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Posts from the ‘Robot Life’ Category

“Do You Like It?”

“Excuse me … your, um, arm?  What’s that on your arm?”

Ninety-five percent of the time, I don’t care if people ask about my insulin pump or CGM.  More power to them for being bold enough to embrace the awkwardness and actually ask, instead of assuming.  (And even in the 5% moments of “argh – stop looking, don’t ask,” it usually ends up being a moment of discussion and disclosure I’m grateful for.  I should be more open to discussing diabetes in a public setting.  Hang on a second … let me start a blog real quick.)

“On my arm?  That’s my insulin pump.  I have diabetes.”

I was in line at Starbucks, grabbing an iced coffee (under the gestational lock and key of decaf for just a few more weeks), escaping the blazing summer temperatures for a few minutes before heading back to work.  I was wearing a skirt and a tank top, with my infusion set connected to the back of my right arm.  My body – thanks to third trimester expansion, has run out of subtle places to stash my insulin pump, so it was casually clipped to the strap of my tank top.

Kind of noticeable, but in a “who cares” sort of way.  It’s hot outside.  And I’m wicked pregnant.  And I have no waist anymore.  You can see my insulin pump?  Good for you.  You can probably see my belly button, too.

“No kidding.  Diabetes?  Is it because of the pregnancy?”

“No, I’ve had diabetes way longer than this pregnancy.  I was diagnosed when I was seven.”

The guy paused for a second, his eyes lingering on the infusion set on my arm.  “So you do that thing instead of shots?”

“Yep.”

“Do you like it?”

That question always throws me a little.  Do I like it?  The pump?  I do like the pump.  I like not taking injections.  I like not whipping out syringes at the dinner table and exposing my skin.  I like taking wee ickle bits of insulin to correct minor highs.  I like running temp basals to beat back hypos.  I like people wondering what it might be instead of assuming it’s a medical device.

“I do like it.  It works for me.”  I paused, already envious of the coffee in his hand.  “I like coffee more, though.”

He laughed and finished paying for his coffee.  “Can’t blame you for that.  Good luck with the baby, and try to stay cool in this weather,” he said.

I don’t like diabetes.  That’s for damn sure.  That shit is exhausting and I’m burnt out on the demands it places on my life.  But the pump?  Yes, I do like it.  It’s  a streamlined delivery mechanism for a hormone I wish my body would just cave and start making again.  It handles diabetes so I can go back to trying to put my socks on without tipping over.

Enjoy the Silence. Or Not So Much.

[Disclosure about my relationship with Dexcom]

During the first trimester of this pregnancy, lows were intense and weirdly symptomatic; a nice contrast from the hypoglycemia unawareness that’s crept in over the last five or six years.  (I ended up stashing a jar of jellybeans in the dining room hutch, only to have to move it into direct line of sight in the kitchen in efforts to keep up with the persistent low blood sugars of those first few weeks.)  As this pregnancy has moved forward, the lows have become slightly more predictable and the hypo-unawareness has returned, making the Dexcom BEEPS! and BLARGHS! more necessary.

Until that week when I noticed, “Hey, the alarms have been quieter.”  And then I realized, “Hey, the alarms aren’t working.”  Because overnight, my G4 receiver had been rendered mute.

When I received the Dexcom recall notice several months ago, it was very early February, and I was still using the G5 transmitter.  At the time, the only people who knew I was pregnant were my family and my medical team, but I knew, and I was stalking blood sugars with vigor (and a side of panic).  My endocrinologist, not a fan of the data output from the G5 application, asked if I would consider using the G4 for the remainder of my pregnancy.  Wanting her to check the “compliant” box on my chart (there’s a first time for everything), I switched back to the G4 the following week and have been on it since.

And for months, my G4 receiver was fine.  Alarmed all the damn time, vibrating and buzzing from my bedside table or my purse and alerting me to the changing needs of my baby-hosting body.  And then, all of a sudden, the speaker went full garbage, not working at all.  Only a vibration came from the receiver, making my phone* the best laid plan for alerting me audibly.

