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“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.)

Antenatal Moody Blues.

Back when we first talked about a second baby, Birdy was about three and it took us a few months to wrap our heads around the possibility of another kid.  But once we landed on “Let’s do it,” we assumed it would be a short process to conception.  We did not anticipate the wait that was on tap for this baby.

Preparing for this pregnancy was a process, different from my daughter’s creation in many ways.  Two years of trying, with heaps of doctors appointments both diabetes-related and decidedly non-diabetes related.  I’ve written about that a little bit here.  It wasn’t easy.  It was complicated on a dozen levels.  I’d do a version of it again to get here, but there’s so much I would change about the specifics of the journey.

But now.  This baby.  He’s in there and he’s healthy and kicking regularly and every time I go to the doctor and they do an ultrasound, I am honestly thrown to see this little creature happily rolling around in there.  I want to hug him.  To hear his little cries.  To meet my son and welcome him to our family.  He’s so wanted, so loved already.

Spent the weekend feeling showered with love for our in-coming kiddo. 🌷 #diabeticpregnancy

A photo posted by Kerri Sparling (@sixuntilme) on

So why am I not filled to the brim with excitement?

My A1C is well in-range and I’m up to date with all the required doctor’s appointments.  The kid has a room and a crib already set up.  The closet is stashed with diapers.  My daughter has given him a name and we talk about him as though he’s already sitting at the dinner table with us, throwing green beans and reaching his toes towards the cat as she strolls by.  While I’m heavily pregnant and weirdly shaped for the time being, I don’t feel sick or unwell like I did with my daughter.  Pre-eclampsia is not a thing this round, and being in my home makes this third trimester easier than being on bed rest.

So what’s the frigging problem, Sparling?

It feels like I’m playing pregnant all over again, only this time there’s medical confirmation every week or so that there is indeed a baby.  It’s confusing.  I’m confused.  Where’s the joy?  The first time I was pregnant, with my daughter, I was diabetes-obsessesed, making blood sugars my main priority. That, and we were shocked that we were actually going to become parents.  The second time I was pregnant, it ended early in a miscarriage, which threw me for a very uncomfortable emotional and physical loop.  This third time – with my son – started off riddled with paranoia, every milestone met with trepidation and fear.  I had some bleeding early on, which brought me in and out of the doctor’s office to check on the safety of the developing kid.  The 20 week ultrasound to check the anatomy was one I held my breath throughout.  The fetal echocardiogram was another hour-long panic attack.  I know why I’m eager to have him out, because I want to see him, hold him, and confirm that he’s okay.  Right now, he’s this ambiguous creature who I love intensely without actually knowing him yet.  And as I prepare to know him, I’m distracted by the needs of my daughter and my family.  The ability to focus on Just the Baby isn’t an option this time around, which adds up to a different experience.

I’m emotionally lit up a lot these days.  With Birdy, I was in the hospital on bed rest around this time, so I assigned my emotional intensity to being trapped and lonely.  But it turns out I’m just as emotional this time around.  I’ve had some interesting outbursts.  More on that never.

(I’m going to take a stretch-guess here and assume it might be “pregnancy” contributing to my emotions at the moment.)

The emotions aren’t all negative, though.  I was at the Friends for Life conference two weeks ago and sporting a gigantically pregnant belly.  The year prior, I miscarried in the middle of the conference, so by contrast this year, it felt really, really good to be back with a baby safely ensconced inside of me, reclaiming a work/life experience that I treasure.

I’ve done some reading on antenatal … depression?  Anxiety?  Stuff.  And it turns out there are many links between people who have managed infertility before getting pregnant.  There are also links highlighted for people who have chronic illness and become pregnant.  And women who have experienced pregnancy loss are rolling along with their own loaded expectations.  So I’m rocking a threefer there.  And while I’m “aware” of feeling a bit off and a little less-than-optimal, I am still unsure of what to do with those feelings.  I can’t exercise at the moment due to some pregnancy-related discomfort, I’m having trouble falling/staying asleep, and I’m in a rotation of the same three outfits that sort of fit for the next six weeks, until he’s escaped.  Working through the emotions is a challenge, and I’m more in a limbo of (im)patiently waiting.

