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Posts from the ‘Diabetes and Emotions’ Category

A Beautiful Attempt.

Right now, outcomes are not reflecting the things I’m doing to manage diabetes every day.  And that pisses me off.

I need to remind myself that every attempt at keeping diabetes in line is worth it.  Even if the results haven’t quite caught up with the efforts.

Recapping #dayofdiabetes.

My documented day of diabetes wasn’t an all-star showing.  I didn’t hit one out of the park, but it wasn’t a complete shut-out, either.  I’m no bush-league player, so I knew how to handle the things that kept coming out of left field, even when a diabetes triple-play was in effect (morning highs! then a few lows! then a pump site change at midnight!)  But there’s no cure on deck, so I keep swinging for the fences and taking it one base at a time.

The day started with a higher blood sugar than usual, which I found frustrating because overnight numbers are usually my stable-zone (of course there are outliers, but my A1C stays stable largely in part to having overnights reasonably nailed).  Kicking off the day with a little grumpiness isn’t my style, but that’s how it started yesterday:

Sometimes my blood sugars don’t respond quickly to insulin, and I have to kick start things with a little exercise.  Self-employment affords me a flexible schedule, which I’m very grateful for, letting me jump on the ellipmachine for a few minutes to help move the correction bolus into action.

But after the initial morning high, blood sugars were oddly low yesterday.  I spent more time than usual chomping on glucose tabs.

Low blood sugars didn’t just jack up my day.  They cramped my parenting style, too, as I waited for the glucose to hit my system and reboot my brain.

Work still needed to be done, though, so I found myself prepping for conference calls in an unusual way yesterday:

Family dinner was punctuated by the soundtrack of diabetes.

My bedtime routine was ambushed by the need for an insulin pump site change (which I despise doing before bed, due to the ambiguity of the pump site working properly, having a post-site change high blood sugar, [insert other variables here]).

But overall, the technology I use to keep track of my diabetes protects me more than it inconveniences me, and I’m grateful.

And then the day was done. Over! Today is another day. As is tomorrow.

“It’s like deja vu all over again!”

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.

 

All the Pieces.

We took a brief break at the Boston Museum of Science to marvel at the “Archimedean Excogitation,’’ an audiokinetic sculpture by George Rhoads.

Birdy stood and stared at it for ages, and I found myself doing the same.

The sculpture is 27 feet tall, made up of a xylophone, wind chimes, and so many chutes and pulleys and moving parts that whirred and influenced one another, sending billiard balls on a journey through the sculpture, rarely taking a predictable path and creating this cacophonous yet controlled chaos that made focusing on one part dizzying but watching it in motion made me respect all the work that went into crafting and maintaining it.

Diabetes management metaphor, anyone?

 

Plastic Apples and Measuring Cups.

Her desk was anchored on either side by tall bookshelves crammed with pretend food.  Plastic fruit – apples, bananas, oranges, kiwis that looked like fuzzy dumplings – and the cardboard shell of cereal boxes.  Plastic slabs of steak with edging to make it look like it had a pat of butter melting on top, and the entire plastic carcass of a chicken, woefully untrue to size, making it the same size as one of the kiwi dumplings. Measuring cups and food scales, lists and charts, meal plans and index cards covered with suggested serving sizes.

It always felt embarrassing, seeing the nutritionist and the dieticians, especially when I was in my teens.  I struggled with my weight as a kid but didn’t ever dip into “overweight,” just more settled on the heavier end of the approved spectrum.  I hated meal plans and the emotional influence of food on my life.  Visiting the plastic food lady as part of the flow every few endocrinologist appointments felt shameful, and I wondered what my classmates would think if they knew I was lectured about eating and food every few months.  Would they know how complicated my relationship with food really was?  Dietician appointments felt like mini-fat camps, and even though I did feel better-informed leaving the appointments, I still felt stupid and ashamed that there were required in the first place.

Moving forward a few decades, diabetes is still very much in play.  I don’t see a dietician as often now as I did when I was growing up, but I do attend a lot of diabetes conferences where registered nurses, dieticians, and nurse educators present, giving me access to refresher courses on food, eating well, and the latest in food and diabetes research. The plastic food is still in play, only the plastics aren’t relegated to my CDE’s bookcases anymore.  Now, the plastics are invading my home.  My daughter’s room is awash with kitchen playthings and miniature versions of what my dietician used as visual aids back in the day.  We talk quite a bit about food and why we eat the things we do.  I try not to let my food-through-the-lens-of-diabetes mindset invade how she sees her plate, even though it’s hard, since we spend so much time together and she sees so much of my diabetes day-to-day management (attempts).

“We need to eat healthy foods so we can grow to be strong and smart and healthy,” I tell her.  “Yeah, and we always need to eat something green with our meals,” she adds, knowingly.  “And sometimes we have juice in the fridge, but it’s for your low blood sugars.”

I don’t want my daughter to think that there are so many food “rules.”  I want her to eat things that make her feel good and that taste good, without looking at her plate and thinking her value as a person rests there.

In her room, she ‘cooks’ up a storm, throwing random items into the plastic stock pot on her pretend stove.  “We need an eggplant, and a hard boiled eggie, and some ash … ash … ASHparagust, and Wonder Woman,” with all of the aforementioned tossed into the “boiling” water.

“What are you cooking, Birdzone?”

“I’m making soup. It will be so delicious. When I’m done, you can have a bowl.”

“What’s in it?”

“Don’t worry, Mommy.  There’s something green in there.  There’s ashparagust.”

March is National Nutrition Month (more about that on the Academy of Nutrition and Dietetics website), and this year’s campaign encourages people to “Enjoy the taste of eating right.”  The phrasing of that message is so hopeful, and without residual shame:  enjoy.  Enjoy the taste of eating right, whatever “right” might be for you.Yes!  I’d like to!  I’ll do that!

My hope is to eventually shake the preposition off “eating with diabetes” and just focus on “eating.”

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.)

More on Redefining the “Diabetes Diet.”

In keeping with the thought process from yesterday (talking about what makes me view food choices as something to hide), I wanted to reshared this video from last year about redefining my perception of what a “diabetes diet” really means.

I don’t want to view food as something I’m punishing or rewarding myself with.  But that mindset is hard to stick with, at times.

Do you subscribe to the whole “diabetes diet” mentally, or do you view your food as (gasp!) food?

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