It wasn’t until I woke up one morning and saw the empty raisin box and the discarded juice box that I realized the night before wasn’t very comfortable.  And that I didn’t wake up because of alarms, but instead because of aggressive baby kicks.  I couldn’t ride out the rest of this pregnancy without replacing the receiver, because I was NOT waking up even with the phone alarms.  I needed high octane, receiver-in-a-glass-with-some-coins sort of jolting.  I needed to connect the alarms to Siah, encouraging her to walk across my face when I was low.  Or similar.

I needed the receiver to actually WORK PROPERLY.

So I went to the website – Dexcom has a special page set up for this particular issue.  There’s also a special hotline number to call: (844) 607-8398.  After a quick exchange with the woman on the phone, she asked me to confirm that my alarms weren’t working by doing the following:

  • press the center button on your receiver to access the Main Menu
  • scroll down to Profiles
  • select Profiles
  • scroll down to Try It
  • select Try It
  • scroll down to 55 Fixed Low
  • select 55 Fixed Low
  • verify that you receive vibrations first (vibratory portion of alarm), followed by beeps (audible portion of alarm).

And once we confirmed the alarm absence, a new receiver was scheduled to be shipped out.  Should be arriving in the next few days, in time for me to finish up this pregnancy as a G4 user (to make my doctor happy) and hopefully by staying in my threshold lines (to make my fetus happy).

If your G4 receiver suddenly craps out, sound-wise, call the hotline number and have a new one sent out.  Alarms that won’t alarm are alarming.

(* I follow myself on the Dexcom Follow app, along with one other person.  Yes, redundant.  In response to the dead receiver speaker, I changed the alarm settings on my phone so that I’d be alerted for highs and lows.  This worked, in theory, except when my phone was on silent or in the other room.)

Free Shower.

Internet LOLZ suggest I title this post “Free Shower Be Like …” but I refuse to do that.  My dad, and every English teacher I’ve ever had, would throw things at my head.

Instead, I’ll just assert that diabetes-device free showers are totally akin to this:

AKA the happy dance of airy weightlessness, scrubbing skin unadorned with medical devices.  It’s brief, but beautiful.

(unrelated but entirely related:  all of these gifs are terrific)

Blame the Hormones.

I’m still angry that the UHC/Medtronic issue hasn’t been resolved.  There is/was a ton of discussion about how this is not a decision that takes patient needs and preferences into account but instead seems to cater to what’s best for business needs. “Resolved” would be a reversal of this decision and reinstating the patient/doctor team’s right to decide which therapy is best.  I am very curious to see what the financial disclosure looked like for this partnership. I’m unnerved that the slippery slope is being greased by apathy. Where’s our raised voice?

Sometimes I feel like I don’t have enough skin in this particular game because I don’t have United Healthcare as my insurer and I also have a business relationship with Tandem, but at the same time, I have a full pancreas in the game because I have diabetes. I don’t want insurance companies telling me what’s best for my diabetes; I want that decision made between me and my doctor.

What to do?  I’m unsure.  I know I can share my story about personal diabetes preferences directly influencing health outcomes (hey, like using an insulin pump that fits my current needs in order to achieve an excellent A1C and so-far healthy pregnancy?)  I know I can talk about how access matters, because without it, my life gets ugly fast (she says with the security of three months worth of insulin tucked safely into the butter compartment of her fridge).  But I feel like my frustrations are in a holding pattern of waiting for someone else to do something or suggest something, watching as time slips by and people become more meh about decisions about our health being made by people who don’t live intimately with diabetes.

I deserve the right to choose.  Whether we’re talking about the insulin I take or the pump I use or the meter I rely on, these choices play directly into my health and well-being both physically and emotionally.  I didn’t chose diabetes but I deserve the right to chose how I manage this disease.

I’m still angry about this.  Frustrated.  Confused about what to do next.  And swimming in a sea of hormones that makes me unable to keep my mouth shut and my blog quiet.  What comes next, unfortunately, still remains a mystery to me.

t:slim with a Twist.

Several months ago, I switched insulin pumps.  (Here is the post about the switch, and please read this post about the disclaimer that initiated the switch.  My full disclosure page is here.)  My first impressions of the t:slim pump were drummed up over a year ago, after trialing one for a few weeks, but my real t:slim immersion came once I switched in full.

Funny thing is the timing of that switch.  When I packaged up my Animas pump in favor of a Tandem one, I had also just found out I was pregnant.  Which means that I was adjusting to life as a pregnant PWD and also to a new insulin pump.

tl;dr – There’s stuff about the t:slim pump I wouldn’t have appreciated so soon were it not for the baby-en-route.