The point of this post?  I’m still here.  Six weeks left to go and doing my best.  And while I know his birthday doesn’t guarantee reclaiming my emotions (or decent sleep patterns), I do know that holding my baby in my arms and seeing his face will bring me the peace I’m seeking.  My house will be turned upside down and chaos will reign supreme as we adjust to life with this tiny biscuit, but he’ll be out, and safe, and huggable.  And I can’t wait for that.  

I look forward to that the most.

Captain’s Log: Week 32.

Captain’s Log, Day 224

I have been in this womb structure for over 32 weeks, and all is well.  In weeks past, I’ve allowed the creature they call “Mother” to dictate many of our decisions, but boredom and a diminishing return on leg room is giving me the desire to kick things up a notch.

Ha!  Kick.  I know that’s a clever pun because of the research I’ve done on puns in utero.  The library is amazing in here (didn’t you know that the majority of a woman’s uterus is lined with book shelves?) and since my eyelids became useful in opening and shutting in the last few weeks, I’ve done my best to do as much reading before my launch at the end of the summer.

Back to kicking.  I’ve learned how to kick.  How to punch, too.  I know my mother knows I’m learning because she’s stopped communicating in words and more in exclamations starting with a startled “oof!” sound.  I’m assuming “oof!” means “This feels terrific and comfortable!”  Time will tell.

Last night, I figured out how to wake her up, using the power of my space capsule here.  The books call my actions “Braxton Hicks contractions” but I consider them more “special squeezes,” launching my mother into a panic at 2.35 am.  (She also woke up at 1.10 am and 4.40 am in order to evacuate her bladder – another fun game for me.  That thing is like a trampoline!  Or at least what I’ve read about trampolines.)  It’s a process of making her belly tight and oddly pointy for short intervals, in preparation for my birth.

Which is weird because she never had these contractions with my big sister.  Instead, my sister was pretty quiet for the duration, with smaller kicks and smaller movements throughout.  (And since my sister made what Mother refers to as a “sunroof escape,” labor pains weren’t ever experienced then.  I am scheduled to make the same sort of exit, but the date is slightly to-be-determined, depending on the stability of something called blood pressure.  So far, that number is not causing any problems for anyone.)  I have taken a decidedly different, more excitable route with my kicks and movements, making her stomach look like a pile of kittens are rolling around in here.  Which they are not – it’s just me.  But I’m bored.  And need to exercise.

I’m the size of a coconut, or a jicama, or a head of lettuce, depending on which strange pregnancy tracking application being consulted.  (My mother talks about how she prefers actual measurements over food comparisons, as they just give her heartburn.)  I weigh almost four pounds and when they measure me during the ultrasounds, I’m in the 55 – 61% percentile for size, which is where my sister tracked consistently, too.  Or so I’m told.  I’ve heard mention of an A1C as well, which seems to be the best my mom’s ever experienced.

Actually, or so I overhear.  My ears work great.  As do my two umbilical cords.  Only one seems connected solely to me.  Hmmmm.  Will have to examine that fully when I escape.

I have about a month and a half to go before I’m born, during which time I’ll continue to grow and expand and explore this small space I’ve been given before vaulting into the real world.  Judging by my mother’s musical preferences, it’s a world filled with something called Beastie Boys and a fellow who is sad a lot named Damien Rice and lots of singing that she thinks no one can hear because she’s in the car by herself but – HEY MOM – you aren’t by yourself.  I’m in here.  Listening.  And judging your attempts at the high notes.

But I know you love me.  I’m learning what that means.  It feels good.  I hear you say it all the time.  And that Dad person.  And I hear my sister telling me that, too, as she puts her face against your stomach in efforts to get closer to me.

