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Looking Back: Language and Diabetes.

In combing through some older posts, I found this one about language, and the words we use.  (Older post here)  How I talk about my diabetes influences how I feel about it, or how it can make me fee.  Which is why I wanted to revisit this post this afternoon, looking back to last year’s Diabetes Blog Week.

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Language matters.  The words we use matter.

Some words make me all fired up, like “consumer.”  I am a consumer when it comes to cars, or coats, or snow blowers.  When it comes to diabetes, I’m not a consumer.  I would never choose to consume these goods; they are chosen out of the desire to stay alive.  I don’t like “suffering from diabetes” because it makes me feel weak and compromised, which stands in contrast to where I prefer to anchor my emotions about diabetes.  And I totally hate the concept of “good” and “bad” blood sugars.  That whole ideology can fuck off in favor of “in range” and “out of range.”

I appreciate the word “complications” because its connotation is perfect for how I feel about diabetes-related complications; that shit is complicated.  I like the word “empowered” because it reminds me that I have a say in how this whole life maps out, diabetes or not.  I like any words and phrases that tie the physical aspects of diabetes to the emotional ones.  I latch on actively to “hope” versus fear.  And I like being called “Kerri” instead of “diabetic,” but hey, that’s just me.

(And I really like certain curse words, but I am trying to use those less, but it’s difficult.  I don’t make insulin, I do make use of curse words.  It’s a terrible habit, but one I am not changing.)

But it’s not about the words we shouldn’t use, or the ones that seem potentially loaded.  This morning, after hearing about the death of a fellow advocate (outside of the diabetes space), I’m spinning with thoughts of the words I wish I used more, the things I wish I said.  The things I should say.

Like “thanks for sharing this.”  I think this every time I read a blog post, or a Tweet, or a Facebook update from someone and it makes me stop and think.  The DOC is filled with voices that challenge what I thought I knew, and who teach me how to re-examine my chronic illness with grace and determination or perspective or humility … or all of it.  I like the way they think.  I like what they say.

And “How are you feeling today?”  I interact with a lot of people touched by illness – patients, consumers, caregivers … whatever word words for you in this way – and their stories touch me.  A lot of the time, I absorb what they’re saying and store it away in my head, but I want to reach out more, ask “how are you feeling today?”  I want the people in our community, and outside of it, to know how much I appreciate what it takes to share their stories, even when they are worn out by doing it, by living it.  A little ask goes a long way.

Or “You aren’t alone; how can I help?”  Because sometimes people share to get things off their chest (“I hate low blood sugars!”), but other times they reach out in hopes of someone reaching back (“I feel so alone with diabetes.”)  Words matter, and hearing, “You aren’t alone; how can I help?” might make a difference.

And “I’m sorry.”  Because I am.

But mostly “thank you” and sometimes, “I love you.”  Over the last few years, there have been people who have come and gone from my life that left lasting impressions, and I bet I didn’t tell them “thank you” and “I love you” nearly as much as I should have.  I know I thought it – thought it a lot after they were gone – but I should have said it then.  When they were here.  When they could hear me and understand the influence they’ve had on my life, the positive mark they’ve left on my existence, and the ways they’ve rocked my world for the better.

Words matter.  Stories matter.  People matter.  So thank you.  And even though you’re reading these words on a glowing screen and we’re communicating mostly through a digital medium, you are part of a community that has forever changed me.

What is it like to take insulin?

This was a search term that brought someone over to SixUntilMe, and I realized they probably didn’t find their answer easily.  I don’t have a pile of “How To” and “Five Ways You Can …” sort of articles, despite the Internet trend in that direction.  (Closest I’ve come is the one about the ten best cocktails for people with diabetes.)  But I wanted to address it.  So …

What’s it like to take insulin?

The act of inserting the needle is one thing.  Years ago, I drew insulin into a syringe from a vial, tapping out the bubbles and then pressing the needle tip to my skin. Thirty years ago, my style was to press the needle through my skin in a slow, deliberate sort of manner, using the speed to gauge whether or not the injection site would hurt (and if it felt uncomfortable at first press, I’d move to a different site).  I still do it this way now, whether it’s a syringe, an insulin pen, or the infusion set for my insulin pump.  Controlling the pain is important to me.  It’s on the short list of things I can control.

