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Changing the Set.

Changing out an insulin pump infusion set is a methodical moment for me. I do things in the same order almost every time, with the same mildly frenetic mindset.

  • Remove old set from my body so I can enjoy the “connected to nothing” feeling for as long as possible.
  • Take out a new infusion set and new reservoir.
  • Ferret out the open bottle of insulin from wherever I’ve stashed it last in the bathroom.  (Usually it’s in the medicine cabinet, but during the hotter months of summer, I tend to keep it in our bedroom, where it’s cooler.)
  • Line the insulin set, reservoir, and bottle up on the counter.
  • Unscrew the reservoir cap and remove the old infusion set and reservoir from the pump.  Throw the tangle of tubing into the garbage, making sure said tangle doesn’t dangle over the edge of the garbage can because otherwise Loopy and Siah will find it and drag it all over the house.
  • Open the packaging for the reservoir and take out all the little parts (except that one frigging thing that I don’t know what it’s for and I usually throw it right into the garbage – see below):

  • Rewind the pump.
  • This is the point where I mentally set some kind of timer, challenging myself to race against the time it takes for the pump to rewind.  While the pump is whirring, I rush to fill up the reservoir and connect it to the tubing.  I do this every, single time.  It’s as satisfyingly ritualistic as shaking the bottle of test strips before I check my blood sugar.
  • Thread the tubing through the battery cap and connect the luer lock, then insert the cartridge into the pump.
  • Load the new cartridge.
  • Prime the cartridge, trying to stop the prime before more than a single drop of insulin escapes from the needle in the infusion set.
  • Hold the tubing up to the light and inspect it for bubbles.
  • After the pump is primed, again the mental timer is set.  This time, the challenge is to unpeel the sticky backing from the infusion set and find a place on my body that’s suitable for insertion before the screen on my pump goes blank from inactivity.
  • Insert the new infusion set, prime the cannula (sort of holding my breath while it primes because I’m never certain that the first introduction of insulin won’t burn under my skin).
  • Tuck the tubing out of sight and clip the pump to my clothes.
  • Fin.  (As in “the end.”  There’s no marine life actively involved in this process.)

This process takes less than two minutes to complete, but if it’s interrupted in any way, I’m thrown so far off course that it takes me five minutes to recover.  The method of this madness is that it’s one, fluid mental movement and any upset to the process makes my brain disengage to seek the comfort of something shiny.

It’s an intricate process involving several steps, precision handling, and the safe housing a powerful drug.  And if I have to change the battery at the same time …

 

Bag of Hope … For Adults?

I’ve always thought Rufus was pretty cute, so when the JDRF link for their Bag of Hope flew by in my Facebook feed, I clicked.  (Rufus is my clickbait.)

According to the website, the Bag of Hope includes (but isn’t limited to):

  • Rufus Comes Home, A First Book for Understanding Diabetes, reference books
  • A JDRF DVD
  • An ACCU-CHEK® Nano SmartView blood glucose meter
  • Informational postcard about the support Lilly Diabetes offers families with a bookmark
  • Lilly Diabetes literature on severe hypoglycemia management
  • A Novo Nordisk key chain Webkey with details on the NovoPen Echo® reusable insulin pen
  • A Novo Nordisk postcard with information on T1D support from novologreach.com
  • A Road ID bracelet for Rufus, as well as a discount coupon for a Road ID bracelet for your child
  • Dexcom® continuous glucose monitor educational brochure and water bottle

I don’t know if the Bag of Hope was a thing when I was diagnosed in 1986, but the fact that they exist now is awesome.  I love this.  I love the thought that a family dealing with a diabetes diagnosis has proof of life after diagnosis, right there in a bag.  It helps connect people to the JDRF, but most importantly, it helps connect people with people.

But if there’s anything we’ve learned in the last 30 years, it’s that type 1 diabetes diagnoses are not limited to kids.  Adults are being diagnosed with type 1 diabetes.  Adults are living with diabetes.  And they still need a good dose of hope here and there, too.

The JDRF has their T1D Care Kit, which is awesome, a PWD can dream, rightt?  What would I stick in a Bag of Hope for Adults with T1D?

Here’s my wishlist [note: already being edited]:

I’m fueled by a bunch of bias with these selections, and I know I’m missing a bunch of things that, once I hit “post,” I’ll have to go back and add to the list, but this is my starter list.

What would you want to see included in an outreach bag for adults with type 1 diabetes?

 

Diabetes Relics: Accu-Chek II.

Whose pockets were what size now?

[here's a link to a full size photo]

Scanned from the pages of the Fall 1986 issue of “Diabetes Forecast: The newsletter for people who live with diabetes,” this was my first glucose meter.

Next week marks 28 years with type 1 diabetes for me, and looking back at the technology I used upon diagnosis, I see how far things have come.  I wonder if I’ll look back, decades from now, and marvel at the cumbersome technology of 2014.

Maybe I’ll be all making my own insulin and tending to a big, fat glass of Reisling and not giving a shit because research will have finally caught up with hope.

Pre-Bolusing for Snacks.

“Do you pre-bolus for your meals?”

“I do.”  (I was happy to answer this question because I actually do pre-bolus.  Pre-bolusing is my A1C’s saving grace.)

