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Posts tagged ‘#dayofdiabetes’

#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).

Recapping #dayofdiabetes.

My documented day of diabetes wasn’t an all-star showing.  I didn’t hit one out of the park, but it wasn’t a complete shut-out, either.  I’m no bush-league player, so I knew how to handle the things that kept coming out of left field, even when a diabetes triple-play was in effect (morning highs! then a few lows! then a pump site change at midnight!)  But there’s no cure on deck, so I keep swinging for the fences and taking it one base at a time.

The day started with a higher blood sugar than usual, which I found frustrating because overnight numbers are usually my stable-zone (of course there are outliers, but my A1C stays stable largely in part to having overnights reasonably nailed).  Kicking off the day with a little grumpiness isn’t my style, but that’s how it started yesterday:

Sometimes my blood sugars don’t respond quickly to insulin, and I have to kick start things with a little exercise.  Self-employment affords me a flexible schedule, which I’m very grateful for, letting me jump on the ellipmachine for a few minutes to help move the correction bolus into action.

But after the initial morning high, blood sugars were oddly low yesterday.  I spent more time than usual chomping on glucose tabs.

Low blood sugars didn’t just jack up my day.  They cramped my parenting style, too, as I waited for the glucose to hit my system and reboot my brain.

Work still needed to be done, though, so I found myself prepping for conference calls in an unusual way yesterday:

Family dinner was punctuated by the soundtrack of diabetes.

My bedtime routine was ambushed by the need for an insulin pump site change (which I despise doing before bed, due to the ambiguity of the pump site working properly, having a post-site change high blood sugar, [insert other variables here]).

But overall, the technology I use to keep track of my diabetes protects me more than it inconveniences me, and I’m grateful.

And then the day was done. Over! Today is another day. As is tomorrow.

“It’s like deja vu all over again!”

Another #dayofdiabetes.

Every day (at least for me, since 1986) has been a day of diabetes, but now there’s a hashtag to go with it, so I guess that’s cool?  (Yes, yes it is.)

Today, I’m documenting what a day in the life of this type 1 diabetic is like, one Tweet at a time.  If you’re on Twitter, you can follow the #dayofdiabetes hashtag to see a dozen different day-long perspectives on what life with diabetes includes.  And if you’d like to join in, you don’t have to limit yourself to Twitter.  Log your day on Facebook, in a blog post, on Instagram, or whatever online sharing model moves you.  Track using the #dayofdiabetes hashtag, and join the conversation!

 

Another #DayOfDiabetes, Twitter-Style.

For World Diabetes Day yesterday, I attempted to participate in another round of #dayofdiabetes, using Twitter to log the different nuances of a day with type 1 diabetes.  It was a tougher day than normal, Internet-wise, because I spent the morning in the plane and the rest of the afternoon with very limited access to Wifi, but it was World Diabetes Day, damn it, so I wanted to try.

My #dayofdiabetes started early … like 2.10 am kind of early, with a low blood sugar and a buzzing Dexcom:

But thankfully, glucose tabs handy on the bedside table made fixing this number easier:

Glucose tabs help keep me from over-treating, because they are carefully portioned out and not appealing enough to have an urge to eat sixty of them.   It feels like a win, not over-treating a nasty middle-of-the-night low.  I was relieved to check in the morning and see that I wasn’t off the charts.

And then I was off to the races … or more specifically, the airport, to travel to Mississauga for the Peel Chapter JDRF Research Symposium.

The low from the night before still hung around in the form of exhaustion, though.

And airport food offerings weren’t substantial enough to fix what ailed me.

Later in the evening, it was time to dress/device juggle:

Never a simple task, especially with disco boobs:

The night at the World Diabetes Day event was lovely, but I did miss participating in the discussions online, particularly the World Diabetes Day 24 hour chat that took place all day yesterday.  Community and peer-to-peer connections keep me as healthy as my insulin does, some days.

And this morning it all starts again, with a blood glucose check on my meter and that instant yearning for a cup of coffee.

Every day is a #dayofdiabetes in my life, wifi or not.  It was amazing, catching up on the Twitter feeds of others who were participating yesterday.  I learn so much about how individualized everyone’s diabetes truly is through this project.

Here is some info, if you’d like to participate in a #dayofdiabetes, and a primer on Twitter and the diabetes community.

 

Hard to Capture.

With Twitter as the medium, there’s only so much that can be captured with only 140 characters at your disposal, especially when there are always so many juggling balls aloft.  Since it’s mostly intrinsic, these thought processes, I forget what parts are unfamiliar to people who aren’t living with diabetes.  After looking back at the Storify-version of my #dayofdiabetes experience, there’s so much there, but at the same time, there’s so much missing.

How can I explain how hard my family has worked to make sure we have insurance coverage?  And how the guilt of 16u of insulin left in my pump sometimes forces me to change the infusion set that’s in my skin in order to squeeze out the last of the insulin from a cartridge before changing that part out?  Insulin pump site changes aren’t always done “in full,” with the cartridge and cannula changed simultaneously.  There have been years in the last two-plus decades where we’ve paid nothing for insulin, and then pockets where we’ve paid the full cost.  Knowing how swiftly things would go bad if I didn’t have access to insulin is humbling.