The kind of insulin has changed for me throughout the years, as well.  Upon diagnosis in 1986, I took Regular and NPH, which were pretty sluggish and forced me to plan my meals around my morning insulin injection. I’ve also used Lente, UltraLente, Lantus, Levemir, Tresiba, Humalog, and Novolog.  NPH used to be rolled in my mother’s hands so it would mix properly before injection.  Lantus burned when I took it, and the burn would spread under the injection site for a second or two.  I’m currently using Humalog in my pump.  It claims to start working in 15 minutes but my body seems to make that timeline 35 min.

Insulin is serious stuff.  It lowers blood sugars.  Not enough keeps blood glucose levels higher than is safe, subjecting my body to the abuses of elevated sugars.  Too much insulin throws me into a “hypoglycemic event.”  I’ve had a number of low blood sugar episodes that have scared me.  “Scared me” isn’t really a fair description, either, because in some of those moments, I wondered if I was going to die.  Not being dramatic, but more pragmatic.  Will I be able to consume enough glucose to keep me from passing out, going into a coma, dying?  These thoughts sometimes go through my mind like a ticker tape when I’m severely hypoglycemic.

Physically, aside from putting a needle into my body, insulin is crucial to my body’s metabolic processes.  I’d be dead without it.  Dead.  It keeps my body from starving to death.  Acknowledging that is crazy, and gives way to the other side of taking insulin:  the headspace side.

Acknowledging that my ability to stay alive relies on the contents of a small, glass vial is humbling as hell.  The fact that so many people with diabetes cannot afford or access insulin and they die without it is beyond humbling.  Every time I finish a bottle of insulin, I make sure to grab every last bit, waiting for any bubbles to burst and grabbing them when they go liquid.  I do not waste insulin.  A bottle broken against bathroom tile is mourned.  And as the price of insulin continues to climb, my panic response does as well because not having insulin is not an option if I want to continue to exist.

That’s some crazy shit to think about as I tap the bubbles from a syringe.

So what’s it like to take insulin?  Humbling, if I think about how lucky I am to be alive after Banting and Best worked their magic.

But the weird thing is, on most days, I don’t think about it.  This hormone I’d die without, this item in my fridge that’s worth more than my entire house in total, it’s not something I deliberate or celebrate every day.  I just take it, ignoring any quick pinch on my skin and moving on.

… and that right there illustrates how lucky I am.  Which is why I’m ending this post with a call to donate to Life for a Child through IDF.  Nothing like sparing a rose a few months early.

PSA: Wash Yer Hands.

Wash your hands before trusting your meter.

Voices Carry.

There’s no generation assigned glibly to me – not a millenial, not a Gen X’er, but I seem to be an “xenial,” according to this new write-up.  I identify completely with “experienced an analogue childhood and a digital adulthood.”

My journaling has gone from paper journals to blog posts, too.  I used to keep volumes of chaotic ramblings as a kid, before switching over to blogging.  I’ve written over 2,760 entries on Six Until Me, chronicling my diabetes since May of 2005.  And recently, I’ve wondered what keeps this pen to paper (or, more accurately, these hands to keyboard).  What’s the point in sharing my story?

Even my diabetes has made a transition from analogue to digital.  When I first came home from the hospital after my type 1 diagnosis, my mom used a urinalysis kit for a month before gaining access to a glucose meter.  (Note:  Glucose meters were available, but we didn’t have one for four weeks)  My glucose meter was an Accu-Chek Brick (not the real name but could very well have been) and my lancing device was this wretched thing.

Glucose results were not stored in my meter but instead were logged by hand.  I didn’t count carbs; I followed the ADA’s exchange system.  Two starches, a protein, a fat, a fruit … and a headache with each meal.  My insulins were NPH and Regular and yes, the bottles had little cows and piggies on the side.

Thirty years later, the touchscreen insulin pump on my hip delivers fast-acting insulin without uncapping a syringe.  A continuous glucose monitor offers up glucose results every five minutes.  My meters download and upload to the cloud consistently and even my prescriptions can be refilled using an automated service.  My diabetes has gone entirely digital.

… except.

