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Posts from the ‘Psychosocial Support’ 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!

Diabetes Blog Week: The Quiet Parts.

Feels weird, and slightly ironic, starting a blog post about the diabetes-related things I don’t share here on the diabetes blog I’ve written here on the open Internet about my personal experiences with the disease.  It’s been ten years of this – the idea that there’s crap I don’t talk about might seem like a big fat lie.

But there are plenty of things I have decided not to share, both in the realm of diabetes and in the regular flow of insulin-free life.  I’m an oddly private person, considering what I do professionally.  So what do I share, and what do I choose not to share, and why?

“You put it out there, so you’re inviting people to judge you.”
That’s true.  By putting our lives “out there,” we are giving people information to judge us, for better or for worse. Giving the specifics of my lab work results or my weight or my fasting blood sugar this morning provides people with a window into my health reality.  It lets people put me into a statistic, or a range, or an assumption.  Some people are comfortable with allowing that kind of access.  I have come to realize that I’m not that kind of person.  No, I won’t tell you my A1C, even if it’s stellar and in-range and covered in fucking glitter.  I work very hard to manage this disease, and I’ve come to realize that I’m not the kind of person who does well being judged for that specific number, especially when that judgment attempts to minimize my efforts.

Because (being totally honest), I cared very much about the critique for a few years.  There was a time when I posted about my A1C while preparing for pregnancy (it was higher than what my doctor’s recommended, and I was writing about my struggle in bringing it down to baby range), and the comments that came back about my number ranged in their tone and sentiment.  Invited, warranted, or not, I can handle critical commentary, but there is a fine line between “constructive criticism” and “cruelty.”  And once I stopped getting all twitchy about the unsupportive commentary (because it’s not all going to be supportive), I felt a lot better.  Getting older has made me care less about being judged and more comfortable and confident about my decisions, decisions like not sharing my personal lab data.  Or like decisions to write about diabetes online in the first place.

“Just because you give them a window doesn’t mean you have to give them a door.”
We are not obligated to share.  We chose to share.  I write this website, and will continue to write here, because of the connection to the diabetes community that sharing fosters.  I love that part of it.  It took me a long time to realize where my boundaries are, and to feel comfortable staying within them.

While I chronicled my pregnancy in a very detailed way, I didn’t share everything.  Before my daughter was even born, I decided to keep her name offline, and after sharing some of her baby stories, I decided to keep her offline, too.  And I share a lot of the silly things related to diabetes, and some of the complicated things, too, but there are thoughts I have about diabetes that are sometimes so terrifying and other times so fucking arrogant that I keep those in, too.  Diabetes is so personal and runs a pile of gamuts.  Sharing it all feels like too much, at times.  Sharing some, however, helps me deal with the emotional side of this chronic illness.

A window in our lives?  That sounds nice.  Opening the door and letting in everything, and everyone?  I can’t manage that kind of flow.  What if a bat flies into my living room?  Fuck bats.  So I’m sticking with the windows, with the screens firmly in place.

“So what kinds of stories will we never hear you tell?  And why won’t you tell them?”
I don’t share stories about my extended family without their permission.  I don’t post about where I live or where I work during the day.  I absolutely do not write about arguments with family.  I do not share things that make me sad while I’m going through them (but sometimes I will share once I’m on the other side of that kind of emotional upheaval, as is my comfort level).  This kind of paints life as though it is “perfect” and without struggle, but I think we all know that the stuff we read on the Internet is always written with specific bias and through a specific lens. (Though I do try to disclose my financial biases, and also, I will always like my kid more than I like your kid.  It’s a fact.  Unless you are my husband, in which case I like your kid as much as I like my kid, for obvious reasons.)

I won’t tell some of these stories because they sometimes hurt to go through, never mind the added pain of retelling them.  I won’t tell them because they are mine, and privacy is an often-underrated but essential part of a peaceful life.

