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Apr 28

Boop Beep Boop.

“Boop beep boop!”

The sound is unmistakable, as it used to ring out from my hip for so many years.  That noise, the sound of a Medtronic insulin pump alerting for whatever reason, used to be my soundtrack before Fur Elise and the “boop boop boop!” of the Animas pump replaced it.

“Boop beep boop!”

I was sitting outside of the classroom where my daughter was meeting with the school administrators for her pre-kindergarten screening tests when I heard that familiar noise.  (The tests upon which I will not comment because this whole process is so strange and so involved – whatever happened to reading books and milk cartons and coloring?  In related news, I’ve become an old bird.)

Looking up, I saw a teacher walking down the hallway, casually talking to her colleague with their lunch bags in hand, her fingertips deftly and instinctively pressing the buttons on her insulin pump, administering what I assumed was a lunch bolus.

“Boop beep boop!”

Even though I’ve found so much comfort in the diabetes community and have made lifelong friends who are funny, kind, and also happen to not make their own insulin, I wanted to leap up and say hi to the woman in the elementary school who also wore an insulin pump.  She was here!  In my town!  Randomly!  A PWD (person with diabetes) spotting in-the-wild is always exciting.  Kind of like finding Bigfoot, only with fewer over-the-shoulder glances and more “see a birthday cake!” faces.

But instead, I sat in the folding chair and minded my own business, secretly thrilled once again by the knowledge that it only takes a quiet series of beeps and boops to remind me that I am not alone.

 

Related posts:

Boop Beep Boop! Weird Together. It’s a Good Tune.

Apr 27

6 Comments

HealtheVoices 2015: Stepping Outside the Diabetes Bubble.

Getting all my disclosures out of the way first:  I am on the advisory board for this conference and also presented as a speaker.  My travel, lodging, and expenses for the conference were covered by Janssen, and I was compensated for my participation and my consultation.  My opinions on the process and the conference are mine, but admittedly influenced.  Bias lens in place!  Moving on.

Two weekends ago, I was in Jersey City for the first (of what I’m hoping will become an annual event) HealtheVoices conference, put on by Janssen.  The formal tagline description of the conference was “HealtheVoices Conference: Empowering Online Advocates” but in my head it was “HealtheVoices: Finally, A Bunch of Us In One Room.”

Most of my advocacy work takes place in the diabetes space, talking with people already familiar with diabetes.  Or folks newly introduced to diabetes.   Or working in diabetes.  However you slice it, the majority of the people I come into contact with in an advocacy sense are touched by diabetes somehow.

But diabetes is only one “patient space” on the Internet.  There are patient communities everywhere, spanning a slate of conditions.  Cancer, Crohn’s disease, Rheumatoid arthritis, mental health, HIV/AIDS, lupus, multiple sclerosis … these conditions are just a small cross-section of the topics covered online.  People come together through common needs and experiences, and dealing with health-related issues creates a melting pot of discussions and camaraderie.

the attendees – all photos courtesy of the Janssen photographer

I was really excited to be part of this conference because it helped me pop that diabetes bubble, bringing me outside of my comfort zone of personal experience and immersing me into a diversity of experiences.  I could not have been more grateful for the opportunity, because it was inspiring and humbling all at once.

“I know I have something in common with all of you,” I shared during the presentation on compassion fatigue (a discussion about managing personal health needs and the growing needs of a growing health community) “But I don’t know the specifics of it yet.  I know what my peers with type 1 diabetes are dealing with, but I am still learning so much about other health conditions.  There’s so much I’m learning about what it takes for each individual here to have a ‘good day.’”

And I loved learning.  Seriously, there were some amazing people in attendance.  Here are few blog recaps from folks who attended, and other viewpoints can be grabbed from the #healthevoices15 Twitter discussion:

me, Karen, Kim, and Jenni

I don’t know all the proper language and subtleties and nuances that are necessary to speak eloquently and respectfully about the health experiences of others, but I did feel that strong, unspoken, powerful thread of “me, too” running through this conference.  We don’t deal with “the same” but we are all in pursuit of a life worth living, despite or because of whatever health challenges are in our lives.

the healthevoices patient advisory panel

Personally, I loved the diluted focus, stepping away from personal blood sugar checks and the beeping of pumps to see the patient community from 10,000 feet and the diabetes trenches, simultaneously.  It wasn’t about a specific health condition, but about the human condition, (and as cheesy as that turn of phrase might be, I’m sticking with it because there’s been a surplus of coffee today).  There was a high level of respect, community, and inspiration that left me needing a few days to process, and a lifetime to act upon.  People with diabetes have a great and empowered community to draw from, and outside of the diabetes community is a bigger, broader, more diverse community of patient advocates who are aiming to change the world, moment by moment and breath by breath.  Together, we are powerful.

