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Posts from the ‘Diabetes and Family’ 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.

 

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.”

Hashtag Motherhood with Diabetes.

“What is that?” my daughter’s friend asked me from over her plate of scrambled eggs as I was watching the two kids for the morning.

Before I could answer, my kid piped up, “That’s her insulin pump.  It has insulin in it.”

“Oh,” the other three year old answered, mouth full of eggs.  “What’s it for?”

“It has my medicine in it, for diabetes.  Remember?” I said, reminding my daughter’s friend of conversations we had at the beach over the summer, when she had previously asked me about my insulin pump.

“Yeah.  Hey, what’s that tunnel?”

Birdy interrupted again:  “That’s the tubing and it goes into her body and the insulin goes in the tube – insulin comes from a small bottle you cannot touch – and the tube is really squishy and Loopy likes to chase it,” and right on cue, the cat came leaping out of nowhere and batted at the pump tubing dangling between my hands as I primed my pump.

Both girls laughed.  “LOOPY!!!”

Loopy twirled, burped, and scampered back into living room in a flurry of gray fur.  The girls resumed breakfast, and I resumed prepping my new infusion set.

“Sometimes my mom has whoa blood sugars but most of the time we just eat the glucose tabs from the Glucose Tab Man and then it’s all better and we go back to playing with the dollhouse,” Birdy offered.

“What’s a glucose tab?” her friend asked.

“Oh, those are these!!”  Birdy leapt down from her chair and ran off to grab one of the blue jars.  “Sometimes mom lets me have a very, very, very small bite.  Do you want a very, very, very small bite?”

“YES!”

Which is how my daughter and her friend ended up chasing their scrambled eggs with very, very, very small bites of wildberry glucose tabs.

Diabetes Art Day Outtakes.

Before we settled on paper dolls for Diabetes Art Day, there was an unnatural exploration of cats and a finger painting app on the iPad (don’t read that sentence too fast or it will give you an unintended mental image).  This is what happens when the snow keeps falling and it’s far too heavy and constant to shovel so you’re stuck at home, taking art direction from a three and a half year old:

“How about we put the pump on Siah?”

“Sure, like this?”

“Yeah, only the tubing is across her belly button and she’s going to get stuck to the doorknob for sure.”  (Birdy doesn’t know much about diabetes, but she knows I end up tethered to things more often than I’d like.)

“Hey, is that Siah’s Dexcom?  On her leg?  Like you wear!”

Silence.

“I don’t know what any of that is, Mawm.”

“That’s Siah.  She’s wearing a blue circle pin for World Diabetes Day.  And behind her is …”

“Jail!”

“Nope.  A calendar.”

“We need one with Loopy.”

“Okay.  Here’s the Loopster with some glucose tabs.  And glucose tab dust all over her fur.”

“Whoa blood sugars are dusty.”

“Yes they are.”

Holidays and Diabetes: Fun-Free Pie.

Last year, Abby and I took to the computer for a frank, serious discussion about the holidays and diabetes.  But then it digressed into a chat about how friends and relatives handle diabetes, what are our favorite holiday desserts, and the influx of fun-free pie (no recipe, but there is one for the pumpkin roll, which is mentioned several times throughout).


What recipes are your favorite for holidays indulgences?  And do you put ketchup on your mashed potatoes?

On Paper.

“So you write a blog about diabetes?  Don’t you run out of things to write about?”

A really nice lady at the JDRF event past weekend posed this question to me.

There’s always something, some bit of minutiae to chose to chronicle.  Maybe the blood sugar of 70 mg/dL coupled with a southeasterly Dexcom arrow that woke me up at 3 am.  Could be the realization that I haven’t changed my lancet in mumble mumble days.  Or my husband’s question – “Do we have AA batteries?” – and my immediate thought of “I use them in the pump.  I hope we do!”

Could be that every meal, every snack, every bit of exercise, every time before I drive, every time I pee (“Is this high blood sugar or is this just … pee?”) … so many moments take something diabetes-related into account.  It’s not “woe is we” but sometimes just whoa, because diabetes can take up a lot of thought space.

“No, there’s pretty much always something to write about,” I answered.

And her face fell a little bit, and I realized she was asking not for herself, but for her son who was living with type 1 diabetes.  I didn’t realize that the underlying question wasn’t about writing prompts but more, “Will diabetes always be on his mind?”

Diabetes will always be on his mind, just a little.  Just enough to keep tabs on it.  Sometimes more often, depending on the needs of his body and his mind.

But even though there will be so many moments when diabetes is taken into consideration throughout the course of our lives with it, they’re just moments.  They don’t define his whole life.

“There’s always something to write about, but I chose to write about these diabetes things and to focus on them.” I amended, wanting to hug her.  “I’m not highlighting these moments in my life … just on paper.”

She smiled, looking relieved.  “On screen, right?”

“Exactly.”

 

Halloween Prep and Diabetes.

Between the finishing up of Birdy’s Spidergirl costume (a labor-and-tulle intensive endeavor), carving our pumpkin (she wanted a big Batman signal on it this year), and the creation of a cemetery cake (which Birdzone renamed “the grave garden” – a name I like more than the original), we’re getting our Halloween on here in a big way.

A cemetery cake, aka the "grave garden."

Way back in the day, my first Halloween experience after being diagnosed with type 1 diabetes came barely a month in, sending me out trick-or-treating with my family and subsequently having my breath sniffed for evidence of having sneaked a Twix bar (or three).  I remember trading my candy to my brother for a few dollars in efforts to keep me from consuming too much, and a small bag filled with treats was stuck on top of the refrigerator, promised to be used for the next few low blood sugar reactions.

But for me, it’s not as much about the candy as it is about the costumes.  I’ve always been a big fan of dressing up and having fun on Halloween, and being diagnosed with diabetes didn’t make a dent in that part of the fun.

 

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