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Posts from the ‘Psychosocial Support’ Category

Looking Back: Complications.

As I head up to the Joslin Clinic today to have my eyeballs, and my soul, looked at to make sure both are fine, I was reminded of this video from last year about diabetes-related complications.  I still stand by the sentiment that you owe it to yourself to live the best life possible, even with whatever you’ve got.

Hopefully today goes well. Either way, I’m on it.

That Escalated Quickly.

After downloading and uploading and reloading all my device data to Diasend, I’ve seen the Big Picture, and it kind of blows.

For a good, long clip, things have been completely fine.  In range most of the time, not too many gross lows, and highs were classified as an extended 180 mg/dL, with symptoms to boot.  Well done!  Diabetes on point!  Celebrate by shoveling snow!

But a hiccup here and there have given way to a slippery slope of fuckery.  My two week average a month ago was fine.  My two week average yesterday was gross and not at all where I want it (and know I can have it).

I’m glad I’ve looked at my data, because I’m not sure I would have noticed just how dodgy things had become.  (And a quiet but still curmudgeonish thank you to the need for a flurry of paperwork in order to get my new insulin pump through insurance approval, forcing me to provide blood sugar logs and other data points in order to convince my insurance company that yes, I do have type 1 diabetes.)

I didn’t realize how much higher my two week average had become until I looked at it and recognized the need for change.  Two weeks for me makes a big difference, because it’s in that time frame where I make crappy tendencies into crappy habits.  Ignoring high alarms is okay for a day, but not for a week.  Forgetting to pre-bolus can roll by a few times but more than that equals out to crummy postprandials.  Carby food choices that are lackadaisically carb-counted brings on the blood sugar roller coaster.

Eff that noise.

Time to deescalate this.  Quickly.  Before it becomes as piled on as the three foot mound of snow on the back deck.

Missing Meter.

The initial search through my bag was kind of nonchalant.  “Where is my meter bag?”  Bright pink with a smiling bear on one side, it’s a hard bag to misplace, even in the seemingly unending abyss of my purse.

But the flurry of leaving the house that morning to catch an early flight left me mentally snowed-in.  I brought it with me, right?  I know I checked my blood sugar that morning, and I had a clear memory (didn’t I?) of pricking my finger on the plane after we had reached cruising altitude, so where the hell was my glucose meter?  I had it just a few hours ago?

“Where is my glucose meter?”

The search went from casual to frantic in a matter of minutes, when I realized that my meter bag was nowhere to be found.  Not in my suitcase, not in my book bag, not in the rental car.  No memory of where the hell it could be, and all the moments I’ve ever checked my blood sugar on a plane were melting together.  Did that happen today, or had I been working off info from my CGM graph all day long?

Just as Chris and I confirmed that my meter was, indeed, MIA, my Dexcom sensor alarm went off, warning me that my sensor was going to die in two hours.  And the “low battery” alarm went off a few minutes later on my pump, reminding me that it needed a new battery.

“Everything is breaking and I’m an idiot.  I’ve never, ever left my glucose meter behind before.  Ever!  On so many of my trips, I’ve packed an extra meter, but even on the trips where I didn’t, I still didn’t lose my meter!  I’ve never lost my glucose meter before, in like three decades with diabetes.”  I was rambling, but frustrated.  The device I needed most to properly dose the drug I needed most?  Missing.  Data crucial to my safe survival?  Inaccessible without purchasing a backup system.

(And, as luck would have it, I had just refilled my meter bag with a brand new bottle of 50 test strips and a fresh AA battery for my pump.  Reminded me of the time I replaced my car’s exhaust system, filed the tank up with gas, and then proceeded to total the car.)

Thankfully, finding a pharmacy that sold the brand of glucose meter I had strips at home for was easy enough.  (I didn’t want to have to replace the meter, again, when I got home.)  And thankfully, we have the means to purchase a meter and a bottle of test strips without insurance coverage.  But holy shit, I was shocked to see the sticker price for a bottle of 25 test strips.

“Forty five dollars?  For 25 test strips?  That’s bananas!”  I said the pharmacist.  “How do people afford these things without insurance coverage?”

She shrugged.  “They don’t.  They buy the CVS brand and the strips that go with that one.  Most people don’t pay for the top tier strips out of pocket.”

“But the accuracy is …”

“It’s what it is,” she said.  She finished ringing up the meter and strips (and AA batteries for the pump), bringing my grand total up over $100.  For a meter, 25 test strips, and batteries.

“This is the price for maintenance,” I said to Chris.  “For the stuff that keeps me healthy.  I can’t imagine what the cost would be to do more than “maintain.’”