To that, I give a solid “hell yeah.”

Related posts:

Partnering for Diabetes Change. Sort-Of Guest Post: What Do You Wish Health Care Professionals Knew? An In-Depth Look at the Diabetes UnConference.

Apr 21

7 Comments

Writer’s Block.

Sat down at the keyboard
And I couldn’t find the words.
I found the letters, that was easy.
Home row right there in my face.
But the words? The words?  The words?
I can’t find those anyplace.

(I grabbed a pen and paper
To see if that would start the flow
… but it didn’t.)

I’ve run out of things to talk about.
Run out of things to say.
I don’t want to document the hold
That my disease has here today.

Yesterday we watched a movie.
And today, I’ll go outside.
I want to run and run and run until
inspiration and desire collide.

I’ll water plants – all the green beans.
I’ll log miles like a race.
I’ll hug my smallest Birdzone
And let the sunshine hit my face.

I don’t want to think about my meter.
Incessant arches of my graph.
I want to test and bolus and move on
Not let disease incite my wrath.

Burnout?  No.  Frustration?  Nah.
It’s not like I’m done caring.
I just need a break.  A small one.

And then I’ll go back to sharing.

Related posts:

Pell Bridge Run. European Blogger Summit: Photo. D-Blog Week: Diabetes Poetry.

Apr 17

2 Comments

Plug It In.

I’m not a good traveler, but I am a good packer. Part of my preparation ritual is to make sure I only bring what I need and that outfits are tried on and coordinated before I go. (Because there was that one time I brought a shirt and forgot pants and that made for a different sort of panic before a presentation.)

Thinking ahead helps me prevent over-packing. (I have made a rule about not checking baggage, ever, if I can help it.) So before I left for a business trip on Thursday afternoon, my house was a brief flurry of coat hangers, dresses, and shoes. I tried on four or five different things before chucking them into my suitcase (who am I kidding – I military roll everything so it fits) and then it was time to get ready to leave the house.

It took me almost an hour to realize that, in my frenetic fashion show, I had my pump clipped to my hip but not connected to my infusion set. It wasn’t until I heard the Dexcom alarm let loose with the HIGH ALARM! that I realized my tubing was wagging like a tail. Disconnected from my body. Leaving me on an unintentional insulin hiatus.

So many variables influence my blood sugars – exercise! Insulin levels! Food! Stress! Exclamation points!

But sometimes it’s as simple as remembering to plug shit in.

Related posts:

When Good Insulin Goes BAD. Ketchup and Mustard. Raspberries.

Apr 14

12 Comments

Sharps, or “Shaaaahps,” Containers.

In the last few weeks, I’ve taken some device breaks and reverted back to some of my multiple injection (MDI) ways (until skin rashes healed up, bruises started dotting up my skin landscape, and frustration with trying to draw up 1/4 of a unit of Humalog using a syringe tossed me back into DeviceLand).  It was a good break and one I needed, but I was reminded of how many sharps I can accumulate during the course of a week on MDI.

Back when I lived at home with my parents, my mom used an empty detergent bottle to throw my sharps into.  When it was full, she taped it up with duct tape and my dad disposed of it somewhere “official.” (But to be honest, I have no idea where he brought it.  The shed at my childhood home could be filled with used insulin syringes shoved into fleets of Tide bottles, for all I know.)  When I moved out and went to college, I continued the same system only I brought my full sharps containers to our local pharmacy.

These days, I don’t generate a lot of sharps and currently have a few containers that need to be disposed of (tips from Joslin on sharps disposal here), but that’s largely in part due to the fact that I rarely use syringes these days.  Even when I’m on pump vacations, I tend to use insulin pens over orange-capped syringes.  (Did anyone use one of these back in the day?  I loved this thing.  It was like a fingernail clipper for my drug paraphernalia.)  I busted out a “formal” sharps container that I had in storage for the last few years and have been using it for pen needle tips, lancets, etc.

Sharps. Or, if you're from New England: "shaaaaahps."

