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Posts from the ‘Diabetes Community’ Category

If I Knew Then: Diabetes Blogging.

I wish I had known, at the outset, what a “blog” was.  When Chris suggested I start one back in 2005, the face I made was as though he had shoved a lemon into my mouth.  “A blaaaaahgg?”

I wish I had known that things like SEO would matter – not on the “I need more page views” sort of nonsense, but in terms of being found by the people I was hoping to connect with.  I started blogging in search of others who understood what diabetes in real life was like, and in starting that journey, I picked a blog title that took poetic license into account more so than SEO.  (I guess I should have included ‘diabetes’ in the title, but where’s the fun in that?)

I wish I had known how privacy concerns would change over the course of a decade. When I first started writing about diabetes, I wanted other people to find me, and I was happy to have my real name attached to my writing.  (I also didn’t know any better.)  Openly disclosing my diabetes was an asset in my pursuit of diabetes-related employment (leading directly to my job at dLife) and I was fine with being Googled.  But over time, and with the realization of how pervasive the Internet is, I wanted a less-is-more approach for certain topics.  Not everything needs to be shared, in particular moments where my family is concerned.  We have made certain decisions, as a family, but it doesn’t mean they are the right choice for everyone.  There is no “right choice,” – just varying perspectives and levels of comfort.

I wish I had known how much I needed to connect with peers who have diabetes.  I don’t know what it’s like for every person diagnosed with type 1 as a kid, but for me, there was this long period between diabetes camp and finding the DOC where I felt isolated and alone with diabetes.  I didn’t realize the missing link between “pursuing” and “achieving” my health-related goals was peer-to-peer support.  Having access to a community doesn’t make me like diabetes, but it does make diabetes feel less like something I’m inclined to hate.

I wish I had known there would be trolls.  And that they don’t matter.

I wish I had known how my writing would affect the people closest to me.  When I write about a low blood sugar that scared the hell out of me, I forget that my mother and father also read about that same low blood sugar, and it still scares the hell out of them.  My diabetes, though existing in my physical body, reaches out into my family and might scare them at times, too.

(To that same end, I wish I had known my mother didn’t know that I could pre-write posts and schedule them to go live at any given time.  For a while, my mom thought a new blog post in the morning meant I was awake and fine.  I hated taking that security away from her.)

I wish I had known there would be growing pains as the community expanded and grew in numbers, scope, and passion.  When the DOC was small, it was easy to know all the folks involved and for people to support one another.  Now, there are hundreds and hundreds of amazing voices and perspectives, and keeping up is damn near impossible.  Even the best feed reader and the strongest coffee can’t get me through everyone’s new updates, so I read as many as I can instead of reading as many as there are.  Sometimes I don’t agree with everything I read, but isn’t that the point?  For the community to expand my mind and my perspectives?  For the DOC to be the red pill?

I wish I had known that the community would be bigger than one state, or one country, or even one continent.  I wish I had known that I would find kindred spirits in London and Melbourne and Burlington.  I wish I had known that these people were there the whole time, living with diabetes just like I was, and that I wasn’t nearly as alone as I felt at times.

I wish I had known there would be a lot of people asking “How do I get involved?” Because then I’d be prepared to tell them that involvement requires participation.  You want to get involved with the diabetes community, online or off?  You need to put yourself out there, even just a little bit, and make yourself available.  Volunteer at local JDRF or ADA events.  If support groups don’t exist, start one.  If you want to become more connected online, go to where many people are connecting (try #dsma tonight, even!).  Start your own website.  There are many avenues for diabetes advocacy, and the need for your voice is critical.

But what I did know is that every voice matters.  And every voice has always mattered.  This community is huge and continues to grow because it needs to, and because there isn’t someone who tells the story of all of us.  We tell our own stories, and the power is found in the collective itself.  One diabetes blog or website or newsletter doesn’t define this community (there is no “blog of Sauron”… wait a second …), so share your story – please!  Raise your voice.  And maybe the difference we make can be felt in more that just our own lives.

 

What’s Your Itch?

My “diabetes advocacy itch” has always been emotional health.  I’m not a doctor and I don’t know everything about type 1 diabetes, but I do know that I pay more attention to my diabetes when my head is in a healthy space, and being tuned in to diabetes improves outcomes, for me.  Feeling stressed, overwhelmed, upset … any kind of intense emotion like that seeds itself in my management attempts and upsets the apple cart.  (Or, to be more accurate, the islet cart, which is already a precarious one.)