After reuniting with a glucose meter, our trip continued on without issue.  But throughout the rest of the week, I thought about having access, and having the financial means to replace things I accidentally lose, and being grateful.  I thought about the Spare a Rose campaign and how far $5 goes.

This holiday season, I’m more grateful than ever for more things than I realized.

(And when we came home on Friday evening and I went into the bathroom, I saw my glucose meter sitting on the bathroom counter, halfway hidden underneath a hand towel.  Never again!)

 

Let Loose.

(Is it okay to let loose with a stream of consciousness sort of thing today?  I hope so.  My mind isn’t capable of anything else at the moment.)

I’ve been thinking quite a bit about the diabetes community.  So much has changed since the Internet started to populate with patient stories.  I don’t mean that in a “oh, the industry!” sort of sense, but more that the concept of “I am not alone with diabetes” has gone from hopeful to factual over the last decade.  I love the diabetes community.  After such a long gap between camp and finding online support, I appreciate the friendships – real and true – I’ve forged over the last decade.  To go full Jerry McGuire on the whole mess, they complete me.  I even appreciate the people I find prickly to a certain extent, because my interactions with people I don’t get along with help me grow as a person.

My feelings about the community are a weird contrast against diabetes itself, because the disease is not something I love.  I don’t appreciate it.  I don’t view it as a gift.  I view it as a disease.  So it’s a strange hybrid feeling to be so taken with a group of people anchored around a disease I would give back in a heartbeat.

(Oh hell yes, I’m in that kind of hug-everything mood today.  Wait until I cut-and-paste blooming violets and rainbows and doughnut rain up in this blog post.  It’s a combination of jet lag and hypoglycemia.)

By contrast, I haven’t wanted to share so much online these days.  I thought I was hitting a pocket of diabetes burnout a few weeks ago, but then I realized my blood sugars were fine.  I was checking my blood sugar at the necessary times.  I was wearing my devices and doing whatever was necessary to keep them, and me, up and running.  It’s a comfortable diabetes apathy that I’ve settled into, with results that are in range enough and diabetes control that falls within the guidelines well enough.  But I’ve wanted to shut the computer more and more lately.  Maybe it’s not diabetes but social media burnout?

Over the last few weeks, my life has been busy in ways that have nothing to do with diabetes.  I’ve been outside logging miles on the running trails, as this is my favorite time of year to run outside.  I have a new, comfortable routine of waking up before the rest of my family and making a pot of coffee, then reading blogs and emails while single-handedly killing the pot of coffee.  (Which means, by the time everyone else wakes up, I’m completely lit.)  We moved to a new town, I’ve been on the road for work, I’ve been investing myself in friendships and family, and I’m trying to spend more time talking to people I love instead of Tweeting into the abyss.  I made a conscious decision to pull back from the Internet and rethink how I felt about advocacy, especially in the wake of, for me, a less-than-fulfilling Diabetes Month.

And then yesterday I spent the day with the P4DC team and this welcomed wave of re-invigoration washed over me.  The conversations were diverse, but did close with a brainstorming session about Spare A Rose, which reminded me that the DOC isn’t about sharing thoughts and feelings without recognizing how frigging lucky we are.  We are lucky.  I feel like we found our footing, as an online community, by connecting with one another and comparing our good moments with our tougher moments, talking about our general lifestyle stuff and we got really comfortable in that space.  And then we started to realize, after connecting with our fellow and privileged peers (because if you’re reading this on a glowing screen, you’re luckier than most), that we live in a bubble of sorts.  We have nice problems to be managing, all things considered.  I think we came to realize that, as a community, and our ambitions and outreach started to step outside of serving ourselves.  Greater good sort of stuff.

That inspires the absolute hell out of me.  Changing our world takes a lot of effort and dedication and determination but good heavens, we can do this.  I am going through the ebb and flow of life and diabetes and all that comes with continuing to move forward but when I look at this community and see what we’ve done, and then consider what we’re capable of, the advocate in me rises from the ashes of burnout.  Like a phoenix.  (Or, probably  more realistically, a groundhog.)

Whether furry or on fire, my desire to be part of this vibrant community remains intact, intense, and appreciative.

Birdy the Kid and Jerry the Bear.

“Jerry has diabetes, like you do, mom.  So I give him food and insulin and check his blood sugar and he likes to play archery.”

A brief pause as Birdy rand her hands over Jerry’s soft bear ears.

“Mom, what’s archery?”


A photo posted by Kerri Sparling (@sixuntilme) on

[Disclosure:  Jerry was a gift from Hannah to Birdy.  We did not purchase Jerry.]