A photo posted by Kerri Sparling (@sixuntilme) on

It feels strange and foreign to not be shoving my sharps into a discarded laundry detergent bottle.  I feel like my sharps went all professional.  Like they wear tie clips and have board room lunches. But, at the very least, they are properly contained and will be properly disposed of and that makes me feel like I’m properly PWD’ing.
 

Related posts:

Guest Post: The One Diabetes Rule I Always Follow. A Wicked Rash. Insulin Pump Refill: In a Pinch.

Apr 13

19 Comments

Dexcom SHARE: First Impressions.

“Your thing is going off.”

Though nondescript, that phrase is a loaded one.  It is Chris-speak for, “Your Dexcom is making an alarm of some kind; you need to take a look at it.”  And now that the Dexcom SHARE application is feeding my glucose results to my husband and a few other authorized viewers, when the thing goes off, other things go off and people are notified.

And by way of notification, I’m disclosing right here and now that I have a relationship with Dexcom.  It’s kind of serious, and I look forward to when they meet my dad.  Details here.

I’ve been using the Share for a few weeks, and have had some time to give it a good once-over.  My take on the SHARE 2 application itself:

  • Overall, my data transmits pretty seamlessly from the receiver to the phone, but there have been weird times when the data just stops.  (When I’m on a plane, this makes sense.  When I’m at my kitchen table, it does not.)
  • Essentially, that means I am poking this fine little fella in the face several times a week, to help jump start whatever is borked in transmission.  If he were less cute, I wouldn’t feel so bad about jamming my index finger into his jaw.
  • It feels weird to have to put my password into the app in order to access the “followers” screen.  Why protect that specific screen, but not the others?
  • I thought having the option to only add five followers would feel limiting, but in fact, the ability to share my CGM data has not made me want to broadcast my stuff to the world.  Five followers is fine so far; right now, I have my husband, a close friend, a doctor-who-is-not-my-doctor-but-we-are-trying-something-out-for-the-sake-of-SCIENCE, and myself.  And yes, I have added myself because I wanted to be able to access my data alongside the data of those who I am following when I go into the Follow app.
  • (Does any of that make sense?  Let me know if it does not.)
  • Also, iOS only?  Frustrating because anyone who is not using an iOS device can’t be added to my network.
  • The alarms that are issued through the phone are wicked loud, and very useful.  I recommended that Chris keep my high alarms off and only receive notifications for hypoglycemia, which is working out reasonably well.  (Especially when I am traveling, and can respond to his, “Eat something,” texts with a quick, “Already did.”)
  • The application doesn’t seem to eat up my battery life on my phone or on my receiver, which I appreciate.  I feel like the Share receiver holds battery life better than my previous receiver.  I charge it once a week and even then, it’s not drained.
  • I forget that the application is on and working because 85% of the time, it’s on and working.  I rarely switch it off because it doesn’t impact my battery life (or actual life) much to keep it on.  Except when it becomes emotionally charged, which is a whole different point and one I tackle a bit further down.
  • Using the receiver that’s Bluetooth enabled versus the dock you had to plug into the wall is obviously an upgrade, and contributes to ease of use.  Also, it’s easier to pack.  And harder to forget.

And my take on sharing, in general, with this application:

