Skip to content

Posts from the ‘Pumping Insulin’ Category

Pun(ch) Line and Inkage.

I wish I could find the source for the following image, but I love it too much not to share.  (I think it was Type 1 Diabetes Memes but I can’t re-find it.  If you know the source, please leave a comment so I can link out appropriately!)  This is real life as a pancreatically-challenged cyborg:

The punch line!  The pun! Much joy.

And I came across this tattoo on Pinterest from user Carmen Bailey.  Her comment, in case you can’t read it:

“My cousin Jeff is getting married in just over a month, and his fiance has diabetes. He got this tattoo of an infusion set (from a insulin pump) to match his bride. I think it’s adorably romantic.”

Agreed.  This is adorably romantic and also safe from doorknobs, making it a double-win.

Insulin pumps:  A source of insulin infusion, tattoo inspiration, and comic relief since 1963.

 

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).

When Good Insulin Goes BAD.

Ninety percent of the time, my high blood sugar has an identifiable reason, and there’s a cluster of common causes.  Did I under-estimate the carbs in a snack and therefore under-bolus?  Did I over-treat a low blood sugar?  Did I eat without bolusing at all (it happens)?  Is there a lot of stress floating around that I’m responding to?

Most of the time, those questions cover the why.  Once in a while, my highs are for rogue reasons, like an air bubble in my pump tubing.  Or when I eat something carb-heavy right after an insulin pump site change (it’s like that first bolus doesn’t “catch” somehow).  Or I forgot to reconnect my pump.  Or if the cat bites through my pump tubing.

But rarely, if ever, is one of my high blood sugars the result of bad insulin.

Except it totally happened last week, when two days of bullshit high numbers had me mitigating every possible variable … other than swapping out the insulin itself.  (And clearly I’m stubborn and/or in denial about the quality of my insulin’s influence on my blood sugars?)  I rage-bolused.  I exercised.  I low-carbed the eff out of an entire day.  I did a site change at midnight to take a bite out of the highs.  Nothing.  The downward-sloping arrow on my Dexcom graph had gone on hiatus.

(Always a punched-in-the-gut feeling to see the word HIGH on a Dexcom graph, accompanied by an up arrow.)

But ditching the bottle of insulin entirely and swapping in a new Humalog vial?  That did the trick in a big way.  For once, it was the insulin.  Next time, it will surely be the cat.

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 …

 

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.

 

Go Bionic: Ed Damiano, Clara Barton Camp, and How the Bionic Pancreas “Really Works.”

During my visit to Clara Barton Camp yesterday, I heard the same sentiment over and over again from the kids wearing the bionic pancreas:  “It works.”

“It was weird not to touch the buttons when it beeped,” Addy said, an 11 year old camper at Clara Barton Camp who has been living with type 1 diabetes since she was two.  “I’d reach down to look at it or touch it when it beeped but then I’d have to remember not to touch anything.”

“A big change from needing to check every beep and look at the devices all the time, right?  So when did you feel like you were used to wearing it?”  I asked her.

“Yesterday.  Yesterday, it beeped and I didn’t reach down.  I just said, ‘Whatever.’”

“You trusted it?”

“Yes.  I trusted it.  It works.  If you check it, it’s perfect.  My blood sugars are perfect.”

Addy has been wearing the bionic pancreas since Sunday, part of  the Bionic Pancreas study taking place at The Barton Center (and also the Joslin Camp) this summer.  She’s one of thirteen campers at Barton taking part in the study, ages ranging from six to 11 years old, six girls suited up with the bionic pancreas last week and seven this week.  “My blood sugars have been perfect – I haven’t been low at all and I haven’t been high, except for one 203 mg/dL.”

If a week without blood sugar excursions sounds like an impossible dream, take heart.  Take pancreas, too, because this technology actually exists and is currently attached to seven girls in Massachusetts.  And not “seven girls stuck in a hospital bed under strict activity guidelines,” but seven girls who are running amuck at camp, swimming, dancing, singing in the dining hall, and burping at picnic tables outside of the cabins.  The bionic pancreas has been highlighted in the New York Times, NPR, chronicled extensively over at diaTribe, and has also been the subject of a frequently-downloaded-and-rabidly-shared New England Journal of Medicine article.

The system has a few moving parts:  two t:slim insulin pumps with the Bluetooth switched on for communicating with the phone (one filled with insulin and one filled with glucagon), a Dexcom CGM, and an iPhone.  An in-depth look at how the technology works together can be found in the NEJM paper, but the basic gist is that the Dexcom monitors blood sugars and sends that data to the iPhone, which is running an algorithm that doses insulin, glucagon, or refrains from dosing anything at all.  Lows can be corrected by glucagon, highs by insulin.  Meals aren’t carb counted, but instead the algorithm “learns” what a big meal, small meal, or snack is based on minimal input from the PWD.

