See you next year.
Thursday, December 25, 2008
Tuesday, December 9, 2008
I am back in the hospital for another go. We're trying an antibiotic that I am have in the past been very allergic to in inhaled form. We are trying it intravenously and so far I have been fine. I'm having my second dosed infused as I type. It's very toxic to the renal system so we are monitoring my creatinine very closely. Please keep fingers crossed that my kidneys don't fail.
I will be here until around the 24th. I will be discharged for my birthday (the 25th), and then the 26th J. and I are flying to Dublin, Ireland for a much needed, almost two-week excursion. I know my health is hardly in suitable shape for travel but we have decided sooner than later (when I am too sick for such a thing) is better.
It's cold and I don't mind being bundled inside. Though I don't celebrate Christmas I am looking forward to seeing family for the holidays. I'm also looking forward to kissing Piper in the middle of an ice skating rink ASAP.
Oh, the romance!
Sunday, November 30, 2008
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 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.
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
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
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
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
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.
Wednesday, October 29, 2008
Monday, October 27, 2008
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.
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.
Tuesday, October 21, 2008
I just saw a blurb on the morning news about a website where you can send out e-cards (yes, like those irritating dancing/singing frogs and shit that you send out as a last minute "oops, I forgot today is your birthday/anniversary/jerk off day! Here's a last minute card!" to notify your past sexual partners that you have recently been diagnosed with a sexually transmitted disease. Having recently had a treatable by 'cillin STD in the last year I will say it's horrible to have to face your partner to tell them (especially when you know it is their fault). How funny though, to send a card to their inbox so nonchalantly like, hey! here's a picture of a really hunky guy's muscular back, have a great day! Oh, and by the way, I have the gunk down there, you might want to get checked. Imagine the weird build up and let down of getting that in your inbox. The series of realization, anger, panic, etcetera.
inSPOT.com "Tell Them" - Interestingly all the cards I can find are really homo-centric. I am especially amused that they are so gay. I'm surprised they don't have different cards for different diseases. Hey! I've got crabs! Shave that shit and call a doctor 'cuz you probably got it too, sucka!
Sunday, October 19, 2008
I have been putting together my living will and a list of phone numbers and emails for my mom to contact when I pass away. Have no fear, I'm not that urgent. In fact I am better than I was earlier this year, and between you and me, I thought I was a goner then. There are little things we mutants tell ourselves that represent worsening health. For example, needing a port or needing O2 twenty four hours a day. For me it's always been having visible changes on my x-rays. Earlier this year it was grotesquely massive lumps of pneumonia all over my left side, causing severe pain and shortness of breath. It was scary, I was needing more oxygen during the day then ever and just a few short steps were sending me into a breathless panic.
Here I am now, feeling awful yet better than I was from March on. My x-rays are still changing, negatively, I've still got the nose hose and I'm still in lots of pain. The morphine before treatments of routine vicodin seem to be helping physically but I'm worried about the power struggle I will have if I need to go home with oral pain medications. Part of my addiction issues absolutely include pain medications and sleeping pills. I can run through a months supply in a few short days. I have no self control. A big part of my sobriety is trying to control those urges as well. It isn't realistic to think I'll leave here able to vest or have coughing fits without the need of such medications. I'm going to face it when it happens. I'm scared, yet feel hopeful that I will do the right thing for my body by not abusing them.
Rhi and Kevin left a beautiful comment on my last blog. They visited me a while back and Rhi hit a very scary roadblock of sickness. She found herself hundreds of miles from home sicker than she'd ever been before. And yes, for once, I was not the sickest girl in the room. And it was strange-- advocating for someone else, carry someone else's O2, holding the arm of someone with the familiar struggle for breath. It was a beautiful lesson for me, somewhat humbling. And Rhi made it through like a champion like many of us do over and over again. She was graceful and kind, polite to the healthcare workers at my hospital that I wanted to strangle for their ignorance or attitude. She talked about how my hospital was so much nicer than hers and it brought me to an understanding that where I am now is not a bad place. It's familiar and full of loving staff members who know me.
Upon admission I entered my hospital room to a freshly made bed with a small bowl of cinnamon bears on it. My nurses, or should I say my friends, remembered them to be my favorite candy. They left a small clusterfuck of these tiny little bears for me to ingest as a warm get well gesture.
I feel thankful for what I have. My lungs and heart and kidneys and pancreas and all those little fuckers of organs in my body are doing an incredible job despite everything. They haven't given me much but they've given me everything they can and for that I am truly thankful.
