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Posts from the ‘Diabetes Memories’ Category

Diabetes Blog Week: Kicking It to the Curb.

When I was first hospitalized upon diagnosis, I spent two weeks in-patient learning the new and tangled ropes of type 1 diabetes with my parents.  My hospital roommate was a kid named Eddie, who had been bitten by a spider.  The other source of comfort was Kitty.

This grubby thing has been with me since the beginning.  My mom and dad let me pick him out at the toy store to before being admitted to the hospital, and this stuffed animal received as many paw pricks and injections as I did – albeit saline ones – during the course of those two weeks.  Kitty used to have long, fluffy “fur” that became matted and mangy from repeated snuggles.  He has a defined “waist” from me wrapping my little kid arms around him when my blood was being drawn.  You can’t entirely see his eyes, but they are in there, underneath the smushes of fur.

Chris and I moved into a new house a few months ago, and as we were packing, I had a few boxes designated as “important things.”  Those boxes weren’t put into the moving van but instead stayed in my car to keep them safest during the course of all the stuff shuffling.  One box was marked “DIABETES SUPPLIES” and in it I crammed my pump infusion sets, test strips, Dexcom sensors, etc.  And tucked neatly beside a spare glucose meter was Kitty, continuing to secure his VIP place in my diabetes supplies arsenal.

He used to live in my arms, when I was seven.  Then he moved to my shelf in college.  Now he lives in my closet, keeping watch from between boxes of Dexcom sensors.

He’s ancient.  Older than anything else I’ve ever owned.  Some people might think he’s due to be kicked to the curb, weeded out, tossed.

To this, I say, “No effing way.”  I’m planning on playing Uno with my grandkids several decades from now, with Kitty keeping watch from the closet where I’ll keep all my old lady accoutrements*.

*   *   *

This is part of Diabetes Blog Week, where blog prompts help generate a series of posts by folks in the Diabetes Online Community.  Here’s today’s prompt:  “Yesterday we kept stuff in, so today let’s clear stuff out.  What is in your diabetic closet that needs to be cleaned out?  This can be an actual physical belonging, or it can be something you’re mentally or emotionally hanging on to.  Why are you keeping it and why do you need to get rid of it?  (Thank you Rick of RA Diabetes for this topic suggestion.)”

* Like giant pairs of underpants  UNDERPANTS!

Turning Ten.

I’ve written ten years of content here at this blog, and today marks the beginning of an eleventh year.  Ten years is a frigging long time.  When I started blogging, I was 25 years old and living in a one bedroom apartment in southern Rhode Island with Abby the Cat and a newly-minted Siah Sausage, starting my relationship with Chris and clumsily finding my footing as a proper adult.

Rocketblast forward ten years and I’m a self-employed writer and proud diabetes advocate, married to the guy whose name I still write in the peanut butter, mother of one small but fierce little Bird.  (And, as Rhode Islanders should, we came back to Rhode Island.)  Throughout the last ten years, so much has changed.  But type 1 diabetes has been a constant.  (A constant pain in the butt.  A constant source of humility and perspective.  A constant thing to be conscious of and diligent about.  All of it.)

What makes my diabetes management easier?  A healthy diet, lots of exercise, checking my blood sugar, taking insulin appropriately … check.  What makes doing all those things easier?  A healthy community, lots of community, checking in with the community, taking community appropriately …

… check again.

I could go on and on about how blogging about diabetes has opened up opportunities for support and camaraderie, but I’ve kind of already done that.  So I’ll just say thank you to each and every one of you who reads this blog or writes their own blog or Tweets about diabetes or posts about diabetes on Facebook or Instagram or Tumblr or [insert shiny, misspelled social media thing here].


Thank you for sharing your stories, and for creating our diabetes community and helping it grow.  It’s been an amazing journey, the one from “alone” to “connected,” that “grateful” doesn’t even begin to touch.

Onward and upward.

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.)

So Many Things!

A Friday Six on a Wednesday!  Because why the hell not.

The FitBit obsession.

Renza talks about the messaging of diabetes, and what we can do to get it right.

Here is some damn sneaky research.

Seb is still running. And I’m still supporting the hell out of him, because he’s incredibly dedicated. You can still support him, too.

I am having the hardest time not filling our home with everything Murray, by way of Derek Eads.