I have yet to discover what the “Loopy” creature is, but I’m excited to find that out, too.  The world sounds like a curious place, and I’m looking forward to discovering what it looks like outside of this comfy den.

 

ConnecT1D Retreat.

Until a few months ago, I didn’t know much about the peer-to-peer support and family connection accomplished by ConnecT1D.  It wasn’t until Susan Horst reached out to me to see if I was available to visit for their ConnecT1D retreat that I was thrown into their world of the powerhouse diabetes outreach taking place in the Pacific Northwest.

Susan Horst, project manager at ConnecT1D, shared her personal story over at A Sweet Life, shedding light on what brought her into the diabetes space in the first place and what keeps her here.  She was tasked with organizing and launching the first ConnecT1D Retreat and it was an event that both inspired PWD and ignited friendships. Joe Solowiejczyk and I were charged with facilitating discussions and delivering the keynote addresses, alongside Jody Stanislaw, Cassady Kintner, and other speakers touched by diabetes.

The Facebook group for this event was a little quiet before the retreat, but after everyone had a chance to connect, discussions started to blow up (in a good way) in the threads.  People were reconnecting, firming up plans, and sharing photos of experiences with new friends.  It was awesome to watch the group transition from “functional” to “frigging unstoppable.”

Jo Fasen, an attendee with T1D, said, “[The] ConnecT1D Retreat created a wonderfully unique opportunity, offered no where else that I am aware of, to connect in a safe, fun and friendly environment. Everyone could share in their own way and we learned from everyone while the speakers addressed serious issues and concerns with humor and humility. Memorable, compelling, impactful are only some of the words to describe this experience … and I don’t know anyone that won’t be back next year.”

Julie Schliebner said, “To connect with others sharing in the same struggle was invaluable to me. When I feel less alone and understood I am able to ride the roller coaster with greater self compassion. I am so grateful to ConnecT1D and each attendee. I really look forward to more time with this community. I want to attend every single year!”

Jim Cheairs chimed in with two things:  “I understand that I don’t have to live with T1D in a vacuum and I am in the process of ordering a CGM … [a] Dexcom, which is a result of info gleamed from others at the retreat.”

“The retreat aspect of the weekend is what made it the best ever,” said John Highet.  “Saturday’s conference was great – don’t get me wrong, with really good talks and really good participation & interaction.  But the real connecting didn’t start for me until the walk to the ferry with Brandon and Brenna VanDalsen and didn’t end until the ferry ride back to Seattle with David, Patricia, Alex, and Joel. In between were connections with many more, enjoying the sun and resort, just hanging out, and some inspiring, vulnerable and emotional small group breakouts on Sunday. It will be hard to top this, but I will be there whenever it happens.”

“For the first time in my life I felt like I wasn’t alone with type 1 diabetes,” shared Lauren Sorteberg.  “Connect1D was amazing and the speakers were down to earth and real! It shaped me in more ways than I could have imagine! It was an emotional, eye-opening experience.”

Diana Cheairs brought some spousal perspectives, attending the retreat with her husband (who has type 1 diabetes).  “I missed the first day so I didn’t know I am a T3 [person who supports a PWD]. All the T3 met outside by the beautiful willow tree. Looking around at all of us, many of us realized that we had never spent any time with other spouses of T1’s. Most of us had never even met another spouse of a T1.  Wow , that was weird to realize that in the 20 years out of 38 years that Jim and I have been together I had not spent any time with a T3. I shared things with the group that I have not shared with others because those others would not have understood.”

Access to sound and reasonable medical advice is necessary for a healthy life with diabetes, but peer-to-peer connections are just as essential.  Sitting with a group of people who understand the intimacy of diabetes, both emotionally and physically, can be a powerful healing and dealing strategy.  I’m grateful to have had the opportunity to visit the ConnecT1D group and see the power in their collective stories.

Attendee Tracy Wu summed it up perfectly:  ” It was such a great weekend for my mental well-being and gives me more oomph to face tackling diabetes for another 32 years!!”

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