Thursday, October 16, 2008
Saturday, October 11, 2008
It's funny how so easily I can trade one vice for another. I am in bed under a warm down comforter nursing a bottle of cough syrup. Funny for a few reasons. For one, and as the far most important point, I don't particularly enjoy cough syrup or the hazy fog is gives me but I've been fighting a terrible cold for two weeks that has now dropped into my lungs. For second, and also important to note, at this time I would generally be nursing a hot toddy or more likely a straight glass of whiskey on my more usual sick nights. Perhaps sobriety has done some good. My body is definitely thanking me, my kidneys have not failed and I'm having less pains in my stomach. My memory has been shit in these twenty-some-odd days but it's been worth it. I carry around a small pad of Hello Kitty paper that I've kept notes, some elaborate, some of no more importance than what I would like for lunch that day. Nonetheless it's been a great help. And everyone I've spoken to with any amount of sobriety under their belts have said the first couple of months are particularly difficult.
Which brings me to a very crucial thing I must state, and please believe this is not a statement made in vain or self denial, this is a discovery I made about twelve minutes into my first AA meeting: I AM NOT AN ALCOHOLIC. I'm simply not, I can go many stretches without drinking, I can have one drink, I don't have any situation of significance involving drunken lunacy in public (privately is a different matter). No one in my life believes I need AA, which is making the commitment that much more of a challenge. My mother continues to get completely shit-faced in my presence not truly understanding the struggle I am dealing with. I just simply felt the drinking was out of control, I felt the wake-up-take-a-swig-of-whiskey-to-numb-the-aching-throat-from-cough was a bit unmanageable. It just all felt wrong and I can't pinpoint an exact second I realized I had a problem but I will be the first to admit my addiction issues are far less severe than 9 out of 10 people in Alcoholics Anonymous.
Sobriety is in some senses quite refreshing. I handled beers all day at work one weekend and didn't drink. I wanted to, but I held off despite the crack of the cans opening all around me. I watched bands play that night, amazing musicians filled with rock'n'roll fury barely witnessed once a year, and I was free of toxins. Seeing a band I love play with no booze, no weed, no hallucinogens or any of that in my system was incredible. I couldn't believe the jolt I got from the music alone.
And so be it. I would like to think one day I can switch to a social drinker in full control living life gracefully and undertaking a night of drinking with caution and care but more than that I hope that I will always remember what it's like to feel this way. What it's like to know that I'm not destroying my body from the inside out.
Sunday, September 28, 2008
Close to a fortnight without substances or drink, I'm feel disoriented and heartsick. I've taken more sober falls in the last two weeks than I have in my life. My knees are black and blue. My elbows and palms are skinned. I tripped on the sidewalk outside a bar tonight as I was walking by and everyone in line laughed about how drunk I was. Yeah. Sure.
AA sure puts it's participants through the fucking ringer. I went in expecting to find distractions to drinking-- eating lollipops, chewing gum, avoiding the liquor store (although I swear several times my car has tried to drive me there on my own), cutting off from non-supportive friends. But no. None of that has ever been suggested (well, my newly found sponsor, Angel, told me that since alcohol is something like 80% sugar eating lots of candy helped her during her first several months).
Their mission is clear, it is a program for those willing to do the work to quit drinking, and they adhere to that promise. This is a somewhat ambiguous promise until you begin to submerge yourself into the steps and you realize that not only am I going to be depressed because for once in whatever amount of time I can't drink whiskey in the tub, but also because after you accomplish step one (simple! I have admitted I am powerless over alcohol and unable to manage my life on my own), you start to step two and three and so on and it seems like the deeper I am getting the more I am regretting entering the program. It's not that I am even having that difficult a time not drinking, it's just this shit I have to sludge through. I have to map out my resentments and realize that I don't drink to drink, I drink to cope. I never drank to have a good time, I always drank to tolerate my body. The heaving lungs get lighter with every swig and I fondly remember my days of trekking San Francisco just how fucking fast I would fly up Lombard with a half a bottle of bourbon in my system. It is little moments of forgetting the pain of getting out of bed in the morning, forgetting that my kidneys don't understand their function, forgetting that my lungs are filling faster than I can manually clear them... forgetting that I am real, that I exist, that I am alive and mostly, that I am dying.
