The Barter Games

Diabetes is kind of like betting on the horse with the most eccentric name at the Preakness.  I have a good feeling about that newbie, Langerhans, this year!  Make sure you bolus for Seabiscuit!

We’re placing wagers on our health with each best “guestimate” insulin dose that we take.  Every. day. until. we. are. cured.

“I’d rather hold a spider in the palm of my hand than take ___ units of insulin!” I proclaimed to my doctor recently.  Have I mentioned that spiders are THE. WORST.?

I barter with myself, too.  Take one more bite of the sandwich, Ally, and then shoot that Humalog into your stomach.  Too sore today?  Okay, which arm is the least bruised? 

Take the damn insulin!!!  Wait- is the sandwich 35 carbs, or 43.376?  Bolus half a unit more?  Oh, look, a butterfly!

IF you just go to the Endo and get the blood drawn now, THEN you will at least have answers- a springboard from which to make a treatment plan.  IF you do not go, THEN you will lack the guidance on where to begin.  GO. GO. GO.

My favorite teacher from high school lost her (adult) son in a tragic accident.  The pain was still raw many years later when I met her, and her writing took that pain and beautifully chronicled the human side of grief.  She once waded into the ocean and begged God to take her life instead, crawling back to the shore only when it became obvious that it was not her time to go.

“Take me instead of him.”  Either / or.  If / then.  Decisions, decisions.

If you do not replace the wonky CGM sensor before class, then you will have to go without that data for the next few hours.

I promise I’ll be good this week.  I’ll be brave when I bolus.  Just please don’t make this insertion hurt like the last time.

Eyes closed, driver’s seat, grocery store parking lot before grad class.

Please don’t hurt, please don’t hurt, please don’t hurt, please don’t hurt. 

Sensor is in.

It hurt.

My classmates have no idea why I was 3 minutes late.

If they ask, I’ll make them bet on the answer.

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The Liars’ Club, Catholic Grammar School Vignette Edition.

“You write like a chicken!  The nuns didn’t teach you any better than that?”  one of my many “Work Moms” asked.

In my defense, I should’ve been a lefty.  But I did get off easy with the nuns of Catholic “grammar” school compared to my Work Moms’ tales of the ruler cracking their knuckles for poor penmanship.

In “grammar” school, they taught us grammar.  My math, science, and arts skills are lacking to this day.

Reflecting on our Catholic grade school lessons recently, I confessed to one Work Mom that I was, in fact, a member of the first grade Liars’ Club.  Granted, I’m no Mary Karr, although that would be pretty darn cool.

It was Christmastime, and we celebrated with the appropriate holiday page in our first grade coloring books.  The scene was that of a Christmas tree decorated with big, shiny ornaments and a gold star on top.

“Are you done?” Sister Catherine* asked.

*Name changed because I still fear her wrath to this day.

The body of the tree had yet to be filled in with the evergreen colored pencil.  But I’m done coloring the ornaments, I thought.

“Yes!” I replied.

Sister Catherine’s eyes widened in fury.

“Liar!” she screamed.

You didn’t let me finish, I thought.

“God doesn’t like liars!  Shame on you!” she continued.

I blinked back tears and repeated my internal mantra, Do. not. cry.  I had simply misunderstood her.  In hindsight, I suspect that my blood sugar was low.  The fuzzy feeling where it all makes sense in your own head, but makes-no-sense-in-anyone-else’s-head-and-you-know-it, was definitely present.

This week, decades removed from the grammar school incident, I found myself in a similar predicament.  Words made sense in my head, but I needed to get them out into the air in order to breathe easier.

I took a sip of my iced coffee, exhaled, and looked my endocrinologist in the eye.  Do. not. lie.  And Do. not. cry. while you’re at it, I reminded myself.

“I don’t eat enough carbs.  I’m way better than I used to be, but I need more.  That’s part of the ketones problem,” I admitted.

Endo didn’t call me a liar.  She didn’t bristle at the words that made sense in my head, and now made sense out in the open, too.  Instead, she nodded and we immediately jumped into troubleshooting mode, discussing target carb-consumption goals and more.

I don’t eat enough carbs because my blood sugars do better on a low-carb regimen.  But perhaps I have veered too low-carb at times, so my body burns fat for fuel.  Hence, ketones.  Hence, dangerous.  Hence, this problem must be solved so I can live a full, enjoyable, healthy life. 

