Coffee Date # 4: Coffeehouse Style

The most recent of Very Light, No Sugar’s Coffee Dates series took me to diabetes camp at Lions Camp Merrick in Maryland with Lilly Diabetes, performing artist Crystal Bowersox, and her awesome crew.  This particular “Coffee Date” was more of a marathon “Coffeehouse” of sorts, as it included a live music performance from Crystal Bowersox, as well as a busy day packed with camp activities.

Before we dive into the recap of our day, I want to thank Lilly for having me. Additionally, many thanks to Crystal for letting me tag along and learn more about her.  

Regrettably, I did not get to attend diabetes camp as a child.  Decades later, I finally got to experience camp for the first time during our trip to Lions Camp Merrick, and I left feeling inspired and reinvigorated by the spirit of everyone there.  Thank you!

My disclosures for this experience are the following: I accepted Lilly’s invitation to attend camp with Crystal Bowersox.  Lilly paid for my travel, hotel, and meals.  Opinions expressed are my own.

*****

We arrived at Lions Camp Merrick, where a camera crew was ready to document Crystal’s camp experience (see here for a video snapshot of the day).  Our first stop was the arts and crafts room, where we made slime!  The campers were thrilled to see American Idol 2010 runner-up and person with diabetes Crystal Bowersox, who gracefully yielded questions from everyone.  We each took turns in the slime-making process- stirring up the various ingredients, such as glue and food coloring.

Upon learning that I had diabetes, too, one camper proclaimed, “When I grow up, I want to be a biochemist so I can cure type 1 diabetes!”

That quote embodies the spirit of each camper we met: These kids deal with a lot at a young age, but they remain enthusiastic and engaged in the world around them.  Camp is a place to relax, hang out with friends who “get it,” dream big, and just be a kid.

Another camp attendee was there for “Siblings’ Week,” in which the siblings of kids with diabetes can also go to camp.  For psychosocial reasons, I love that such integrated supports exist for all members of the family.

Up next, we went to the obstacle course / climbing wall area, where Crystal and her tour manager and band member, Derick, were the first brave souls to scale the wall, taking diabetes and exercise to a whole new level- literally!

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At lunchtime, the camp staff helped the campers to calculate carbs and best-guesstimate boluses.  Diabetes is unique to each individual, and it can be especially tricky when the exercise and adrenaline of camp are thrown into the picture.  My hat is off to the camp counselors, who oversaw all of the campers and handled any blood sugar bumps in the road with confidence, expertise, and poise.

After lunch we all gathered in a conference hall to watch Crystal’s live performance.  She absolutely rocked it with “A Broken Wing” from her latest album, Alive.  The chorus from this song, “even the bird with the broken wing sings from the ground,” is so reminiscent of life with type 1 diabetes.  Even on the difficult days, our resilience allows us to rise again.  (Sidenote: The entire Alive album is teeming with creative lyrics, Crystal’s signature vocals, and live-recorded music.  I highly recommend cranking the volume up and belting out some tunes while driving down the freeway.)

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The audience was well-prepared for the question-and-answer (Q & A) session following Crystal’s performance.  Some highlights [paraphrased] include:

 

Q: Do you like turtles?

A: Yes!

 

Q: Do you like hamsters?

A: Yes!

 

Q: What was your A1c during your DKA [diabetic ketoacidosis] experience while filming American Idol?

A: [paraphrased] A1c at the time was decent.  DKA has more to do with the immediate need for insulin in the body than the 3-month average blood glucose portrayed by the A1c result.  The experience taught Crystal that in order to feel her best and enjoy what she loves (performing), she has to prioritize managing her diabetes.

 

Q:  Would you change anything about your time on American Idol?

A:  [paraphrased]  There is so much to be thankful for, stemming from Crystal’s American Idol experience, that she would not change a thing.  Crystal now gets to do what she loves every day, including touring diabetes camps as a Lilly Ambassador this summer and meeting so many great people along the way.

