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Posts from the ‘Diabetes Advocacy’ Category

Happy Birthday, Dr. Seuss!

Happy birthday to Dr. Seuss!  He’s always been one of my favorite writers to read, recite, and then parody as needed.  In homage to the good doctor on his birthday, I’m revisiting a poem I wrote called A Human’s Resilient, One Hundred Percent! Because we are resilient, damn it.

*   *   *

Sighed Panky, a lazy panc deep in the gut
“I’m tired and I’m bored
And I’m stuck in a rut
From making, just making insulin every day.
It’s work! How I hate it!
I’d much rather play!
I’d take a vacation, or a long nap
If I could find someone to do all this crap!

If I could find someone, I’d kick back and chill …”

Then Panky thought, “Could Kerri be up for the thrill?”

“Hello!” called the lazy panc, smiling her best,
“You’ve nothing to do.  Does this sound too strange …
Would you like do the work I do for a change?”

Kerri laughed.
“Why of all silly things?
I haven’t islets or enzymes or things.
ME do your job?  Why that doesn’t make sense!
Your job is make insulin!  The thought makes me tense.”

“Tut, tut,” answered Panky.  “I know you’re not me
But I know you can do this.  Won’t you hear my plea?
Just pick up that needle and draw up the dose.
Once insulin’s flowing you won’t feel morose.”

“I can’t,” said the Kerri.
“PL-E-ASE!!” begged her panc.
“It won’t be too hard, kid.  Sorry to pull rank.
But I’m leaving regardless if you raise your voice.”

“You’re a jerkface,” said Kerri.  “Not to give me a choice.

I’m unsure how to do this. Details are the devils!
How do I keep steady my blood sugar levels?
What do I do? Can you leave me instructed?”

“You’ll figure it out,” and the panc self-destructed.

“The first thing to do,” murmured Kerri,
“Let’s see.
The first thing to do is to prop up this Me
And to make ME much stronger.  This has to be done
Because diabetes can weigh an emotional ton.”

So carefully,
Hopefully,
She searched, unimpeded
For the resources, tools, and support that she needed.

“I know that there’s life found after diagnosis.
It’s good and it’s worth it. That’s the prognosis.
I meant what I said
And I said what I meant …
A human’s resilient,
One hundred percent!”

Then Kerri, with peers and insulin by her side,
Well she tried
and she tried
and she tried
and she tried.

She kept at it for decades
Despite feeling perplexed.
It requires work one day,
Again on the next.
It sucks! Then it doesn’t!
But Kerri remained sure,
“My life’s worth this effort,
(Though I’d still love a cure.)
I wish Panky’d come back
‘Cause some days I’m so burnt.
I hope that my body thrives on the things that I’ve learnt.”

But Panky, by this time, was far beyond near,
And was dormant for good now. Diabetes was here
And was staying, so Kerri, for better or worse,
Had a pump on her hip, glucose tabs in her purse.

Diabetes is constant, day after day.
But the life in its wake is still good, plenty yay.
And even on days when the Stuff is Way Blah,
Life with disease is not life without Awe.
“It’s not always easy. Diabetes might test me.
But I’ll stay on task and I won’t let it best me.
I meant what I said
And I said what I meant …
A human’s resilient
One hundred percent!”

Some days it is simple. Some months are real hard.
Diabetes is something you can’t disregard.
But a panc on vacation doesn’t mean that you’re broken.
“You can still do this.”

Truer words never spoken.

 

[With apologies and thanks to Dr. Seuss,  this is in homage to Horton Hatches the Egg.]

Spare a Rose: 2015 Results.

This year, the total raised for IDF’s Life for a Child program through the Spare a Rose, Save a Child campaign was $24,229.

We aimed to raise money and awareness for kids in developing countries who are without resources and insulin, and we raised money.  And awareness.  For the third year running, the diabetes community as a whole pledged their time, money, and outreach to touch the lives of people we’ll never meet but who have a chance to thrive based on our willingness to give.

If that’s not inspiring, I’m not sure what is.

In these beautiful images created by Mike Lawson from Diabetes Hands Foundation, you can see how far that money goes.

[More on the Spare a Rose 2015 results here]

Thank you, each and every one of you, for your support for Spare a Rose.  Your blog posts, Tweets, emails to friends and family, you reaching into your own pocket to share just a little so that others can continue to live … every little thing you do, matters and resonates.  Spare a Rose has closed out for 2015, but the influence of our collective contribution will last a lifetime.  And will provide a lifetime.

Our global community thrives and continues to inspire, thanks to all of you.

 

Looking Back (and Forward): Diabetes Haiku.

During this week’s #DSMA chat, a sidebar discussion about diabetes haiku broke out, and in a matter of seventeen syllables, things took a poetic term.


I was reminded of a post from a few years ago about insulin haiku that still rings true because I’m clearly still hooked on the stuff:

Such a small bottle
with such a huge influence
on my whole damn life.

In a carefully orchestrated combination of syllables, what would your diabetes haiku say?

Knowledge Gaps.

