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Untethered, After a Fashion.

Around 8.30 am, I took an injection of Levemir.

At about 9 am, I switched my basal profile to “OTHER” and disconnected my insulin pump.  The OTHER profile has me at 0.025U basal rate per hour (as close to zero as I can get on my pump) but still holds all my other settings.  I kept the pump in my purse and the infusion set attached to my body, with one of those pump caps (there are two that come with every box of Insets) to keep the site closed.

At 9.03 am, I put on a skirt with a loose waistband that had previously been tugged down by the weight of my insulin pump BUT NOT ON THIS DAY.

Throughout the day, my basal needs are served by the Levemir injection, but I reconnect the insulin pump to deliver my boluses (allowing me to take my meal boluses and correction doses with precision and also without piercing my skin another time because the infusion set is still in place).

Around 9 or 10 at night, my Levemir injection is pretty much toast (over the years, I’ve seen that Levemir leaves my system after 12 hours, so I usually split my dose completely on pump vacations), so I reconnect my insulin pump and spend the overnight connected, receiving the basal bump at 5 am that is delivered to combat the dawn phenomenon my body experiences.

And then, depending on what I’m doing the next day, I’ll decide to keep my pump on or off during the day.  The Levemir pen in my toothbrush holder serves as a reminder to take a morning dose, if that’s my jam.

I like having a choice.  Can’t un-choose diabetes, so having a choice as to how I deliver my insulin is a plus.

It sounds complicated, but it works for where I’m at right now, because I am aiming to make good on the whole “fit diabetes into life, not work life around diabetes.”  And as petty and superficial as it may sound, it made me bananas (read: super angry, not yellow and slippery) when I went to get dressed for the sticky, summer heat and didn’t have a good place to shove my pump.  On the waistband pulled my skirt down.  Between the cups of my bra made for weird lumps and also unnecessary warmth.

This kind of frustration is the shit that can send me into a week-long DBM (Diabetes Bad Mood) and I am trying to mitigate as much of that as possible.  So off came the pump.  On came the highly structured plan to untether in the most graceful way possible.

Keeping an eye on my CGM showed when things were working and when things need tweaking, and I felt at peace with my diabetes instead of Rage Against the Islets.  Which, while a solid band name, doesn’t do much for my emotional health.

Pulled Over.

I had just buckled the girls into their car seats and was ready to make the drive home from day camp, and as I turned the car on, I reflexively grabbed my Dexcom receiver to take a peek at my blood sugars before I started driving.

Shit.  68 mg/dL with an arrow straight down and a blood drop signaling a need for calibration.

“Hang on guys,” I said to my daughter and her friend, who were already singing camp songs in the backseat.  “I need to wait a minute before we head out.”  I pricked my finger quickly to check my blood sugar and, sure enough, saw the 63 mg/dL on my meter waving its arms at me.  No worries – I always have a jar of Glucolift in my center console.

Except this time.

Shit.

“Hey girls. Do you guys have anything left in your lunches?”

“Yeah, I have strawberries and a pouch left in my lunch.  Do you want it, Mom?”  Birdy offered.

“Yep.”  I climbed out of the car and went back to the trunk to rummage around through her lunch bag.  Pulling out the snacks, I gobbled them while standing at the back of my car, a mom on a mission to bring her blood sugar up before driving.

We sat in the parking lot for ten minutes or so, and I watched the CGM graph arrow relax and point sideways.  A glucose meter check showed me at 78 mg/dL, so I felt I was on the rise.  We started the ride home.

Except the CGM alarm went off 15 minutes later, only this time it showed double-down arrows and the BELOW 55 mg/dL message on the screen.

“Shit.”

Certain parts of Rhode Island are relatively rural, and sometimes you have to drive for a while before you pass a gas station or a convenience store.  I immediately started calculating when I’d pass the next place to stop.  I also assessed my symptoms (none) and instinctively reached over to disconnect my insulin pump from my hip.  I thought the two little kids in my car.  I thought about where I could pull over.  I worried about what was safer: driving for another minute or pulling over and not having any food in the car.  And I hoped that worrying so intensely would make me feel stressed and hopefully jack my blood sugar up a little more.

But then, just ahead, I saw the familiar orange and brown sign of a Dunkin Donuts coffee shop.

“Yes.”  I put on my blinker and pulled into the drive through lane of the coffee shop.  “Girls, I need to stop here and get an orange juice, okay?”

“DOUGHNUTS!!!!!” they yelled in unison.

“Not this time, guys.  I need to get some juice and wait a few more minutes before we can keep going.”

