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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.

Looking Back: Dining Out.

I love going out on the town for the night
And having a meal by a soft candlelight
(Because I know, at a restaurant, meals are yummy;
For the food isn’t prepped, touched, or cooked by me.)
But to dine with type 1 can be quite complex,
Because restaurant food has a whole set of specs
That require some SWAG’ing; carbs seem to inflate
As you wonder what’s really down there on your plate.

“Excuse me, but does the salmon have a glaze?
Is it covered in sugary, caramelized haze?”
I ask of the waiter, tuning in as he states
That the glaze can be brought on the side of my plate.
My soda arrives, and I ask, “Is this diet?”
As I bring the glass up to my lips just to try it.
“It is,” he responds, and he watches my face
As I try to assess the fizzy soda’s taste.

Moments later, I notice that something is wrong.
I’m not sure my thoughts are where they belong.
My brain is all foggy, my hands feel so weak,
I’m having some trouble with words while I speak.
Did I bolus too early?  Did I miscount the carbs?
Is it something I did to make Dex go on guard?
There are glucose tabs right here in my purse,
But I know that I’ll feel better if I have juice first.

My husband is almost up, quick as a blink
To go to the bar to grab something to drink.
But it’s not a big deal; I chomp tabs while I wait
For the waiter to come back and fill up our plates.
He comes back for our order, but I’m not quite ready.
My Dex shows my numbers as slightly unsteady,
With double-down arrows beaming; so unkind.
“Can I have an orange juice, if you don’t mind?”

I see his confusion. The gears start to grind.
I hear the thoughts churning inside of his mind.
“She didn’t want glaze, and her soda was diet.
The bread was right here, but she didn’t try it.
What’s up with this girl? Selective sweet tooth?
Whatever. My job is to bring her the juice.”
He walks off to the bar to bring back something sweeter
While I quickly confirm the Dex trend with my meter.

“Here you go,” and I down it in one giant gulp,
Not caring for class, or a straw, or the pulp.
“Thank you so very much,” I reply with a smile
And try to regain some semblance of my mind.
My husband distracts me with soft, gentle chatter
While the orange juice fixes the thing that’s the matter.
And the moments that pass are quick in real life
But it’s hard for him, watching a low change his wife.

A few minutes later, things are as they were.
I’m no longer sounding all drunk, with a slur.
The waiter comes back with his menu pad out
And we tell him the entrees we’d like to try out.
Our date night moves forward without any trouble.
(The waiter’s confused, but i don’t burst his bubble.)
It’s not a big deal; it was just a quick thing.
But it’s always a riddle, what diabetes will bring.

(This poem was originally published back in January 2012.  It’s from the past.  And I am in Canada, where the poutine lives.)

Guest Post: Adventure D!!

Hi!  I’m on the road again this week (ADA and a quick visit to Canada and then down to Texas … hence the digital tumbleweeds here), but thankfully, a good friend from across the pond has stepped in to say hello and share a little bit about why she’s created a really col project called Adventure D.  Please welcome the lovely Anna Presswell and check out her story.

*   *   *

“Rare.”

Not a word you might expect to hear all that often from the lips of a child.  But one I was using routinely by the time I was knocking on the door of my teens when describing my life with type 1 diabetes. “Not many kids have it,” I would say, excusing people of their lack of knowledge; softening their embarrassment as the quizzical looks on their faces gave them away.  Reflecting back, I suppose I was also describing the number of occasions I had connected with another person with diabetes. Diagnosed at four years old, I’d lived half of my life with diabetes by the time I met another person my age with type one, and it was utterly implausible that we be allowed to speak to one another – what with him being a boy, and everything.

It was two decades later, now cocooned by the warmth, support, and sense of belonging that I had discovered in the DOC, and with at least 200 go-to friends with diabetes in common, that I realised how isolating diabetes could be. I guess it’s true what they say:  sometimes you just don’t know what you’re missing.  It was around the same time that I first made the commitment that whatever I did with my life it would involve getting shoulder-to-shoulder with other people affected by diabetes, so that I never had to use the word ‘rare’ again.

We’re not rare.  We’re incredible. We just aren’t always connected.

So when my brother, Chris, a seasoned kayak and sailing instructor, told me that he’d been thinking about a project to bring people with diabetes together, I was all ears.  Chris had been told some years before that people with diabetes would struggle to take on some of the adventurous mountain hikes he so loved, because of the drastic effect it would have on blood sugars.  Well, for Chris that explanation just wasn’t good enough. To sit it out: because of diabetes?  No.  That simply won’t do.  So we sat.   And we planned.  And we hatched.  We moulded thoughts and bent ideas as to how we could create something for people affected by diabetes, by people affected by diabetes.  And with a touch of time, a dash of courage and a pinch of determination, Adventure D was born!

