What’s in a name?

Many thanks to the talented Chris Snider for having me on the Just Talking Podcast this week.  We discussed everything from the #doc to mental health to #MedX to how we chose our respective website names.  Take a listen here!

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Bingo


DBlog Week topic #4 is in regards to the healthcare experience.  Yours truly could write a novella about this, but instead I will direct you to a few relevant posts.

For my healthcare rants and proposed solutions, please see here, here, and here.

Erin Gilmer’s “To All My Providers” is a must-read.

I am well-aware of the flaws of our healthcare system, having studied healthcare in grad school, worked in it, and lived it for 25 years as a type 1 diabetic.  But for some odd reason, I just don’t feel like complaining about those flaws tonight.  Instead, I want to share a vignette about the spirit of healthcare that I wish the system embodied more often.

In 2014, I took a summer elective called “Healthcare and the Older Citizen” as part of my Master’s program.  I don’t know if I can really relate to this stuff, I thought.  But the instructor was my favorite, and we got to tour nursing homes and elder care facilities all over the state of Rhode Island.  Wins all around.

The juxtaposition of two facilities has always stuck with me.  Early in the season, we toured a fancy nursing home which cost enough to afford college tuition and then some.  The food was topnotch, organic, and prepared by the best chefs in the state.  The amenities rivaled an episode of MTV Cribs.  The picturesque sunsets were the stuff dreams were made of.  By the end of the tour, my classmates and I were ready to pack our bags and move in!

The residents at Fancy Home were not particularly memorable.  Nothing bad happened, per se, but nothing great was happening, either.  They kept to themselves and spent their days dining on lobster and not talking much to their neighbors.

Later that summer, we visited a different location, a Church-run, low income assisted living facility.  This place looked like the storage shed of Fancy Home.  The cafeteria was reminiscent of my Catholic grammar school days- overcrowded and overheated.  The food was run-of-the-mill, easy mac-n-cheese or hotdogs with green beans.

But the residents at Church Home were different.  There was a noticeable pep in their step as they gave us the grand tour.  One woman opened up her apartment to our entire class, and as we crowded into the room she showed us a black-and-white photo of a relative who- despite the diagnosis of diabetes at a time predating blood glucose meters- had jetted off to explore the world.  There were no regrets in that decision.

Other residents told us about the Friday evening luaus and Saturday Bingo tournaments, and the happiness of spending one’s days winding down on earth in the company of the best friends you could ever hope to encounter.  Life was good.  Death was with dignity, surrounded by people who cared about you.  The Afterlife was even better.

My classmates and I graduated from that course with a newfound appreciation for humanity in healthcare.  We understood that no matter how much flashy technology a hospital has, or how much money is invested, you still cannot put a price on healthcare that emphasizes the “care” part.  Love, respect, and grace go a long way, and these characteristics are relatable to any walk of life, any generation, any healthcare facility.

In order to provide good quality of life, healthcare does not always require the bells and whistles.  Perhaps we have been looking in the wrong places all along.  The secret to living well has been right in front of us, on Saturday evenings, at the Bingo tournaments.

 

Milestones.

This week will be my final class before graduating with my Master’s degree at the end of December.  The saying about a weight being lifted is true.  As I handed in my final paper last week and my classmates hoorayed, happy to see one of their own crossing the finish line, I instantly felt relief.

Unless you live under a #doc Twitter rock, you know that I was on an emotional rollercoaster last week.  I second-guessed whether I would get my final paper done in time.  Mostly, though, that doubt was due to the anxiety of moving forward in life, of leaving behind the structure, love, and discipline that grad school has blessed me with over the past two years.

As much as I have complained about homework on the weekends, truth be told, I will miss the academic environment very much.  There is a definable purpose there, a working towards something greater than oneself, a joy of learning amongst peers and professors who are just as passionate about healthcare and making the world a better place.

Grad school becomes a part of one’s identity, and I am scared out of my mind to not cling to that role soon.  My go-to introduction spiel at cocktail parties has been, “I’m Ally.  I work fulltime at _____ and I go to grad school at night at _____ and have I mentioned how freakin’ busy I am all the darn time?!!”  As fulfilling as these different components of my life are, it is now time to put what I have learned to good use and to explore new opportunities- after taking a much-needed vacation.

My identity as a graduate student may be shifting, but I do not necessarily have to be lost.  Perhaps I have already been found, and that is what is so scary- those moments of truth where you reconcile who you are, with who you have been, with who you want to be.

Complicating such notions is the fact that today marks my one year shot-o-versary, or the anniversary of returning to a multiple daily injections regimen after a decade of insulin pumping.  I have beaten a dead horse over this, but in case you are new to Very Light, No Sugar: Insulin pumps are great.  Sadly, I experienced product defects with mine and watched my health slowly slip away as a result.  The pros of using injections for me, personally, outweighed the cons, so here I am.  Do what works for you.

My current apathy about the shots milestone surprises me.  In many ways I expected to be just as proud about the shots as I am about my impending Master’s.  But I’m just… not.  Shots are my new normal.  Some day that may change (diabetes cure, please!), but for now, this is what I am working with.

And to be honest, I think that apathy is a good thing.  It means that I have made peace with some of the previous bitterness, that I have chosen to chalk up the pump company’s ignoring of my email pleas as being due to an overloaded pump rep.’s inbox, even though I know in my heart that was never the case.

I now experience the freedom of insulin getting into my body every time I inject, and those #JerkFaces also known as ketones do not hang around much anymore.  I have proven to myself that I am stronger than I ever believed, and that it is good that we have many options in our diabetes management tool boxes.

Every day, I have access to life-sustaining medication, something I will never take for granted again.  Others are not as fortunate, and I am attuned to their suffering because my faulty insulin pump taught me what it feels like to lack insulin.  It is a brutal, desperate torment.  Only insulin can fix it.  And while I feel blessed to have escaped my insulin-delivery mishaps, I will always remember and pledge to help those who do not have access to insulin.

I recall emailing my doctors a week into our shots trial and implying, “Hey, I tried.  Time to call it quits and return to the pump?”  And I remember my dismay at their gentle urging to stick it out one more week, one more month.

Today- one more year- I am happy that I listened.  The difficult days are still here.  But the good days are back, too.  Any day not spent battling ketones on the couch is a day that I must be thankful for, and I am.  I just need to work on expressing that more often.

So here it goes:

I am thankful to have enjoyed the opportunity of receiving a graduate-level education.  During the days of my insulin pump saga, when the ketones were syrupy-thick in my blood and the couch was my home, grad school was the bright light that I could focus on.  I read and read and read and repeatedly told myself that one day I would feel better and have my degree.

Today, I am happy to be here to see that internal mantra come to fruition.  Thank you to everyone who has rooted for me along the way.  My gratitude is best expressed by leaving you with the prayer said on my long drive to Boston before difficult medical appointments:

“In every circumstance and in all things

I have learned the secret of being well fed

and of going hungry,

of living in abundance and of being in need.

I can do all things in Him who strengthens me.

Still, it was kind of you to share in my distress.”

-Phillipians 4:12-14

 

Drink your coffee and take this survey, please!

***Update: The survey is now closed. 

Thank you so much to everyone who participated and/or helped to spread the word!

Those 18 or older with diabetes of any type: Please consider participating in research for my current grad course by taking this 5-10 minute survey here:

https://www.surveymonkey.com/s/verylightnosugarsurvey

Thank you!!