Saturday, May 9, 2015

Furry Fluffy

I am having difficulty typing this as I have a cat on my lap. 

As I approach my two class finals, I realize no project looms on the horizon.

What to do?  What to do?

Furry creatures smile.  Why not tell our story?

What story?

It will come to you, they promise. 

Introductions are necessary.
This little elf has been with me for over half a century. She is magical, whimsical, nurturing. 
A very old dog.  Growly, gruff,  stuck in his ways.
At Woodmans, he convinced me that if I took him home, stories would abound. 

She also convinced me that day that bringing her home would be in my best, creative interests.
A week later, I met this pup at Woodman's.  She reminded me of my sister's dogs, and at first, I thought that's where she belonged.  However, she convinced me that I needed her to stay or the stories would either be too stodgy or too out-of-control.
"We need a rabbit," they said.  "No story without a rabbit."  We found each other today and home she came.  Not sure why we need a rabbit.  She's worried about why exactly an owl, a fox, and a pup would want a rabbit and hopes they aren't inviting her to be dinner.  "You do know," she whispered in the car on the ride home, "that owls and foxes and dogs eat rabbits."  "Just little tiny rabbits..." "I'm a little tiny rabbit and I don't want to be dinner." 
Already this story is getting out of control.  No one has a name yet, and I'm not altogether certain of gender.  But here they are: our cast of characters so far, ready for adventures. "Life is better without adventures," mutters rabbit and I assure her we will have no tragedies.  "Maybe what we need are more rabbits."
All during Sweet Lowdown, I mumbled that writing and producing a show would be sooooo much easier if instead of needing to be Absolutely Scientifically Accurate, World Changing, Saving Lives by Telling the Truth, Dispelling Myths and Stereotypes, I would be much less stressed, less would ride on the outcome and I wouldn't mind how those who were supposed to be helping were twisting the show to say the antithesis of its purpose....  In short, life would be more pleasant and relaxing if it were a show about fuzzy bunnies frolicking with their friends. 
They promised me.  Would these faces lie? 

Wednesday, February 4, 2015

What We Must Not Say

Today I read about Sanofi's Diabetes Advocacy Summit.  The blogger I read was frustrated at the lack of progress.  The commenters voiced their frustrations, as well.  Yet, between the lines are the reasons for the lack of progress.  Sniff, and you can smell the bullshit we all accept.

Maybe it's like the smell of the manure wafting from the farms north of me.  Living amidst it, the farmer doesn't notice the smell.

There are things we don't question.  Things it is heresy to question.

The blogger is tired of hearing that we need to be more unified.  Yet the unification I too often see is an Us vs Them mentality, Type 1 vs Type 2.  An educated white woman worries about limited resources without questioning the idea behind it: that some are more deserving than others.  That if one group gets what they need, another group must do without.  Yet, I wonder how often she has been denied access to insulin.  Despite whatever connection she may have to a prestigious university, she seems ignorant that many with Type 2 also make no insulin while requiring even larger amounts to keep their blood sugar in range.  Shouldn't we be working toward enough insulin for all those who no longer make enough?

If we want the public to be better educated about diabetes, those who speak out need to be more knowledgeable.  Too many assume that diabetes, especially Type 2, is a lifestyle disease, easily preventable.  It's not.  Diabetes is an endocrine disorder, the result of a malfunctioning pancreas, that results in high blood sugar. 

I am tired of the stylish spokeswomen for the ADA knowing nothing about diabetes beyond what they heard on Dr. Oz.  Interim CEO Suzanne Berry may have a "strong background in disease-related non-profits" but for her salary she needs to know something beyond how to raise money.  She needs to know how diabetes works.  If she were working for General Motors, wouldn't she need to know something about cars beyond where to insert the key?

The national diabetes data registry sounds promising, especially as it will supposedly include LADA, MODY and GDM as well as Types 1 and 2.  I wonder if they will include the number of patients misdiagnosed each year.  And for those initially misdiagnosed, will the correct diagnosis be entered and counted?  Will fewer doctors assume that the patient must be another non-compliant Type 2 and will more doctors be encouraged to look beyond a patient's age and weight?

Will having more data lead to a shift in how we view diabetes?  Or will those in a position to change things pick and choose what they see?  Will they be able to change or will they keep doing what they do?

Friday, January 2, 2015

In with the New, Out with the Old

It's been months since I blogged.  I watch students blog.  I read others' postings and get sucked into Facebook discussions.

Was it three years ago when I started working on The Sweet Lowdown, hoping to change the world?  The world was bigger and more ferocious than I had imagined.  It didn't want to be changed.  The wounds from Sweet Lowdown are slowly healing, but each foray into social media reminds me how hard the rest of the world will fight to maintain the myths and stereotypes.  It's brutal out there.

Linking obesity with diabetes is so much a part of the culture.  It's in every news report.  Every research study must contain the phrase, whether it has anything to do with what was studied or proven or whether the evidence even refutes it.  We could jettison the Holy Trinity from Mass sooner than omit this phrase.

I hate the phrase every time I hear or see it.  It's a malicious and dangerous phrase, leading to misdiagnoses, denial of access to insulin, test strips and education.  It sucks money away from researching areas we prefer to keep hidden:  PCOS, famine-induced diabetes.  It blames and shames and makes everything harder.  If you just ate right.... If you just got more exercise....(You would cease to be a problem).  If you were just like me: Perfect.  Lucky.

It's driven by fear.  Augusto Boal said that the Oppressed become the Oppressors in order to escape (temporarily) their terror and agony.  One does not need to outrun the tiger, only the person closest to the tiger. 

I thought maybe we had done some good.  My first visit to my endocrinologist after she saw the play we talked about how my beta cells were functioning.  But six months later, she had reverted to her mantra.  (This is what she knows, whether it is true or false; this makes her feel powerful and safe.)  And once again the wheels of the bus grind me under.  I am a series of boxes on a screen.  When they are ticked off correctly, she gets a Gold $tar.

I've made some resolutions:  I stopped following the diabetes sites on Facebook.  Any comments I want to make, I'll make here.  I don't think anyone reads this, so I'm safe here.  Last November, I stopped taking the Simvastatin and the Levothyroxine and I've opted not to undergo colonoscopies or mammograms.  They have labeled me noncompliant, but then what I do is never good enough.  I still get the warnings of dying a horrible death.  But if I do everything they say, can they make me immortal?  Can they at least fix what is wrong?  I didn't think so.  Let's fix what's wrong, or at least not make things worse.

I want my life to be more than numbers on a medical chart.  I want to be the one who decides which numbers to ignore.  I live with those numbers every moment of every day.  They glance at them every six months and move on.  Why do they ignore the Cobb angles of my scoliosis tripling?  Why do they tell me to "eat less, exercise more, lose weight" but never look at what I eat or how many dance classes I take or the fact that my weight and insulin resistance both rose on the two pills?  Only I am looking after me.

So no more advocacy.  No more blindly doing as I'm told.  No more explaining to those who refuse to hear.

Last year's resolution was to sparkle more.  That's one worth renewing, intensifying.  I need to sparkle.  To shine.  To dance and sing.  To write crazy things and ignore the crazies who critique them.  To embrace and believe in good things.