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Posts tagged ‘advocacy’

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.

Friday Six: Masterlab, TypeOneNation, and Jim Turner!

There used to be only six links, but I’ve made a mockery of that and now it’s a pig-pile of resources.  All clickable and informative, though, so dive right in!  –>

Jim Turner has always been on my list of “awwww, isn’t he charming?” and the fact that he has type 1 diabetes didn’t hurt that sentiment.  This week, Christopher Snider talked with Jim about diabetes and his journey as an actor on Just Talking.

“How do we educate the younger generation into a world of acceptance, responsibility, and a little less anger towards the uneducated and ignorant? How do we promote peace, understanding and use social media for good?”  Insightful post from Jess at T1DActiveLiving.

If you live near Austin, TX or are planning to be there the weekend of June 20th, join the JDRF for the TypeOneNation Texas event.  I’m excited to be on their list of speakers and am looking forward to visiting Austin again.

“The Diabetes Technology Society (DTS) this week announced the launch of the DTS Surveillance Program for Cleared Blood Glucose Monitors. This surveillance program will provide independent assessment of the performance of cleared blood glucose monitors following Food and Drug Administration (FDA) clearance against accepted standards, and generate information that can assist patients, healthcare providers, and payers in making the right product selection.”  Bennet blogs about it here, and the DTS has a full update here.

A Sweet Life is hosting an excerpt of my book, Balancing Diabetes, on their website, focusing on Walking the Blood Sugar Tightrope (you know … that thing we do every single day?).  Insight from Dr. Shara Bialo, Dr. Sean Oser, and Dr. Jill Weissberg-Benchell make me so proud of this particular chapter.

Oh hell yes.

“The pride of my four year old daughter in her ability to aim her vomit was kind of heart-warming were it not for the fact that previously in the day, she’d thrown up all over me.”  New column up at dLife’s Generation D.

Are you a Boston-local and with some free time next Wednesday night?  Join me, and the crew at Glu, for a discussion about Dexcom and life with type 1 diabetes.  Details here.

“Acceptance means that I don’t have to like the fact that I need to make these decisions, but I can be kind to myself while doing them.”  Leeann’s guest post about diabetes and mental health, part of a series on the You Can Do This Project website.  Amazing stuff.

“Want to be a champion for effective diabetes policy? You’re in luck. The Diabetes Foundation will host the very first MasterLab, July 2, 2014 at Marriott’s Orlando World Center in Orlando, Florida!”  Learn more about the MasterLab program, and how you can become part of it, at the Diabetes Hands Foundation website.

Happy weekending!!

D-Blog Week: Change One Life, Change the World.

My reasons for sharing my story of a life with type 1 diabetes were few, but definitive:  I felt alone.  I wanted to feel less alone, because the whole “feeling alone” thing was wrecking some havoc on my emotional health.  I didn’t have many peers, in my life, who were living with diabetes, and the Internet offered very little in terms of support back in 2005.  At best, I could befriend the stock photography images of “people with diabetes” and at worst, I found little comfort in the list of reasons why life would be complicated, and compromised, found in my Google search returns.  After almost twenty years of life with diabetes, I really needed a community to make me feel whole.

Diabetes can create as many mental hurdles as it does physical ones, which is why diabetes and emotional health is my “itch.”  Peer-to-peer support is one of the most crucial elements in my diabetes self-care arsenal.  I did diabetes for about a decade without access to people who understood the minutiae of it all and I didn’t realize the void that existed until it was filled.  Connecting with those first kindred spirits – Scott, Violet, and Tek, in particular – cracked my world open and showed me that I was going to be okay and in the moments when I wasn’t as okay, I wouldn’t go it alone.

As I’ve written before, you can have access to all the best doctors and all the best technology but it’s all shit unless you’re in the right head space to make proper use of it.  Insulin that remains unbolused is useless.  Dexcom receivers don’t do any good shoved in a drawer.  The accuracy of glucose meters doesn’t matter if you don’t ever check your blood sugar.

The best laid plans of (NOD?) mice and men often go awry if you won’t engage in the self-care necessary for pursuing, and maintaining, good health.

So what’s my advocacy itch?  Hell, I’ve written about this for nine years – advocating for peer-to-peer support for people with diabetes.  Fostering community.  Being part of something that makes the isolation and fear of diabetes succumb to the possibility, and to the hope.

It’s as big as the Spare a Rose campaign and as small as a phone call with a newly-diagnosed friend who needs support.

