView blood glucose meter
  • Informational postcard about the support Lilly Diabetes offers families with a bookmark
  • Lilly Diabetes literature on severe hypoglycemia management
  • A Novo Nordisk key chain Webkey with details on the NovoPen Echo® reusable insulin pen
  • A Novo Nordisk postcard with information on T1D support from novologreach.com
  • A Road ID bracelet for Rufus, as well as a discount coupon for a Road ID bracelet for your child
  • Dexcom® continuous glucose monitor educational brochure and water bottle

I don’t know if the Bag of Hope was a thing when I was diagnosed in 1986, but the fact that they exist now is awesome.  I love this.  I love the thought that a family dealing with a diabetes diagnosis has proof of life after diagnosis, right there in a bag.  It helps connect people to the JDRF, but most importantly, it helps connect people with people.

But if there’s anything we’ve learned in the last 30 years, it’s that type 1 diabetes diagnoses are not limited to kids.  Adults are being diagnosed with type 1 diabetes.  Adults are living with diabetes.  And they still need a good dose of hope here and there, too.

The JDRF has their T1D Care Kit, which is awesome, a PWD can dream, rightt?  What would I stick in a Bag of Hope for Adults with T1D?

Here’s my wishlist [note: already being edited]:

I’m fueled by a bunch of bias with these selections, and I know I’m missing a bunch of things that, once I hit “post,” I’ll have to go back and add to the list, but this is my starter list.

What would you want to see included in an outreach bag for adults with type 1 diabetes?

 

Advocacy: Do It with Flair.

From @sixuntilme, after watching some of DarthSkeptic’s Tweets correcting diabetes misinformation fly by in my feed (thanks to @txtingmypancreas for highlighting):  “Why did you decide to take this wickedly funny high road?”

From @darthskeptic:  “It was partially based on frustration and partially based on ‘TheoryFail’ and ‘TakeThatDarwin‘ addressing and mocking people ignorant about basic science.”

Whatever the reason, I love seeing people who are tagging their desserts as #diabetes on Twitter being served up some education by @darthskeptic. Some examples:

And my favorite:

Carry on, @darthskeptic. Carry on.

Unexpected Advocacy.

The last thing I wanted to do was take my cover-up off.

Chris and Birdy (and our friends and their daughter) were at a water park in New Hampshire where kids can run and play in safe-for-littles sprinklers, pools, and water slides, and as the adults, we were tasked with guarding the perimeter.  Pacing back and forth, the four of us kept watch on our kids, ready to jump in at any moment to help them climb a slide, pick themselves up if they fell, or slather on more sunscreen.

I didn’t care who saw my body.  Not really, anyway.  I’ve run miles and given birth (not simultaneously), so I know there are strengths and weaknesses to my frame, but it wasn’t the shape and curve of my body that made me want to stay covered up at the water park.

I didn’t want people staring at the diabetes devices stuck to my body.

“Oh, suck it up.  No one is looking at you.”

Of course they aren’t.  They don’t mean to.  But when someone walks by wearing a bathing suit with a few curious looking devices hanging off it, it’s hard not to notice.  My standard beachwear is a bathing suit with my pump clipped to the hip, the tubing snaked out to wherever the infusion set happens to be living, and my Dexcom sensor taking up more real estate elsewhere.  These items aren’t jarring, and people don’t snicker, but they do look twice because cyborgs aren’t the norm.

Most of the time I don’t think twice about who might look, but on this particular day, I felt self-conscious.  Why?  Who knows.  Who cares.  I just felt eh that day.

But motherhood dictated that my self-consciousness take a backseat to being part of Birdy’s waterpark experiences, so I sucked it up and removed my cover-up.  My insulin pump infusion set was stuck to the back of my right arm, the tubing snaking down and tucked into my bathing suit, where the pump was clipped to the back.  My Dexcom sensor was mounted on my right thigh.  Even though these devices are reasonably discreet, I felt like I had two giant toasters stuck to my body.


Birdy needed help climbing to a higher platform in the play area and I helped her do that, thankful that my pump was waterproof.  We ended up in the sprinkler pad for a while and I was thankful that the tape around my Dexcom sensor was strong enough to withstand the water.  After a few minutes, I got over the whole “blargh – I don’t want to wear giant toasters” feeling and got on with things.

“Excuse me.  Is that an insulin pump?”  All casual, the question came from behind me, where one of the park lifeguards was standing.  His arms were crossed over his chest as he confidently watched the pool, but his question was quiet.

“Yeah, it is.”  I wasn’t in the mood to have a full chat about diabetes, but I didn’t want to make him feel awkward for asking.

“You like it?”

