Month: August 2017

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”.

 

 

 

New Flavor

Maury called and you are not the father! They are not your fingerprints. You ask, “How are you? When can I visit?” “Good. Never.”

You come anyway.

When you are here everything melts away. The coffee shop swallows us whole. The perfect amount of cream in the cup. The cake with your name on it: “Welcome Home.” The way life was meant to be before I pushed away, the way an Olympic swimmer somersaults into the wall feet-first and propels into space. I ran feet-first away from you, you whose love is of the good variety. My heart got tangled in the weeds. The coffee shop brews a new flavor. We keep coming back for more.

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.

 

 

GAD

Generalized anxiety disorder

is like studying liberal arts at college:

You dabble in stuff

some useful

some not so much.

Generally-speaking,

it’s expensive

benign enough

though rarely easy

poetic

 

GAD is one letter off from God

which somehow feels

that much closer to Him.

GAD sounds like God

pronounced with a Boston accent.

Oh my GAD.

 

Ironically, the liberal arts analogy

appeared mid-homily

at Sunday morning Mass

Were thoughts spilling out of my ears?

They banged so loudly inside my head.

Thanks for listening, God.

 

We take these things

and mix them up

like the alphabet soup

of diagnostic codes.

We read them in the news

MDD.  OCD.  PTSD.

Post– meaning “after”

But what about the here and now?

 

Instead of alphabet soup

what if we used the chicken noodle

with those tiny stars again?

Constellations in pools

of constant motion

hard to decipher

That’s why God created

liberal arts degrees.

 

 

 

No Rules Poetry