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Best Intentions Need to Stick.

Yesterday, my bag was packed with all kinds of good intentions.  My CGM sensor was only three day old, on a bright and shiny Toughpad to prevent adhesive rash!  The Dexcom receiver was fully charged!  My CGM in the Cloud rig was all charged up and ready to send my data into the cloud so that I would have a safety net while traveling to Washington, DC for the night.  Extra test strips and a fully charged Verio Sync meter?  I’M ON IT.  My wallet even had a few slips of Opsite Flexifix tape cut into band-aid sized strips and wedged into the change purse, ready to help hold down a wilting sensor.

Much best!  So intentioned!

… which did me zero good when I arrived in DC and my receiver threw a SENSOR FAILED error message after I went to the gym, forcing me to reboot before dinner.  Which meant I went to dinner without a CGM graph, which made me feel like I was sort of flying blind, but then I realized I left my glucose meter in my hotel room so I was actually flying blind without any way to check my blood sugar or calibrate my CGM during the meal.

… and then, sometime during the night, the sensor came loose and fell off my thigh.

All these good intentions? They need to STICK.

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!

*   *   *

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.

Not Guten for My Gut.

Skipping gluten was once classified as a preference, but the last few weeks have shown me – beyond a shadow of a doubt – that gluten is not “guten” for my gut.  It feels good, figuring out what was causing so much chaos, and I feel more human, and much healthier.

So all that “oooh, so healthy!!” stuff aside, going gluten-free while traveling is a pain in the ass.

Choosing gluten-free options isn’t unfamiliar territory for me, as we did skipped gluten entirely for Birdy for the first 15 months of her life.  I’m accustomed to carefully reading food labels while shopping, and I’m no stranger to reshaping recipes to fit nutritional needs.  But on the road, it’s hard to tell what foods contain what.

Last week, my family and I were in Vienna, Austria and it was my first experience with “needing” to be gluten-free and being away from home at the same time.  At home, I can read labels.  In Vienna, I couldn’t even read the menu unless it had English subtitles.  The language barrier, plus the dessert constants, made this trip a challenge.

“Let’s stop at that cafe and get strudel!”

“How about some chocolate cake?”

“The schnitzel looks delicious!!”

Everything in Vienna looked delicious, and covered in a layer of gluten.

Being gluten-free is a double-edged sword, but one “for good,” as my daughter would say, because rethinking carb consumption is (sigh) good for my blood sugars.  Avoiding the cream-filled desserts and opting for coffee instead gave me some really steady post-prandial blood sugars.  Not piling on the carbs made for awesome Dexcom graphs, but it was frustrating to have yet another food rule in place.

“I’m pissed off because it’s not a matter of choice.  I like choosing healthier foods, but I really don’t like being forced to because of all this gluten crap,” I said to Chris over yet another boiled-chicken-over-greens lunch.

“I know,” he said, diving compassionately headfirst into a plate of schnitzel.

And sometimes things just got all screwy.  Like on the plane ride home to Boston, where I avoided the roll of bread and opted for the chicken-and-rice meal choice, only to find out from the flight attendant that the sauce on the chicken contained flour (the presence of which was confirmed by my belly about 45 minutes later).  Or when I ate a bag of plane pretzels, forgetting that I needed to care about gluten.  My brain isn’t rewired yet and I need to constantly remind myself (see also:  grabbing a bite of Birdy’s breakfast cereal, only to remember that it contains gluten, and then spitting it into the garbage).

Because it’s not all in my head.  Removing the fog and bloating from my body’s repertoire is such a relief, and I have no desire to go back to the way I’ve been feeling over the last year.  The few times I made the mistake of eating something with gluten in it, I regretted it.  The return of bloating, headaches, abdominal discomfort, and exhaustion were a reminder that my body does not respond well to gluten.  Even if the tests for celiac and gluten sensitivity came back negative, there are clear and present markers that I feel better going gluten-free.

This is an adjustment, but in time, I’ll have a plan.  I’ll have this figured out.  My health is worth the investment.  Besides, Riesling is gluten-free, so I’ll be just fine.

Me and my Endo.

My husband and I made a big deal the other day about how we had known each other for ten years.  “Such a long time!”  We clinked champagne glasses and toasted to the decade.

Ten years is a long time.

Thirteen years is even longer.  I’ve been seeing my endocrinologist for about thirteen years.  (Sorry, Chris.)

“Relationship” feels like a strange word to use because it sounds so familiar, so intimate.  But the relationship I have with my doctor is just that: familiar, and intimate.  She checks my physical body for the signs of diabetes wear and tear, but she’s also part of my mental health team, allowing me to let loose a few diabetes demons.  When her office door is closed, that’s when I start fessing up to things I sometimes keep secret from my family …

(More over at Animas today!)

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