What I will share are stories about how diabetes affects my life, and how it plays a part in shaping my experiences.  I will connect with others through these stories and those friendships will color my existence in a way that I am still understanding and always appreciating.  I will share in hopes that someone will feel less alone, just like I feel less alone every time I read a new blogger or find a new Twitter DOC connection or have an awkward interaction with someone in a bathroom.

Regardless of how much or how little you share, your voice is important, and our community flourishes as a result.

*   *   *

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:  “Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself?  (This is not an attempt to get you out of your comfort zone.  There is no need to elaborate or tell personal stories related to these aspects.  Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.) (Thank you Scott E of Rolling in the D for this topic.)”

Diabetes Blog Week: I Can.

Decades ago, my body did whatever it did to reroute the purpose of my pancreas, and left me with a diagnosis of type 1 diabetes at the age of seven.

As a result, I can’t make insulin.

Diabetes was presented as a series of “You can’ts” to me, back in 1986.  You can’t eat that, you can’t do that, you can’t try that, you can’t be that.  It was an unsettling feeling, being a child and living by a series of perceived restrictions.  But not knowing any differently, I spent way too much time thinking that there were things I just could not do instead of recognizing and celebrating how capable my body remained.

It wasn’t that I didn’t make insulin.

It’s that I had to coax out the instinct to live beyond diabetes.

I had to relearn how to trust myself, which was a weird paradigm shift because I was used to not trusting my body.  (When your immune system unexpectedly turns on you, you might develop a trust issue or two.)  It’s a learning curve, even to this day.  I trust my body to run for miles and hold my daughter in one arm, grocery bags in the other, but there are hiccups thrown out by diabetes here and there.  Like last night, when my low alarm went off for an hour and a half because my blood sugar was cemented in the 50′s for that long and I had to put reason and restraint into practice by treating the low cautiously instead of devouring the contents of the fridge with reckless abandon.  I had to trust the food and trust myself to bring my blood sugar up enough but not too much, aiming for that balance without caving to frustration.

I don’t know how to achieve balance, but I do know how to remain in pursuit of it.  I’m still learning.  I’m always learning.  Diabetes is not a hole in me or the whole of me.  It’s a thing that requires thinging, and I’ll thing the hell out of it until my last breath.

But not at the cost of giving in to it.

I need to remember that I can do this.  I can conquer this.  I can design this and devour this and delight in this.

I can.  I fucking can.

*   *   *

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:  “In the UK, there was a diabetes blog theme of “I can…” that participants found wonderfully empowering. So lets kick things off this year by looking at the positive side of our lives with diabetes. What have you or your loved one accomplished, despite having diabetes, that you weren’t sure you could? Or what have you done that you’ve been particularly proud of? Or what good thing has diabetes brought into your life? (Thank you to the anonymous person who submitted this topic suggestion.)”

Click for the I Can – Monday 5/11 Link List.

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.

FitBit Motivation.

I like my FitBit.  I’ve been using one since March of last year and it has consistently kept me motivated to keep moving.

… okay, let me check that for a second.

It’s not the device itself that keeps me on the move. Initially, I liked seeing the numbers climb on my step count and watching that ticker drove me to earn higher numbers.  It was a stark mental contrast to how I felt about my diabetes numbers, where I was aiming for more of a game of golf (bring that number DOWN, not UP).  FitBit was cool because the higher the number, the better.

Eventually, the newness of the self-tracking incentive wore off and I wasn’t as eager to fight to hit my step goal.  I still exercised daily, but with a little less oomph, if that makes sense.

What reinvigorated my motivation are the people I’m interacting with through the FitBit community.  And this is where diabetes intersects a bit, because most of the people I’m connecting with through FitBit are friends from the DOC (diabetes online community).

One of the things I like most about the FitBit are the challenges you can engage in.  Here’s a screenshot of what’s available (over there on the right) –>

The ones I like the most are Workweek Hustles, because you have five days to not only reach your own self-set goals, but you can pace yourself against friends, making it a friendly* competition.  As the FitBit devices sync with the app, you can watch your step count climb and see which participant will come in “first” (with the most steps).

