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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.

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!)

Recreating the Pee Alarm.

Birdy has this “learn about how electrical circuits work!” toy, and she plays with it endlessly.  I thought we had built every plan in the book that came with the game until she busted out this page yesterday:

And once we built it, I realized we had recreated the “pee alarm” that my parents used when I was very young, when the first symptoms of diabetes started to present themselves.

“Can we take this apart now and build a different one?” I asked her, the noise of the pee alarm making me feel like I was in first grade all over again.

“Sure, Mom.  But why?”

I started to explain, and then realized some things are better left unsaid.  (But clearly not unblogged.)

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.

Belly Ache.

My celiac tests came back negative.  So did my IgA or IgG AGAs (these could be exactly the same as a celiac test but I do not know all the lingo and thus, I remain clueless).  The basic gist is that my body seems to have no trouble at all with gluten.

Except that it totally does.

I don’t know exactly when it started, but I’d say about eight months ago.  That’s when the first nondescript symptoms came into play.  My weight went up a little bit, despite the same amount of exercise and generally eating the same mostly-healthy foods.  My stomach wasn’t upset so much as a little uneasy, and my abdomen felt slightly tender after some meals … and other times without any known catalyst at all.

But I’m not good at keeping track of when things “start to change.”  The only way I knew that my weight was changing was because my clothes fit a little bit differently.  My blood sugars were fine, and my overall health seemed fine.  The decline into “not so fine” wasn’t fast, but really slow and subtle until all of a sudden, I was like, “WAIT.  Just a frigging second.  Why do I feel sick all the time?”

In the last three months, I’ve been acutely aware of not feeling well, and the list of noticeable symptoms grew week by week.  I was exhausted – falling asleep on the couch and having trouble maintaining my normal vampire hours.  I was moody and grouchy, especially later in the day.  (And I’ll just offer this up because I know you’re thinking it:  I’m not pregnant.)  My hands, on some mornings, were tingly and pins-and-needlesish.  And my stomach was angry, but in a really passive-aggressive way.  I had sharp pains in my stomach, but not all the time.  I had wicked bloating, but not intensely all the time.  I just had a permanent belly ache, and it was becoming the norm.

And I was permanently belly aching about it.  The only thing that alleviated symptoms was to cut out gluten, but I didn’t do it consistently enough or in a dedicated enough fashion to really assess if going gluten-free helped.  (Sadly lazy, but true.)  On the whole, our family is about 80% gluten-free, but apparently the 20% was enough to leave a trail of blargh.

Thankfully, my endocrinologist is thorough, so when I saw her a few weeks ago, she ran all the appropriate tests to rule out different this’s and that’s and to help establish certain baselines and other fancy doctor/patient discussion things.  My thyroid function is fine.  My A1C is fine.  My blood pressure is fine.   Nothing came back flagged as an issue.  (Except the whole diabetes thing.)  Which made me feel weird, because the absence of a concrete YES YOU HAVE A GLUTEN SENSITIVITY made me feel a little powerless, like I was just grasping at straws.

In efforts to take some definitive steps towards actually doing something, I talked with Sara(aah) about this issue, and she and I compared symptoms until I felt confident that, even if the tests didn’t flag an issue, there still could be some kind of correlation.  Whether gluten is the root cause or just a trigger, its absence makes me feel much better.  I can’t dispute that fast-becoming-a-fact.

So for the last week, I’ve been running my own gluten-free tests.  And fortunately for my body, it seems to help.  (Unfortunately for my preferences, though, because I love Italian bread and all that jazz.)  It’s been almost a full week now without a whisper of a symptom.  It’s been months since I’ve gone more than a few hours without a sore belly, so this is a step in the right direction.

My plan is to continue to go with my gut and do what makes my body feel better.  If I go against the grain, I’ll feel better.  It’s a diet omnivorous about sticking to, but I know it’s best in the long run. 

… more gluten-free puns once I cook them up.  For now, you’ll have to wheat.

 

Twenty-Eight and Thirteen.

Twenty-eight years ago, I was diagnosed with type 1 diabetes. It’s a moment in time that is so jumbled up with other things – my grandfather had been in a horrible car accident a few months prior to my diagnosis, my older cousin died in a car accident just after my diagnosis – there are memories of people in my family crying and there were so many reasons.  Vague memories of being in Rhode Island Hospital for two weeks, the kid with the spider bite, and practicing injections on an orange serve as markers on the timeline of my diagnosis, but clear memories don’t exist.

Diabetes has always been there.  It doesn’t get easier with time, but it does become more routine and less mentally intrusive.  Either that, or I’ve just become used to the intrusion.

I remember September 11, 2001 very clearly.  I was working in a bank in Newport, RI right near the naval base.  It was my first job after college, and the first plane hit the WTC as I was driving over the Newport Bridge to work.  My coworkers told me about the first plane when I arrived at the bank.  The security guard at the bank told us when the second plane hit.  I remember calling my father because I didn’t know what else to do, and he told me it was going to be okay.  His voice was calm.  Despite his inability to actually influence the events that were unfolding across the country, his words were reassuring and made me feel safe.

I feel very lucky that I didn’t experience personal loss on that day.  My heart goes out to those who did.

The nation is in mourning and I mourn with my country.  Simultaneously, I mark the anniversary of my diabetes diagnosis. I always think about people whose birthdays are on September 11th, or whose wedding anniversaries are September 11th.  I think about the people who lost so much on September 11, 2001. It’s a day where I feel conflicted thinking about diabetes, but it’s impossible not to apply personal bias to life.

I think it’s a day to close the damn computer.  To not read every news article and overwhelmingly sad bit of news being shared.  It feels like a day to be present, to remember to live.

 

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