“It’s a day to remember those who were lost. For me it’s a reminder that I’m lucky to be alive.”  Amazing post from Carly about a medical emergency on 9/11.

Are you in the Los Angeles area?  Diabetes Sisters is coming to LA on October 24th, and I’ll be part of the event, alongside some of my favorite DOC people (Hi Cherise, Manny, and George!).  Hope to see you there!

That same weekend, up in Anaheim, CA, the Children With Diabetes team will be holding a Focus on Technology conference.  There will be a whole session on setting up your CGM in the Cloud rig – don’t miss it!

Coming Together as a Community – a great piece from diaTribe’s editor-in-chief Kelly Close.

There is no such thing as a “free food.”  Sort of.  New column at Animas.

“today, i felt parts of the monster within myself.  today, i felt parts of the hero within myself.”  Excellent post from Heather Gabel about the activated patient.

THE SEA OF TREES found its way into People Magazine last week.

And these – THESE VIDEOS ARE AMAZING.  Melissa, you are the Weird Al of the DOC.  :)

Free Foods!

…  “You can have pickles?  Or gelatin?  Or cucumber slices!”

My mom tried to make these options sound appealing and delicious, but when I was a kid and my blood sugar was super high, pickles weren’t what I craved.  My body wanted to chug water and cheeseburgers simultaneously in efforts to cleanse the ketones and sate the high hunger.

“Can I have something else?”

“Not right now.  Those are the free foods you can have, until your blood sugar comes down.” she’d reply.

The phrase ‘free foods’ was a real one, twenty years ago in our household.”

more about free foods at Animas.

Lies.

I used to lie to my pediatric endocrinologist.  (Not proud of this.)

She’d sit at her desk and look through the logbook with all my blood sugars mapped out (this was back in the day when my mom and I collaborated on logging my blood sugars, which meant that they were often accounted for), sometimes with a furrowed brow.

“So there are a lot of higher numbers in the morning, after breakfast.  Do you think we need to look at that morning insulin:carb ratio?  Maybe that needs some tweaking, to help with these post-breakfast numbers.”

There was a good, full year (or two) when I was a teenager wherein I would meet with my pediatric endocrinologist and have these strong, intelligent conversations about blood sugars and ratios and numbers.  She and I would crunch numbers and make changes, all in pursuit of lowering my A1C (which, as a teenager, swung wildly).  I talked the talk.  I sounded like a gave a shit.

But in reality, I was lying to my excellent doctor.  I was wasting her time.

I would show up for my appointments in full-swing teenage diabetes rebellion, knowing exactly why my post-breakfast numbers were such shit but still not able to admit to my endocrinologist that the reason my blood sugars were high after breakfast was because I was too lazy/disinterested/foolish teenager to properly count my carbs.  I was a very privileged teenager in that I had access to excellent diabetes care at the Joslin Clinic, a stash of insulin and glucose meter test strips in my bathroom closet at home, and a family that was both interested in and dedicated to my health and well-being.

So why the hell was I lying to my endo?  Why was I fifteen years old, talking with my kind endocrinologist about numbers that looked dodgy on paper but weren’t entirely riddles wrapped in mysteries – these numbers were the product of actively distancing myself from the responsibility of diabetes self-care.  The answer was clear – the insulin:carb ratios were probably fine and I was just SWAG-bolusing – so why wasn’t I fessing up and saving my endo the effort of trying to find “a solution?”

Yesterday, I was in Minneapolis, Minnesota giving a keynote presentation at the Annual ICSI Colloquium on Health Care Transformation and part of my talk was about how – and why – patients sometimes lie to their doctors.  Like when I lied to my peds endocrinologist about my post-breakfast blood sugars, or how I’ve also lied about how much regular exercise I was getting throughout the course of a week. (“Exercising every day?  Yes!  With bells on!  Um … weighted bells!”)

These lies aren’t told to in efforts to be malicious, but more because it’s hard to admit failure, especially to people I respect.  It’s also hard to admit it to myself.  I liked my pediatric endocrinologist very, very much and I didn’t want her to think my lack of diabetes follow-through, at times, was because I was a bad person.  It was hard to explain to her how much I wanted her to like working with me, and to be proud of me, as part of our patient-HCP relationship.  It was hard to explain why I ignored the daily duties of diabetes sometimes, even though I didn’t want to ignore them.  It just didn’t make sense.  A lot of the time, I didn’t want her to think I was a jerk, like I was wasting her time or something (even though the lies did waste her time – it was a vicious cycle).