“Okay, that’s great.”  She made a few notes in my chart.  “How about for snacks?  Do you pre-bolus for those?”

“I … um, nope.  I am horrible at pre-bolusing for snacks.”

Unfortunately, hat is completely and utterly true.

Meals are easier to pre-bolus for because there’s time involved in making them.  If I know I’m cooking chicken and green beans for dinner, I have 25 – 30 minutes to let that bolus sink in before the meal is even ready.  Going out to eat at restaurants is easy, too, because I usually have an idea of what I’d like to eat, so I’ll bolus for the meal once we are seated at the table.  (Pre-bolusing backfires at times, too, but as long as I’m not in the middle of the woods, I’ll take the risk.)  A meal feels like an event, and therefore easier to accommodate.

Snacks feel like an accident.  An unplanned moment.  I don’t take an apple out of the basket and bite into it in a premeditated fashion, but more like a fluid movement without any thought involved.  (A run-by fruiting by any other name …)  It’s not until I’m done with a snack – apple, yogurt, nuts, protein bar … cupcake? – that I realize I haven’t taken any insulin to cover the carbs.  My post-snackial blood sugars aren’t grateful for the misstep.

This would not be a big deal if I wasn’t such a grazer, but when 50% of my caloric intake throughout the day is on a whim, pre-bolusing for snacks matters.  My A1C is currently in my range (under 7%) but I know if I can remember even half the time to pre-bolus for snacks, I bet my standard deviation will tighten up and blah blah blah other numbers as well.

Little, conscious changes will hopefully become habit.

 

Not A Single Decent Number.

“Huh.  223 mg/dL.  Still.”

This was the mumbled mantra of our vacation to Maine.

Aside from the long drive to Bar Harbor (six hours, plus coffee stops and bathroom stops and “Hey, look at that lobster!” stops), the time we spend in Maine is usually very active.  As a family, we did the hike around Jordan Pond (about 3.5 miles), the hike up South Bubble Mountain (with a stop at Bubble Rock), and spent hours walking through downtown Bar Harbor.  The lure of blueberry ice cream was enticing, but I tried to avoid the sweets and instead downed buckets of iced coffee instead.

And yet my blood sugars were complete shit while we were traveling.

I wanted to blame my infusion set, but I changed it once while we were in Maine and my blood sugar numbers remained crap.  I wanted to blame the bottle of insulin but it was the same bottle that worked just fine at home (and it wasn’t like we microwaved it or let it bake in the car).  I wanted to blame my own actions but I was exercising, checking my blood sugar, pre-bolusing for meals, correcting highs, and sticking with reasonable carb intake.

So I blamed diabetes.

The graphs over the four days we were in Maine were gross.  When I wasn’t high (which was the majority of the time), I was erring on the side of high, teasing the edges of 160 and 180 mg/dL all day long.  Why?  No clue.  Hesitant to up my basal rate in the face of constant walking, I just watched the graph ride the mustard for a few days.  Not convenient, because blood sugars running higher means more water, more “Hey, it feels like someone put cement in my sneakers,” more teeth sweaters, more bathroom breaks.

“Mom, do you have to go potty?”

(Fun when the four year old is asking me, instead of the other way around.)

Sometimes the numbers don’t make sense, and this time, I choose to roll with it for a few days.  There are probably six dozen different things I “could have done” to take a bite out of the high blood sugar trend, but I didn’t want to the micromanagement of diabetes to eat up my brain on vacation.  Instead, I did what I was willing to do and thankfully, now that we’re back at home, my Dexcom graphed has settled back into a more forgiving pattern of Pac-Man dots.

I prefer mountains in the landscape, not in my Dexcom graph.

 

 

Mainly Maine.

(There were about a dozen different places called “Mainly Maine” that we saw en route to Mount Desert Island.  Also, every time I saw a sticker boasting “MDI” I thought about multiple daily injections.  Diabetes for the acronym invasion win.)

A few days in Maine helped sweep away some mental cobwebs.

Blood sugars were pretty much crap the whole time (source of glucose chaos unknown; currently blaming pancreas) but our trip was still main(e)ly awesome.

Drafting Off #DSMA: Diabetes Job Description.

I love tuning in to the diabetes discussions on Twitter – they are always insightful and make me see things through a different (insulin-colored?) lens. The final question of last night’s #dsma chat really brought out some interesting responses:

I wasn’t exactly sure what “position description for life with diabetes” meant, specifically, so I took it as a “job description” of sorts … and one that would vary for everyone:

Looking back, I’m grateful that my learning curve belonged mostly to my parents (which is good because I’m sure it was steep at the outset). Once I was ready to take over the responsibility of diabetes self-care, the disease was embedded solidly into the context of my life and the learning curve became more of a gentle, but constant, slope.

Reading the diverse responses from my fellow PWD on #dsma was an eye-opening experience. That’s what brings me back to #dsma every time, because there’s no set-and-standard answer to any diabetes-related query … we’re all unique and special pancreatically-challenged snowflakes. :)

Jamie summed it up neatly:

To join the diabetes conversation, watch the #dsma hashtag on Twitter on Wednesday nights at 9 pm EST. It’s a great way to wind down your night while building up our community.

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