I can have the most up-to-date, tech-savvy glucose meter on my bedside table, but I still need to motivate myself to load the test strip, apply the blood drop, and make decisions on the result.  I can have access to the best medical team in the country, but I still need to follow through on the appointments that are scheduled.  All the diabetes management tools in the world are rendered useless if I don’t use them.

Which is why the psychosocial side of diabetes interests me so much, because I feel that mindset can be as important as access.

(I realize that it is a privilege to have access in the first place – see how it comes back to mindset?  During the Spare a Rose campaign, I was repeatedly reminded to appreciate the insulin sitting in my butter compartment, which made me want to move the Life for a Child mission forward even more.  :: scratch, scratch ::)

Since the start of my blog back in 2005, I’ve seen people in the DOC space tackle a host of issues, because it was their “itch.”  Some people make their focus the FDA, or research, or fundraising for different organizations.  Some people want to move the needle on access to care, or exercise, or peer-to-peer support. Some people want to connect with PWD in their town, or have a network to discuss emotional issues with.  Others want to tackle public perception, or offline outreach, or influencing policy.  Just like the variables of diabetes, the advocacy and connection possibilities are endless.

Lots of different “itches.”

Every single aim is important.  Every voice is important.  Every person touched by diabetes is important.

So I want to know what your “itch” is.  What fuels you?  What diabetes issues are important to you?  We’re a huge community with the ability to do a lot of good, and it starts with knowing what you want to see “scratched.”  Maybe by sharing, we can find kindred spirits and get scratching.

Excited About Exercise … Again?

I’m climbing up on a new bandwagon.

Oh hell yes I am, and I needed one.  Over the last few weeks, I’ve completely fallen off in terms of exercise.  I could blame the endless winter weather, or work, or the endless fuzzy hairballs that are Loopy and Siah, but the truth is, I just got lazy.  Laziness turned into apathy, and apathy turned into a bad habit of not exercising much at all.

Not cool, because my blood sugars/weight/emotions fare best when I’m active.  Sounds trite, but it’s true.

I’ve taken up with a new fitness tracker, and one that motivates me less because it’s tracking activity and more because it’s connecting me with some folks to engage in some friendly “account-a-tition” (accountability + competitiveness).  And that’s the theme of this month’s Animas column:

“… so now I had a way of tracking what I was doing, exercise-wise, and a group of people to help keep me accountable.  THIS was exactly the boost I needed to pull me out of the exercise doldrums.  Now, instead of relying on my sometimes-hard-to-find motivation, I could turn to the DOC to help motivate me.  The application, much like other fitness tracker applications, allows people to cheer one another on, and share daily workout stats.  Were my fellow PWDs logging nine, ten, … thirteen thousand steps per day?  Were they finding ways to eek out a little more exercise?  I was inspired to follow suit. “

Click over to Animas for a read, and since I needed to keep the type of tracker brand-agnostic for purposes of that column, I’ll say here that I’m using a FitBit, and if you’d like to connect, let’s do it!

Seb’s Still Going.

A gorgeous video update from Seb and his team as he runs across Canada:

 

 

Go, Seb, Go!!

The Friday Six: FDA, Competitive Bidding, and Double-Dutch.

The weekend is SO CLOSE.  I’m wearing a path through this busy Friday with a Friday Six:

The FDA is listening, and if you want them to hear from you, you can join the discussion on Monday.  “Whether you want to just listen to the interview to get informed, ask relevant questions to better understand the medical device regulatory process or just speak your mind on the newest draft guidance document … you should join in the conversation.”  Join the FDA and the DOC for a discussion about glucose meters and test strips on Monday, March 31st.  You need to register to join this discussion, and you can do that here.

“We in the diabetes community need to speak out to argue that a. insulin pumps should be removed from competitive bidding and b. that if they remain in the competitive bidding program, CMS must use a different process to determine reimbursement rates, so that cost-saving does not stifle innovation.”  Catherine Price at A Sweet Life has a great post on the efforts to stop competitive bidding for insulin pumps, with simple instructions on how to raise your voice.  CMS is encouraging public comments, but the deadline to submit a comment is TODAY.  Read Catherine’s post for the how, and raise your voice here.

Yes, I’d very much like to consciously uncouple from diabetes.