“It’s beautiful,” I said to Ed Damiano, one of the principal investigators on the project, after seeing some of the blood sugar outcomes from previous studies.

“It’s still a little clunky,” he replied.  “I want to see one device, one infusion set.  But this?  It works.”

Currently, the camp study at Barton has girls on the full bionic pancreas system for five days, and then five days on their own insulin pump, but with the CGM blinded to the user and still uploading to the cloud.  Bionic pancreas campers are required to check their blood sugar at least seven times per day.  Due to camp safety protocols, the study team can’t let low blood sugars “ride” and assume that the bionic pancreas will step in with glucagon in time, so success on some levels isn’t judged by minimal time below 70 mg/dL but instead the reliable metric becomes how many times did the study team need to intervene for a low blood sugar.

This summer, there are a few new features on the bionic pancreas.  One is “microburst glucagon,” which is most useful for when people are disconnecting the system for swimming or similar, in efforts to provide a safety net for low blood sugars while doing that kind of activity.  There is also an option for temporary targets, which allows people to adjust their target thresholds.  “Normally, we aim for 100 mg/dL, but if we can adjust the threshold and show a change in the A1C based on that adjustment, we’re able to titrate A1C levels using the bionic pancreas,” said Ed.

Some challenges still exist with the system.  The bulky devices, for one, are their own challenge, but as the project moves forward, the diabetes community rallies to support current needs.  “Donna from Tallygear came up and made these ‘GO BIONIC!” belts in a matter of 48 hours.” Ed said, smiling.  “We didn’t ask her to do that.  She offered, and we are so grateful because the kids love them.”

The kids sing the praises of this device.  Ally, diagnosed in 2009 at the age of five, wore the bionic pancreas the week before Addy suited up. “It really works. When I saw the video online, I thought it was made up. I thought the girl in the video was lucky, and that her numbers were just perfect that day. And then I wore it [the bionic pancreas] and I was like, ‘Wait … it really does work!’”

Addy chimed in, her bionic pancreas belt visible over her shirt:  “Ally wore this last week and now I’m wearing it.  She said to me, ‘If you don’t want to wear it, can I wear it for you?’”

Ally nodded.  “I did say that.”

“Does the weight of the device bug you?”  I asked Ally.

“No.  It’s a little heavier but I don’t care.  Even with all the pumps on and the phone, I could still do a back-handspring in the grass.”

The study at Barton concludes this week and then moves over to the nearby boys’ camp.  But after this study finishes, there is still work to be done.  The amazing bionic pancreas team has come so far and the 2016 pivotal study is in sight, but needs community support to get there.

This is where the Bionic Challenge comes in.

According to the website call-to-action:  “The Bionic Challenge asks each family to raise $5,000 in 60 days (by September 1, 2014). If each family in attendance here today can turn to their friends and relatives and obtain 50 $100 donations (that means finding only about one donation per day for the next seven weeks), we can resume our development effort in September and keep on schedule for our final pivotal study in 2016. If we cannot resume in September, it could jeopardize our ability to secure a recently announced time-limited $20MM NIH funding opportunity, which is due in about nine months (April 15, 2015) and could support all of the clinical costs of our pivotal study.”

tl;dr:  the project needs the support of the diabetes community because, without it, the goal of a 2016 pivotal study may be delayed. If you can donate, please do. If you can’t, please consider sharing this information with someone who can. The more people who know how to help, the better.

After being promised a “cure in five years” back in 1986, the idea of the bionic pancreas being delayed because of money makes me feel insane. I could understand a delay if the technology wasn’t up to snuff, but to delay due to funding is unreasonable.  I saw kids playing outside yesterday afternoon, running around and laughing and having fun and the burden of diabetes seemed only as heavy as the belt around their waist, which with time and technology becomes smaller and lighter.

“I look at diabetes as management and maintenance,” said Ed, as we sat in the Barton Center bionic pancreas command center, where the study team was hard at work monitoring the campers blood sugars from the cloud.  “The maintenance part is the changing of an infusion set, the changing of a sensor, the checking of blood sugars.  The management part, to me, is the emotional part of diabetes.  The fact that you are so often told that you’re ‘wrong’ because you’re trying to thread the needle.  This device doesn’t take away from the maintenance part because it still requires that you wear something, do something, change something.  But it does make the management part smaller.  So much smaller.”

