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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.

How to Have Sex with an Insulin Pump.

Don’t.  For the love of god, do not have sex with your insulin pump.  It’s an expensive insulin delivery device, and it’s not to be trifled with.

But if the Google search you made was to find out how to have sex with the insulin pump in the vicinity, then that’s a whole different take.  Because that topic comes up a lot in the women’s discussion groups that I’ve taken part in, and it was a particularly hot topic at the Diabetes Sisters conference earlier this month.  The same sorts of questions come up every time, from new pumpers and people considering adding a diabetes device to their management plan:

“How do you deal with wearing a device when you’re trying to be, like, naked?”
“Do you disconnect during intimacy?”
“Does it get in the way, physically?”
“Does it get in the way, emotionally?”

(And, for the record, I love that these questions get asked.  And the best part is, they’re asked in rooms full of women who have either met for the first time that day or haven’t even formally met yet.  Diabetes, for all its chaos, does bring a certain level of discussion comfort and camaraderie, and I love that.  Love.)

Insulin pump = sexy time?

“How do you deal with wearing a device when you’re trying to be, like, naked?”

This was a tough hurdle for me, because I went so long without wearing any devices.  Diagnosed as a kid and not pumping until 2004 or CGM’ing until 2006, I spent a big part of my diabetes life without any external “symptoms,” so to speak.  Initially, I needed to be comfortable with my device(s) before I could expect anyone else to be, and that did take some time.  But I like the “no big deal” philosophy to these moments.  If I give the impression that these devices aren’t a big deal and should be taken as a small part of the bigger whole, then I hope my partner will follow suit.  For the most part, wearing a pump and a CGM isn’t something I feel self-conscious about, but being honest, there are days when I want to rip them both off and throw them across the room in pursuit of feeling truly ‘naked.’  I don’t like having these artificial bits and pieces stuck to me all the time, but I try to keep tabs on the bigger picture, which is my overall health.  Sounds cheesy, but it’s the truth.

“Do you disconnect during intimacy?”

Personally, I do.  I don’t like having anything connected to me during those moments, because it becomes a distraction.  I like feeling like diabetes is a back burner issue in the bedroom, or at least as much of one as I manage.  When I first started pumping, disconnecting felt awkward because I didn’t know how to make it feel sexy (“Oh, let me just slip out of my medical device and into something more comfortable,” never had the right tone to it.) and it took me out of the mood a little bit.  But once I was comfortable pumping, in all capacities, I was comfortable with this part, too.  Disconnecting is kind of like my “mating call” now, which is a bit strange but also ‘no big deal.’

“Does it get in the way, physically?

Not for me, because I’m already disconnecting.  And I take care to keep my devices as out-of-the-way as I can manage, keeping infusion sets on the back of my hip and sensors on my thighs, leaving my abdomen feeling “normal.”  Sometimes it gets in the way in the initial moments, like when it’s being disconnected and I’m trying to figure out where to stash it for the time being (bedside table? under a pillow? on the floor? It’s a tough device, but I’m not willing to throw a six thousand dollar medical device onto the floor with reckless abandon.), but for the most part, once it’s disconnected, I forget about it.  The trouble is sometimes remembering to reconnect afterwards.  Some women set the alarm on their pump to remind them, but I’m not even close to that organized.  Others set reminders on their phone.  I’ve never gone to bed without reconnecting, so I’m going to pretend that I will always remember?

“Does it get in the way, emotionally?”

Yes, at least enough so that I can’t outright say no.  Can’t lie – not being able to be completely naked (sans pump site and CGM transmitter, for me) is a weird feeling, and I always feel like I need to give Chris a head’s up as to where my devices are currently connected.  “Be careful of the site on my right arm,” or “My sensor is on the left,” sort of directions feel anti-intimacy, for me.  But that’s where the relationship with my husband comes into play – he makes me feel like diabetes is something we can openly discuss, so it makes device topography easier to disclose, knowing he’s not creeped out by this stuff.  The emotions about this sort of thing ebb and flow, just like emotions about diabetes in general, but it’s most important for me to be able to talk about it with Chris.  Being part of a team that allows for the emotional highs and lows helps keep devices from getting in the way, mentally.

You can have sex with your insulin pump … by your side.  Or on the bedside table.  Intimacy with diabetes requires a little forethought in addition to the foreplay (terrible pun), but it can be done.  Just don’t shag your actual pump, or you could end up with a different set of issues entirely.

Spot Off.

Party time, in a decidely un-party time sort of way.BEEEEEEP!  BEEEEEP!  wails the Dexcom.

Birdy, who is coloring at the kitchen table, yells back, “BEEEEEP! BEEEEEEP!  Mawm, your Dexcom is making the beep sound again,” and she absently points her red crayon towards the bottle of glucose tabs on the table nearby.

For the most part, I can rely on the Dexcom to be accurate when it’s throwing out results to me.  Low alarms are ones that I take very seriously, as well as the double-down arrow alarms, because they need immediate action.  My blood sugars tumble fast once they’re under 70 mg/dL, so when the CGM hollers to warn me of an “UNDER 65 mg/dL,” I can pretty much guarantee that the “LOW” alarm is the next one on tap.  High alarms are also taken seriously, but not with the same immediacy.  I will finish driving somewhere before correcting the high, whereas a low makes me pull the car over and treat.

