Thursday, October 23, 2008


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. 


Anonymous said...

Is your old vest still working? If not I have my old one (still works) I was going to give to Sara. If you need it I will hurry up and get it to her to get to you.

About the financial stuff... shoot me an email so we can talk privately. I haven't been in chat hardly at all because life has been super hectic. Should be slowing down in a month, with any luck.
I hope today has been nice to you. It is freezing a$$ outside! BTW, I am working at Children's now... wave out your window if you see me! hehe

whatsherface said...

Sending you all the love I can spare...

whatsherface said...

After I left my comment, the new 'word verification' series of letters popped up and guess what it said? testie

ahahahahaha (So what, I can be a child if I want to!)

and now I shall type "testie" in the little box below and post my comment.

Shannon said...

thinking of you, Mel.