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Posts from the ‘Diabetes Online Community’ Category

February Comes Fast.

Chris always sums up Spare a Rose in the same way:  “It’s so simple. So sticky. And so important.”

Because it is.

February is fast-approaching (Don’t act like you don’t know – it’s October today!  Time refuses to stand still.) and now is the time to start thinking about how you and your company can participate in the Spare a Rose campaign next Valentine’s Day.  February 1 – 14th.

Yeah, I said you and your company.  This topic came up on a call a few months ago, about opening the campaign to offices and employers.  “Earn a casual dress day for your office!” sort of sentiments (except when I pitched this idea to a super cool Austin PR firm, it sort of backfired because their dress code is already casual, so I recommended a Wear a Tux to Work day).  Put an empty flower vase on the front desk with a sign that says, “Best bouquet of roses I’ve ever received!!” with a link to SpareARose.org.  There are a lot of fun ways to bring awareness and funding for Life for a Child.

Also, now is a perfect time to bring up Spare A Rose to media outlets who might be planning their editorial calendars for next year already.  If you’d like to see the campaign highlighted in your magazine of choice, reach out to the editor and let them know about it.

You can sign up to receive updates on the campaign here.

You can learn more about the In My Office ideas here.

Want some beautiful images?  Here you go.

Here’s a handy FAQ about Spare a Rose.

It’s a simple sentiment with tremendous outcome:  spare a rose, save a child.  Thanks for thinking ahead to February and being part of the solution.

 

Seeking PWD Peers.

Two weeks ago, I was in Vienna for the third annual European Animas Blogger Summit.  (I’m a blogger, and I have a working relationship with Animas.  Only missing the European part, and I can’t even pretend because I was once told that my attempt at a British accent was akin to Dick Van Dyke’s Mary Poppins attempt.  So, no.)  Other folks who were in attendance have written about their impressions and take-aways, but the discussions we had can’t be concisely covered in a blog post.  It would take several blog posts.

So, in keeping with that theme, this blog post is centered around one of the discussions that embedded itself into my head:  connecting with PWD who are living with type 2 diabetes.

It started with a conversation about the #walkwithd campaign.

“The Walk with D campaign is about showing people what diabetes is really like, peeling back the stigma and reinstating dignity.  We do this already through blogs and Twitter and Facebook updates and all of the photos we share with our community and society as a whole.  The hashtag is simply a way to link some of these discussions, and to share more.  But, in looking around the room, I see a lot of kindred spirits who are dealing with type 1 diabetes.  Where are the type 2 voices?”

I don’t know much at all about life with type 2 diabetes. Sure, I can look it up on dLife or WebMD or some other resource that gives a high-level definition of type 2 diabetes, but that doesn’t give me a sense of what it’s actually like to live with type 2 diabetes.

My lack of perspective used to be rooted in straight up ignorance.  Diagnosed with type 1 diabetes as a child, I actively sought to separate myself from my type 2 peers because I didn’t want people thinking “I did this to myself.”  And I have to put that statement in quotes because it’s such a crummy one, now that I know so much more about the differences and similarities between all types of diabetes.

It’s difficult to talk about how I felt when people lumped type 1 and type 2 together.  I’m embarrassed to admit these things.  The diseases are different in their origin but so similar in how they map out physically, and more importantly, emotionally, and I wish I had known that earlier.  I wish I had been more supportive of my type 2 peers.  I wish I had known how they felt.

And that’s the part I truly want to better understand.  How does it FEEL to live with type 2?

Rachel at Refreshing D was one of the first people who had type 2 diabetes who I really got to know.  Through her columns at dLife, her blog, and through becoming friends, I had a reliable window into life with type 2 diabetes.  I don’t know if I can properly articulate how much she has taught me, or thank her for being brave enough to share her story.  With Rachel as my gateway to understanding type 2 diabetes, I connected to and learned from people like Travis, Sue, Kate, and Bob.  People who live with diabetes – just not the type I’m familiar with – but who I need to better understand in order to best understand this community.

“I wish more people with type 2 would raise their voices.  How can we encourage them to?  How can we empower them to?”

The discussion during the blogger summit was frustrating in that none of us had a clear answer, but we realized that the responsibility for creating an empowering and inviting environment was on the DOC, both globally and in our respective countries.  We, as people with type 1 diabetes, are smaller in number in society but we tend to dominate the Diabetes Online Community, and I think it’s up to us to help pave the way for people with type 2 diabetes to feel comfortable coming out of their diabetes cave and sharing their perspectives.  Stigma runs rampant regarding diabetes, but we can help change it from the inside by getting to know our peers.  Finding what unites us can help us better understand one another as people and can help us all feel like we’re part of a community that has our back.

