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Posts tagged ‘diabetes hands foundation’

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.

Guest Post: Someone Who Understands.

Part of what drew me to the idea of creating a diabetes blog was the search for, and the hope of finding, people who understood.  Google was a dark abyss of bad news and depressing statistics; what I needed was to connect with others who were living life, with diabetes along for the ride.  That same connection still feels necessary, now almost a decade later.  This morning, fellow PWD Heather Gabel has offered to guest post about the search for and the becoming of Someone Who Understands.

*   *   *

Holidays are meant to bring family, friends, and loved ones together. It is the nature of holidays to feel warm feelings, give hugs and thanks, and to eat all the treats you can.

I would be fibbing if I said the ‘Holiday Spirit’ didn’t consume me each year. I start preparing for December 25th on November 28th. The giving and the hugging and the loving fills me with a sort of joy that I don’t find as readily accessible in other times of the year.  However, ever since diagnosis, which for me was at 11, there has always been something missing. One piece of the puzzle that until last year I could not seem to find.

Pardon this cheesy attempt to convey the overall sentiment, but to feel complete during the holidays, all I want for Christmas is … Someone Who Understands.

I want someone who knows what it is like to wake up in the morning on Christmas and do diabetes things before joining the family. I want to talk about what it feels like to miss those moments of laughter coming from where you would have been if diabetes didn’t take those minutes away.  I want someone who has been through the “Should you be eating that?” and that saddened glare when mom sees that you have stolen one of Santa’s cookies.

Connecting with someone who understands is so powerful during the holidays, when what makes you different feels isolating and you really get the FOMO (fear of missing out) going on.

Last year I stumbled upon something that filled that gap. What was it you ask? Why, the DOC [Diabetes Online Community] of course.

This outstanding community of individuals, via Twitter, Facebook, blogs, TuDiabetes, Glu, Children with Diabetes, or other social networking site, has connected me to a SWU (Someone Who Understands). And, to even more capture the holiday spirit,  the DOC allows me to be someone else’s SWU.

The DOC is a birthplace of friendship. Year after year, you get to know your DOC friends more and more.

I was talking with Mike Lawson about this recently and he described something I hadn’t really addressed before. He said that before he started going to conferences and meet ups, it felt like he had two distinct groups of ‘friends’. His “friend-friends” being those he physically spent time with and his “online-friends” being those in the DOC. When he started going to conferences and meeting face to face with the people he knew so well online, the groups began to merge. The lines between them became fuzzy and overlapping.

As a PWD (person with diabetes), and a PWD who has now attended four diabetes conferences, I couldn’t agree with Mike Lawson more.

Meeting people you know well through online platforms feels strange and almost backwards. You know their secrets, their fears, their hopes and dreams, and then you meet them and begin small talk because you don’t know much about their home life, their job, responsibilities, their family.

Relationships develop online, but they seal in person.

As a PWD who is 23, the holiday gap is not entirely filled by the DOC, and this is why: finding a Someone Who Understands who is close to my age is incredibly difficult online.

I don’t always feel a need to talk to someone in my exact same boat, usually if you have diabetes that is sharing waters and thus close enough. But there are times when I want to connect with a PWD who is wondering what to do after college, how to land a entry level job that offers good enough insurance, how to wear a bikini with both CGM and pump sites hooked in, etc.

There are programs out there bringing together 20-somethings with diabetes. There is College Diabetes Network, Friends For Life, Students with Diabetes, Facebook groups such as Females w/ Diabetes, Diabesties, etc. There are mentor programs like Insulliance via Beta Connect and fundraising young adult groups such as JDRF YLC chapters. BUT, there still seems to be something lacking.

It is a feeling of solidarity.  Where is a core group of PWD’s going through life post college?  Where do we meet up? How do we stay in contact?  I am certain that there are groups of friends with diabetes in the 20 something range who would completely disagree with me. You interact constantly and feel supported by your peers. That is wonderful! Where do I sign up?

If this is your circumstance, I urge you to grow your group.  Find ways to connect with others who are blogging and tweeting and Facebooking. Make a blog, yourself, and invite others your age to read it.  (A great example of someone who recently started this process is Walt. He is a 20-something who has yet to meet another PWD in person. He couldn’t find the voice, so he started it.)

During this holiday season, the DOC could become greater, more powerful. We could reach out, and welcome floaters and lurkers and plan to meet or attend the same conferences. We could inspire them to begin sharing their vital voice.  It could be a merrier year in the DOC, if we collaborated and sought out a 20-something group of advocates, writers, athletes, innovators, students, shakers, and makers.

I feel certain that there is complete openness for something like this to develop within the DOC. We just have to begin moving in that direction.  (Hey veterans, any ideas of how to begin?)

If you are a 20-something and write a blog, leave your URL in a comment below and share if you are interested in forming a solidarity group. How can we better support each other?  Moving forward through life’s many stages would feel more safe if we could all experience it together.

If you are interested in reading some diabetes blog’s by 20 somethings:

Walt’s Blog
Courtney’s Blog
Heather’s Blog
Elizabeth’s Blog
Jen’s Blog

*   *   *

After graduating from UC Berkeley with a degree in East Asian religion and philosophy, Heather Gabel joined the Diabetes Hands Foundation team in fall 2012. While working there, she has become greatly involved in the diabetes community, both online and off. Heather founded an organization called Beta Connect that inspires positive language practices in people with diabetes through the implementation of mentorship programs at hospitals and healthcare centers.

