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Posts from the ‘Real Life Diabetes’ Category

Finish Line Vision: An Interview with Jay Hewitt

I remember watching Jay Hewitt speak at a Children with Diabetes Friends for Life conference several years ago thinking, “Why do people do Ironman triathlons?  And also, if you do more than one, have they done Ironmans or Ironmen?”  Grammar quandary aside*, Jay is a physical force to be reckoned with and he’s done the whole Ironman journey with diabetes alongside him.

I’m proud to call this guy a friend.

Recently, Jay published his first book, Finish Line Vision, and he’s visiting here on SUM to talk about the writing process, the final product, and what it’s like to cross that finish line.

Kerri:  For friends who don’t know you, who are you and what is your connection to diabetes?

JH:  I’ve had type 1 for almost 27 years, diagnosed in February, 1991, when I was 23 years old in my first year of law school.  Since then I practiced law for over 20 years, raced Ironman triathlons and three years for the US National Long Distance Triathlon Team in Europe and Australia.  Now I’m a husband, dad, speaker, and business consultant on overcoming obstacles and achieving goals.

Kerri:  You have spent a lot of your time racing professionally as an IronMan triathlete are you still racing?

JH:  No, after fourteen Ironman and eighteen half Ironman triathlons, dozens of marathons and cycling to win the Race Across America, I was tired!  Ha!  I achieved everything I wanted to achieve racing.  One of the points in my book chapter on work-life balance is “to have the time of your life, make it the right time of our life.”  My priority now is racing around after my three young kids, and building my business.  But I still keep fit.

Kerri:  And you’ve also taken on a career as a motivational speaker.  What’s that been like?

JH:  Such a privilege, and a challenge.  I love it.  It’s a privilege to meet people and hear their stories, their struggles and their dreams.  And I can see it in their faces from the stage.  I don’t give rah-rah cheers or cheap platitudes.  It’s real stories and real emotion and advice that people can use.  People deserve substance.  They want to know, “How can I use this in my life?” and they want it delivered well.

It is a fun challenge to speak to a room of hundreds, sometimes thousands, of people of all different ages, and to people with diabetes and health care professionals and medical companies.  Next month I’m the commencement speaker at a college graduation- the last time I wore cap and gown regalia was graduating from law school!  Each member of an audience has obstacles and goals that are unique to them.  I try to tap into their personal motivation.  I also speak to business groups that have no connection to diabetes, but I always weave in diabetes about overcoming obstacles.

Kerri:  But now you’re an author!  Congratulations!  What inspired you to put your story to paper?

JH:  I’d been speaking for years, and people kept asking me for more that I don’t have time to give on stage.  More information, more stories – the good and the bad, the real stuff we all struggle with – and solutions and advice.  They also wanted to share it with others.  People may not remember what I said in a speech, but they will remember how I made them feel.  A book is something permanent they can share and refer back to.

Kerri: Your book, Finish Line Vision, has been a labor of love for the last few years. What does it feel like to have crossed this particular finish line?

JH:  Like the joy finishing my first Ironman, just not as painful.  I don’t do something unless I can give it my best.  I knew a book would be permanent.  Once it’s in print it is out there and I can’t take it down or update it like an online post.  I can’t go to everybody’s house and say “can I have that book back?  I need to add something.”  Ha!  I wanted it accurate and reliable for people to use as a resource, and inspirational regardless of your stage in life.  I hope that I have accomplished that.

 

Kerri:  What was the process of writing Finish Line Vision like?

JH:  It was first establishing an outline for the topics I wanted to cover, like a plan to race an Ironman, or build a house. Then insert the stories from my life and the lives of others, reading and studying a lot of books and researching the neuropsychology of achievement, diabetes, health and wellness and how high achievers overcome obstacles and succeed in life, business, arts and sports.  I don’t say it unless I know it’s true, and have the research to support it.  A lot of people read the manuscript and gave feedback and fact checking – endocrinologists, athletes, business professionals, and even an incredibly talented writer with diabetes who looks a lot like you, Kerri!  That girl is a genius writer!  [Note:  I helped Jay with some of the early drafting a few years ago and he’s been nice to me ever since.]