 

While observing Crystal’s performance, I noticed a few campers with the pale, shaky “hypoglycemia look” that I know all-too-well myself.  They approached the camp counselors to inform them of the situation, checked their blood sugar, and were handed small cups of juice or glucose tablets to treat the low blood sugars. This was all done calmly and in a composed fashion.  Low blood sugar can be serious, which is why it was treated promptly.  The vibe given off at camp was that the highs and lows were something we could deal with and then get on with our day, just another example of why camp can be so empowering.

After the Q&A session, Crystal then individually met with each camper to sign autograph cards, take photos, and chat some more.  This clearly meant so much to the kids; how cool to have their unique special moment with their role model!  I will always respect Crystal for the time she took to connect with each person there.

Behind the scenes, I learned what helps camp to run so smoothly: A camp employee expressed his sincerest gratitude to Lilly for supplying the insulin at camp.  Lilly also provides Camp Care Packages, as well as scholarships.  Camp has been illustrated to have a positive impact on attendees, as highlighted here.

As the camp and Crystal Bowersox prove, you can still have fun and enjoy success despite diabetes.  We are equipped to handle whatever diabetes throws at us, and peer support, like that found at camp, is invaluable.  Many thanks again to Lilly, Crystal Bowersox and her crew, and Lions Camp Merrick for a wonderful day.

Keep rocking on!

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Photo source: Lilly Diabetes

 

 

The Cure

The Cure is the go-to daydream

What we tell ourselves while entwined

in the arms of a lover in a Queen size bed

to calm the “what ifs” circulating in the quiet

 

If we keep calling its name

The Cure The Cure

maybe one day it will hear us

 
If my future hypothetical grandchildren

were to roll their eyes at the thousandth telling

of The Cure story around the campfire

I’d die happy, for they’d only known a better world.

 

 

No Rules Poetry

Portrait of a Millennial Stuck in an Elevator

Doors open.

Push the buttons.

Doors close.

The levers shift with

the weight of it all.

Floor 5, please.

 

Today, it’s Floor Three-and-a-half

stuck somewhere in-between

the black and white, the grey.

 

“Millennials don’t dooo anything!

the Baby Boomer grad classmate

bemoans, while the Professor raises his

eyebrows at us. “Well?”

Outnumbered, we respond

internally.

 

I can only speak for myself

but I will go to bed hungry again tonight. 

Thirst for knowledge is louder than 

the grumbling.

 
A classmate: My family immigrated here. Our 

home is thousands of miles away. Our friends

will never see the inside of this classroom

this avenue they call Freedom. So I’m here. 

 
Portrait of a Millennial who forgot her

purse, who is now stuck in an elevator.

We won’t call it a broken elevator

because it may well rise again,

and we should give it that chance.

 

The purse not in the elevator

holds insulin syringes,

juice in case of

hypoglycemia,

water, notecards,

and responsibilities.

 

Being stuck in an elevator with

type 1 diabetes and no purse

is what anxiety spends your entire life

training you for:

finding a way out when all is lost

in a corn field maze of ridiculousness.

 

PUSH TO CALL

IN CASE OF EMERGENCY!

You push, it calls.

Ringing. No one is home

on the other side. Please

leave a message.

 

You drop to the floor and pray

You pound at the doors but they

are walled shut. Without insulin

life bleeds you dry within hours.

Open the doors! Dooo anything. 

 

This won’t be the first time,

nor the last, when your back is

against the wall.


We’re at Floor Three-and-a-half

There’s still time

We’re just getting started

We’re almost there

 

 

 

No Rules Poetry

On Advocacy

Life has been chaotic this year, and my own versions of advocacy have gone along for the up-and-down merry-go-round ride.  I still want to blog about the insulin access workshop from April.  Yes, April.  (Insert disclosure that Lilly paid for my travel, hotel, and meals).  There is so much to say and so little time to beat a figurative dead horse (which died from lack of insulin, in this figurative example).  Yet I will express it at some point, because 1) I promised our community that I would, and 2) I am still wowed by my peers and those with big hearts who are dedicated to improving life with diabetes; these big hearts come in all shapes and sizes in healthcare; the workshop reinforced that idea for me.