And please, if you’re a 20something blogger living with diabetes and you want to find, or be, that Someone Who Understands, please leave a link to your blog in the comments.  Make the search easier!

The Friday Six: Poutine Edition.

I have some very useful, informative links to share today, but before I do, I have to admit:  I don’t like poutine.  It looks like discarded fries that someone fished out of a garbage can.  My husband loves the stuff and is trying to convince me that it’s a delicacy, but I’m not converting.  Being in Montreal this week for the Canadian Diabetes Association conference has shown me that my opinion on poutine goes against the grain, though, and I should keep quiet about my disdain (even if it rhymes).  I wish I liked it, though, because it’s found easily on the menus up here.  What’s not found?  American cheese.  (Carey, Wade, and Sandy:  If you’re reading this, you’ll be happy to know I did not order American cheese on this trip.  I’ve learned my lesson.)

Okay.  Links now.  And this Friday, I finally have an actual “six.”  –>

  1. There’s another TCOYD conference taking place in a few weeks, this time in the ABQ.  If you want to break bad with the TCOYD team, you can sign up here.
  2. The Big Blue Test is taking place now!  All you need to do to participate is check your blood sugar, exercise, check again, and then share the results.  “Each Big Blue Test entry you log between now and November 14th triggers a donation on your behalf to nonprofit groups that are providing life-saving supplies, services and education to people with diabetes in need.”
  3. The mySugr Junior app is ready for downloading, and this kid-friendly version of the Companion application is gorgeous.  I’m looking forward to taking it out for an extending “revisiting my childhood” spin in a week or two, but for now, just wanted to make you aware that it’s available in the US, and looks awesome.
  4. If you’re in the Boston area, you can catch two fantastic writers (and advocates) at the BBF [Boston Book Festival] Unbound: Writing About Health session taking place on October 19th (this Saturday).  “Cheryl Alkon (author of Balancing Pregnancy With Pre-Existing Diabetes) and Laurie Edwards (author of The Kingdom of the Sick) will offer strategies for those looking to begin telling their own medical stories, including: how to combine memoir and personal narrative with research; how to navigate issues of translation and accessibility in medical writing; and insights about the importance of social media, whether to self publish, and what happens after publication.”
  5. Also, there’s a study taking place about diabetes and romantic relationships.  Here are the details: “Announcing the ROAD Study (Relationships of Adults with Diabetes)!!  Researchers at Carnegie Mellon University are studying how young adults with type 1 diabetes navigate romantic relationships.  If you are involved in a romantic relationship (dating, living together, married), are between the ages of 18 and 30, and have type 1 diabetes, you are eligible to participate in this 30 to 40-minute phone interview.  Please email Dr. Vicki Helgeson at vh2e@andrew.cmu.edu for more information.”  I’m not involved with the study, but am helping to pass along the research information.
  6. And this post, I love, simply for the last request that we “be gentle.”  Thanks for sharing this, Meri.  (Almost called you “Merci.”  Which stands, as well.)

 

Link Circus.

My email inbox is swollen with resources and links and stuff to share, so I’m plunking it all down here before I forget.  Yes, that’s my system:

  • I’ve been following Kelly Close’s experience on the artificial pancreas with great interest, and you can, too, by checking out her Twitter feed.  The photos and video are amazing.

  • (And if you sign up to receive the diaTribe newsletter, you’ll be eligible for a free ebook about Targeting a Cure.  Details here!)
  • Gorgeous post from Melissa at Sweetly-Voiced:  “To people with diabetes, the word complication is code for “quietly life-shattering.” It’s a code word for failure.”
  • There’s a new article in JDRF Countdown about What T1D Teaches, about the lessons we learn from diabetes.  “What you learn overall, as a person with T1D or as a loved one who cares for someone with T1D, touches so many aspects of your life other than the food on your plate or the insulin in your syringe. Living with T1D, in any capacity, gives a perspective and insight that doesn’t live within the box of T1D.”  which contributions from some lovely folks in the DOC, like Meri, Pete, Leeanne, Samantha, Kelley, Kate, and Sean.   (And this is my favorite quote, possibly ever:  “Screw this, I’m eating cake!”)
  • I can’t unsee it.
  • Californians debate over who can administer an insulin injection at school goes before the CA high courts.  As someone who was in grade school before 504 plans came into play, I’m amazed at what it takes to manage the complexity of diabetes in today’s school system.
  • “But for crying out loud, if you throw me in a race with 1,000 other people and I’m clad in sunglasses and a hat and essentially draped in anonymity and more-or-less looking like everyone else about to make a run for it?  I’ll break out in hives, riddled with fear and panic.”  More about my fear of public exercising over at Animas.
  • Non-diabetes related, and ripped from The Bloggess, but I had to share this comic because it scared the pants off me.  It’s safe for work, but might make you scream.
  • Are you app-happy?  (Or are you an apphole?)  Talking about some of the apps that I actually use, over at The DX.
  • I think what strikes me most about this video of a teddy bear surgery is the voice of the narrator.  He seems to feel every bit of the pain of the teddy bear, and at the same time, he doesn’t care in the slightest.  Totally memorizing.
  • 10,000 views equals out to  $10,000 donation to the Diabetes Hands Foundation – can you help?  Sharing the link is awesome, but watching it a few times on your own is even awesomer (<– mangled English), so get on that.
  • “I think for me, the hardest thing about diabetes is that there are no days off.”  Short but poignant birthday post from my dear friend Karen.

I’m off to forever delete that animated .gif cartoon thing from my brain, because since I’ve watched it, I haven’t slept.  Or at least not properly.

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