Adventure D aims to bring people affected by diabetes together for the purpose of peer-to-peer support, education, and to enjoy adventure activities in an environment mindful of the challenges that diabetes can pose.  And because my family were raised with diabetes being something the whole family helped each other to take on, Adventure D also includes family members and loved ones – people who also live diabetes day-in, day-out – at our events.  So have you ever wanted to try ocean kayaking?  Do you want to feel the elation of standing on your first wave?  Or feel the excited chill of the ski-slope air on your face? Then check out our website and come and join us for our first event, a ‘Get Kayaking’ weekend in Chichester Harbour, West Sussex, England.  The weekend will have you learning everything from basic skills to advanced techniques, and playing (um, winning!) water-based games.  All equipment and tuition are included, as well as all carb-counted meals which are prepared by the on-site catering team.  And the accommodation? Well, what was once a military vessel has now been converted to a high-spec floating conference centre with 180 degree views of the harbour.  Sound good?  We think so, too.

Just take a look at the photos!

So come and join us, get connected, meet other people with diabetes, and let your adventurous side out!

You can find us on our website, on Facebook, or on Twitter or look out for updates on my blog, which led me to the DOC.

*   *   *

A little bio action from Anna:  “My name is Anna and I am many things: I am a wife, a daughter, a sister and a friend. I’m a wannabe surfer, an animal lover and an amateur photographer whose very best work is only slightly North of mediocre. I love the outdoors, naps and chocolate of any kind.  I am also a Type 1 diabetic (insulin dependent, juvenile onset, the beast has many names).  Diagnosed in Germany at four years old, it was only as I turned 27 and started blogging at Insulin Independent, that I discovered the advancing powerhouse that was the diabetes online community.  Now, living in Hampshire, England, I have the honour of having met and become friends with countless people affected diabetes, thanks to that come-as-you-are community spirit.”

Hypo Effery.

BEEEEEPBEEEEEPBEEEEEP!!

My purse start vibrating in a panic.

79 mg/dL and two arrows down – how the hell did that happen?  I just dropped my daughter off at preschool.  My blood sugar was 139 mg/dL before leaving the house with a steady, easterly arrow.

I pulled the car over and put on my hazard lights so I could bust out my glucose meter.  (Oh hell yes I treat low blood sugars purely based on a Dexcom reading from a trusted sensor, but this sensor is on Day 14 and due to be changed this afternoon, so my trust was getting rusty.  Trusty?  Rustworthy.  Bah.)  Meter said 68 mg/dL.

The symptoms, which weren’t strong when I pulled over, were starting to edge in.  Shaky hands and blurred vision (almost wrote “blurred bison,” which sounds like a band name) paved the way for clammy skin, which let the fog of hypoglycemia settle into my brain.

Fine then.  I reached into the glove compartment for the ubiquitous jar of glucose tabs.  Chomp, chomp on four of them only to realize they aren’t Glucolift but instead the generic chalkified glucose tabs from CVS and became grossed out.  The low symptoms were intensifying as I sat on the side of the road, so being picky about my glucose sources wasn’t an option.  Chomp, chomp on another tab, wishing I could somehow keep a soft-serve ice cream machine in the glove compartment instead.

Moments pass.  I’m still buckled into my car, eating snacks, watching cars whiz by.  The Dexcom finally shows an upward climbing arrow.  My hairline feels less clammy.  The shape of the steering wheel and the radio control knobs come back into sharp focus.  Better.

“Did you check your GPS?” my mom asks me whenever we’re about to get into the car together.

“Mom, it’s a CGM.  And yes, I did check it,” I reply, usually laughing because no matter how many times I tell her it’s a “CGM,” she still calls it a “GPS.”

But as I think about what may have happened if the low symptoms hit in full while I was driving instead of after I had pulled over, GPS might me just as accurate, giving me the location, in context, of what the hell my blood sugars are doing.

 

Video: Diabetes Complications.

I feel like when people are diagnosed with diabetes-related complications, all of a sudden they feel like they have to hide somewhere and they aren’t allowed to talk about it, so they’re not able to get the support that they need to deal with this new diagnosis.

My macular edema diagnosis didn’t mark the end of my life as a healthy person; it just marks the beginning of a new journey with a new health condition.

You owe it to yourself to live the best life possible.  Even with whatever you’ve got.

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