Or the guilt that comes with this kind of mistake.  I very rarely forget to bolus for the food I’m eating, but that day, the toddler wolfed down her lunch and then was ready to bolt outside and play, and as I was cleaning up the neglected turkey and cheese sandwich, I polished off the second half of it.  And then promptly forgot to bolus.  “Frustrated” doesn’t really begin to touch the rage and guilt that sets in at this point.  I hate that there is so much about diabetes that remains out of my control, but when I can pinpoint exactly where my day went off track and it’s the result of something I forgot to do?  I have a hard time with that.  The guilt that ends up folded into so many parts of the diabetes decision making process can be intense, and relentless.  “I’m high because I was stupid and forgot to bolus for something that clearly carried a pile of carbs.”  If it were anyone but me, I’d tell them to just correct the blood sugar and try to move past the guilt part – “There’s no point in feeling guilty!  That just adds to feeling rotten.  Correct and move on.  Keep trying your best.” – but I’m not able to take my own advice.

It’s not simply guilt that’s hard to capture; sometimes it’s hard to really explain why a moment might make me so freaking proud.  Like the fact that a gross high blood sugar derailed me for a couple hours, but I still made exercise part of my day.  Exercise used to be something I actively (ha?) avoided, but slogging my way to the gym even though I felt crummy, and then leaving feeling better, and empowered, and more in control makes me feel proud.  It’s not a big deal, and it’s not a victory that anyone else would notice, but it was a good moment for me.

Same with graphs like this.  I have worked hard to make sure my overnight basals are solid, and that I’m able (for the most part) to go to sleep at an in-range blood sugar and wake up in the same in-range ballpark.  This isn’t an accident -  this is a most intentional moment.  It’s hard to capture why a Dexcom graph that’s between the lines matters so much because it seems like it’s the result of a block of time “without incident.”  It’s hard to explain how much work goes into keeping these moments as incident-free as I can manage.

A day with diabetes looks a certain way, all tucked into Twitter with a neat little hashtag.  But it’s hard to capture what we really do every day, as PWDs or caregivers.  Outside of this DOC-bubble, people wouldn’t understand high-fiving over a blood sugar result of 180 mg/dL (but did they know you were 230 mg/dL an hour earlier?).  Or why a person with diabetes would eat sugar tablets (but did they know your blood sugar was 34 mg/dL?).  Or why a “sugar-free” pie still requires carb counting and insulin (“But it’s sugar-free!”).

Participating in #dayofdiabetes was eye-opening for me, because I realized I didn’t have enough API to handle updating Twitter as much as I needed to, to account for all the times diabetes crossed my mind throughout the day.  And then again, I realized how many times diabetes crosses my mind for simply an instant, letting me continue forward in a day that, in reality, wasn’t owned by diabetes in the slightest.

A #dayofdiabetes.

There’s not much of an option for a day without diabetes, but sometimes the friends and acquaintances I’ve made through social media aren’t as acutely aware of the food math and thought process behind each insulin dose decision, so I’m jumping on the #dayofdiabetes bandwagon. Chris Snider at A Consequence of Hypoglycemia took up the challenge of “live-tweeting” a day with diabetes, and then Storify’d it, giving readers a 24hr glimpse into a full day with T1D.  I loved reading his Tweets, and after following Cherise’s go a few days later, I wanted to join in the storytelling.

I took this concept for a spin back in 2007, when I tried on my first CGM (the Dexcom STS, which was only cleared to work for three days and wasn’t waterproof, so you had to slap this giant plastic bag-type shower patch over it so you could clean yourself).  There have been some “all day diabetes” Twitterers – didn’t Bernard do it on World Diabetes Day one year? – but this new iteration will hopefully inspire other PWDs and people with different health conditions to share their story.   (My first Tweet ever was about the Dexcom sensor – does participating in #dayofdiabetes mean my social media matrix may fold into itself today?)

I started my live-Tweeting journey this morning, and I’ll be working straight through to tomorrow morning.  Hopefully it will be boring as can be, with numbers sorting themselves out all happily between 80 and 120 mg/dL, but even a day of in-range numbers comes as the result of a lot of work, and a lot of little, nit-picky diabetes management moments.  I definitely don’t log every diabetes-related physical and mental task throughout the day, but for the sake of the experiment, today I will.

A day of diabetes, running live through Twitter for the day.  If you want to follow along for the day, I’m at @sixuntilme.  If you’re interested in telling your story for a day, adopt the #dayofdiabetes hashtag as though it were a sweet, adorable, lumbering puppy scampering towards you on impossibly uncoordinated legs.  And if you want to take a look at Chris or Cherise’s live-Tweet sessions, pop over to the Day of Diabetes Tumblr account for a snapshot view.

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