Sunday, November 30, 2008

We're desperate -- Get used to it.

you should be here to give me,
hold me as I long to 
be tied up and
filling every inch of my 
body with it.
that or fill my belly with
and hide under a veil of bubbles
I want to kiss kiss and become
in the songs that saved my life fifteen years prior.
longing to be touched until I am bruised so 
I turn the sound off
and ignore my calls.

Saturday, November 29, 2008

The Universe does it again.

The Universe is giving me everything I want.  That is, everything it's got power to give me.  It's been the people I randomly come across, the books I find, the songs I hear and the way the snow sparkled this morning like I was looking on it with the innocent eyes of a child. 

Appropriately, I flipped to this tonight.  And it all just clicked.  This one is Kerouac.  This one is for Paul (of course it's for you, Q):

How to Meditate.  
---lights out---
fall, hands a-clasped, into instantaneous
ecstasy like a shot of heroin or morphine, 
the gland inside of my brain discharging
the good glad fluid (Holy Fluid) as
I hap-down and hold all of my body parts
down to a deadstop trance -- Healing
all my sicknesses - erasing all - not
even the shred of a "I-hope-you" or a 
Looney Balloon left in it, but the mind
blank, serene, thoughtless.  When a thought
comes a-springing from afar with its held-
forth figure of image, you spoof it out,
you spuff it out, you fake it and 
it fades, and thought never comes -- and
with joy you realize for the first time 
"Thinking's just like not thinking --
So I don't have to think

And, as usual, I'm getting everything I want but not a tad bit of what I need.  I'm dwelling on the past because my hopes for a future feel as if they're dwindling with every struggled breath.  I miss the people I've loved and lost touch with.  The men I told I'd marry.  The women I've given orgasms to.  The jobs I've enjoyed.  The moment I had the seemingly perfect life of a house, a husband, a bundle of kittens and a fucking hot tub.  I miss a time when food actually tasted good and my voice was strong enough to sing.  It's all been dwindled down to nothing.  Abandoned for fear that I might die and break the hearts of lovers (I would marry you in a heartbeat if I knew I could give you the life you deserve), come so hard I cry, miss too much work and get fired, over indulge in the warm waters until my hands become unrecognizable.  

On the other hand everything has a certain intensity to it now.  I'm falling in love with multiple people at once and the friends who I have been lucky enough to stick by my side through a tireless six weeks of hospital visits are the most incredible friends a mutant could ever have.  

So, let the days pass, let these tired lungs live.  Let the snow shine and the sun sparkle.  Let the narcotics overcome the pain and most importantly, let this pass.  

Thursday, November 13, 2008

The hospital life.

I am readmitted as of yesterday afternoon.   My PFTs are scarily low.  My lungs sound worst than they did upon discharge.  I asked my doctor this morning if quitting CF was an option.  She laughed uncomfortably.

I can hardly keep my eyes open.  I'm needing more pain medications than I can handle.  I'm zoned out but out of pain.  Trade off.  

It's all a trade off.  

Friday, November 7, 2008

Death of a Nutritionist

Okay, not really that dramatic, but I have had a sordid history with nutritionists throughout my life and when I moved back from San Francisco my hospital had placed the most excellent and awesome nutritionist I've ever met on my care team.  She has found a new job at a food company and today is her last day here.  I have written an ode to her that I thought it important I share.  

Roses are red, violets are blue
Oh, Smelly Shelley, your CFers will miss you.

You gave excellent advice on how to lose and how to gain. 
You're the first dietician that did not drive me insane.

You were balanced and fair, never force-fed me a Scandishake,
your nutritional advice I'll always trust and always take.

You're a great nutritionist but as a person you're incredibly neat.
My heart stays close to your heart with your new career in meat.  

Thursday, November 6, 2008

Home sweet mother fuckin' home!

I am being discharged tomorrow.  That is the good news.  The bad news is I have to return Wednesday of next week for another several weeks of treatment.  I am going to spend the next couple of days snuggling tight with my dogs, dyeing my hair, listening to rock and roll music so loud it's going to make my ears bleed, eating real food... screaming, laughing and dancing best to the ability of my shitty lung capacity.

I spoke to the lung transplant team today.  I am not a candidate for transplant.  My file has been given a huge red DENIED stamp.  I sort of knew that's what I would be told, full well knowing my kidneys are too poor to endure the transplant and the ensuing medications (the little fuckers).  Though it was half expected it still stung like a million bee stings and I still sobbed hysterically.  

So now the question is if I don't have a miraculous transplant recovery from this disease to look forward to, what now?  My lungs are rotting away at an alarming rate.  I've wrapped up three weeks of antibiotics and aggressive therapy with even cloudier chest films and more pain.  I cough up blood every day.   I tried escaping the cannula to shower earlier this week and found my sats on room air to be 73% afterward.  This was so fucking disheartening.  

How am I going to do this?  Two days ago I had an epiphany while riding the elevator to the ground floor.  The transplant scenario played out in my head and for the first time in months I had a glimmer of hope regarding my breath.  I thought, I can tough this out with the hope of transplant.  The hope of that elusive and deliciously indulgent "first breath" I've heard so many post-transplant talk about.  The hope of replacing these calcified airbags with lungs stolen from an accident prone nonmutant.  Just as fast as I came to not only accept, but get excited about,the idea of completely foreign lungs in my body, it was whisked away by a nurse I'd never met before who awkwardly patted my forearm while I cried.  Then she had the audacity to as if I wanted the notebook full of transplant information.  Needless to say it's in the trash.  I asked her to throw it away on her way out.  

The next couple of days will be a welcome break.  I am going to assess my current situation and try to realistically figure out what I want to do.  I can take this.  I know I can.  It's all in how I choose to react to the situation.  Today I hid under the covers and played dead but something tells me I'm not going to continue to live my cystic life with the coarse wool hospital issue blanket over my eyes.  

"When we breathe, we hope."  --Barack Obama, November 5th, 2008 

Tuesday, November 4, 2008

Same old shit!

Nothing beautiful or poetic to say today.

I snuck out of the hospital this morning, tank in tow, to cast my ballot.  I found myself praying before I checked the box for Barack Obama.  

I begged my doctors to let me go home Wednesday morning (tomorrow).  I'm not making it out yet.  My lung functions are dragging.  Everything about me is completely exhausted.  

I just wish I had something wonderful to say, some sort of good news but I don't.