Minutes later, I was in the parking lot with an empty bottle of orange juice and two patient kids in the backseat of the car who were peppering me with questions about diabetes.

“Why did we have to stop?”

“Because I needed juice to treat a low blood sugar.”

“What’s a low blood sugar,” asked my daughter’s friend.

Birdy piped up.  “It’s when you have diabetes and you have too much insulin or not enough food in your body and you need glucose tabs or juice or doughnuts but not today because these doughnuts have gluten in them.”  (All in one breath.)

“No doughnuts?”

“Sorry, guys.”

“Can we drive soon?”

“Yes.”

“Okay, can we sing until we start driving?”

“Sure.”

We sat in the parking lot while I waited for the orange juice to do its thing, keeping an eye on my CGM graph and an ear on the two little kids in the back of my car who were belting out songs they learned at camp and who trusted me to take good care of myself in order to take good care of them.

Only no doughnuts, because gluten.

 

My IOB and Me.

There’s a lot of data that PWD (people with diabetes) spin through on a daily basis – carbs counts, insulin units, blood sugar results, blah, blah, blaaaaaaah there’s so much shit sometimes.  I’ve been encouraged by my endocrinologist to download my data and review it every week or two in order to assess trends over time, but I don’t do that as often as I should.  I’m more of a monthly downloader, and I definitely download every night-before-the-endo-appointment, but a systematic review of my diabetes data is one of those things I could do more consistently.

However, the data is crucial to my health success.  I just tend to lean more heavily on the daily data than the month-long reviews.

Like my beloved IOB.  IOB stands for “insulin on board” and it’s a tool in my insulin pump that calculates how much insulin from my most recent boluses is still “active” in my system.  And I don’t know if most pumpers love their IOB data as much as I do, but I LOVE mine.  Love.  Stupid love.  It’s part of the trifecta of diabetes that I rely on every night before bed.

The checklist is short, but always, always the same: every single night before I go to bed, I check my blood sugar on my meter, comparing that number against the CGM graph.  Then I click through on my CGM graph to get feel for how the day has mapped.  And then I click through on my pump to check my beloved IOB to see how much insulin might be in play.  (Okay, honestly I check on my daughter in her bed first.  She’s usually asleep with her hair tousled into a huge mess against her pillow, with Loopy curled up against her legs.  But then I do all the diabetes garbage.)

Checking the IOB in conjunction with the CGM graph and my glucose number gives me a fighting chance against middle-of-the-night hypoglycemia.  And in the last year or so, it’s been a check that’s worked really well.  Several times (last night, for instance), I will look at my data sources and determine that a low might be teased out overnight, and I can pop a glucose tab or run a temporary basal rate on my pump for an hour or two to keep me in range.

My overnight lows are way less frequent than they ever have been before, and that means I clean juice and sweat from my sheets way less often, so there is a practical bonus aside from the whole “not going wicked low while sleeping” thing.

There’s the takeaway:  IOB monitoring helps cut back on laundry.  Use all the money you save on detergent to buy a bionic pancreas!

 

Couched.

“Can I lay here?”  I pointed to the almost-available section of the couch, where if Chris moved his legs juuuuust a little bit and Siah got her fat furry butt off the cushion, I could curl up and let my brain go quiet after a full day of writing.

“Sure thing,” and Chris adjusted his body.

“No,” was the message Siah sent me with her cat telepathic powers, but I snuggled in anyway.

And in one, seamless movement, the couch cushion leapt up and grabbed the infusion set from my arm with its teeth and ripped it off.  The couch’s fangs were gigantic and its talons just as daunting, determined to keep any diabetes device from properly resting against my skin.  I was livid – this infusion set was only a day old! – but I knew I was no match for the couch.  It was huge, and it had an agenda of rage.

I eased away from the cushion slowly, trying to keep from agitating the angry beast.  The couch snarled and tensed, poised to make a play for my Dexcom sensor if I dared to get comfortable against its fabric again.

“You okay?”  Chris asked.

“Yeah.  The couch ripped off my infusion set,” I started to say, and then I felt the slow drag of couch claws against my shin, warning me to embrace silence.  “I mean, I ripped off my infusion set.  I did it.”

The couch quieted and settled back against the floor.  And I went upstairs into the bathroom to put a new infusion set on.  And when I came downstairs, I sat on the floor, the steady breath of the wicked couch prickling the hairs on the back on my neck.

“Next time …” it panted like Dr. Claw.  “Next time.”

 

Running the Gamut of Emotions.

