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.  

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.  

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 

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.  

BOR-ING!  

Breaking up.

I'm sorry.

If you voted Republican, or plan to do so this following week, we can no longer be friends.

It's 7am, do you know where your cotton candy is?

Last night I watched Mr. Magorium's Wonder Emporium for the hundred and seventieth time.  It's hokey, and goofy and dopey and magical.  There is a beautiful scene dealing with death, and I think it's such a gentle way to introduce death to children.  Mr. Magorium has a great monologue which I will share.

When King Lear dies in Act V, do you know what Shakespeare has written?  He's written, "He dies." That's all.  Nothing more.  No fanfare, no metaphor, no brilliant final words.  The culmination of the most influential work of dramatic literature is "He dies."  It takes Shakespeare, a genius, to up come with "He dies." and yet every time I read those two words I find myself overwhelmed with dysphoria.  And I know it's only natural to be sad, but not because of the words "He dies" but because of the life we saw prior to the words.  

In my own life, I am doing fine.  I feel as if today might be a turn around day for me.  Thinking of ya'll.  Thanks for reading.  

ALL THE LOVE I CAN GET

Sudden change of events here.  Will start the transplant listing process near the end of this admission.  Have been awake all night coughing up blood and wondering if I'll be well enough to wear my brilliant costume on Halloweenie.  I also made plans with BFF BEN to carve pumpkins with his nephew but that may go down in the shitter too.  Been unhappily blazed on morphine and a variety of other narcotics over the last couple of days.  Breath has been an unusual struggle.  I'm attending a short AA/NA meeting tomorrow night if I can handle leaving the hospital for a short while.  I will, of course, have oxygen and my IV pole in tow.  I'm trying to convince my mom to sneak the dog in to visit (the OG/OD [original gangsta/original dog] Crusher) and that in itself will likely make the huge hole in my lungs that's causing a massive bleed close up all on it's own.

My latest financial struggle has been regarding trying to get a replacement Vest machine for the one I have had for the last fourteen years.  I got one of the first models and while it still turns on and shakes, it's lost any control over tightness and the frequency definitely lacks.  Hill Rom acts so wonderful when you first talk to them-- they'll do their best to make the process easy and as the woman on the phone told me, 'rest easy!'.  I had to sign a letter saying I was willing to accept any financial responsibility and copay left over by my insurance company.  This worries me-- I am already in debt from a combination of medical bills and inconsiderate spending and my income is a joke.  Yes, I work once a week but I am getting paid $2 less than mim. wage an hour and these shifts are generally less than eight hours each.  I have social security income which is necessary to ensure I have health care, but my SSI is much smaller than even a humble income that would allow me to live away from my mother's house, let alone pay any other bills on my own.  I am paying my bills fine now, but my mom is having to slip by without charging me rent and it is often that I need her help buying the copious amount of groceries I go through.  Anyhow, the point of this is that it turns out my health insurance very rarely accepts a request to replace a Vest machine.  They will buy the first one but it is very infrequent that they will cover the cost of a replacement.  The year I got my first Vest it was still very new to the market and because of it's outrageous cost, a lot of mutants had trouble getting them.  At around $17,000 my insurance denied my claim, as well as about 20 other individual cystics in my area.  Luckily, we were bound by some sort of lawyer magic and filed a joint lawsuit against the State of Colorado.  It was basically, pay for this shit or you kill us.  They paid, somewhat quickly and quietly without a fight and I never saw a day in court.  But I don't know how I'm going to go through that again, and on my own for God's sake if that need be.  I spoke to a really nice woman in the financial department that assured me with such a sweet voice saying, "Oh, honey, don't worry, if your copay exceeds $5,000 a month we have a great program to help lift a small bit of that financial strain."  

I really don't think I've laughed so hard in weeks.  I gasped for air after that fit, which turned ino a coughing fit and then into a few moments of trying to catch my breath and I said, "that's really wonderful seeing as my income is less than $7,000 a year." 

So what if it will help me live?  So the fuck what.  They (the state, the pharmacon, the anyones, whobodies, fuckers and whoeverelses) don't seem to care so I suppose why should I?  Hah.  

Despite these set backs, I'm (and get ready for an AlAnon term) still moving my feet.  My body feels so disconnected as do my thoughts.  I am scared of the possible addiction I have to face if I am discharged with pain medications but I will face that when I get there.  My heart is warm, I am feeling hopeful and before I sprout more flowers from my ears and retard my readers with more rainbows out of my asshole I'm going to close this.

I hope you are all well.  I certainly am not.  But there is always hope for recovery.  We've all gone down this road many many times.  And if there is one sure thing about this nasty fuckpiece of a disease, it's that more often than not it's going to turn out exactly like you hadn't anticipated it to.