There have been other exciting opportunities, too, and the blog posts have been drafted and re-drafted in my head for a long time now.  I believe mentioning these feelings here is advocacy in and of itself.  Sometimes this part of the merry-go-round of life simply is what it is.  Advocacy can wax and wane and broaden and refocus as life dictates.

Reading and watching and writing poetry have encompassed a different avenue of creative expression for me.  Poetry is freedom.  Just go.  It’s funny where and when the roots of an English major choose to spring up.  I’m just happy to be writing in some capacity.

At a recent event with close friends and their families, one ventured to ask about diabetes advocacy.  To respect privacy in this story, let’s call her Friend.  Friend’s relative (let’s call her Relative) has dealt with type 1 diabetes for a large number of years.  Diabetes remains difficult despite the gadgets and gizmos of 2017; I cannot imagine how tough it was way back in the day.  Relative has faced her fair share of adversity in this life.

Friend’s daughter (let’s call her Daughter) explained, “Ally does a lot of diabetes advocacy work, and it’s really cool.”  That statement shocked me back to reality, in a good way.  Someone out there, aside from #DOC folks, actually cares about this!  

I mean, I know people care. But it was refreshing to hear this outside of #DOC-land. There are people who look to our examples of advocacy and find hope. How humbling and, indeed, cool.

Friend was visibly excited to talk to me, and, likewise, I was inspired by her openness and respect for our community.  Another round of drinks later, and there we still stood, steadfast in our shared mission.

“Why isn’t there a cure yet?” reverberated in our ears.

I have asked myself, God, and anyone who will listen that very question in the long 26 years since my type 1 diabetes diagnosis.  To have someone else inquire the same of me was a long time coming.  Not that anyone is to blame, per se.  We all want a better world, one in which diabetes is buried with the dinosaur fossils.

But truly, why isn’t there a cure?  We have the brain power.  We have the amazing labs working steadfastly to help us.  We see the faces of loved ones who represent why #weneedacure.  My two cents are that we remain fragmented in an already-divisive society.  We need to rally together and maintain hope that one day a cure will come.  We are good eggs with sometimes-different goals, and that is okay.  But our goals should center on paving the way for a better world- whether with diabetes, or (hopefully) without it.  My response to Friend was something along those lines.

“Why are people dying because insulin is not affordable and accessible- not just abroad, but here in the United States, too?”

We discussed the name Shane Patrick Boyle.  Keep saying his name.  We talked about how diabetes advocacy is moving the dial on this issue, but we cannot rest yet.  This disease is absolutely relentless.  We have to keep showing that.

Friend and I left the event table knowing that we both still had seats at it.  There is work to be done.  Engagement in advocacy is fluid; such is life.  But sometimes it takes seeing the other people affected by our work to know that we are advocating beyond ourselves.  That is why we started this in the first place, and that is ultimately how we will finish it- together.

Thank you to Friend, Daughter, and Relative for reminding me why we do what we do, and for your loving support.

 

 

My Dog, Skip, Probably Has Better Healthcare Than 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?

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Medusa

 

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

sometimes falter

with their words.

That unspoken empathy

sometimes best fulfilled

by a creature

weighing less

than two pounds.

 
“Can you bring me my baby?”

I’d asked my mother

“Birthday cake

wasn’t sugar free

after all”

I’d sighed.

 

Unfairly pushing the blame

of an insidious condition

onto another

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?”

 

 

No Rules Poetry

Rx straddles the ledge

Rx straddles the ledge

of the countertop

His hand shakes as he reaches

Rx drops

He screams

as the glass splinters

all over the floor

and into his foot

the droplets of life

now mingled in with the dirt

from inside and out

holes punched in the wall

of the kitchen

where he can no longer feed

without those tiny droplets.

What good is the dirt?

 

 
For a life that is so fragile

soft and precarious

so dependent on these molecules

and conversations

and circumstances,

it sure as heck

feels weathered

and hard.

 

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No Rules Poetry