Skip to content

Replacement Parts

This piece was written back in 2013 about a different insulin pump, but the song remains the same:  pumping insulin alleviates some of my diabetes mental load and makes living with this disease a little mellower.  I mean, I could “wash the dishes by hand,” but it’s so much nicer to play with my kids or go for a walk while the dishwasher runs.  

  *   *   *

Our dishwasher broke a week or two ago. It was pretty old (came with the house) and at that point where repair out-priced replacement, so my husband and I decided to head to a local appliance store to pick out a new dishwasher.

Quick and painless (except in the wallet department), we walked out thirty minutes later with the delivery and installation of our new dishwasher scheduled. And a week later, the old dishwasher was brought out to pasture (I like to think that they build robots out of old appliances), with the new one installed and whirring and washing, as advertised.

“Dude, that was too easy. Now I want to replace all of the appliances in this house that aren’t working 100% perfectly,” I said to Chris as we admired our new household addition.

Later that night, as I changed out my infusion set and primed my pump with insulin to last me another three days, I thought about my own replacement parts. On my hip was an appliance, for lack of a better word, that stood in as a replacement for my crapped out beta cells. The insulin-producing cells of my pancreas have been all-but dormant for the last twenty-seven years, forcing me to make synthetic insulin as part of my life, in order to sustain my life. For years, I took injections, which was the diabetes-equivalent of hand washing all my dishes.

Pumping insulin, for me, is the dishwasher of my diabetes. While it doesn’t do things “automatically” in that it’s not a closed-loop system, once I program it and connect it to my body, I don’t have to think about insulin for several days at a time. I bolus for meals and I correct blood sugars as needed, but for the most part, the pump sits on my hip and infuses insulin into my body throughout the day, without being reminded or poked or harassed. It’s simply another way to “wash the dishes,” so to speak, but it’s so much easier, and cleaner, and less intrusive in my life. Fewer needles against my skin, fewer moments when I worry about overnight blood sugars, fewer moments when I spend the morning hours with dawn phenomenon-elevated blood sugars. If such a thing as “dishpan hands” exists in diabetes management, the pump helps take that rub away.

“Did you seriously just compare your pump to a dishwasher?” my husband asked, laughing at me.

“Yep.”

“Your pump is worth like fifteen dishwashers, price-wise.”

It’s the most expensive replacement part I have ever encountered, but when I think about days of seven, eight … nine? injections per day just to achieve a baseline of “feeling fine,” I’m grateful that technology has progressed to this point. Diabetes technology now is so different than when I was first diagnosed, when at-home glucose meters were viewed as revolutionary.   While I know I can still “wash the dishes by hand,” my diabetes management is so much smoother, and more streamlined, with my pump.

Appetizer

Even the best laid plans can go awry when hypos creep in before the meal is served.

Glucose tabs … the most unappealing appetizer.

Do More Good.

It’s World Diabetes Day.  YAY!  And buried amongst the bits of distressing-as-hell news crap out there will be articles about diabetes. Casual mentions of this monster that lives under our bed (and that we feed occasionally). And tomorrow, the world’s attention will twist to the next crisis.

But oh, my fellow PWD, we’ll still be on this diabetes journey long past today. And tomorrow. We’re in this for the long haul (until the days we can slap on a device and let it do diabetes for us, or until they science us up a biological cure for this mess).

Which means that we’re all in the same boat.

Which might sound a bit distressing and a little overwhelming.  BUT.

We can do something now.   We can do something to create and contribute to a rising tide of positivity and hope.  We can make a difference.

Dude.  We can do more good.

That’s what I want to do.  I want to be part of the tide that lifts all boats, so that we, as a community, can ferret out some happy and find something other than despair in our timelines.  Do more good.

There’s no hashtag.  No separate website for this.  It’s not a “campaign” and there’s not a Twitter chat or email sign up or thing you have to subscribe to.  All you need to do is take a moment and make a concerted effort to do something good, or share something good, or contribute to something good.

Donate to a cause that you find powerfully good.  Share a story from an organization or an individual that you care about.  Pay for someone’s coffee.  Say thank you when someone holds the damn door.  Give a hug to someone in your family before they need one.  Grin at someone.  Tell someone you love them.  Tell yourself you love yourself, too, while you’re at it.

Small moments can amount to big changes.  Create a moment of happiness for yourself and someone else by doing more good.  I refuse to believe that the world is actually becoming worse, not when I see so many people who are making a difference, both big and small.

We can all do more good.

Do more good.

Do more good.

Do more good.

 

Looking Back: Everybody Beeps

Revisiting some diabetes poetry this week while traveling.  This one is a take on R.E.M.’s Everybody Hurts, only with an alarm fatigue component …

  *   *   *

(With deep, deep apologies to R.E.M. and Everybody Hurts)

Everybody Beeps

When your day is long
And the night, the night is yours for sleep.
When you tuck yourself in bed
For some rest … well hang on

Don’t close your tired eyes
Cause you wear a device
And everybody beeps … sometimes.

