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.
Why is Dad scratching at the door like a goofball? And why hasn’t he given up yet? I’m so tired!, I mused, finally rousing from bed.
My body moved through hypoglycemia-induced-quicksand as I turned the doorknob. Much to my surprise, Tootsie, our 12-year-old cat, was the actual visitor. This was not a prank from a human family member. In fact, this was not a drill. My blood sugar had been hovering quite low for an extended period of time. Tootsie knocked in her own way, and, thankfully, she snapped me out of a deep sleep to answer.
I gulped down some fruit juice from the ever-present nightstand bottle and crawled back into bed. Although I am allergic to Tootsie and she usually detests venturing to the second floor of my family’s home on Cape Cod, here she was- settling in to keep watch.
She knows. She knows I’m low!, I realized.
As a child, whenever I would wake up in the middle of the night plagued by nausea, I begged my mother to sleep at the foot of my bed. Don’t talk to me. Don’t touch me. Don’t do anything. But please just stay with me. Mom obliged and kept her guard post until I drifted back to sleep.
Tootsie got the same memo. Normally, she would be purring and climbing all over me; but she now understood that the best way one can support a friend during a hypoglycemic event is to simply be a present observer in the moment.
Continuous glucose monitors and mg/dL readings and Humalog are all foreign things to Tootsie. She may or may not have identified the low blood sugar scent that alert animals are trained to pick up. Whatever the problem may have been, Tootsie seemed to know that something was wrong. She persisted in her attempts to alert me to the issue. Tootsie did the right thing, and she stayed the course.
Perhaps the human side of healthcare can learn a thing or two from a cat’s display of empathy?
Food for thought… Pass the Meow Mix.
A few weeks ago, I attended some follow-up appointments at Mass General Hospital (MGH) in an effort to identify allergies that may be triggering an inflammatory response in my body. In other words, #JustSayNoToKetones, random fevers, crappy BGs, and the typical symptoms of a type 1 diabetic’s response to the dreaded “normal person sick” (NPS). A WordPress glitch is not allowing me to link to content tonight, but the background to my MGH visit can be found by searching for the blog post “Sleuthing” on verylightnosugar.com.
In April, a scratch test confirmed what we already knew. I am allergic to the following culprits. Do not let their pleading-innocent faces fool you in their mugshots!
’16 Bonnie & Clyde
Scratch test and shoe game
We scheduled more intensive allergy patch testing in June, in which potential household irritants are temporarily placed on the skin to elicit reactions and identify allergy triggers. I visited MGH on Tuesday, Thursday, and Friday, logging hundreds of miles on my car and refreshing my memory on just how difficult Boston traffic is in the summer. I averaged 2 hours on the way there and 3 hours on the way back to Rhode Island due to traffic.
On Tuesday, a nurse placed the patches on my back. She carefully explained each step in order to keep me calm and informed.
“Now I am going to clean the area… Now I am going to dry off the area… Now I am going to place the patch. It’s like a big sticker… Now I am going to secure the sites with tape… Now I am going to draw around the sites with marker so we can track the reactions and the locations… You may feel a little itchy… Do not get the sites wet or super sweaty… Try not to scratch so we can examine things clearly when you come in again… Call us with any problems…”
“That’s it? I’m free to go?!”
And off I went for 48 hours of fun.
I’ve always wanted to say that a crocodile, an alligator, a Great White Shark, a mountain lion, or a bear bit me. Seize the day, folks.
The sites were a little itchy, but nothing unbearable. In true diabetes form, my skin was more agitated by the medical tape than anything else. Eventually I could tell that a baseball cap and perfume overload were not going to cut it; I needed to wash my hair without getting my back wet.
The first attempt in the kitchen sink resulted in me inadvertently mopping the floor with my soaking wet hair. I moved on to the shower, my back carefully padded with towels and sweatshirts to avoid contact with water, which would jeopardize the test results. I craned my neck into the stream of water and scrubbed as best I could. The next day resulted in a “hat day” as well, my hair a total Punky Brewster disaster. Shout out to the Betes On Tap crew for sitting next to the smelly girl at happy hour. You are good for the soul. 🙂
On Thursday, I returned to MGH for the patch removal. A nurse gently peeled off the tape and then the patches, always cognizant of how much her patient was flinching in the background. The skin is understandably angry after all of that, so a 20-minute waiting period takes place before the sites are examined to allow the skin to cool down. One of my top ten favorite healthcare interactions of all time resulted:
“Try not to scratch, okay? I’ll be back soon.” -Nurse
*Frantically scratches back as nurse leaves the room*
20 minutes later:
Nurse, lifting patient’s shirt: “Did you scratch…?”
“No…..I mean, yes!” -Me
Now I know how Tootsie and Ace feel: guilty as charged.
Further examination revealed some irritation to certain patches. The nurse bid me farewell with strict instructions not to scratch at home.
On Friday, I met with the doctor. The skin irritation had quieted down at that point, and she did not believe that I was reacting to the patches we tested. Further testing of a wider range of patches was recommended. TBD what that will reveal… But at least I’ll know how to wash my hair better for the next time.
We also did a penicillin test, which involved scratch testing of the skin, shots, and eventual ingestion of penicillin. Being a healthcare nerd, I know that penicillin allergies are often misdiagnosed or that patients will outgrow the allergies, and I was hopeful that the one time I broke out in hives and ran to the bathroom every few hours while taking penicillin in college would be a fluke. It was. Your girl is free to take the antibiotic again, which is nice to know in case of any serious infections in the future. Now to update my MedicAlert bracelet! I will bask in the glory of removing a medical jewelry condition rather than adding one this time around!
I took everything in stride the week of the appointments, mostly because of the superb care I was so blessed to receive at MGH. The appointments ran on time; I was seen by an expert in the field; the nurses were considerate and thorough; the receptionists were friendly; a volunteer greeter walked me to the elevator I needed; just wow. From the moment I stepped foot in the main lobby at MGH, I was treated respectfully. I was not just a patient. I was a human being. Just like everyone else in the building. This is a welcome change from some of my experiences at other facilities, and I urge those clinics (you know who you are) to take a page out of MGH’s book. There is a reason why MGH is repeatedly numero uno.
The following week, exhaustion and burnout reared their ugly heads, and I was just… done. Done with diabetes, with healthcare, with publicly sharing my health story, with traffic, with pretty much everything. I wanted my privacy and my identity back- to not submit myself to one more needle poke or to being a patient incessantly pingpong-ing around the healthcare system. Alas, after lots of sleep and lots of time spent in good company, I can see the light more clearly this week. I am extremely fortunate to live near Boston and to receive topnotch care. It is okay to be tired. But I have to keep going, not allowing health woes to take over; rather, to know that I am trying. We all do this because we have to.
Goodnight. Don’t let the scratch tests bite.
*My condolences to those mourning the loss of friends and family members from the diabetic online community this week. I hope that this blog post provided some comic relief, but on a more serious note please know that you are all in my thoughts and prayers.