I also don’t eat enough carbs because I just plain couldn’t trust my defective insulin pump products to deliver the insulin to cover those carbs in the past.  Anxiety.  Mentally, it was easier to go low-carb than to deal with the sky-high values when the pump failed as often as it did.  This snowballed into a sticky situation, the residuals of which I am still trying to shake free from my mind.  Just because I am injecting insulin now does not necessarily mean that my brain feels any differently about carbs or insulin.  Only time, prayer, and hard work will tell.

^ All of this was understood and accepted, a starting point of honesty from which to move forward.

“Do you still talk to Dr. X?” Endo asked.

“Yes,” I replied.

A few days later, I went to see Dr. X.   I wasn’t happy with what I had to tell her about carbs- that this was a bigger issue than I had perhaps thought that it was.

But I didn’t lie.

***

“The truth will set you free.” -John 8:32

A 1 c.

My A1c was lower at my recent endo appointment.  Not by any earthshattering amount (and we still have a long way to go), but “lower” is enough for me right now.  In fact, my recent A1c was lower on a shots regimen than it had sometimes been while using an insulin pump.

I thought I’d write some overly-emotional, 2000-word essay on how much the lower A1c means to me being back on shots.  Instead, I’ll take my lack of wordiness as being one step closer to making peace with what happened to me and as a reminder to continue to advocate for others who need insulin.

Frankly, I am still bitter about how much I suffered due to defective insulin pump products.  A few tech glitches per year are understandable, as tech does not equate to properly-functioning islet cells by any means, nor should it pretend to do so.  But to have bi-weekly episodes of near-DKA due to tech issues is inexcusable.  It breaks my heart to think of other people out there who may be going through what I went through, who simply want someone to believe them and to make it all better.

Thankfully, through the support of the #doc and some topnotch doctors and nurses, I am still here, I feel alive again, and I am getting into a better diabetes groove on multiple daily injections.  The bruises are a visible reminder that diabetes does not go away no matter which treatment one pursues, but for me they are a small price to pay for the assurance that insulin gets into my body every day.

I’ve said it before and I’ll say it again: do what works for you, whether that be insulin pumping or injecting or artificial pancreas-ing or Afrezza-inhaling.  I just want all of us to feel good every day.  But I also want those who experience tech problems to know that they are not crazy or “bad” diabetics.  We are human beings; technology is technology; and, ultimately, #weneedacure. 

But what about the people who don’t have a plethora of options?  Having spent many days in bed with ketones when my insulin pump malfunctioned, I often find my thoughts traveling to Spare a Rose nowadays.  I will never take insulin for granted again.  When insulin was not getting into my body, I was like a fish out of water, slowly and painfully fading away.  Kids without insulin suffer like that each day.

We must work hard to improve their access to life-sustaining insulin. 

Diabetes is difficult enough to tame with insulin, never mind without it. 

The Dunkin’ Donuts Vignette

“I’ll take a small hot coffee, very light, no sugar,” my father said to the bored high school aged employee.

“And a lemon donut, too,” he almost whispered, hoping my four-year-old, newly-diagnosed-with-type-one-diabetes self would not notice the snack he was sneaking home.

“You want a plain donut?” he squatted down to ask.

With wide eyes, I scanned the row of baked goods in front of us.  Jelly, strawberry frosted, sprinkles- all of the things that even my young mind comprehended as off-limits.

“I want a chocolate one,” I said.  No harm in trying.

“No chocolate.  You can have a plain donut, okay?” Dad offered in a tone that feigned the appeal of a donut whose very name was inherently boring.

“I don’t care,” I replied calmly, the first of many times this phrase would be uttered mostly to convince myself that diabetes did not hurt me, but also to protect those who loved me from seeing that it did.

“Ha!  You can have a plain one!” laughed a stocky truck driver in line behind us.

Dad hadn’t heard him.  I buried my face into his leg while he paid for our order.

My lip quivered on the car ride home.

“What’s wrong?” Dad asked.

“A man in there teased me about the plain donut!” I screeched.

“What?!!  Who does he think he is?  You just remember- your Dad is the strongest man in the world.  Nobody will ever mess with you!” my father advised.

I chose to believe Dad over the late-1980s version of what we now call a “diabully.”