In my diabetes life, emotions are right up there with insulin and food as influencers of blood sugar management.  And I wish it wasn’t so, because stress and excitement are hard to “plan.”  (Replace those actual quotation marks with finger quotes, because they fit the bill a bit better.)  And the emotions that come up as a result of diabetes crap?  Holy shit, they are a circus all their own.

The emotions of diabetes are a thing for me, and one that I need to work to manage as fastidiously as I work on my numbers.  Which is why my Animas column this month is about that exact thing:

“Diabetes is more than the lab work results and pricking fingers, taking insulin, counting carbs.  That’s the to-do list we have to check every day, but it doesn’t even begin to touch the other side of life with a chronic illness, and that’s the headspace part.  Some of my academic friends call it the psychosocial part; I think of it as the emotional portion of managing my diabetes, and in my life, managing my headspace is as important as managing my blood sugars.

There’s a whole range of emotions connected to diabetes that I run though on any given day.”

For the full article, click over to my columns at Animas.  And for more on emotions and diabetes, you can basically read anything I’ve ever written here on SUM.  :)

Feed Me.

“I spent [insert slightly obscene amount of money] at the grocery store this afternoon … again,” I said as I put the grocery bags on the kitchen floor.

Chris looked over and assessed the content of the bags.  “It goes into our bodies.  This is what we should be spending our money on.”

Food is an important topic in our house, ranging from its complicated relationship with my diabetes, its influence and  role in my daughter’s health, and overall how society pushes a confusing food agendaFood is a reward.  Food is a punishment.  Food is confusing as fuck and I’d rather just view it as food.

But as much as I’d like to say that I follow all the “rules” and do right by my body at all times, I slip a lot.  Unhealthy food habits creep their way into my regimen almost unnoticed at times.  (Sneaky little bastards.)  For example, about a year ago, I actively tried to cut back on the amount of coffee I was drinking, but after a few months of half-decaf and picking water over iced coffee, I found myself reintroducing that second, and then third cup of caffeinated awesomeness.  (Because that’s a huge problem for me – coffee is awesome, and I like it very much.)  But despite how much I might want to snuggle up with a giant iced coffee, it’s bad news to consume so much of the stuff.  I need to scale back.

I also have a tendency to defer to things like prepackaged and pre-measured yogurt in order to take a crack at keeping blood sugars from going nuts.  If I need a snack, it’s easier to reach for something already carb-counted, but that’s not always the best plan because I’d much rather avoid pre-packaged, if I can.

I won’t even mention the gluten-free journey, because that’s been an exercise in dedication and frustration all unto itself.

Basically, I’ve worked hard to cut out some bad eating habits, and some of them are working their way back in.  This trend needs to be met with an “Oh hell no” because I work too hard at being healthy to derail efforts by something as daily as food.  I need to revisit food logging, even for just a few days, to realign my brain with my mouth and hands.

In the past, I used an app to log food choices, but this time, I have a sharpie marker, a piece of printer paper, and a firm resolve.  I need to see my choices in black-and-white (or, specifically, teal-and-white, as the teal sharpie marker is really lovely) so I can make better choices.  Otherwise, I’ll end up swimming in an endless pool of iced coffee and protein bars.

… which kind of sounds delicious, aside from the whole “protein bars looking like poop” thing.  I think I need to stop this post now, because it just derailed.

The Emerging Diabetes Online Community.

I’m really proud of this paper, The Emerging Diabetes Online Community, written with Marisa Hilliard, Jeff Hitchcock, Tamara Oser, and Korey Hood, about the diabetes online community and the importance of peer-to-peer support between patients on the Internet.

The official abstract: “Diabetes self-management is complex and demanding, and isolation and burnout are common experiences. The Internet provides opportunities for people with diabetes to connect with one another to address these challenges. The aims of this paper are to introduce readers to the platforms on which Diabetes Online Community (DOC) participants interact, to discuss reasons for and risks associated with diabetes-related online activity, and to review research related to the potential impact of DOC participation on diabetes outcomes.”

There are a lot of friends and colleagues mentioned in this paper, like Children with Diabetes, Scott Johnson, Diabetes Mine, Texting My Pancreas, the CGM in the Cloud group, and several others.  Actually, that’s one of my favorite features of this paper, noticing how many of these resources are created and maintained by people I consider friends.  Speaks to the true connectivity of the Diabetes Online Community and how what we provide for one another is hard to quantify but easily recognized as “important.”

It continues to amaze me, seeing how much this community has changed and grown and evolved since I ventured online ten years ago.

To download the paper, you can click on this link and the PDF is free.

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