That it remains diabetes.  All of the technology is truly amazing and life-changing, but this body still doesn’t make any insulin.  Still experiences blood sugars above 200 mg/dL and under 60 mg/dL.  Exercise is still an exercise in planning and perseverance.  Still doesn’t process food physically the way that people without diabetes do.  Mentally doesn’t process food the normal way, either.  Or the concept of longevity.

Diabetes is a raging back burner that is on all the time, despite going digital, because it is still NOT CURED.

And that’s what keeps me sharing my story, and sharing stories from other PWD:  it’s still not over.  We’re surviving and thriving and kicking a tremendous amount of ass but we’re still doing this with diabetes dragged behind us, a weight that is light as a feather some days and heavy as an A380 on others.

Our voices carry.  Sharing your personal diabetes experience helps it reach the ears and eyes of someone who needs that affirmation that they aren’t alone.  Stories change over time, too; and diabetes has been a part of all of those experiences.  When I first started writing, it was about college and dating and finding a job.  Then it became planning a wedding and cultivating a career.  Now, twelve years later, it’s a lot about traveling, expanding my writing, and raising my children.  My life has changed, is changing, and sharing these experiences shows one small version of what life with diabetes might look like.

That yeah, it’s diabetes and it’s not over.  But my life is also not over.

So cheers to you, all of you who are sharing all the triumph and chaos that comes with chronic illness.  Our collective cadre of storytellers – the ones who write about incredible feats of strength and conditioning their bodies.  The ones who write about creating life.  The ones who share the mental health perspectives.  The ones who influence policy.  The ones who talk offer a moment of “me, too.”

The ones who change minds.

The ones who change hearts.

We keep going because we don’t have a choice to leave diabetes behind.  But we do have a choice to bring hope forward.

Eleven and the Harmonimato.

Hey there little Guy,

“YEAH!” is your favorite word.  You are a crawling affirmation of everything.  You make me feel a teeny bit like I gave birth to Lil Jon.  YEAH!

“YEAH!!”

All the time, from you.  “YEAH!!”  At the grocery store and in the car and at Grammie’s and when we pick Birdy up from camp.  “YEAH!”  While you’re eating, when you’re in the tubby, at the airport.  “YEAH!”

You crack me up.

Tiny tomato man, you are eleven months old.  Just a few weeks shy of marking your first year as part of our family, and you might be the busiest little person I’ve ever encountered.  You aren’t walking (yet) and you don’t have even the whisper of a tooth (despite excessive drooling and gnawing on my shoulder anytime I’m carrying you), but you seem SO BIG and you are on the move all the damn time.  The days of the little baby Guy are way behind us as I watch you rocket towards toddlerhood, chasing cats and destroying block towers as you go.

Foods that make you happy?  Peanut butter, bananas, black olives (you’re weird), and fresh baked gluten free banana bread.  And your new love for the tomatoes that have finally sprung up in our container garden on the deck is a sight to see.  (You also play them like harmonicas.  Harmonimatoes?)

And you have discovered my diabetes devices.  They’re toys to you.  The smooth, shiny screen of my insulin pump astounds you and you like to wrap the tubing around your fingers.  My CGM sensor has become a climbing tool when you use me as your human rock wall.  And sometimes when you hug me, I have to move my pump from my bra to keep you from bonking your head, but that’s par for the course.  Welcome to life with mommy’s devices, kiddo.

Without a doubt, your favorite person on the planet is your sister.  You two hang out in the living room, surrounded by your toys, giggling madly at one another.  She makes silly faces, you lose your mind laughing.  She sings you songs and you yell, “YEAH!” to encourage her to keep going.  When she lets you crawl all over her, you gently but deftly pick her nose and grab her braids and smother her with baby kisses and she loves every, single minute of it.  You two are two loud peas in a pod, despite the years between you.

And as your teeth are poking at your gums to come in, Birdy’s are hinting towards falling out.  Just after you turn one, she’ll climb on the bus en route to second grade.  And yet you are so the same.  Neither one of your will stop talking.  Both of you have infectious grins.

And both of you fill my heart in a way that’s beyond words.

Happy almost-birthday, little Guy.  Yeah!!

Love,
Mama

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