And the plain donut wasn’t that bad, either.

IMG_0941-0

Your Grandma’s Diabetes Vignette

“My grandmother died of diabetes,” my ‘boyfriend,’ Jake, mentioned offhandedly as we climbed rocks in the woods behind his home.

We were in fifth grade, and the act of dating consisted of parentally-supervised playdates a few times each month and the added privilege of swapping prince and princess Disney-themed Valentine’s Day cards in February.

“No she didn’t,” I retorted.

“Yes she did.  She got really sick.  I don’t think she had to take shots like you.  But the doctors said she died of diabetes.”

“People don’t die from diabetes.  It must have been something else,” I replied, shaking my head as if to dispel the prospect.

The thought had never really crossed my mind before.  I knew low blood sugar left me pale and shaking on the floor.  But did people actually die from this stuff?  I pushed the notion to the anxiety cupboard of my mind, a place from which I often plucked a topic to pester my mother about on the car rides home from school.

“Do people die of diabetes, Mom?”

“I don’t think that’s something you have to worry about,” was along the lines of her response- a well-played verse which straddled the line of truth just enough to shield me from the painful reality of the answer.

I packed the concept of death via diabetes back into the anxiety cupboard of my mind and closed the door tightly.  Why had he said it if it wasn’t true, though? 

Today I realize that Jake simply wanted his grandmother’s story to be heard, especially by someone who understood firsthand the turmoil of the disease that took his grandma away from Christmas mornings with her grandchildren far too soon.

If I ever walked into a bar now and happened to find Jake swigging from a frosty mug, I’d tap him on the shoulder and tell him that his grandma’s diabetes is different from my diabetes, which is different from your diabetes, which is different from Ryan Reed’s diabetes.

Then I would buy him a beer, apologize for his loss, and sit down and listen to his story.

After #MedX: The Big and The Little

A few weeks before attending Stanford Medicine X (#MedX) 2015, I wrote down my thoughts about life in the “Before #MedX” stage.  I knew that this experience would be life-changing, inspiring, and empowering, but if I multiplied those factors by a billion, I still would have underestimated just how powerful the #MedX experience was for those of us who were so blessed to be there.

We talk and tweet a lot about the big moments at #MedX: when Cyrena Gawuga brought the crowd to our feet during her Ignite! talk, which chronicled her personal growth in the face of what previously seemed like a failure; when Abby Norman carried us through the whole spectrum of feelings- from hysterical laughter at her wit and humor to blinking back tears in awe of her journey to get properly-diagnosed with endometriosis and appendicitis; when Julie Flygare illustrated that anything is possible despite narcolepsy; when we marveled at the strength and determination of Emily Kramer-Golinkoff, who is improving the lives of those with cystic fibrosis as they race against time (side note: I was totally “fangirling!”); or when Ben Bahan taught us that he can communicate and listen (and do so with a sense of humor that rivals Amy Schumer’s!) despite being deaf.

MedX stage

All of those moments were just- Wow.  My fingers couldn’t tweet the powerful one-liners fast enough.  Every sentence spoken was just that darn spellbinding.

As much as #MedX completely renews your sense of purpose and advocacy with the big headliner stories, it also reinforces those concepts in the little, behind-the-scenes moments.

I received support from #MedX before I even stepped foot on the Stanford campus.  When a good friend’s child was diagnosed with a serious condition recently, I sought advice on what to say and what not to say (from a 2015 ePatient who I will not name here to respect my friend’s privacy; ePatient, you know who you are- thank you).  The #MedX advisory board and administrative staff made sure that all of the i’s were dotted and the t’s were crossed to ensure a pleasant experience for conference attendees.  #MedX alums were always available to yield my rookie questions at all hours of the night.  At the ePatient dinner, our hearts overflowed with compassion and respect for one another.  The list of human goodwill goes on and on when it comes to Medicine X.

From a diabetic online community (#doc) standpoint, I enjoyed talking about the highs and the lows with Chris Snider, Amy Tenderich of Diabetes Mine, Sophie Thacher, Meredith Hurston, and Dana Lewis- who carried her (artificial) pancreas in her purse, which automatically ranks her pretty darn high in my book of praise!  It was refreshing for me to be around people who understood without me having to really say anything, who could swap campfire tales of funny diabetes moments, and who were so passionate about our #doc advocacy endeavors.