If you’re living with type 2 diabetes and you’re reading this post, please share your journey.

I walk with diabetes, but I don’t walk alone.  And neither do you.

CGM in the Cloud and All Over the Web.

diaTribe has posted a new column about CGM in the Cloud and the why (and why not) of clouding your Dexcom data, and thanks to a lot of input from people in the diabetes community, there are a dozen different perspectives.  Click over to diaTribe for a read.

And diaTribe isn’t the only site talking about CGM in the Cloud this week.

Why wait?  #WeAreNotWaiting.

Guest Post: Diabetes and Our Relationship with Food.

Georgie is a twenty two year old university student and future French teacher living in Melbourne, Australia. She’s had type 1 diabetes since 2010 and has become very talented at hiding her pump in various dance costumes.  She hates her pancreas but loves the DOC, and is in the very slow process of creating an organisation Down Under to help those with type 1 diabetes and eating disorders. 

I feel lucky that I’ve had the opportunity to spend time with Georgie (she is my favorite holiday card buddy), and today I’m very lucky to have Georgie guest posting about disordered eating, diabetes, and the way we view food.

*   *   *

Sometimes I read things while procrastinating on the Internet that strike a chord with me. Usually they are quotes that revolve around cats and wine, but occasionally there is one gem that sticks with me. I read a quote recently while scrolling through Tumblr that read:

“We are prescribing for fat people what we diagnose as disordered eating in thin people.” – Deb Burgard, keynote at the 2011 NAAFA conference.

At first this quote didn’t surprise me – it seemed quite obvious really, I muttered a ‘duh’ and kept scrolling until I hit the funny cat pictures instead. It wasn’t until I was sitting down to my dinner that night, slowly adding up my carbs, and berating myself about my 16.8 (288 mg/dL) that I realised that there was a reason for that. I was identifying with that quote so strongly not because I am morbidly obese and have had doctors make me count my calories, but because I have type 1 diabetes and “disordered eating” is basically my normal.  We are asked to weigh our food, count our food, know everything there is to know about our food, and yet somehow keep a healthy attitude towards what we put in our mouth every day. Some people manage this – but I know a lot of us don’t!

People with type 1 diabetes are set up for a weird relationship with food, no one seems to mind, and it’s driving me crazy.

“You have to see what’s on your plate as numbers!”

“Don’t eat that, that’s bad!”

“What do you mean, you’re not weighing your food?”

We are doubly lucky though – not only do we have healthcare professionals telling us what to eat, we also have the Food Police!

We all know the Food Police. They can be sneaky – they come disguised as your work colleague, your neighbour, or your aunt at a family dinner. They usually come armed with “lots of knowledge” about diabetes, because their third cousin’s grandma had diabetes, and she “DIED because she ate too much cake!!!” It hides under the guise of concern, but mostly it’s a nosy way to exert control over you while claiming that it’s for your own good. At one point I had a member of the Food Police say, “What if I hadn’t been there to tell stop you eating that? Haha!” Oh, I don’t know, I would have eaten this muffin anyway, but without the omnipresent feeling of shame?

The only other group of people that I know whose food choices seem to be up for public comment are obese people – which is why I think the quote above stuck in my head. We are both told to live a life that revolves around counting our food, and people in our life feel the right to comment on whatever is on our plate. Is it any wonder that some of us start to see food as the enemy? The most ridiculous thing about this is that we CAN eat what we want – we are just like anyone else, except our pancreas comes in syringe/pump form. Would you ever look at the food on a twelve year old’s plate and say “There’s way too many carbs on that plate – remember, you’re trying to lose weight”? No? Then why do you feel obliged to say it to a child who happens to have type 1 diabetes?

Food shouldn’t just be a number; food is there to be enjoyed! I look at a piece of bread and I see “15 grams,” but I should also see “I am full of delicious grains to get you through the afternoon” and “Damn, I taste delicious with some avocado.”

Food is not inherently bad or good. Did your donut creep up on you during the night and rip out your pump site while letting out an evil cackle? The only labels food should have is a Post-It saying, “Eat me, I’m delicious.”

Food is food – what you eat does not define your worth as a person, and leading on from that, what you eat, how much you weigh, and what your hba1c is does not define how “good” of a diabetic you are. We HAVE to stop looking at our A1Cs, our weight, our food choices, and our insulin dosage as something that we can measure and evaluate ourselves against.

How is that healthy? Disordered eating doesn’t necessarily mean an eating disorder, it means eating in a way that could or does harm you physically or psychologically,  and I’m pretty damn sure that some of the practices that healthcare professionals are advocating do not create healthy and balanced attitudes towards food.

