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Posts from the ‘Diabetes Advocacy’ Category

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.  

A Jacket, Just in Case

BEEP BEEP BEEP

2 am

Low alarm. Where am I?

Hotel.

Hotel room in Kansas City.

Damp. Damp with sweat. My long sleeve shirt stuck to the inside of my elbows, ironed by panic.

BEEP BEEP BEEP

Kansas City. That’s where I am. Why am I beeping?

51 mg/dL. That red circle with the down arrow attached to it.

Asking to be calibrated.

Meter check. 32 mg/dL.

BEEP BEEP BEEP

No fucking way am I in the 30s. I start to come around a little bit, taking the six tabs left in my glucose tab jar and chewing them all at once, unhinging my jaw like a snake.

Prick finger again. Test strip.

31 mg/dL

Think fast. Unsure if I have enough tabs to correct this low blood sugar. Even if I do, unsure if they will hit fast enough.  Felt swimmy in the brain.  Can’t pass out in this room. No one will know for hours.

Quick decisions made. Pull on sneakers. Grab cell phone and room key.

Walk to the hotel room door. Open it.

Wait, if I pass out, I want to have a jacket on.

(WHY?)

Put my jacket over my pajamas. Sprint to hotel elevator, reasoning the adrenaline will help boost my number? Sweating like I’ve run a marathon instead of just down the damn hall.

Downstairs. Took 30 seconds. Felt like 3 hours.

BEEP BEEP BEEP

Walked to the hotel sundries shop near the check in desk. I saw juice and snacks when I checked in. Grab an orange juice. Drank it in one long pull while standing at the cooler. Grab another orange juice.

My face felt confused, like my mouth had slide down into my neck. Also completely lucid, despite plummeting blood sugar and migrating facial features.

Hotel concierge.

“Hi, how can I help you?”

I look drunk. Or lost. Or both.

Low, though.

Not sure what I said. I know I said diabetes and low blood sugar and I’m sorry fifteen times. I told him my full name, maybe more than once.  That I was embarrassed but was afraid I would pass out in my room so I thought I’d be safer in the lobby. “I put my jacket on just in case I passed out!” Laughed too loudly at my own not-a-joke.

He calmly sat me down on a couch in the lobby and unwrapped candies from the hotel’s leftover trick-or-treat stash, leaving them open-faced but still on the wrapper, lined up on the hotel bench like breadcrumbs to bring me back to myself.

BEEP BEEP BEEP

“Are you feeling better?”

I wasn’t sure. My hands were shaking a whole lot. But I could feel the hypo fog starting to lift and I knew it was going to be okay in a few minutes. His coworkers came over and lingered casually but carefully, standing over the lady in her pajamas with her jacket on, trick-or-treating a few days too late in the lobby.

Eventually, it was fine.  Embarrassing and humbling but fine.  I was grateful that someone was willing to sit with a stranger while her blood sugar tumbled, then climbed.

The hotel employee’s name is written on a post it note in my jacket pocket. With his manager’s email. And the contact information for their corporate office.

The gift basket I am sending this guy is going to be epic.

Diabetes Month: The One About Anxiety

I’ve had some anxiety flare ups in the past.

Like in college, when I’d break out in hives across my abdomen, tied directly to the more stressful moments – when exams were up, when I was working the early am breakfast shift five days a week and then going to class, when my parents split.

Like after my son was born and I pictured birds pecking out his eyes when we’d be on a seemingly innocuous walk around the bright and sunny neighborhood.

Like for the last year or so, due to the political unrest and a news cycle that ramps up feelings of instability.

For the last few weeks, I’ve had a lot of trouble going to sleep at night.  Not because I’m not tired.  I’m exhausted, honestly.  But my brain won’t shut off at night.  I worry about my kids and their health.  About my marriage and family.  About things that need to be tended to in the house – what needs to be cleaned, what needs to be replenished, what paperwork needs filing, etc to the etc of all et ceteras.  About everything I can control and the shit I can’t.  Everything all at once.

Once rolling, this worry spins out of control and then I start to worry about my body and its health. The autonomic actions of my body – breathing, heartbeat – become questionable.  Is my breathing too rapid?  Is my heart beating too quickly?  Does my arm hurt now?  Am I having a heart attack?  I feel nauseas; is that a heart attack sign?  Do I wake up my husband and tell him I’m having a panic attack and a heart attack?  I try to mentally force my heart to stop racing, force my brain to stop racing, but they’re off like greyhounds chasing a rabbit.

Sleep is awful lately.

Last night, I had a nightmare that a faceless woman died in my arms due to a low blood sugar.  She cried before she died and I woke up crying, immersed in fight-or-flight mode and had to reason myself back into a moderate mindset.  I could not fall back asleep.  My own blood sugar was 90 mg/dL and stable but I felt compelled to have a snack just in case (despite wearing a CGM, despite my husband beside me, despite, despite, despite but because, because, because).