Dude, it is FUN to play and to flex my competitive muscle.  (I’m a little bit competitive.  Maybe more than a little bit, judging by my husband’s bemused raised eyebrow every time I go to use the treadmill at 9 pm.  “FitBit challenge again?”  “Yep.”  “Go get ‘em.”)  And while exercise isn’t something I’ve ever shied away from, it’s more exciting when I’m held accountable.  If I’m in first place, there’s no way I’m going to skip a workout or avoid going for a walk or run, because I want to keep my foothold on that leader board.

These competitions play out awesomely for my blood sugars, if I stay on top of things.  Making an effort to move more during the day has brought my total daily doses of insulin down by more than 20%, which for me is quite a bit.  (Also, this is not medical advice or science of any kind.  Talk with your doctor if you are considering taking anything you read on the Internet as medical advice, because they are a doctor.  And I am simply an over-caffeinated FitBit addict.)

More importantly, I noticed that my activity level goes up significantly when I’m engaged in a FitBit challenge.  If there’s a competition to participate in, reaching my step goal of 12,000 steps per day is a piece of (gluten-free) cake.  It’s like having a dozen workout buddies.  (Read Laddie’s take on the challenges here.)

FitBit challenges are pretty freaking awesome.  And fun.  And help break up some of the mundane ho-hummishness that my exercise routine can fall into.  A dose a fun, friendly competition and accountability is exactly the gentle incentive I needed.

* “Friendly” sometimes needs to be in quotes because a certain academic who shall not be named has a tendency to become a thorn in my competitive side.  Cough – @miller7 – cough.

Boop Beep Boop.

“Boop beep boop!”

The sound is unmistakable, as it used to ring out from my hip for so many years.  That noise, the sound of a Medtronic insulin pump alerting for whatever reason, used to be my soundtrack before Fur Elise and the “boop boop boop!” of the Animas pump replaced it.

Boop beep boop!”

I was sitting outside of the classroom where my daughter was meeting with the school administrators for her pre-kindergarten screening tests when I heard that familiar noise.  (The tests upon which I will not comment because this whole process is so strange and so involved – whatever happened to reading books and milk cartons and coloring?  In related news, I’ve become an old bird.)

Looking up, I saw a teacher walking down the hallway, casually talking to her colleague with their lunch bags in hand, her fingertips deftly and instinctively pressing the buttons on her insulin pump, administering what I assumed was a lunch bolus.

“Boop beep boop!”

Even though I’ve found so much comfort in the diabetes community and have made lifelong friends who are funny, kind, and also happen to not make their own insulin, I wanted to leap up and say hi to the woman in the elementary school who also wore an insulin pump.  She was here!  In my town!  Randomly!  A PWD (person with diabetes) spotting in-the-wild is always exciting.  Kind of like finding Bigfoot, only with fewer over-the-shoulder glances and more “see a birthday cake!” faces.

But instead, I sat in the folding chair and minded my own business, secretly thrilled once again by the knowledge that it only takes a quiet series of beeps and boops to remind me that I am not alone.

 

Slackadaisical.

Self-tracking isn’t limited to the number of steps I take in a day or mapping out the data of my blood sugar trends. In my life, tracking emotional health is important, as it influences my physical health. Yeah, even if I try to pretend it doesn’t.

Gripper socks are those socks that have the little bits of plastic on the bottom, designed to keep you from slipping and falling on your face. They help you gain your footing when you need it most.

Playing that metaphor out from a diabetes perspective, there are some things I do to keep from doing a horrible faceplant into apathy (which leads to less-than-optimal diabetes management, for me). Kind of like gripper socks for self-management, giving me traction instead of sending me into a free-fall of slackadaisical not-giving-a-shit.

This video is about recognizing my own apathy signs and signals and making attempts to wrangle them back under control.

Gripper socks!

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