  • Sharing data is personal.  Wicked personal.  And it’s a choice, one I’m grateful I can make.  Again, I can’t rework my islet cells, but I can decide what devices and treatments I use to manage this disease.
  • And sharing makes me feel a little ashamed, at times.  I can reason as to why it should NOT, but it’s a reasoning I find difficult to follow through on.  Keeping my blood sugar data devoid of emotional valuation is difficult for me.  I was raised on “good” and “bad” blood sugars, not “in range” and “out of range,” and seeing a graph that pings and pongs all over the place makes me feel weird emotionally as well as physically.
  • For example, two weeks ago I had a urinary tract infection (much like this epic one).  It was nasty, and both the infection and the antibiotics for it sent my blood sugars into the stratosphere.  This glucose saturation was sent up to the cloud and pinged out to the people I trust.  None of them knew I had an infection, but I felt the need to say something about said infection so they’d understand why my numbers had gone bananas.  I felt good about having people I trusted so much that I knew they wouldn’t judge me, but at the exact same time, I felt the need to explain myself.  My knee jerk response of justification kind of flies in the face of the security and trust.  And it’s not because of them or how they judge me, but because of me and how I judge me.
  • Same goes for the following week, when I was on another medication (everything is fine, by the way – just a flurry of things all at once) that caused wicked blood sugar spikes.  We’re talking HIGH with arrows still pointing up.  I took a bolus that put every other bolus I’ve ever taken to shame.  And after a few hours, I mentioned this medication to those with access to my data because I felt the need to explain the numbers.
  • Which opens up my “what the fuck” mental folder, where emotional responses to diabetes end up filed.  On the one hand, I really like having a loved one or two able to see my data because that their access offers up a safety net I’m very grateful for (and have written about several times).  Also on that hand is the accountability that works to my benefit.  As I told my friend who has access to my CGM data, the commiseration angle is empowering because it makes me want to rein things in faster than if I was the only one looking.  Blood sugars on display are ones I watch more carefully, for whatever reason.
  • But on the other hand is my desire to turn off the data sharing because I want to let my blood sugars stutter and splutter without scrutiny.  I want to fail, or do what I perceive as failing, in private.  Sometimes I want to leave the Sharing option on only throughout the nighttime hours, or exclusively when I’m traveling, so I can keep a foothold on my dignity.  Not that my numbers are shit all the time, but the past two weeks have been tough even for me to see, and I’m familiar with my own bounce.  (And there I go again, explaining away the things that make me feel ashamed.  This is part of the fuckery, because my management does not come easily to me, and I try every single day to work these blood sugars out.  I test and exercise and track and eat well and truly make efforts and yet blood sugars bounce.  I can blame diabetes, but since the due diligence list is so long, there’s always something I can look at and blame myself for.  Which is a fun dance.)
  • Have I mentioned that sharing data is personal?  Let’s go back to that for a second, because it is.  And the level of sharing that works for me on days when my blood sugar is 94 mg/dL and holding steady is very different than when I’m riding out a 287 mg/dL for three hours.

I’ve made no secret of the fact that I appreciate options, and the option to Share is one I’m happy to have.  Coming full circle, I can choose to share or not share.  I can also turn off accessibility to others with the click of a button.  Honestly, I am grateful that I have a network of people I trust with this kind of personal data because it’s some soul-baring kind of shit.  And as an adult, I can decide how these data are dealt with because they are mine.

Maybe, with time, I’ll stop viewing these data as little dots of validation and instead as information to help me live better.

 

Related posts:

Dexcom SHARE with Bluetooth Thingy. First Impressions: Dexcom SHARE. Clouding on the Road.

Apr 10

2 Comments

The Friday Six: Sea Serpent of Doom.

I’m not going to complain about the weather.  Nope.  Not even a little bit, because eventually it will be so balls hot that the sidewalks melt and crumble into an oatmealish texture, so I am going to be quiet about the fact that we STILL HAVE THE HEAT ON and it’s mid-April.

It’s time for some link-sharing, because there’s lots of curious bits and pieces to read.

Sixty-three years with type 1 diabetes.

Charlie Kimball and his continuous glucose monitor make the news again.

Is being a night owl bad for your health?  (I hope not.)

I really like this Instagram account:  Beyond Type 1.

Adam Brown issues ten diet commandments for better diabetes management.

What are your plans for July?  If you haven’t attended the Children with Diabetes Friends for Life conference, this year would be a great year to get to know your extended diabetes family for the first time.  Or to reconnect.  Either way, your heart will thank you for it, even if your pancreas is still too lazy to even get out of bed.

In pursuit of closing the loop.

DHF Joins Diabetes Advocacy Alliance.

diaTribe takes a look at the Diabetes UnConference.

This stupid fucking headline made me want to throw my computer.  The JDRF UK’s response on Facebook was awesome, though.

“Patrick Peterson discloses that he’s diabetic.”  Yes, I had to cut-and-paste that headline because I know zero about anything related to football.

“Dexcom® Introduces Apps That Enable the First Ever Continuous Glucose Monitoring (CGM) on the Apple Watch“  Well hot damn, Dexcom!

I had no idea the Brontosaurus was ever up for debate.

And last week, I did one of those “drink wine and paint something while carefully supervised” sorts of events.  It was fun.  I’ve never painted anything before (other than the walls of our house and a birdhouse one time), and I followed most of the instructions. Until I got bored.

We did a paint-and-drink-wine thing, with careful instructions from a local artist. I followed most of the directions.

A photo posted by Kerri Sparling (@sixuntilme) on

Happy weekend!!

Related posts:

Friday Six: Masterlab, TypeOneNation, and Jim Turner! Tootsie Roll of Doom. Friday Six: DBlog Week, Small, and BAMWD!
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