Wishing you a Merry Christmas and Happy Holidays!
Thanks for hanging out with Very Light, No Sugar this year! See you in 2018!
Ally and Reese
Who Wore It Best? (Answer: Reese always wins!)
Hope Santa is good to you!
My beloved Guinea pig, Reese, came home from the pet store with the rodent version of “kennel cough.” We have been frequent fliers at the Vet as a result of this. Thankfully, our Vet’s office is a fun place to visit.
When I call to book appointments, the service is prompt and the availability accommodates my work schedule. When we arrive at the front desk, we are greeted with a warm welcome. There is not palpable tension in the waiting room. Rather, a few smiles are exchanged amongst the visiting patrons. Reese’s “white coat” anxiety is soon put at ease by the kindhearted Vet technician who spoils her favorite Guinea pig.
The Veterinarian’s examinations are thorough and careful to keep Reese as calm and comfortable as possible. The Vet never rushes me through my laundry list of talking points saved in my phone, similar to my notes for my own healthcare appointments. Instead, she actively listens and even expresses gratefulness that I have done my homework when it comes to raising a Guinea pig.
The cost of care is reasonable given the attentiveness and the results. I do not cry at the pick-up counter of the pharmacy, as I am not sticker-shocked, vulnerable, or frustrated. The pharmacist even adds extra banana flavor to make Reese’s medicine-taking process a little more bearable.
I received an email asking if I would like to sign up for an electronic health record (EHR) website, which will be personalized with Reese’s pertinent health information, photo, and Vet appointment schedule. Although I am on the fence as to how necessary it may be to exchange all of that personal information considering that we will (hopefully) only make annual check-up appointments, I so appreciate that the Vet EHR is a possibility for Reese if and when we want it. I cannot always say the same for my own human care.
^ The happy face of a creature who has easy access to empathetic care, and her own health information.
Whenever I visit a famous diabetes clinic affiliated with an even-more-famous Ivy League university medical center, the norm has become that it takes approximately six weeks to receive my lab results after the appointment. While I have bemoaned this publicly on Twitter, I do not do so simply to hear myself talk. This is not a unique situation to my healthcare experience, this clinic, nor other humans in the American healthcare system. The plague runs rampant. But is there really any excuse for it to keep spreading?
I am of the opinion that if said clinic’s nurse has poked the vein in my arm to draw blood, if I have lost my dignity by peeing in a cup and then holding it up to the light to squint– praying that somehow whatever is in that cup will be as okay as healthy-looking-urine can be!–, then I have earned the right to access my own medical information in a timely, effective fashion. It is my data. Who, what, when, where, why, and how I share it should be up to me, in an ideal world.
When said clinic advertises its new and improved EHR for years, only to continue solely updating occasional appointment reminders while the highly-acclaimed EHR remains devoid of labs and notes, something’s gotta give. If this is happening in the “Mecca of healthcare,” where the biggest and the best EHR companies and universities spread their wings, how on earth can we expect the continuum of care and the quality that we know we are capable of achieving to improve healthcare?
This is not anyone’s fault in particular. We have a healthcare system that remains convoluted and disjointed, no matter which political party attempts to restructure it. We must ensure the utmost privacy while simultaneously allowing data to be useful and accessible- not an easy feat by any means, especially with hundreds of entities vying for this business.
My healthcare provider’s ultimate responsibility is to care for her patients. If we are asking her to become an IT wizard on the side, we are asking her to make sacrifices elsewhere; ultimately, those sacrifices will come in the form of time lost treating patients with a high-quality level of care, which is contrary to what any good doctor stands for.
On the administrative side, more training needs to occur to ensure a smooth transition of care and patient data. There will always be bumps in the technological road, but we cannot overlook commonsense. For example, when a patient has blood drawn, either mail the labs shortly thereafter (in and of itself an archaic method of communication considering privacy and efficiency), or, use the #$%^*&@ patient portal to the best of its ability- to provide patients with the information they need to be informed and engaged in their health condition management. Contrary to what the insurance industry may imply, we cannot scapegoat outcomes on patients and providers since we only provide rusty tools in their toolboxes.
“THESE ARE MY KIDNEYS! I want to know- good or bad!” I dramatically proclaimed to my doctor when I finally got fed up enough to send an email requesting overdue lab results, circumventing the clinic and going directly to a source who cares enough to help. (Everything is fine, but it’s the principle of the matter. If things were not fine, we want to proactively take action as soon as possible. Lab results that are MIA for 6 weeks are a missed opportunity to intervene, and if we add up the totality of those missed opportunities and multiply it by the totality of the patients affected and the totality of the healthcare providers and admin. executives unnecessarily getting burnt out because we make this process unnecessarily harder than it was ever intended to be, well, you get the picture!!!)