Because dude, if I had switched a year ago, I would have been all, “Oh, it looks so cool and the touchscreen is badass, and the fact that it’s flat all the way across the front makes it easier to tuck into my clothes,” making the wearability the most important part of my switch.  Yeah, wearability matters, but not as much as ease of use and OUTCOMES does these days.

(None of the following is medical advice; remember, I’m not a doctor and currently can’t even see my feet in full these days.)

#tslim #diabetes

A photo posted by Kerri Sparling (@sixuntilme) on

Entering a bolus is stupid-easy.  And this matters, since every blood sugar counts double these days (for me and for my growing son).  It takes me a few seconds to unlock the pump and bang out a bolus, and only a few extra seconds to add crucial information like my current blood glucose and the carbs I’m consuming.  Part of my over-arching problem of diabetes management is keeping apathy from creeping in; the all day, every day tasks of type 1 diabetes wear on me in a way that prevents me from taking advantage of everything technology has to offer.  Oh, so an insulin pump can calculate my insulin on board (IOB) and the dose I need to bring down a blood sugar back into range, or what’s needed to cover X amount of carbs?  HANDY INFO!  The only thing I have to do is enter that information and it spits out a result?  ALSO HANDY.  But having to scroll forever to enter information is enough to keep me from entering that information.

It’s pathetic, how often I was taking 2u of insulin because it seemed “close enough” to cover what I needed, instead of spending the time calculating the proper dose.  Being able to input this necessary information in a matter of seconds makes me actually DO IT.  My endo is very pleased with this uptick in my management, and my A1C 100% reflects these efforts.

#tslim #diabetes

A photo posted by Kerri Sparling (@sixuntilme) on

Changing my basal rates is stupid-easy.  Being pregnant means that my insulin needs are changing rapidly.  First trimester brought about insanely sticky hypoglycemic events, which equaled out to dialing down my basal rates significantly and making frequent use of the temp basal option.  (Again, it’s about the button pushing – it takes me seconds to set a temporary basal rate.  Ease of freaking use FTW.)  Second trimester showed a steady climb in my weight and insulin resistance, with a marked rise in my basal rates and my insulin:carb ratios.  And now, at the beginning of the third trimester, shit is changing all over the place, with some basal rates going down a little bit and my insulin:carb ratio almost double what it was pre-pregnancy.  There’s a lot of math going on in my baby-building body, and being able to change my rates after reviewing my data on Diasend and t:connect makes for easier management.

Holding more insulin is stupid-easy.  The t:slim holds a ton of insulin (300u) and as my pregnancy progresses, I may need that cartridge to be filled in full, instead of the half-way filled I’ve been doing for the last six months.

#tslim #diabetes

A photo posted by Kerri Sparling (@sixuntilme) on

Seeing my status is stupid-easy.  One button push shows me how much insulin is on board, how long it will be active, shows how much insulin is left in the reservoir, the percentage of charge left in my battery, and the time.  Oh, and what day it is.  (This matters, as the day and time are bits of information that are being eaten regularly by intense pregnancy brain.)

Not everything is stupid-easy.  This isn’t a list of perfect moments with my insulin pump.  There are pros and cons, and the time it takes to change out the cartridge and infusion set is still cumbersome.  I also am not a fan of the luer-lock tubing bulge, as it takes on a “third nipple” appearance more often than I’d prefer.  And I’ve seen more occlusion alarms with the t:slim than I did in the past.  But I’ll these cons over the pros, especially when I review my lab work from Joslin and see how strong my numbers are.

Being more on-target through my pregnancy is not stupid-easy.  Let’s not make my successes as a pregnant PWD the product of an insulin pump, shall we?  I am working my ass off to make sure my body and my baby are healthy, with just over 11 weeks left to go before we release this particular Kraken.  But having a piece of technology that alleviates the bolus math angst, makes it impossible to forget whether or not I’ve taken my basal insulin, and being able to bang out a correction dose in a matter of moments helps take the pressure off, at least a little bit.

… even if the beeps and boops might startle my developing fetus.  (If that study has any truth to it, my poor kids are screwed.)

 

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