When I was volunteering on a kids’ diabetes camp last year, a twelve year old girl was sitting next to me at supper and wouldn’t eat her cookie.

“Why honey? The dieticians told you the carbs, right?”

“Yeah … but Mum won’t let me eat stuff like this at home, she says it’s bad.”

“Food isn’t bad or good, food keeps us going and it’s delicious – don’t you like it?”

“Yeah I do, but … Mum would be so angry – is there an apple or something instead? I can’t eat bad foods.”

My heart nearly broke – this girl, already under pressure from society to look a certain way, can’t bring herself to eat a cookie because her Mum, and no doubt her healthcare team, has told her that foods are ‘bad’ and ‘good.’

I appreciate that it’s a very fine line for carers and healthcare professionals, between keeping their patient healthy and not causing them to hate everything they put in their mouth – but food is not the enemy.  Food is not something we should judge ourselves by – we have to stand up for ourselves. Don’t let the fact that we’re acutely aware of what we’re putting in our mouths affect our enjoyment and love of food.

Food is not the enemy, our pancreases are!

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You Are HERE.

Why are you here?  Why do you read diabetes blogs?  What made you want to start a Twitter account and participate in diabetes chats?  What makes you want to attend diabetes conferences?  What inspires you to organize meet-ups with local PWDs or advocacy walk teams?  How come you read diabetes articles and news sites and magazines? Why do you want to connect with others who have diabetes?

Why are you HERE?

I’m here because I have diabetes.  My impetus for starting a diabetes blog was because I didn’t know anyone else “in real life” who lived with type 1 diabetes and that feeling of isolation was starting to gnaw at me as much as my fluctuating blood sugars.  Back in 2005, there weren’t a lot of people sharing their stories, so I connected fiercely with the few who were.  (And if you’re wondering, I do still talk with Dee, and Violet.  I miss Tek and haven’t heard from her in ages.)

Before the diabetes online community was a “thing,” I felt like the only diabetic in the universe.  It felt good to be proven wrong, over and over and over again.

I started this site because I wanted to find some kindred spirits.  And that’s the reason I continue to write, and to try and connect.  It keeps the loneliness of chronic illness at bay and makes doing this diabetes maintenance thing easier.  Even though so many healthcare professionals think that my A1C is the most important marker of my success as a person with diabetes, I think my happiness is, and connecting with my PWD peers keeps me happy.

It’s a personal preference thing, and that’s my personal preference.

There are people who understand what you’re going through.  That’s the whole entire point of the Diabetes Online Community, to give us that “me, too!” moment that helps make diabetes suck less.  You are not the only person living with diabetes, or caring for someone with diabetes.  You are not alone.   The point is not pageviews or advertisements or conferences or “perks.”  If that’s why you’re here, I wish you all the best, but that’s not why this community started, or why it continues.

There’s no “how to” list when it comes to engagement.  You just have to DO.  Do it.  Engage.  And just as with diabetes (or with life in general), it’s important to manage expectations.  Give yourself time to find that kindred spirit, those PWD peers.  Feeling connected is not as simple as logging on, but becoming part of the discussion, however big or small.  Please remember that your voice is important, and it doesn’t matter how many people are “reached.”

The point is connecting with your own, personal community and you are at the very center of that experience.  It’s about you being reached.  It’s about you.  YOU.

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.

So Many Things!

A Friday Six on a Wednesday!  Because why the hell not.

The FitBit obsession.

Renza talks about the messaging of diabetes, and what we can do to get it right.

Here is some damn sneaky research.

Seb is still running. And I’m still supporting the hell out of him, because he’s incredibly dedicated. You can still support him, too.

I am having the hardest time not filling our home with everything Murray, by way of Derek Eads.

“It’s a day to remember those who were lost. For me it’s a reminder that I’m lucky to be alive.”  Amazing post from Carly about a medical emergency on 9/11.

Are you in the Los Angeles area?  Diabetes Sisters is coming to LA on October 24th, and I’ll be part of the event, alongside some of my favorite DOC people (Hi Cherise, Manny, and George!).  Hope to see you there!

That same weekend, up in Anaheim, CA, the Children With Diabetes team will be holding a Focus on Technology conference.  There will be a whole session on setting up your CGM in the Cloud rig – don’t miss it!

Coming Together as a Community – a great piece from diaTribe’s editor-in-chief Kelly Close.

There is no such thing as a “free food.”  Sort of.  New column at Animas.

“today, i felt parts of the monster within myself.  today, i felt parts of the hero within myself.”  Excellent post from Heather Gabel about the activated patient.

THE SEA OF TREES found its way into People Magazine last week.

And these – THESE VIDEOS ARE AMAZING.  Melissa, you are the Weird Al of the DOC.  :)

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