The #MedX workshops were particularly informative and interactive.  Dr. Bonnie Feldman enthralled us with her autoimmune disease research, and we pledged to keep in touch and work hard to crack the autoimmune code as a community.  My good friend and fellow ePatient, Danielle Edges, held a workshop on eHealth in pediatrics, which featured her family’s brave story of caring for a daughter with a congenital heart defect called heterotaxy and another daughter who is secondarily impacted by having a sibling with a chronic condition.  It was so uplifting to witness this Mom, who would go to the ends of the earth to help her family, whose humor remained intact in the face of challenging circumstances, and whose loyalty and friendship is beyond measure.

#MedX is renowned for bringing together the various participants in the realm of healthcare.  We hear the term “Big Pharma” thrown around quite often online.  But I can assure you that the pharmaceutical representation at #MedX was laser-focused on getting the little details right and connecting with the patients whom they serve.  I was asked, “What can we do for you?  What message do you want us to hear from your patient perspective?”  I was so humbled by their willingness to listen and their desire to drive innovation.

There were also the little moments at the Sheraton pool, where ePatients and other #MedX attendees dined after the day of conference events concluded.  Nisha Pradhan’s passions for advancing anosmia research and providing an empathetic medical experience were contagious.  Britta Bloomquist taught me about life in northern Minnesota and juggling Lyme disease and ankylosing spondylitis.  Kristin Coppens was an example of grace and determination while managing multiple chronic conditions.

Natalie Abbott and her service dog, Cassius, educated us on Moebius syndrome, a rare disease only diagnosed in 1,000 patients thus far.  Natalie and Cassius were the epitome of a good team; they worked together seamlessly, never complaining.  I gained perspective that I must admit I very much needed by watching Natalie and Cassius together: Moebius syndrome is a passenger along for the ride in Natalie’s very-accomplished life, not the other way around.  We can apply that same lesson to every sort of adversity in life.  Thank you for inspiring me so much, Natalie and Cassius!

There are so many other big and little moments from #MedX which I would love to highlight, but the truth is that I could write a novella about how great each individual who attended is.  I would like those reading this blog to know that #MedX is a phenomenal experience because of the positive, enthusiastic, dare-to-dream-big nature of its attendees.  We are without a doubt going to change healthcare for the better.  Heck, we already have, and we’re just getting started.

The best way to summarize what #MedX means to me is to leave you with a story.  (We really like stories at #MedX!):

I woke up having some concerning diabetes issues on the first day of my #MedX experience, the pre-conference Healthcare Innovation Summit event.  To be honest, I felt quite ill.  My mother convinced me to take the shuttle to the conference location.  There would be plenty of healthcare geniuses around if I needed assistance, she advised.  How very, very true.

As the day went on and I took many insulin injections, my diabetes situation began to improve.  The group disbanded for an afternoon coffee break, and I walked to a bench in the shade of the Stanford campus.  Eventually, a professionally-clad woman sat down on the neighboring bench.

“This shade is so welcome,” she noted.

“Absolutely, and it’s nice and quiet here- a good opportunity to take a breather,” I replied.

And so we chatted.  She was at #MedX representing her healthcare company’s new technological product.  Her excitement for the tech’s potential to improve lives was palpable, and it was clear she loved her work.

“Can you explain to me what an ePatient is?” she asked.

“We’re all here to advocate for our respective causes.  We believe wholeheartedly in improving healthcare, in humanizing the story.”

“Is diabetes… hard?  As in, does it impact you a lot?” she asked tentatively.

“Sometimes…,” I admitted.  “We fight hard for our health every day.  But we believe in a brighter future.  Isn’t that why we’re all here to begin with?”

And with that we walked back towards the conference hall, two people on different sides of the healthcare equation, united by a common ambition to help others.

That’s what #MedX is all about.  It was my greatest honor to attend this year, and I would like to sincerely thank everyone at Medicine X for sharing their perspectives.  Keep doing big (and meaningful little) things.

Disclosure: I attended #MedX on a partial scholarship as an ePatient delegate.  Opinions expressed here are strictly my own.

     Zoe Chu                         MedX sign

^ With the world-famous #MedX mascot, Zoe Chu!                ^ Excited for #MedX!