Yesterday, Hannah Chung from Sproutel kindly visited Birdzone and I to drop off a new friend for my daughter:  Jerry the Bear.  Jerry is a stuffed animal bear who has type 1 diabetes, and part of snuggling him and playing with him can also include checking his blood sugar by pressing a button on his paw.  Developed to help kids make sense of their own diabetes diagnosis, Jerry helps normalize diabetes by being a kindred spirit who also needs insulin and glucose tabs. 

He’s a stuffed animal who happens to have diabetes.  Similar to how I’m a mom who happens to have diabetes.

And that’s exactly how I want my daughter to learn about life with diabetes, with the constant, comfortable caveat that diabetes provides a to-do list, but it can be done.  And it can be fun.

Birdy knows quite a bit about diabetes, but mostly the brass tacks sort of stuff.  She likes to press the button on my lancing device (though she’s always surprised when a drop of blood comes out – “Does that hurt, Mom?”  “No, kiddo.”  “Are you sure?  Because I see blood.”), she prides herself on selecting the spot for my insulin pump infusion set, and she has a solid grasp on the meaning of the sounds ringing out from my Dexcom.

What she and I have not discussed, however, is what so many of the numbers mean.  She knows that my glucose meter gives me numbers of some kind and that I respond to them with certain sets of actions, but the numbers aren’t in context.  165 means the same at 50 means the same as 433 … nothing.  They are just numbers, or at least they were, until yesterday.  Yesterday, through her interactions with Jerry, Birdy learned what “high” and “low” look like as glucose numbers.

“Jerry is high.  See?  His number is one-seven-six.  He has to pee.  I need to give him some water and some insulin,” she said to me yesterday and she and Jerry were coloring at the kitchen table.

“Oh yeah?  So what will you do, then?”

“Mom, I already said I will give him insulin.  And some water.  I know what I’m doing.”

“Okay then,” and I turned away so she couldn’t see me smirking.

Later in the afternoon, she asked me how many glucose tabs she needed to give to Jerry if his blood sugar was low.

“How many do I usually take?” I asked her.

“You stack them up on the counter.  You take four.  Is four right, mom?”

(And this is where she teaches me something  – I do stack up the glucose tabs on the counter before I eat them.  I take out a set number and make sure I eat precisely what I take out, to help avoid over-treating and to also help protect me from forgetting to eat enough in the flurry of a hypoglycemic episode.)

“Yes, four should do it.”

“Okay.”  She “feeds” Jerry four glucose tabs and checks his blood sugar.  “Oh, I fixed it.  He’s not low anymore.”  She smiles, satisfied.  “Hey, do you know that if I smush his fur down and draw my finger through it, I can make eyebrows for Jerry?”

I want her to continue to draw eyebrows on Jerry.  Just because his little stuffed pancreas doesn’t splutter the way it should doesn’t mean he should have weak eyebrow game, yeah?

As she learns, I want her to feel safe and feel protected, empowered to ask and to help.  Resources like Jerry aren’t just for kids with diabetes, but for kids touched by diabetes on all levels.  I want my daughter to learn about my diabetes absent discussions about complications, fear, and pity.  I want her to see type 1 diabetes in the context of my actual life, which is filled with joy and chaos unrelated to my health.  She should know about this health condition because it’s part of what I do every day, and part of what she does, too, after a fashion.

Because it’s not about diabetes; it’s about life.

#DayOfDiabetes Went a Little Rogue on Me.

I started the day strong, but after hours of a frustrating high blood sugar and seemingly bolusing saline instead of insulin (but it was insulin – I checked), I hit a big NOPE when it came to documenting the end of my #dayofdiabetes. I didn’t want to keep documenting my frustrations, not because I was ashamed of them, but because I was FRUSTRATED, you know?

Even though there isn’t a hashtag for my day today, I’m still here. I’m still doing this diabetes thing. And despite some frustrations, I remain fine.

Chronicle. (See also: #dayofdiabetes)

(Chronicle was a movie from a few years ago that I actually liked very much, even though it god a little crazypants towards the end.  Still, a quality film, IMO.)

But today’s post is not about that movie.  It’s about chronicling a day with a chronic condition.  For Diabetes Awareness Month, I’m taking diabetes awareness to task by documenting the daily duties of life with type 1, from site changes to emotional responses to blood sugar numbers … and all the non-diabetes-yet-still-diabetes crap in between.  A big advocacy “thank you!” to Chris Snider’s #dayofdiabetes campaign, and I think November is a perfect time to pop the bubble of diabetes awareness.  People living with diabetes know what diabetes is like.  Let’s show people who might not understand what a day in the life truly means.

Join in on Twitter using the hashtag #dayofdiabetes and share what strikes you about life with diabetes.  Then share that hashtag with your non-diabetes friends, family, coworkers, and Internet connections because Diabetes Awareness Month should be about educating outside of the DOC (Diabetes Online Community).

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