I don’t know if a biological cure will be seen in my lifetime.  I was diagnosed with type 1 diabetes in 1986 and have been living well, but not without frustration, as a host to this disease for almost 28 years.  My perception of what a “cure” is has changed as I’ve grown older, and my hope for something that takes this disease away fades with time.  But seeing the bionic pancreas at work, around the waists of children not much older than my own, and watching the worries of diabetes lifted from their minds and the minds of their families, I feel renewed hope.  More hope than I’ve felt in a long, long time because this is real.  I held it in my hand.  It filled me back up.

Because it works.

You can follow the progress of the bionic pancreas on the Bionic Pancreas website and “like” their Facebook page for more updates.  Links to articles featuring the bionic pancreas are here , and this video shows you how, and why, the bionic pancreas works:

Unexpected Advocacy.

The last thing I wanted to do was take my cover-up off.

Chris and Birdy (and our friends and their daughter) were at a water park in New Hampshire where kids can run and play in safe-for-littles sprinklers, pools, and water slides, and as the adults, we were tasked with guarding the perimeter.  Pacing back and forth, the four of us kept watch on our kids, ready to jump in at any moment to help them climb a slide, pick themselves up if they fell, or slather on more sunscreen.

I didn’t care who saw my body.  Not really, anyway.  I’ve run miles and given birth (not simultaneously), so I know there are strengths and weaknesses to my frame, but it wasn’t the shape and curve of my body that made me want to stay covered up at the water park.

I didn’t want people staring at the diabetes devices stuck to my body.

“Oh, suck it up.  No one is looking at you.”

Of course they aren’t.  They don’t mean to.  But when someone walks by wearing a bathing suit with a few curious looking devices hanging off it, it’s hard not to notice.  My standard beachwear is a bathing suit with my pump clipped to the hip, the tubing snaked out to wherever the infusion set happens to be living, and my Dexcom sensor taking up more real estate elsewhere.  These items aren’t jarring, and people don’t snicker, but they do look twice because cyborgs aren’t the norm.

Most of the time I don’t think twice about who might look, but on this particular day, I felt self-conscious.  Why?  Who knows.  Who cares.  I just felt eh that day.

But motherhood dictated that my self-consciousness take a backseat to being part of Birdy’s waterpark experiences, so I sucked it up and removed my cover-up.  My insulin pump infusion set was stuck to the back of my right arm, the tubing snaking down and tucked into my bathing suit, where the pump was clipped to the back.  My Dexcom sensor was mounted on my right thigh.  Even though these devices are reasonably discreet, I felt like I had two giant toasters stuck to my body.


Birdy needed help climbing to a higher platform in the play area and I helped her do that, thankful that my pump was waterproof.  We ended up in the sprinkler pad for a while and I was thankful that the tape around my Dexcom sensor was strong enough to withstand the water.  After a few minutes, I got over the whole “blargh – I don’t want to wear giant toasters” feeling and got on with things.

“Excuse me.  Is that an insulin pump?”  All casual, the question came from behind me, where one of the park lifeguards was standing.  His arms were crossed over his chest as he confidently watched the pool, but his question was quiet.

“Yeah, it is.”  I wasn’t in the mood to have a full chat about diabetes, but I didn’t want to make him feel awkward for asking.

“You like it?”

“I like it better than taking injections.  I was diagnosed when I was a kid, so the pump is a nice change of pace from the syringes.”

“I bet.”  He paused.  “I was diagnosed last August and I’ve been thinking about a pump.  But I hadn’t ever seen one before.  Is that it?”  He pointed to the back of my arm.

“Kind of.  That’s where the insulin goes in, but the pump is this silver thing back here,” I pointed to the back of my bathing suit, where my pump was clipped.  “This is the actual pump.  It’s waterproof.”  A kid ran by, arms flailing and sending splashes of water all over the both of us.

“Good thing,” he said.

“For real.”  Birdy ran by to give me a high-five and then took off playing again.

“Your kid?”

“Yep.”

“How long have you had diabetes?”

“Twenty-seven years.”

He gave me a nod.  “Thanks for not making it seem like it sucks.  Enjoy your day,” and he moved towards a group of kids that were playing a little roughly.  I stayed and continued to watch my daughter play, very aware of my diabetes devices that, for the first time ever, didn’t seem quite noticeable enough.

 

(Also, today has been unofficially designated as a “day to check in” (hat tip to Chris Snider) with the DOC blogs that we’re reading.  I read a lot of diabetes blogs, but I don’t often comment because I usually want to say something meaningful, instead of “I like your post.”  (But I do like your post!)  But instead of finding that meaningful comment, I usually roll on and forget to return to comment.  NOT TODAY!  Today I’m commenting on every blog I read, because that’s the name of the game.  I love this community, and today I’ll show that through comments.  So please – if you’re here, say hello!  And thanks. xo)

Follow

Get every new post delivered to your Inbox

Join other followers