I know it’s the news cycle that’s bringing me back into the anxious cycle of my early 20’s.  My emotional centers are permeable in that way.  I know myself well enough to see the cycle starting up and know I’m pinned against the wall of my spinning mind.  I’m on the Gravitron at the county fair.

What I don’t know is how to stop it entirely.

I’m embarrassed to admit that I am panicky a lot of the time these days.  It doesn’t feel comfortable to feel these feelings and it feels even less comfortable to write them down, but it’s how diabetes is these days.  The reality of the possibility of an issue while I’m asleep is a thing.  And that possibility has rooted in my brain like a spider plant, growing and latching onto the next patch of fertile synapses that should be used for writing or parenting but is now infested with spidery panic.  The reality of life with chronic illness is that it makes you acknowledge the forever of it, which makes me question my forever with it.

This will pass.  I know it will.  It has passed in the past.  Asking for help is hard.  Waiting for it to work is hard.  Pretending that diabetes isn’t something I worry deeply about at times is hard.   Not every day is hard, but the few that are become a full stop.  Spending Diabetes Month trying to show a strong, capable version of life with diabetes is hard when some nights are spent worrying instead of warrioring.

Sharing it is hard but not sharing it is oddly harder.

This is diabetes.  Or at least it’s my diabetes at the moment.

Diabetes Month: Meter Maid

What’s in the baaaaaaag?  C’mon … what’s in the bag?

Yep.  This little bag is with me at all times.  All.  Times.  My daughter picked it out years ago and I’ve been dragging it around the world with me since, housing essentials for my diabetes management.

Meter, test strips, lancets, lancing device, an insulin pen in case of pump failure, and a pen needle tip.  (And chapstick, but that’s not essential for diabetes.  Just for lips.)  With these things, I can calibrate my CGM, keep track of my glucose results, and take a dose of insulin if needed.

Without these things, I’m not okay.  Not healthy.  And without these things for several days, I’m dead.

Humbling what sits in a pencil case bag.

Come back every day in November for a look into life with diabetes, from the perspectives of people living with it, clinicians caring for us, and the caregivers who support us.

Diabetes Empowerment Summit – November 1 – 5!

Why the Diabetes Empowerment Summit?

“Because it is a tool that I wish I had when I was struggling, and I want to help bridge the gap between traditional healthcare, and the emotional tools we all need but are not given at the doctor’s office.”

YES.

Daniele Hargenrader knows that people with diabetes are grappling with more than just diabetes, and that psychosocial support is a necessary itch to scratch when it comes to managing diabetes in the context of real life.  Which is why she has created the Diabetes Empowerment Summit, taking place from November 1 – 5, entirely online and available to you for free.

Kerri:  What does your summit offer that others don’t?

DH:  As far as I know, this is the only diabetes conference of sorts that takes place solely online. We are passionate about focusing on the mental and emotional aspects of living with chronic disease, and we really wanted to make psychosocial support a much more visible part of Diabetes Awareness Month.

I am passionate about providing information that comes mostly from other people who live with diabetes themselves. Other online summits feature experts with valuable information, yet almost none of them actually understand the lived experience of diabetes, which is very important to me when seeking information about how to improve my life with diabetes.

Many in-person conferences are doing this as well, which is wonderful, though with our online format we are aiming to reach people with diabetes, our loved ones, and our healthcare practitioners who might not be able to attend an in person event.

Kerri:  Why online versus in-person? 

DH:  One of the biggest benefits to hosting an online summit is that it allows us to offer the event for free.

An online summit is like attending a diabetes conference (for ALL TYPES of diabetes) that has some of the most high caliber speakers, without having to pay for conference fees, travel costs, taking time off work, etc., and that you can watch at your leisure without worrying about missing the presentations that appeal most to you as all presentations are available to watch for 48 hours after its initial release.

Of course, you know I LOVE in person conferences, promote them all the time, and go to as many as possible, however, over the years of sharing these events with my community, I’ve received so much feedback saying that they’d love to attend these conferences yet cannot make it work financially, with their schedule, or with their location in the world, so I wanted to provide a memorable, educational experience as an alternative to those who can’t make in-person work right now.

Attendees can also post questions and comments, and interact with each other on a forum inside the Summit once the summit goes live on Nov. 1. I will be moderating throughout the Summit. You must register to participate!

Kerri:  And how do you want attendees to feel after attending the summit?

DH:  I would love for people to feel that they now have the tools they need to begin or continue to further their personal self-love and self-care practices in order to cultivate the mindset of empowerment in their lives more and more often.

The aim is for our attendees to feel more confident about continually making the wide variety of day to day choices we must make while living with diabetes.

After the summit, my hope is that the attendees will feel more connected to their community, and feel a stronger desire to treat themselves with the same love, care, and respect they treat their most treasured loved ones with.

Overall, we want them to feel and know that they are loved, not alone, and ENOUGH.

Kerri:  This sounds great.  How can folks find out more?

DH:  To find out more and to register for free, simply go to www.des2017.com

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