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Posts from the ‘Diabetes Poetry’ Category

Sweet Little Lancet.

Sweet little lancet
You are so damn tough.
I keep you until
All your edges are rough,
Until your sharp peak
Becomes dull and harpoons.
Oh sweet little lancet,
I will change you soon.

Sweet little lancet,
You deploy with a thud.
It can take several tries
To get you to draw blood.
And at that point, you’d think,
I’d wise up and swap out.
But sweet little lancet,
You should have your doubts.

Sometimes I forget
I have a vast collection.
No need to reuse!
I’m inviting infection.
I should change you out
Before you get strange,
But it takes a reminder
(Like when the clocks change.)

Sweet little lancet,
I respect what you do.
My supply closet’s stashed
With an army of you.
But in the event
There’s a cure that’s clever,
I’ll repurpose your ass;
I’ll have thumbtacks forever.

Diabetes Blog Week: The Other Half of Diabetes.

The Other Half of Diabetes:  We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

(And for more on the topics of Diabetes Blog Week 2016, click here.)

“Just don’t eat sugar.”  “Take your pills.”
“Count your carbs.”  “Avoid most thrills.
“Be prepared.” ” Plan ahead.”

But this disease
Is in my head.

I can’t split up the thoughts around
My mental health and body sound.
Impossible to draw a line
Between “I’m sick” and feeling fine.
Just take my shot?  And avoid stress?
Beware of cake?  Test, don’t guess?
The list of things disease requires
Realigns my needs around desires.

“I need juice.”
“It might cause strife.”
But sometimes juice can save my life.

It’s hard to share
How much I see.
In every test,
Mortality.

Was seven then, when it arrived.
And since that day, I’ve stayed alive.
But not because
I’ve not had pie.
Or “just took shots.”
I try.
And try.

The mental health
I have achieved,
I fight for – harder? –
Than A1C.

The demands put on a chronic life
Exceed “just take your shot.”
We live beyond, we live out loud.
Mental health not an afterthought.

It’s not a disease where you just “just.”
It’s more than simply “do.”
But how I manage mental health
Will help me make it through.

Kitchen Poetry Slam.

Revisiting an older poetry post, recorded in my kitchen with a healthy dose of a Rhode Island accent.

 

Because we are resilient, damn it.

 

 

The Patient Voice 2016: Bridging the Diabetes Gaps

Happy Friday, friends!  Today, Marina Tsaplina is borrowing the blog to help spread the word about an event she is hosting in New York City on March 20th.  It’s the debut event for The Betes organization, and the goal is to give rise to discussions about the emotional influence of chronic illness.  Part of the presentation will be a discussion about diabetes-related complications, which is a topic that we remain guarded and careful about, as a community.  I’m excited to see that topic cracked open in such a way, and Marina’s methods of tackling topics with creativity and passion should be a don’t-miss-it experience.

  *   *   *

Hi everyone! Kerri generously gave me a chance to write to you about an upcoming event for the diabetes community — in NYC on Sunday March 20.

Please join us!

Here’s some info:
Event: The Patient Voice 2016: Bridging the Diabetes Gaps
Date: Sunday March 20, 2016
Time: 1:30 – 5:00 p.m.
Location: 417 e. 61st street, Manhattan

Q: But wait– What’s this all about?!
A: This is the launch event of THE BETES Organization.

Q: Why does this matter to me?
A: Good question!

THE BETES work is about the lived experience of living with chronic illness- the mental health, the emotional well being, and the social dynamics. Our programming currently focuses on the type 1 diabetes space (I’ve had type 1 since I was 2 years old, so yes, it’s personal.)

That’s me in the video below.  It’s a short three minutes and should give you a good sense of how people have responded to our work and how it has touched lives.


Whatever your story is, coming to understand and express the rewards and hardships of living with a chronic condition, surrounded by community, is our task.

This act of expression gives validity to our narratives, and strengthens all of our voices, simultaneously helping those who we are surrounded by better understand the patient experience, strengthening communication and building compassion.

What we at THE BETES add to the mix is the transformative power of puppetry (yes, really!)- suddenly, all of this invisible stuff has form and shape, and we can all see it, talk to it, cry and laugh at it. It’s a powerfully unique creative tool.

The event will host a 45 minute section of our creative, participatory programming. One of our programs is on that big, scary topic of diabetes complications … it’s called the Invisible Elephant Project.

This is a sneak preview and world premiere of a major undertaking, where we have collected over 900 responses through a survey, and have led over 20 interviews with individuals. This will be followed by a heated discussion with a leading panel of patients, advocates, and clinicians, and will be followed by an award ceremony for our two honorees. This is in-between a wine reception with a top-notch live jazz trio.

It’s going to be incredible — but it will be even more incredible, with all of you with us. Actually and honestly, it will be completely no fun and meaningless without you.

We have people coming in from all over — so if you’re anywhere on the Northeast, and if you need a reason to come to NYC, this is it.

twitter hashtag: #ThePatientVoice2016
event registration page: http://bit.ly/PatientVoice

Everybody Beeps.

(With deep, deep apologies to R.E.M. and Everybody Hurts)

Everybody Beeps

When your day is long
And the night, the night is yours for sleep.
When you tuck yourself in bed
For some rest … well hang on

Don’t close your tired eyes
Cause you wear a device
And everybody beeps … sometimes.

Sometimes reservoirs are low
And need to be refilled.
So you get up out of bed (set off, prime on)
Remove the older site (prime on)
You fill with what you need
For three days … well hang on

Everybody beeps
Takes comfort in the tech
Everybody beeps
Don’t throw your pump, oh no
Don’t throw your CGM
You feel like you’re alone?
No, no, no … you’re not alone.

If your islets are a mess
And you’re doing the best you can
When you think you’ve had too much
Of the beeps, well hang on

Well everybody beeps, sometimes.
But you are not alone.
Community is here.
All the time.
We’re here all the time.
All the time.

So hold on, hold on
Hold on, hold on, hold on, hold on, hold on, hold on
Everybody beeps

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