Point is, I trust the CGM.  A lot.  More than the FDA and the owner’s manual says I should (no, I don’t always test to confirm a low because I’d rather take the chance of the CGM being slightly off than take the chance of face-planting in the backyard).  While the data was overwhelming at first, I’ve come to rely on it, and it helps shape my diabetes decisions throughout the day.  My health is – dare I say? – better as a result of wearing a second, sometimes clunky-ass device.

But when it’s wrong?   I’m tweaked out and frustrated, spoiled by the accuracy and precision I’ve come to expect from the sensor.

Yesterday morning was Dexcom Replacement Morning (i.e. the installation of a new sensor, peeling off the week-old Toughpad/transmitter combination that looks and feels as if I’m removing a 90 yr old skin graft after so many days stuck to my thigh), so I knew that the receiver data might be a little off for a few hours (seems to be standard for me).  However, by the time I went to the gym that night, I’d been wearing the sensor for at least seven hours, and had calibrated it three times.  My meter said 217 mg/dL before walking into the gym, and the Dexcom confirmed the same range, in an ish-y sort of way, with a 250 mg/dL.

Since my blood sugar was high and I was feeling sluggish, I opted for the stationary bike instead of a treadmill run, and after the first 3 minutes, I noticed that the Dexcom was trending down.  But not crazy-down.  More like comfortable, exercise-expected down, with a 190 mg/dL and a southeast-facing arrow.

About fifteen minutes later, I noticed that I was sweating a lot.  More than usual.  And it wasn’t “workout sweat,” which seems to come in at a steady pace.  This sweat felt pulsing, like it was a flash flood of panic, and within a few minutes, my forehead was slick and even my elbows were damp.  The Dexcom said I was 200-and-something with double-down arrows, but my body was sending me an entirely different message.  Which is why I wasn’t surprised to see a 70 mg/dL on my meter.

Lips numb and counting out five cherry glucose tabs from the jar (putting them all in my mouth at once while I was counting, and then realizing I should probably eat them one at a time), the low wasn’t quick to give in to the sugar onslaught, giving me plenty of time to question my trust of the CGM.  I don’t want to consider the Dex “only as good as it’s last result,” but missing a low by almost 150 points has shaken my confidence in this particular sensor’s accuracy.

My Dexcom is like the little girl with the curl on her forehead:  When she was good, she was very good, but when she was bad, she was horrid.  Thankfully, I get more good than horrid, but it will take me a few days to regain trust.  In the meantime, I’m leaving a trail of extra test strips in my wake.

Shiny and New.

You know how sometimes you want a haircut, or a new watch, or to paint the front door of your house bright pink because you can’t stand how everything has looked the same for so freaking long kind of thing?  The blog had become that for me.  And I wanted a new, bright pink front door.  Or, in bloggy-terms, I wanted a new site to pepper with content, one that didn’t require so much coding-by-hand and served as a better, brighter house for my nonsense.

So welcome to it!  My new home at Six Until Me – now with more white space.  And (hopefully) less muddled coding.  The posts from the last eight years (starting with Blogspot and moving into the Movable Type Age) are still available in the archives, and you can search for previously posted content there, but all new posts will live here.  I hope.  Unless I accidentally hit the wrong button somewhere during the content migration and the whole thing goes to crap.

Over the next week or two, there will be a few hiccups as the migration to new servers and [insert things I don’t understand about DNS and file routing and … stuff], but overall, I’m hoping for a smooth transition without me throwing-too-many-plates-in-a-fit-of-frustration.  Because the plates never go as far as I want and I end up frustrated because I throw poorly.

Digression over.  Welcome to my new digs.

But there will always be alt text.  ALT TEXT ... YARGH!!!!!

 

Memories.

I remember being nine or ten years old, on my hands and knees, crawling up the staircase to get to the kitchen, where my mom was cooking dinner.

I remember calling out for my mom, but the words lost their form and letters fell into a heap on the staircase.

I remember my mom sitting on the kitchen floor with me, breaking graham crackers into smaller bites and putting them in my mouth, dinner burning in pans on the stove.  I remember my mom’s eyes being very wide but she wasn’t crying.  I remember a glass of juice.  I remember it was hard to chew because I was crying but I wasn’t sure why, and then there’s a sharp edit in my memory, where I don’t have any recollection of what happened next.

As quickly as it came, the low blood sugar passed.  I don’t remember what caused it.  I don’t remember recovering.  I don’t remember what my face looked like, or how empty my eyes must have been, or what I sounded like as I crawled up the stairs, calling for my mom.  I don’t remember thinking about it for days afterwards.  I don’t remember feeling affected by it for more than those few minutes.

I think about my mother, cleaning up the cracker crumbs and placing the juice glass in the sink, salvaging what was left of the dinner she was cooking, trying to forget.

[For more posts about Memories on D-Blog Week, check out these links.]

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