“The reason it’s easier to be honest with my endocrinologist now is because she views my pancreas as non-compliant, not me.” I told the ICSI group.  “As a patient, I didn’t want to disappoint my doctor.  It took a long time to realize that the lies didn’t help improve my health.” (More on the emotions behind diabetes and the word “compliance” here.)

Embracing honesty with my current endo has been difficult, but necessary.  I’m able to tell her when I’m going through diabetes burnout, or when I’m skimping on different aspects of my self-care.  It took a long time to make me feel as though honesty was the best policy because it actually enabled my doctor and I to address the things I needed help with, instead of pretending that everything was fine.  I wish I had been as forthcoming with my pediatric endo as I am with my adult endo, but it’s still hard, even now, to look her in the eye and admit the stupid mistakes I make.  Maybe that’s part of the “growing up with diabetes” education curve, learning that I can’t aim to fix what I won’t acknowledge.

I have a feeling that learning curve goes on forever.

Looking Back: Kitty.

I don’t know if I have a spirit animal, but my diabetes does, and it’s Kitty.  Kitty is a ragged and rumpled stuffed animal who kept me company as I navigated my first few weeks of life with type 1 diabetes … and he still lives in the laundry room of my house now (safe, warm, and occasionally snuggled).  He’s my old-school diabetes support.  Today, as I’m traveling to Washington, DC for the Diabetes Sisters weekend conference, I’m looking back at when Kitty came into my life, and how he made me feel safe.

*   *   *

They told me I had to go into the hospital for a few weeks.  I wasn’t exactly sure what “diabetes” meant, but I knew it must involve vampires, because people were drawing my blood every few hours.

“You can pick any friend you’d like to bring with you to the hospital.  Any one you want.”

My father held my hand as we walked into Ray Willis’ Toy Store and I looked at the rows and rows of cuddly and soft stuffed animals.  My seven year old shoes clicked against the tiled floor as I examined the fare.

The soft ears of a gray elephant looked so nice.  I could picture myself hiding behind them if I was scared.  I saw an amber-eyed puppy dog with a pokey little nose.  He looked like he could be my friend.

Then I saw it.My beloved Kitty.

Kitty.

A huggable, marmalade-colored stuffed animal cat with bright eyes and a long, fluffy tail.  He was sandwiched between a giraffe with the tongue sticking out and a stuffed octopus (can’t figure out why anyone would make one of those).

I reached out with my little hands and grabbed him from the shelf.

“This one?  Is this one okay?”

My father gave me the thumbs up.  “That one looks good to me.”

Mom and Dad paid for Kitty and we started our drive up to the hospital for my overnight stay.  Originally named “Tigger” but eventually falling victim to a less imaginative moniker of “Kitty,” I kept this stuffed animal at my side for every blood test and doctor visit.  He was a loyal friend and received the occasional shot, too, when I wasn’t feeling brave enough to be the only one being injected.

I used to wag his tail and make him wiggle about, trying to convince people in the hospital elevators that he was real.

A boy on the bus in second grade tried to pull Kitty’s arm off and gave him a good rip.  I cried to my mother, who was about to sew up the wound with orange thread, that she needed to use black thread so it would look like a stitch and I would know he was better.  Ever-obliging, my mother stitched Kitty up and I admired his war wound with fascination.

Siah is not a fan.

Twenty years later and no longer the newly diagnosed little girl at the toy store, I’ve had this Kitty with me through it all.  He used to look vibrant and fluffy, but now his fur is matted and mangy.  He lived on my bed in college.  He moved to my first apartment with me after college.  Even when I felt “too grown up” to have a stuffed animal on display in my house, Kitty has managed to weasel his way into a bookcase or a closet shelf.  Currently, he lives on top of my winter sweaters in my closet, looking at me with his matted fur and sad eyes from the mountain of wool and cotton.

He made me feel comforted.  Admittedly, he still does.

He’s a testament to how long it’s been.  And how far I’ve come.

(But Siah doesn’t like him too much.)

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