[humanser] How I Dealt With Chronic Pain That Wouldn't Go Away

[Mary Ann Robinson]

      Rachel Kramer Bussel and Jennette Fulda, Alterationet April 9,
2011
  Blogger and weight loss memoirist Jennette Fulda wasn't sure
what was going on when she started getting headaches, only that
eventually she had to come to terms with the fact that her
headache wasn-t going away.  Unluckily for her, but luckily for
us, the result of her ongoing quest for pain relief is her memoir
Chocolate and Vicodin: My Quest for Relief From the Headache That
Wouldn't Go Away (Gallery Books).  She details everything she did
to try to cure her headache, to the tune of $10,000, trouble at
work, and umpteen suggestions from well-meaning readers, with
only minimal results.  The 30-year-old web designer talked to us
about humor as a coping mechanism, dealing with inept doctors,
what to say (and not to say) to a chronic pain sufferer, and
whobd play her headache in a movie.  Rachel Kramer Bussel: What
was your experience with headaches prior to the time period you
cover in Chocolate and Vicodin?
  Jennette Fulda: When I was a kid I occasionally got headaches
if I was dehydrated or stressed out.  Then when I was twenty-one
I got a headache when I was driving three hours to visit a
friend.  I got detoured because of a chemical spill on the
highway, got lost, got found, and got pulled over by a cop for
speeding.  That headache lasted for a month, but when I finally
made myself visit the doctor she gave me a beta-blocker that made
it go away.  I took that pill every night for six years.  I tried
to go off of it twice, with my doctor's supervision, but when I
did the headache came back.  Then when I was 27 the meds stopped
working and I've had a headache ever since, 24 hours a day, 7
days a week, 365 days a year.  (And because I got the headache
during a leap year, that was 366 days that year.)
  How far into your headache journey did you get the idea for the
memoir?
  It was when a nurse came to my home to insert an IV in my arm
so I could give myself a home IV treatment every day that week.
I couldn't believe they were trusting me with this.  It was
insane.  I could have injected anything into that thing! Or
infected myself with bacteria from my kitchen table! So I decided
I had to blog about it, but the blog entry got really long.
That's when I thought it might be a book, but at that point the
book didn't have an ending or even that much of a middle since
that scene happens around page 60.
  There's a lot of humor in the book, even when you're discussing
very challenging times when you were pretty much unable to do
much besides lie on the couch.  Does humor come naturally to you
and, especially relating to the headache, was it a coping
mechanism?
  Several people have asked me this, and I've thought about it a
lot.  I've come to the conclusion that I have no idea where my
sense of humor comes from.  It's just part of who I am.  My
family likes to joke around a lot and when we have an extended
family reunion sometimes all the laughing makes pets flee the
room.  So it might come from that.  Regardless, humor definitely
helped me deal with the headache because if I wasn't laughing I'd
be crying.  And crying is bad for the headache.  It makes me feel
all stuffy.
  You talk about chronic pain in the book and I must admit that
I've never through about that in terms of headaches.  How do
headaches fit in with the world of chronic pain sufferers?
  Headaches are sometimes trivialized because people think, "Oh,
it's just a headache.  Everyone gets those.  Just take an
Excedrin." A constant headache becomes part of your consciousness
because it's located in the same place where you see out into the
world.  It's like an extra sense I use to process my environment,
like sight, smell, or taste.  I could imagine a life without a
leg or an arm, but I can't imagine a life without my head.  In
that way the pain is part of an indispensable, essential part of
me.  Headaches are also most common in women, so like other
primarily female diseases in a historically male-dominated field
they weren't always taken seriously, and sometimes still aren't
today.  There are now many more women in the health industry, and
research has shown that migraine disease and other headache
disorders are real diseases that deserve serious attention, but
there's still room for improvement.
  On your site you have a PDF entitled "5 Tips for Talking to
Chronic Pain Sufferers," and in the book, often how people spoke
to you or dealt with you, especially when they were dismissive or
clearly clueless, seemed as arduous at times as the physical
pain.  What are the biggest mistakes both the medical
establishment and laypeople have made when talking to you about
your headache?
  I think the biggest mistake is that people talk more than they
listen.  More specifically, people like to talk about themselves
and their experiences with pain more than they like to listen to
someone else's experiences.  When people give me advice about
treatments, it's usually a roundabout way to talk about
themselves or something a friend of theirs experienced.  I still
think they mean well, and in their defense all you really can
share with someone is your own experiences, but try not to make
it about you.  Focus on the sick person instead.
  As for doctors, I've read that it only takes 18-23 seconds
before a doctor will interrupt a patient.  It's easy for doctors
to form an opinion too quickly, especially because they're so
pressed for time.  When doctors mentioned my "headaches" it
always annoyed me because I don't have multiple headaches, just
one that never goes away.  It made me feel like they didn't
really understand what was going on, and if they couldn't grasp
such a basic premise of my condition how could they help me? When
I went to a specialized headache clinic a year into my headache,
I spent an entire hour with a nurse just going over my headache
history.  I had never gotten that much time and attention at any
other doctor's office, ever.  I really appreciated it.  So I
guess the lesson is to talk less, listen more.  You also say that
more than advice or something that is meant to be helpful but
often isn't, what chronic pain patients want is to feel validated
and listened to.  I can tell you that when I read that my
instinct to want to help felt extremely thwarted.  Is there
anything more people can do?
  Have you ever been stuck in traffic and complained about it to
someone on your cell phone? Would you prefer they say, "Well, you
really need to leave the office earlier and not take the
interstate," or "That sucks, dear." Most people would choose the
latter.  That's how it is for chronic pain sufferers, too.  When
you're in the middle of something, you don't want someone
critiquing the choices you've made.  You just want them to give
you a hug.  So, there's your answer.  Give hugs.  Lots of them.
  What advice would you give to other headache sufferers? Were
any of the treatments you spent $10,000 on, even though they
didn't cure your headache, worth their price?
  It's important to keep trying new treatments.  It can be really
disheartening when you try dozen of things and none of them work,
but eventually you might find something that brings down your
pain if not cure it.  So keep at it, even if it's exhausting,
soul-crushing, tedious, never-ending work (and paperwork).  It's
okay to take a few weeks off between new things if you're really
exhausted, but keep an open mind and try to find what works for
your life.  As for money, thankfully my insurance covered a lot
of the bills, if not as many as I wish they had.  I'd say all of
the treatments I tried were worth trying.  The important part was
figuring out when to give up on a treatment that wasn't working
and to quit spending any more money on it.  Everything I tried
was worth the money I spent, but at some point it was also worth
not spending any more money on it.
  There are times when you talk about your headache as if it were
a living entity, so I have to ask, who would play your headache
in the movie version of your life?
  Oh man, probably someone who really grates on me like Tom
Green, Pauly Shore, or Adam Carolla.  Funny that I chose all men.
I didn't do that on purpose!
  The question I'm sure all readers want to know: how are you
feeling now?
  I'm doing pretty good.  Through a combination of medication and
lifestyle changes I'm able to keep the pain down to a 1 or 2 out
of 5 on most days.  However, it still flares up if I get really
stressed out, dehydrated, or if I wake up earlier than normal.
That's my most common headache trigger, but at least I have a
medically sound reason to sleep in.  Chocolate and Vicodin is
available in bookstores now.
  Rachel Kramer Bussel is an author and editor of over a dozen
erotic anthologies, most recently Hide and Seek and
Crossdressing.  She hosts In The Flesh Erotic Reading Series and
is a former sex columnist for The Village Voice.
  B plus Alterationet Mobile Edition
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