A slow death, I can say for certain. So many people in these meetings have said that they were waking up in the morning during their darkest days as addicts and alcoholics and they would curse their higher power for allowing them to wake up that morning. I thought after hearing that several times it was positive I haven't often felt that way until I realize my reaction to waking up every morning is often, Of course I'm alive. Of course I'm waking up. I'm destined to live the life of a fucking vampire. I'm going to live with this shit for-ev-er. Somehow I think that's not much healthier than wishing death.
Back to this whole step four, mapping out resentment. AA treats the drink by making you dig so deep into the soul you'll end up wanting to die before you make it through. I think that's the deal, at the very least I have spent the last three days laying on my couch all day wondering why the fuck I am who I am and why in the fuck I've been such a selfish cunt for so many years.
I don't resent people. Well. That's not entirely true. I do resent my ex, J. Not for who he is or even what he did but how his actions changed my view of my disease. I thought I was over being angry about my disease when I happily left my teens for my twenties. That shit, I thought, was buried in dust along with Sta-Prest Levi's and hipster moddy square toed shoes. I left it with the days of missing curfew and telling the world to go fuck itself. Slowly it crept back though. J resented my disease. He resented, still presently does as far as I know, what it was doing to me emotionally, what it was doing to my body, and mainly what it was doing to him. It completely disabled him from any capable human emotional reaction. Hospital visits were few and far between. My vest machine would move from one end of the living room to another, far less visible and much more inconvenient spot. My nebulizer cups would be put away faster than they could dry. After each move my medications were always given their own neat little shelf-- hidden away behind a cabinet of some sort. I recall once, after a particularly noncompliant couple of months, I opened the fridge to find my Tobi and Dnase missing. He'd thrown it away for "more space". You never used it anyway, he said. And who was I to argue? The expense of the medications seemed a joke because he was right-- I didn't ever use them and who am I to tell him he's wrong throwing out something I didn't ever touch?
My cough is what bothered him most. Eventually we stopped going on dates to movie theaters. One particularly cold first of January we were driving to the bar to meet a few of his friends. Looking forward to meeting them, I felt fine but was having a terrible coughing fit. That cold air set it off and I couldn't seem to stop. Are you going to cough like this all night? Are you okay?, he slowed the car. Amidst a cough, a gasp for air, another cough and a sort of laugh, I said, I'm fine, let's go! and that's when this horrible secret came to light. He turned the car around and said that my cough made people in public uncomfortable. He was ashamed of it and nobody knew I was sick. Not his mother who I'd met on several occasions, not his best friend who I'd shared many stories with over beers. Not his brother who I was growing somewhat fond of. Nobody. It was a shameful, secretive thing that only we were to know.
That changed everything. I loved him deeply still and decided, despite the guilt I had knowing I'd always be his disfigurement, to move across state lines with him.
J made me resent my disease like I never thought possible. It brought up everything I'd ever felt sad because of relating to illness. It made me feel shameful, as if my illness were my fault and something that should be kept hidden. I hated it. I hated him for making me angry with the biggest problem I am ever to face especially after feeling like I had cleansed myself of any confusion or ill will regarding it.
So, Bill W., one of the founding members of AA, believed that people drink or abuse drugs because they have resentment. Some people were molested, some were abused, some had too much too young too fast. I have this shitcocksuckingmotherfucking disease that I can't get rid of. It's eating me up inside and now it's eating my brains too, and my soul at a whole new level seeing as I'm supposed to battle this shit David and Goliath style until I can overcome it and lose the urge to drink.
What the fuck? What the fuck am I doing? I would rather drink and ignore this shit. And if that makes me a bad person, a selfish person, a tiny person so be it. I will be fine with being the worst piece of shit fatherfucker in the universe as long as I don't have to face this shit.
Well. Maybe I won't be. I'm lazy. I'm an alcoholic. I don't drink to numb pain, I drink to survive. And stepping down from this will make me lazier that I've ever been in my life. It will make me more of a coward than I thought even possible. Stepping up and taking this challenge is going to change my life, I know it will. It's not the drink I miss at this point, it's the beauty of the ignorance I've held in my heart, mind and soul for years passed.
I'll attend another meeting. And another. And slowly I'll creep through these steps. I just can't believe it when someone says they got through these steps in less than a month. I have a faint grasp on the idea that I can have some sort of peace if I follow through with this. I have a strong inkling that I'm forever the shell of a dead person walking if I don't.
And no, I haven't found God yet. Don't fret! Hail Satan!