“I like it better than taking injections.  I was diagnosed when I was a kid, so the pump is a nice change of pace from the syringes.”

“I bet.”  He paused.  “I was diagnosed last August and I’ve been thinking about a pump.  But I hadn’t ever seen one before.  Is that it?”  He pointed to the back of my arm.

“Kind of.  That’s where the insulin goes in, but the pump is this silver thing back here,” I pointed to the back of my bathing suit, where my pump was clipped.  “This is the actual pump.  It’s waterproof.”  A kid ran by, arms flailing and sending splashes of water all over the both of us.

“Good thing,” he said.

“For real.”  Birdy ran by to give me a high-five and then took off playing again.

“Your kid?”

“Yep.”

“How long have you had diabetes?”

“Twenty-seven years.”

He gave me a nod.  “Thanks for not making it seem like it sucks.  Enjoy your day,” and he moved towards a group of kids that were playing a little roughly.  I stayed and continued to watch my daughter play, very aware of my diabetes devices that, for the first time ever, didn’t seem quite noticeable enough.

 

(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!  And thanks. xo)

What Do You Want to Talk About?

Last night’s #dsma chat was a particularly good one, because its intention was to generate discussion and feedback about what people in the diabetes online community (DOC) want to talk about.

Over the last ten years, the diabetes community has created some effective and supportive roots on (in?) the Internet. We are a vocal and passionate group of people (living with diabetes ourselves or caring for someone touched by diabetes) and the community seems to help people who are looking for their peers, looking to change something, or simply looking to share their stories. No matter what your level of involvement might be, the DOC is a place where you can find your footing.

So this question of “What do you want to talk about?” is a great one because it can help serve the needs/ hit the goals/ scratch the itch.

The evolution of the DOC is constant, and powerful, and we all have a chance to influence and shape it.  What’s important to you?  What do you want to talk about?

(And if you’re looking for more information on how to jump into the #dsma Twitter chats without losing your mind, check out this Diabetes and Twitter 101.)

Masterlab: Tides are Rising.

In the last ten years, the DOC has evolved from a small pocket of voices to an entire choir that can’t be housed in one town, or state, or even country.  I love seeing more hands raised and more people saying, “Me, too!” and providing support and understanding for one another.  Patient stories matter.  Our stories matter.

The DOC is also becoming more diverse, more inclusive, and more action-oriented, moving these online conversations to offline endeavors, making a tangible difference in the world of diabetes.  I’ve seen the start of this kind of change, and the tides are rising beautifully. And with it go all of our boats.

But there’s more work to be done.  Which brings me to Masterlab.

In a few days from now, dozens of diabetes advocates will bring their voices to sunny Orlando, Florida to participate in the Diabetes Hands Foundation’s Masterlab program, which is about “building a sense of what is possible and creating a formula for successful diabetes advocacy in the future.”

My response?  Oh hell to the absolute yes.  I asked Manny what the impetus was behind Masterlab, and he said that he’s hoping to address the “squeaky wheel” mentality of advocacy … namely, helping diabetes advocates make the wheel squeak more.

“We are in dire need of people who will tell their story, who will come out of their caves and tell to FDA, CMS, NIH, or your-favorite-alphabet-soup, the ways in which a particular drug, device, therapy, or research affects their lives. Maybe it’s not the A1c or the cardiovascular risk, but being able to live through less hypos or not having to take a shot. But we need more,” he said.

“We need advocates willing to speak where their voices need to be heard. We need people who can wear their passion “like a sports coat” (as Glu’s Dana Ball would say), balancing it with solid data to support their views packed with emotion. But we need more.”

The Masterlab takes place on July 2nd at the Orlando World Center Marriott from 7 am – 5 pm and is free for anyone who has already registered for the Children with Diabetes “Friends for Life” conference.  (If you would like to register just for Masterlab, the cost is $50.  You can register here.)  The full agenda is listed here, but if that’s tl;dr, the topics include Today’s Diabetes Advocacy Environment, What Has Been Accomplished by Other Patients (and How), Getting the Attention of Decision Makers, and Mobilizing the Diabetes Community, plus several others.

Manny added, “We need everyone behind the voices speaking on behalf of the community, providing an echo effect, to amplify our voices and make sure that there is not a single corner in any government office that has something that it could be doing to help more people touched by diabetes that doesn’t hear about it.  Putting in place the building blocks to start making this vision a reality… that is what Diabetes Advocates MasterLab is about. I hope the event sells out… because we need more.”

Click here for details on Masterlab, and please register if you’re coming to FFL, or if you live in the Orlando area.  Register soon, as space is limited.

Your voice matters.  Use it.

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