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Learning from my Peers.

“All those stereotypes about type 2 diabetes?  I used to believe them, and I worked to distance myself from them,” I said.

Cue my blush of shame and embarrassment.

“I’m sorry I thought those things.  And the main reason I don’t feel that way anymore is thanks to the advocacy work of my peers with type 2 diabetes.  People who are sharing their stories and helping me understand what their lives with type 2 diabetes are like.  Rachel, just through blogging, has taught me so much.  Thank you, Rachel, for helping me learn.”

It felt liberating to say it out loud, even though I was ashamed to admit it.  And it felt even better to be able to thank Rachel in person.  I was at the Diabetes Sisters conference, taking part in a session addressing misconceptions within the diabetes community, not just outside of it.  It felt like a safe, and most appropriate, place to let go of some guilt.

In the last ten years, I’ve learned a lot about diabetes through connections in the DOC – my own diabetes, of course, but also so much about how diabetes is managed and wrangled in by my peers.  I’ve read extensively about struggles to lose weight, lower A1Cs, have babies, develop do-it-yourself pancreases, and the emotional chasm of depression and diabetes.  The things I have learned from my peers have changed the way I view diabetes.

But I also learned to expand my definition of “peers.”

Growing up, my peers were the other kids living with type 1 diabetes, and transitionally the adults with type 1 diabetes.  It wasn’t until I was involved in diabetes on an advocacy level that I realized, “Hey, the families caring for people with diabetes are my peers.  As are the people living with type 2 diabetes,” among others.  But it’s not like I stumbled into this revelation – I was taught by reading the experiences of people outside of my type 1 “bubble.”  And I needed to be schooled, because the generic information regarding type 2 diabetes doesn’t even begin to scratch the surface of the disease.

I’ve learned so much reading Sue, and Sir Bob, and Kate, and Rachel.  They’ve shown me how to put type 2 diabetes into context, and if they hadn’t shared their experiences, I wouldn’t have attempted to understand the other side of this diabetes coin.  I wouldn’t have learned so much.

I would have remained ignorant.

Thank you the people with type 2 diabetes who are sharing their stories and helping change the public, and the private, perception of their condition.

Mommy’s Little Pack Mule.

Running alone brings out the Spibelt, and I cram it full of my on-the-move necessities:  glucose tabs, Dexcom receiver, keys, and phone.  Even though it’s reasonably streamlined and doesn’t bother me too much to tote around all that stuff, it’s a bulkier system than, oh, I don’t know … making my own insulin.

But lo!  The child rides a bike!  And insisted on having a bicycle basket!  To which I said, “Yes!  Excellent idea and can you please carry all my shit, too?” only I did not cuss at the child!

The miles might be logged a little slower than when I’m by myself, but there’s nothing more convenient than making use of her bike basket to carry all my diabetes stuff, and I love sharing some outside play moments with my daughter.

And she likes being in charge of such important things, since she is a “big girl” and can “carry the glucose tabs because then if I want a very, very, very small bite of a glucose tabs, I can just reach in and have one, right, Mawm?”

“Sure.  But only if you make sure you slow down if I need a glucose tab, okay?”

Bartering with my happy little helper of a diabetes pack mule.

Dexcom Real Estate: Lower Back Edition.

For the better part of the last seven years, I’ve been wearing my continuous glucose monitor sensor on my outer thigh.  I rotate this site in terms of not placing the next sensor right on top of where the old one was, but for the most part, my legs dominated CGM real estate choices, and I liked it that way.

I don’t mind wearing devices, but I keep them off my torso.

Except that it’s way past time for the skin on my legs to have a moment to heal.  Normally, the only two hours I go without sensor data is when the new sensor is queuing up, and taking breaks from Dexcom makes me uneasy because it pulls my glucose meter readings out context. (“180 mg/dL?  Yeah, but is that going up or going down or holding steady?”)  But there’s a long history of use, and even the short history of adhesive rash has taken its toll on the integrity of my skin.

My legs needed a freaking break.  Another part of my body needed to step up.

I’ve worn my sensor on my back in the past, and it wasn’t horrible.  Chris would help me stick the sensor on, and daily wear wasn’t awkward as I working in an office and didn’t have anything climbing me on a regular basis.  Fast-forward to now and I work at home where there is a very lively four year old who wants to climb and hug and be silly and occasionally use the Dexcom transmitter as a ladder rung leading towards a mom hug, and that makes for a lot of “WHOA” and then “OW” moments.  For me, it’s tough to keep sensors stuck on, and wearing them on my arms and torso causes adhesive peeling on day two or three, instead of day six or seven with the thigh-placed sensors.  (And I hate pulling a sensor off before the seven day mark.)

But a leg break is a leg break, so when the sensor on my leg quit yesterday morning, I installed a new one on my lower back (left hand side towards the back, in that place where you’d put your hands if you were admonishing someone for painting the wall with hard-boiled eggs, for example).  It was the first non-thigh Dexcom sensor placement in at least four years … perhaps more.

This new placement hurt like a [descriptive gif here].  Even though the sensor installation is designed to be done in one, fluid motion, I always do it really slowly (like I did my injections as a kid) in this effort to control the sting.  So the insertion needle hit my skin and it had a bite, and once the whole sensor was installed, I was standing at a weird angle and nervous to straighten my spine because it felt like the sensor would grab all of my internal organs and take a bite.  (Exaggeration.  I straightened up a few seconds later and even though the site was tender, no internal organs were nibbled upon.)  It took about three hours for the placement to feel “settled,” in that it didn’t bother me to sit on the couch or brush up against the sensor.

Thankfully, this morning the site feels completely comfortable, and my over-used legs have a week or two to heal.  Expanding my real estate options is a definite diabetes plus.  I just need to keep reminding Birdzone not to use it as a stirrup.

 

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.)

*   *   *

Shake It Like a Bottle of Test Strips.

I can’t stop – I shake that stupid bottle of test strips EVERY SINGLE TIME before I open it.

 

 

What, you don’t?!

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