In Memoriam

  • Alec Raeshawn Smith (26 years old; USA)

 

  • Shane Patrick Boyle (48 years old; USA)

 

  • Kevin Houdeshell (36 years old; USA)

 

  • Others worldwide whose names we do not know

 

 

This list honors those confirmed to have died prematurely due to healthcare inaccessibility and the high costs of obtaining insulin.  Sadly, these deaths occurred in the 21st century, at a time where cutting-edge treatments and healthcare benefits are hot topics.

We can and we must do better.

 

While I am normally shouting from the rooftops for a diabetes cure, this year feels different.  The diabetes community will never forget the names on that list, which speaks to their continued advocacy even after death.

My one ask on World Diabetes Day (WDD) 2017 is this:

Let’s not add more names to this list by the next WDD, or the next one, and so on.  The clock starts now.

 

The best memorial we can provide for those named here is to keep that list stagnant through our collective efforts.  Whether you identify as a fellow person with diabetes; someone who loves a person with diabetes; an employee of Pharma / PBM (pharmacy benefit manager) / insurance company / healthcare entity; an advocate; a non-profit leader or volunteer; an elected representative; a healthcare provider; or simply a human being with a heart, we must actively address this issue, together.

All politics aside, the only meaningful, mutually exclusive interests when it comes to insulin are life or death.  Particularly in the past year, we have encouraged a more open dialogue among many parties in the healthcare equation.  I hope that today reinvigorates us to keep moving that dial forward, toward more equitable opportunities for survival and quality of life for every person touched by diabetes.

There are many blog posts and articles out there detailing how this can be done effectively.  My little piece of WDD advocacy is not to reinvent that wheel today.  It is simply to ask us to reflect on lives lost too soon, and on so many others who fight convoluted healthcare systems all over the globe in search of insulin.

Keep saying their names.  May we hold their stories closely today, and always.

 

 

If you know of other names we can honor and remember here, please contact me to update the list.  Thank you.

 

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3!

Very Light, No Sugar is celebrating its third blogoversary!

Thanks to those from all over the world (99 countries!) who have read my website over the past 3 years. How humbling to see that our words are able to reach so far, and that we remain unified in our mission to kick diabetes to the curb.

This year provided different avenues of healthcare advocacy for VLNS.

Reese joined our ranks!

The Coffee Dates interview series was a big hit, and our strong resolve to make insulin accessible and affordable was a highlight topic.

I am grateful to have traveled to Indy to participate in Lilly’s insulin access workshop at their corporate headquarters in April.  (Yes, I still intend to blog on this; yes, I’ve drafted the blog many times, in my head and on paper; yes, I have disclosures: Lilly covered my travel, lodging, and meals.)  More to follow, but briefly: It meant a lot to me to see the makers of and the history behind insulin firsthand, and to be able to advocate at that level for a better diabetes world.

Also new this year, VLNS has dabbled in No Rules (free verse) Poetry.  Poetry is fluid; it is not always autobiographical; it allows us to explore beyond the usual confines of writing. I am super excited for my tickets to see Neil Hilborn during his upcoming, mostly-sold-out U.S. tour!  Mental health and poetry- these are a few of my fav-o-rite things right now, and no one does them better than Neil.

On that note, I believe strongly that sometimes our best advocacy is to simply be honest- even brutally so. Do I have regrets about blogging? Frankly, yes.

If I could go back in time, I wouldn’t have been so corny when first starting out in the DOC. (“We are diabetes warriors, waging a cliche battle, we will overcome, ahhh!”).

A hard lesson in reality this year is that sometimes, no matter how tough your armor, diabetes and other stuff still hurt like hell and feel like losing more than winning. Occasionally, I wish I could crawl back under my little rock and regain my privacy and my life pre-blog. Or that there was a non-live-tweeting-your-emotional-rollercoaster space where one could simply shout at the wall.

There are a lot of asks in advocacy, and it is hard to say no. But advocacy needs a better balance- taking our time (and having our time respected) when experiencing too much at once.

No matter what, I will always be appreciative of this website and its following. And I hope year #4 is productive and meaningful for all of us.

Cheers!

-Ally

 

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Guest Blog: Mindy Chats Mental Health and Chronic Illness

Editor’s Note: My good friend, Mindy Bartleson, joins Very Light, No Sugar in this guest blog to discuss mental health, chronic illness, and her upcoming work. Thank you to Mindy for saying what is sometimes difficult to put into words.  It matters to many of us, and I can’t wait to read more from you in the future!

 

From Mindy:

Whether you live with a mental health diagnosis or not, mental health plays a significant role in life and chronic illness, like diabetes. But it isn’t the first thing that is focused on- or at all. Why is it often ignored? Or discounted?

 

Over the years I’ve seen how chronic illness and mental health impact each other. I have type 1 diabetes, but there are also a lot of other things going on in my life, including anxiety, OCD, and ADHD.

 

I often hear that message is it must be diabetes distress. That these emotions and possible diagnoses are only because someone has diabetes. Yes. This might be the case, but it isn’t always so. Diabetes is used as the easy answer- the quick way out- and this causes things to be missed- like a diagnosis or how to cope.

 

It’s a lot easier to cope and figure out ways to manage things when you know what’s going on. When I was diagnosed with anxiety, I realized how much of it played into my life growing up. I was told that I had grown accustomed to it. That it was my normal. I honestly cannot say if there was ever pre-anxiety. I was always a high strung and worried kid- even before the diabetes. The moment I went on medication, I realized that it had made a lot of things more difficult.

 

Sometimes my mental health impacts my diabetes- if I get anxious or stressed, my blood sugars typically go higher. If I cry, my blood sugar spikes. Then if I’m more stressed, my OCD plays out in my diabetes management. If I’m above the 200’s, I obsessively want to check my blood sugar every 20 minutes (even with a CGM). Then sometimes, if my blood sugar is high or low, it impacts my mental health too. A low blood sugar makes my ADHD more obvious- I’m more scattered. High blood sugars make me more anxious.

 

When my blood sugars aren’t in target or the issues from PCOS and endometriosis arrive, it becomes more difficult to manage my mental illnesses. It’s hard to appear like there isn’t a lot going on in my head. I cannot hide it.

 

But my mental health isn’t always about my diabetes- sometimes it is- sometimes it isn’t. The same goes for my diabetes. It’s hard to distinguish between the two, but the go to shouldn’t be to attribute everything to diabetes- it could be that, but it could also be something else. Like my blog focuses on, there’s always more to the story. It’s not just one thing- it’s often many things going on.

 

This is a major reason why I decided to take on a project.

 

You see, I’ve written a book, and I’m pursuing self-publishing. It’s about coming of age with chronic illness and mental health. I want to balance the positive with the negative of life experiences with honesty. I’ve always wanted to be an author, but to be perfectly honest, I never saw myself writing this type of book. Since I’m self-publishing, I also decided to use crowdfunding to make this dream a reality.

 
Mindy is self-publishing an honest book about growing up with chronic illness and mental health. She wrote the content before rose colored glasses impacted her experiences too much. To help this book get published, you can visit the crowdfunding page to learn more, back her project, and help spread the word. You can also follow Mindy on Instagram, Twitter, Facebook, and her blog “There’s More to the Story”.

 

 

 

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