My doctor answered my email pleas late at night on her day off, showing me she wants to make this situation with the clinic better for her patients. She gets it, agreeing wholeheartedly that we need quick access to my health information in order to form the best game plan for treatment. Much like Reese’s Vet, she listened and allowed me to express everything that I needed to.
The only way things are going to get better is if we continue to voice these issues and work together. I believe strongly that clinics should hire firsthand patient consultants to come in and advise. They offer expertise that cannot be seen without the lived experience, and their hearts are in the right place to make improvements for everyone who will come after them. Many have professional and graduate level education experience in the healthcare field, further enhancing their value to this discussion.
Such constructive feedback can be a path that makes all healthcare players happy. Costs may decline, quality may increase, outcomes may be better, human beings may spend more time living and less time surviving– and all from simple tweaks that do not require much investment aside from simply listening to those who are fighting for their health every day, and being open to changing accordingly.
Hey, humans! Let’s get on the same wavelength as veterinary care, in which we hone in on empathy, communication, topnotch organization in our administrative duties, and a healthcare team that works together with living, breathing creatures of all backgrounds. So, what do you say?
I don’t really like this picture
the Medusa hair
the empty, searching eyes
behind the mask of a smile.
“Emotional support” animals exist
because “emotional support” humans
with their words.
That unspoken empathy
sometimes best fulfilled
by a creature
than two pounds.
“Can you bring me my baby?”
I’d asked my mother
wasn’t sugar free
Unfairly pushing the blame
of an insidious condition
in the exact ignorant manner
I have grown to detest
in the abundantly phony
“Tame Your Diabetes!” articles.
My vision blurry
I already knew the number
was 400+ and climbing
without having to look
at the faded screen
of an overused machine
supposedly meant to sustain life
while the cure lingers
just out of reach.
“Can you bring me my baby?”
I’m currently reading four books at once and composing just as many blog posts in my head. My golden rule of blogging is when the words flow, ride that wave. But if writing ever feels forced, it is time to take a step back and regroup.
Owning the occasional frustrations of the writing process can be just as important as what is eventually said. The right words will come along. They always do. Isn’t that why God created coffee?!
Here’s a photo of a cute Guinea pig to tide us over until May.
25 years on a Lilly medal + 1 test strip representing another year = 26th diaversary
Last year I had many words, and blog followers reported that they kept Kleenex in business while reading.
This year, only a few terms come to mind:
Anger. Insulin. #weneedacure. Emotional Health.
If diabetes takes a backseat in life, it is not for lack of trying. Rather, it is for resetting and rising again.
Reese has taught me to appreciate the simple joys of reliability, and love.
Here’s to more +1’s.
Reese and I wish you a Merry Christmas, Happy Holidays, and a wonderful year to come. Thank you for reading Very Light, No Sugar this year. We’ll see you in 2017!
Reese loves her new chew toy from Santa!
I first fell in love with memoir as a junior in high school during a course aptly titled Rewriting A Life. There, I was introduced to the work of Mary Karr, and to this day I soak up her words like a sponge absorbs a misplaced glass of cabernet: fully, and scattering droplets where they are most needed (the only clean part of the carpet, for example).
Here’s a droplet:
When you’ve been hurt enough as a kid (maybe at any age), it’s like you have a trick knee. Most of your life, you can function like an adult, but add in the right portions of sleeplessness and stress and grief, and the hurt, defeated self can bloom into place.
That’s sort of how I feel lately. The perfect storm of life stressors- past, present, and future- has left me questioning my moral successes and failures, my worthiness as an advocate, and where to go from here. The answer is that there is no black or white response- only more questions, and more places to go. The best work I can do at the moment is simply to voice this.
I am angry that our fellow people with diabetes are dying because insulin is inaccessible and ludicrously expensive. I am angry that the people who can afford insulin- myself included- are under the constant pressure of maintaining positive disease outcomes with rusty toolboxes. I am angry that we do not have a cure. I am angry that we are so fragmented as a community, that when we voice dissent we are quickly hushed by the status quo of comfortableness and the diabetes industry- luxuries that so many others do not have. Finally, I am angry that I am angry, that I have scapegoated much of my anger on diabetes, and that I have not always handled life’s difficulties with the grace and dignity that I know dwell within my heart.
However, I am grateful that despite the bad stuff, there are friends and supporters who still believe in the good stuff. Their love has never wavered, and has inflated into a life raft when needed most. (Thank you).
Rewriting A Life does not mean you get to copy and paste a Cinderella ending to your story. You simply get to live it, and to describe the good and the bad in detail that has the potential to resonate with someone else who desperately needs to hear you. Perhaps you desperately need to be heard, too.
Recently, emotional and physical health have felt like running on the hamster wheel while nursing a sprained ankle and a hangover.
So, I switched things up and adopted a guinea pig.
This is Reese. She is colored like a Reese’s cup.
She is currently petrified of me, but I hope the same thing that I hope for you, or me, or any living creature: that she feels loved nonetheless.