Just add water.

A little March Madness, insulin-style … (refraining from making any “Sweet 16″ jokes because it’s too damn easy.)

This is mesmerizing.

So is this:

Low blood sugar as told by kitties?  OH HELL YES.

When they fight in the double-dutch machine, I lose it every time.

Making the most of your medical appointments?  Diabetes Forecast has some tips.

The permanence of performance.

The JDRF chapter in Boston is holding its masquerade ball to “unmask a cure” in a few weeks, and Briley has a great post on why it’s worth the price of admission.

Interested in supporting some fellow PWDs?  Check out this Novo Nordisk Tweet for details.

Diabetes is so gay.

Weekend. Bring it.

Learning from Mistakes.

I make so many mistakes, but I’m grateful for a supportive community that inspires me to learn … both from mistakes, and from their collective experiences.

(Holy crap am I sorry I talked so fast in that clip.  It was like NaNoWriMo hosted by one breath.)

The One About Balancing Diabetes

Life with diabetes isn’t about the diabetes itself, but about the life it’s a part of.  There is a life to be found after diagnosis, and it’s a good one.  Being able to take a blood sugar and remove the blame and guilt from that result, focusing only on the actions needed to correct that number or duplicate it?  Viewing diabetes as something that doesn’t define you, but instead simply serves to explain why glucose tabs live in your glove compartment and there is a pile of used test strips on the floor by your bedside table?  Being active and involved in a life that isn’t ruled by insulin but is instead fueled by it?  And realizing that diabetes isn’t something we can perfectly control, but we can do our best to manage it?

That’s the balance I seek.  Daily.

Last year, the team at Spry Publishing approached me about developing an idea, and from that discussion came Balancing Diabetes.  At first, I laughed (and cringed) at the title because I didn’t (and don’t) have diabetes balanced …

“I like the title, but it is a little tongue-in-cheek because I think I’m always searching for some semblance of balance.  Let’s make it about the journey that is the pursuit of balance, and not the achievement of said balance because I can’t pretend to have accomplished that.  Cool?”

And it was cool.

So I spent many months fleshing out ideas, interviewing friends and family who are touched by diabetes, and tried to write a book that wasn’t a “how to” (because I cannot write a how-to … still figuring out the self-how’ing) but more a “how we do.”

I wanted to write book to shine a spotlight on that journey.  This book is for the community of like-pancreased people who work hard to make diabetes a part of their bigger whole.

But I didn’t do it alone.

I owe several people a huge debt of gratitude for their contributions, patience, and trust as I worked through the writing process, weaving my words with theirs and trying to share our diabetes stories as a collective.  Several of these people have known me for ages, like my much-loved parents, siblings, and friends I grew up with, and many other voices are from the diabetes community, but every voice is one I’m proud to include. I wanted to make sure that, as proud as I am to have authored a book, I’m even more proud of the people I had the honor of working with.

Here are links to the online “homes” of so many of the contributors (this is not a full list of contributors – just those with online hubs):

Abby Bayer                   Dr. Jill Weissberg-Benchell
Adam Brown                     Karen Graffeo
Blair Ryan                          Karen Hoffman
Briley Boisvert                  Kim Vlasnik
Chloe Vance                      Lindsay Rhoades
Christel Aprigliano          Lindsay Swanson
Christopher Angell          Manny Hernandez
Christopher Snider          Melissa Baland Lee
Dana Lewis                        Ryan Noonan
George Simmons              Sara Nicastro
Ginger Vieira                     Scott Johnson
Harry Thompson             Dr. Sean Oser
Jackie Singer                     Dr. Shara Bialo
Jacquie Wojcik 

I’m so grateful for their contributions, because there isn’t just “one voice” that represents people with diabetes.  Every voice matters.  I hope that Balancing Diabetes becomes a resource for people who want confirmation that they aren’t alone, and to hear from the personal experiences of others.

The paperback book is now available for order on Amazon and Barnes and Noble, and digital (e-book) versions are available, too.  In efforts to not annoy the hell out of people who don’t want updates about the book, I’ll be updating the Balancing Diabetes page here at Six Until Me and the Balancing Diabetes Facebook page with links to reviews, news, and other awkward things.

The support from all of you has been tremendous, and so appreciated.  I’m really grateful to have a community like ours to share these moments with.  Thanks so much, and I hope you enjoy the book!

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