Will this kind of advocacy change the world?  Perhaps not.  But it’s not about changing the whole world.  It’s not about page views or stat counts or any of that bullshitIt’s about being there for one another and taking care of one another.  Losing sight of that means losing so much of what makes our community truly awesome (like ‘100 billion hot dogs‘ kind of awesome).  Being part of a global movement to raise awareness for diabetes has been life-changing, and life-saving, for me, and I know for many others.  Even if we don’t see the direct influence of our collective community in clear and quantifiable ways, know that it is changing lives.

And that, in turn, changes the world.

 *   *   *

It’s Diabetes Blog Week, and this entry is for the “Change the World” topic.  For more on Diabetes Blog Week, including participants and topics, click on the respective links.  It’s not too late to join in the fun – jump in now!

What is a Diabetes Advocate?

Last night’s #dsma chat was a terrific one, focusing on how people in the diabetes community define “advocacy.” I wanted to summarize it here (at least the parts that resonated for me) because it could serve as a catalyst to inspire.

[For information on what the #dsma chat is, click here. And to learn more about connecting with people with diabetes on Twitter, click here.]

The community shared their advocacy “origin stories:”

And then we compared notes on what we’re most passionate about:

… segueing into reasons why that topic is something that touches our advocacy hot spots (sounds sassy …):

But of course, the road towards getting something done is often paved with obstacles. For many of the folks on the chat, “fear” played a huge role in holding us back:

So how do we, as the “diabetes ONLINE community,” remove the Internet component and bring advocacy offline?

Not everyone has to be an advocate for diabetes, and not every advocate raises awareness in the same way. But every voice matters, and no effort is too small. How do you advocate for diabetes? And how can we, as a community, help move your efforts forward?

Medtronic Diabetes Advocate Forum: Meaning Trumped Marketing.

A few weeks ago, I was invited to join some of my advocacy colleagues for a meeting in Los Angeles, CA at the Medtronic Diabetes headquarters.  This event was put on by the teams at Medtronic and Bayer, and they covered travel, lodging, and expenses for attendees.  (Disclosure out of the way.)  The agenda included “interactive sessions on the latest diabetes technology, more time to pick the brains of our executives, and a long discussion about diabetes social media advocacy.”  The meeting took place this past Friday and Saturday.

The beginning of the summit was admittedly not my favorite, but felt like a marketing necessity.  There were presentations by Katie M. Szyman (President, Medtronic Diabetes) and Marc O’Donnell (Vice President, Regulatory Affairs at Medtronic) that, despite the accessibility of the presenters and how they made themselves available to a group of advocates, felt somewhat sales-pitchy and on occasion, defensive.  I understand that sales need to be pitched and regulatory discussions need to be carefully had, but hearing about the new Enlite sensor or hearing about people with diabetes talked about in marketing terms (for better or for worse) is not my personal mission.

Even though I’d been invited to the previous two summits, I wasn’t able to attend due to work, so this year was my first time.  The fact that the team at Medtronic kept me on the invitation roster spoke volumes to me, because they didn’t let my existing competitor relationships [disclosures] preclude me from being part of an advocacy discussion.  Representatives from Medtronic encouraged attendees to voice concerns of all kinds (good and bad) and didn’t shy away from difficult conversation topics (like “Calling the 530G an ‘artificial pancreas’ was misleading,” and “Your sensor hasn’t been a good fit for me.”)

But meaning quickly trumped marketing, and that remained the theme of the event.

What cemented this meeting as one of the most powerful ones I’ve attended in some time, was the discussion lead by Dr. Francine Kaufman.  When she started talking about the needs outside of our privileged bubble, highlighting how diabetes is managed in different countries, a heavy cloak of awareness and responsibility seemed to fall over the attendees.  Boxes of Kleenex were passed around as we were reminded, as a group, how “perspective” is defined by “access.”

What happened later in the afternoon was nothing short of amazing, when the room full of advocates took the conversation that Fran started and owned it.  A discussion about Spare a Rose efforts for 2014 became an exercise in implementation as people brought their advocacy strengths and assets to the table and offered them up.  All voices were heard and a group oft-frustrated by a lack of forward movement at meetings like this took action to ensure that more action would be taken. In short, a plan was needed and a plan was put into place, with details (and THANK YOU’s) to be issued in the coming days.

This summed up the entire summit for me, in one Tweetable-bite.

It was a privilege to be in the room, for many reasons, but largely because it was a privilege to try and make the voices heard of those who weren’t in the room.  It can be scary to speak up.  It can be intimidating to try and make a difference.  And the endless threats of rules and regulations can keep ideas from blooming out of fear.

But honestly?  We should fear inaction more than action.

Thanks you to Medtronic and Bayer for hosting these discussions, and to the DOC for having them.

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