Sometimes reservoirs are low
And need to be refilled.
So you get up out of bed (set off, prime on)
Remove the older site (prime on)
You fill with what you need
For three days … well hang on

Everybody beeps
Takes comfort in the tech
Everybody beeps
Don’t throw your pump, oh no
Don’t throw your CGM
You feel like you’re alone?
No, no, no … you’re not alone.

If your islets are a mess
And you’re doing the best you can
When you think you’ve had too much
Of the beeps, well hang on

Well everybody beeps, sometimes.
But you are not alone.
Community is here.
All the time.
We’re here all the time.
All the time.

So hold on, hold on
Hold on, hold on, hold on, hold on, hold on, hold on
Everybody beeps

Why We Revolt: An Interview with Dr. Victor Montori

The founder of the Patient Revolution is Dr. Victor Montori, a leader in the Knowledge and Evaluation Research Unit at Mayo Clinic and an endocrinologist at Mayo. Dr. Montori is interested in how knowledge is produced, disseminated and taken up in practice — and how this leads to optimal health care delivery and patient outcomes.  His book, Why We Revolt, has just been published, and he’s here today to talk about the how, why, and necessity of a patient revolution.

Disclosure:  For the last few months, I’ve been proudly involved as a board member for The Patient Revolution and have contributed to some of their editorial endeavors, so I’m invested in this organization.  But not just because it’s something to do.  I’m invested, invigorated, and inspired by The Patient Revolution because the people involved are making a difference now instead of kicking the can of careful and kind care down the road.

Kerri: Victor, last time we spoke here on SixUntilMe, we talked about the evolution towards a patient revolution. Well now the Revolution has arrived. Can you tell me a little bit about the inception of the Patient Revolution?

VM: The Patient Revolution is the coincidence of two lines of thinking and doing. On the one hand, the Warburton Family Foundation whose focus is to promote better care through better patient participation in care and the KER Unit, a Mayo Clinic research group that has been working for more than a decade in advancing the science of patient-centered care. As the ideas came together, it became evident that a new nonprofit, The Patient Revolution, was necessary to advance this mission. We advocate for nonviolent action, one focused on conversations at the clinical, regional and national level to turn away from industrial healthcare and toward careful and kind care for all.

Kerri: And in the last few weeks, you’ve released your book, Why We Revolt. Why do we revolt, and what is the book about?

VM: I had to write this book now. I believe that our healthcare system has corrupted its fundamental mission and has stopped caring. This book argues that greed is a basic reason for why people sometimes get care by accident, other times the are treated with unintentional cruelty, this because of care for people like you, not care for you, you being missed. We need to turn away from such industrial healthcare and toward care that is timeless and elegant, that notices each person in high definition and treats them as one of our own by clinicians working in a system based on love and solidarity. This is why we revolt. This turning away cannot result from a bunch of incremental reforms; it needs a revolution.

Kerri: What was the writing process like?

VM: Each chapter has its own pain, its own pleasure, its own reason for being. My biggest fear in writing this book is that its content would be ridiculous, and among the chapters the two most at-risk are Love and Timelessness. To speak of love in healthcare seems so removed from the day-to-day experience of industrial healthcare and the technical orientation of much of its workforce, everyone more or less convinced that they show up to work to do a job. Yet, we must reclaim love between fellow humans as a fundamental part of the reason and the way we care for and about each other. Time stands in the way of almost any good idea about care. Lack of time is often cited as a barrier. Yet, I don’t know why we cannot imagine care that is timeless, not that each visit would have infinite duration, but where there is enough time for it to grow thick, to fly because it does not move, because we are caring or being cared.

Kerri: What section or chapter are you most proud of … or perhaps most terrified of?

VM: I am getting notes from patients, stories they want to share in which they use the words of the book. This is how i want people to feel – ready to share their stories, with stories and conversations the nonviolent tactics of this revolution. Some have re-experienced pain as the book reflected their experiences of “care” and that has given me pain. But others who I have never met have felt heard, seen. From their notes I also have learned that people have found common ground with the values and feelings I disclose in these pages. It is as if readers are forming a community with this writer and with each other. Well, this are the seminal moments of what I would hope will be an unstoppable movement for careful and kind care for all. Each of these responses have made me feel enormous gratitude, moved by their love, and overwhelming responsibility to take this further until we can surprise ourselves with our success.

Kerri: Who should be reading Why We Revolt? And why?

VM: I dedicated the book to my sons, and they are teenagers. My hope is that by the time we are finished they can take patient care for granted, and regard industrial healthcare as an aberration, a historical accident of greed. I think clinicians and patients, caregivers and policymakers, citizens and managers, but mostly young people, not yet bit by the cynicism virus, and dedicated to work for a better world, perhaps students of the helping professions. I hope this book will give them a vocabulary for the fight, and elicit the stories that make all the difference.

Thank you, Dr. Montori, for helping pave the way for conversations about careful and kind care.  For more about the Patient Revolution, visit their website.  For more about Victor’s book, you can get an overview here and buy your own copy on Amazon.  

And if you’d like to share your healthcare experience, or your perspectives as a patient or clinician, visit the Patient Revolution website and get involved.  

Follow

Get every new post delivered to your Inbox

Join other followers