Kerri: What part of the book is your favorite?

JH:  The book is funny and emotional, to entertain you and inspire you, and educational to inform you.  I tell the irony of the circle of life – the gripping emotion when I was diagnosed with diabetes, the worst day of my life, and how that motivated me to later race Ironman triathlons on the elite level – the best days of my life.  When I write about preparation and adjusting – people with diabetes understand that! – there’s a fun story of when I proposed to my wife during a race, and it didn’t go as planned.  It got kind of bloody.  But it worked!  Ha!  There are fun stories about elite athletes being scared and nervous, famous people failing and doubting themselves, and great quotes to remember when you feel that way.  I guess that’s more than one favorite part!

Kerri:  How do you want people to feel after they finish reading your book?

JH:  Motivated to take action.  Inspired to overcome an obstacle in their life and work toward a goal, even if that goal is intimidating and scary that they might fail.  I have a whole chapter on how high achievers have failed, and then succeeded.  I want people to feel “I can do this!”

Kerri:  And lastly, where can folks grab a copy of your book?

JH:  Order from my website www.jayhewitt.com and I will sign it for you!

Thanks for stopping by, Jay, and for sharing your finish line vision with us.  If you’d like to keep up with Jay, you can order a copy of his book and follow him on Twitter at @JayHewittSpeaks.

*  It’s Iromans.  I checked.  

What's your Finish Line Vision? An interview with author @JayHewittSpeaks about his new book. Click To Tweet

Traveling with Diabetes

With the calendar about to tip us right into the holiday season, I wanted to share a few “traveling with diabetes recommendations,” since many of our fellow PWD will be braving the roads, seas, and skies to get home for the holidays.  (How many of you travel by boat to get home?  Any PPWD [pirate people with diabetes] reading here?)

On the road with a busted pancreas?  Here are some tips for traveling when you don’t make insulin:

Pack back-ups.  Wearing an insulin pump?  Bring a few more infusion set changes than you think you’ll need.  Have a long-acting insulin and fast-acting insulin pen in your carry-on, just in case your pump craps out.  I always keep a few syringes in my bag, too, on the off chance that I’ll need them.  And if I’m planning on being away for a week or more, I’ll bring an extra vial of insulin, in case I smash one on the bathroom floor.  (Rarely happens, especially since adding this protective cover to my arsenal.)

And bring extra underwear and socks.  Just because.

Keep a solid glucose supply.  With airport security different in every city and country, you never know when a juice box will be tossed as contraband.  Keep your glucose supplies non-liquid, if you can.  I keep jars of glucose tabs in my backpack and one of those raisin box 6-packs in my carry-on in case of lows.

Wear a medical alert ID.  A medical ID speaks for you when you can’t speak for yourself, and with the unpredictable nature of diabetes sometimes peaking during travel, it’s crucial to have your bases covered.  Wear something that says you have diabetes – a necklace, a bracelet, a temporary tattoo, a REAL tattoo … whatever can help someone help you if you need it.  And the medical alert jewelry available today is an upgrade compared to the crap we used to have to wear, so there’s that bonus.

Know where you are.  As someone with a useless sense of direction and an equally useless pancreas, resources that help with directions are key.  Whether I’m trying to get back to my hotel or am in need of the closest medical facility, the Here WeGo app has been really great while on the road.  You can download maps of the cities you’re visiting before you even get on the plane and the maps work in real-time and don’t require cell service/wifi to use while you’re out.

If you’re not a fan of smartphone technology, do some research ahead of travel to scope out the nearest medical resources.  Either method will arm you with important information, if you need it.

Have fun.  Hell yes have fun, because traveling with diabetes is completely and utterly doable.  And there is fun to be had, and stuff to SEE.  Whether you’re taking an afternoon to roll up on a mountain and hike that thing or jet-setting off to another country to take in the sights, planning properly makes diabetes less of a Thing and more just a carry-on.

Safe and happy travels!!

On the road with a busted pancreas? Here are some travel tips! Click To Tweet

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.

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.  

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.

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