Sat, 21 Sep 2013 10:20:09 -0400
Subject: coraggio

Hi All,
Just a note of “coraggio” and fortitude.
When I was being discharged from Sloan-Kettering this week after a lung
infection, I said to the young attending, “In order to be discharged here
is my list of demands” and I handed her a beautifully magic markered paper
— including my demand for a one month supply of Xopenex (nebulizer med
that is about $2000/month and only covered if you’re in a nursing home —
it’s considered by ins companies as “life support”)  —  Now, I don’t
understand the economics of pharmaceutical companies and insurance
companies and how this gets communicated down to pharmacists and doctors
and patients —  but nevertheless, I knew I was wheezing bad and green
lung gunk — and that Xopenex keeps me breathing hence alive.
Twenty hours later, I got the medicine bag.  After visits and “no’s” from
everyone.  I called in the Rabbi, the Pharmacist, the Social Worker, The
Patient Advocate, numerous doctors, etc.  I simply refused to leave.  The
language I used was all from my days as an AIDS ACT-UP Activist.  “I will
handcuff myself to the bed until I get my meds.”  “Remember the Alamo.”  I
was calm.  Sitting Bull.  Just kept ordering breakfast lunch and dinner.  I
pulled out my I.V., bandaged my arm, read, wrote poetry, painted, and
continued to get my nebulizer treatment.  The bottom line is this.  In 3
minutes of an acute asthma attack I could be dead.  I refused that.  At all
costs.  The attending was stunned when the pharmacy came through with the
bag of meds.  The attending at one point said to me “As a compromise, maybe
we can get you one box of the meds.”  What compromise?  Is death a
compromise?  Is this a business negotiation?  Have I survived 32 years at
Sloan, to die because the breathing med is expensive?  How does this all
work?  How can I benefit others with this story?  I have always been an
advocate / activist for people to get med care.  I studied Medical
Anthropology at Brown.  I went to Egypt to study how peasants with
Schistosomiasis get treated or not and why.  And how this turns to bladder
cancer.  I was an AIDS activist in the 80’s.  And now it all comes down to
3 minutes and my own irradiated scarred fibrotic reactive lungs and
brochial tubes.  my alveoli
Love and Power
HD 86
Thy 97
damages galore

One Response to “REMEMBER THE ALAMO”

  1. […] REMEMBER THE ALAMO. […]

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