I wish I knew more about a lot of things.  Like dinosaurs.  (Mostly because Birdzone keeps asking me about them and what their names are and what kind of foods they liked to eat, and I’m not as brushed up on my dinosaur details as I was back in second grade.)

But there are things I truly wish I knew more about, in a diabetes sense, and I’m eager to learn.  One theme that’s come circling back around every few weeks is that of advocacy and influencing policy decision makers in Washington, DC.

This “lets all go to Washington!” advocacy, admittedly, makes me feel like an idiot because my knowledge gaps in this arena are obvious to me.  I know how to tell my diabetes story, but I don’t know how to made that story resonate for decision makers.  What makes issues matter to people?  What’s the best way to reach folks in policy?  How can one voice make a difference, and – more importantly – how can a collective of voices make the biggest difference?

We, as a community of people touched by diabetes, have the opportunity to learn from one another.  And I’m excited to do that, because I need to learn.  I want to be more effective as an advocate and for me, part of that process means closing some of my personal knowledge gaps.  (Here’s where programs like Masterlab are already so effective, and could be even more so.)

What do you want to learn (more) about?  Once we start minding the gaps, we can start filling them in with good information.

I want to learn more about effectively influencing health policy in a way that takes the best possible care of people with diabetes.  I want to learn more about how to make the most out of the healthcare I have access to.  I want to help empower myself to live well with diabetes, and to assist in empowering others.

Sparing roses helps.  It’s simple and makes sense to me.  But what else is there that can be done?

I seek education, dedication, and determination to help me find out.

(And yes, I’m sticking it into a blog post as a way to keeping myself accountable.)

Syrupy Thick.

The reasons why I ended up so high are complicated: a combination of poor bolus calculation, not pre-bolusing, a higher carb meal, and an infusion set ripened and rotting at the end of day three made for that wicked high blood sugar.  I need to own it because there are things I could have done differently for a better outcome.

Fact is, I was high.  Way too high.  And sitting on the train heading into New York City with high blood sugars cruising around in my body created a rough ride.  I couldn’t use my computer or read because my eyes were exhausted and my vision was blurry.  My arms and legs felt heavy and slow to respond, making the trek back and forth to the bathroom painful.  If you cut me open, I feel like maple syrup would have spilled from my veins.  Everything kind of hurt and ached and felt laced with lethargy.

And I had only been high for an hour.

I took an injection of insulin (my preferred method of attack for blood sugars that are excessively high and sticky) and drank water while I waited for my blood sugar to return to range.  I knew it would come down eventually, but remaining in that high hurt, physically.

An hour later, I checked my blood sugar and saw that it was starting to drop.  314 mg/dL felt amazing compared to the 400+ I was earlier.  Two hours later, I was in the 200′s and could have danced my way off the train and through Penn Station.  The difference that one injection of insulin made was amazing.  I felt human again, and able to engage in my life.

Sara wrote about how prolonged high blood sugars feel, and her post hit deep.

I write this to remind myself how important insulin is for people with type 1 diabetes.  And how much it hurts to not have the right amount of it racing through your body.

Please consider supporting the Spare a Rose campaign.  It’s important.  It matters.  It makes a difference.

Spare a Rose is Live!

Visit www.SpareARose.org for more details.

Donate here.  Please spread the word.  #sparearose

One Voice.

[Disclosures first:  I attended the Partners in Patient Health Summit yesterday in Washington, DC, which was an event sponsored by Sanofi.  They paid my travel and lodging.  I paid attention and generated my own opinions.  Now you know.]

At the Partners in Patient Health Summit yesterday, there was a spirited discussion about the power, and then the powerlessness, of the diabetes community.  John Schall, CEO of Caregiver Action Network, told the group (and I’m paraphrasing) that he was disappointed to see a community with so many people in it, yet so powerless.

This statement stuck with me because it forced me to step outside of the diabetes comfort bubble, and as the conversation moved forward, I wondered why we, as the diabetes community, have such a hard time coming to consensus on things. Why are we so disjointed, at times, in this space?  Diabetes, in my case, is a disease that will span decades and has been present for the vast majority of my life, causing relevant issues to shift with time.  When I was diagnosed at the age of seven, my parents needed support in taking care of me and my main priority was getting to soccer practice, or turning in my homework.  As I’ve grown older, priorities changed to include staying healthy to take the best care of my daughter.  “What matters most” is redefined every few years, but at the core, what matters most truly is my health.

Later in the afternoon of the summit, advocates from other health conditions took the stage to talk about what has worked, advocacy-wise, in their community and where they’ve drawn success from.  A common message from the other advocates was that consistent messaging matters, and to be heard, we have to speak with “one voice” as much as possible.

Can we speak with one voice?  Can the diabetes community come to agreement on two or three issues that we can rally behind with passion and conviction, raising awareness and our voices?

What can we, as a group rally behind? Where are our common goals? And how, for crying out loud, can we bring them to fruition?

(And to check out some of the discussion from the Summit on Twitter, take a look at the #diabetesPIPH hashtag.)

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