Thursday, September 18, 2008
Thursday, September 4, 2008
Sorry to have dropped the ball on DNC blogging. My kidneys failed and I needed to take care of my health versus run around town. Interestingly, most of the local people I talked to about the DNC were more excited about all the partying they did than the history that was made. Kind of sad.
Wednesday, August 27, 2008
--Barack Obama shows up during Joe Biden's speech, after telling everyone he wouldn't be in Denver until tomorrow.
--Rage Against the Machine plays a free show at the Denver Coliseum, as presented by veterans of the Iraq war who are against the war. The show is wrapped up with a peace march from the Coliseum to the Convention center, lead by military personnel in their uniforms. It was a powerful message that I hope is being heard by people world-wide.
--Andenken Gallery's show hits it's plateau this evening with a free show at 30th and Larimer featuring the Silversun Pickups and a few other big groups. Didn't go, but heard it was awesome.
--Again, for you starfuckers: Apparently an Angelina Jolie sighting or two around town (I still have no idea if she is actually here) and Alan Cumming and Anne Hathaway spend some hours last night at local douchebag hangout Rockbar on Colfax. So not rock, despite having booked a full night with Scarlett Johansson and her homies this week.
--I got stuck in insane traffic near the convention center. Lots of street vendors, a crazy amount of people and of course, lots of politicians.
000 no links tonight, sorry 000
Tuesday, August 26, 2008
--Stencil artist Shepard Fairey (of OBEY fame) was arrested last night bombing in the downtown area while being filmed for a documentary. The artist and film crew were arrested, booked and released earlier today.
--The Manifest Hope show at the Andenken Gallery is completely mind-blowing. Inspired by Barack Obama, there are many pieces from internationally known artists of many different medias and genres. It was inspiring and beautiful. The new Andenken space is amazing.
--Young protesters chant FUCK FOX NEWS repeatedly during live news feed. On-the-scene anchor makes a complete jackass of himself by admitting his confusion that not all Democrats supported Obama and later, by yelling, "Don't you believe in freedom?!"
--Michelle Obama makes an "inspiring and spirited" speech at local church. I don't get invited, but get stuck in the traffic from it anyway.
--Speaker of the House Nancy Pelosi loses her shit.
--Anarcho-crusty punks get tear-gassed by DPD and arrested by the dumpster full at Civic Center Park last night. Kids were handcuffed to trees while cop busses made their way to pick them up. The prisoners were likely disappointed with the jail standard bologna sandwich, warm carton of milk and waxy apple served for dinner.
--Huge presence of pigs and protesters alike. So far I have seen anti-abortionists, Communist party members, Anarchists, Hippies...
--And for you starfuckers... Danny Glover, Kal Penn, Cyndi Lauper, Spike Lee, Alan Cumming, Susan Sarandon, Daryl Hannah, Oprah Winfrey, Scarlet Johannson and many other super famous prettier-than-us people are in town to support the Democratic party.
--Right-to-lifers pull idiotic stunt in Jefferson County this morning. I would likely approve if they started adopting American kids and paying the medical bills of the pregnant and poor. Or, the men magically grow ovaries.
More to come soon.
Monday, August 18, 2008
I can't help myself. Initially I wasn't going to write about this but I can't stop thinking about it. About her. Not this manipulating, lying, overweight coward of a woman-- but the young and vibrant girl we knew as sickly Pepe. Pepe who loved horses and needed lungs. Pepe who had MRSA in her blood and had a rare blood type. Pepe who spent months and months in a lonely ICU bed with one lone friend, the suicidal but sharp Blake (who I made a heroine of in my head and thanked several times for doing what she did for G.). Pepe who beat Paul down until he broke. Pepe who made Paul's transplant a failure. Pepe who stole our hearts and ultimately broke them when she was outed as a complete liar; a well researched fabrication.
We were all fooled (were we?). We all saw the holes in the stories. I hear her tiny voice on the phone and said, "Wow, your voice sounds really strong despite what you are going through!" What I thought in my head was, this is the first cystic I've ever talked to who didn't have a growl in their voice, that familiar CF voice.
I keep thinking about how we've been walked on. I can't sleep tonight unless I think this out here. The whole of it: the who, the what, the where but mostly the why.
Why would someone intentionally destroy people this way? Why would this awful bitch choose MY disease of all the diseases in the world?
Obviously this person is very sick. This is shown clearly through posts on a new community she is getting ready to destroy posted less than a day after being outed as a fake (Asperger's? Really? Perhaps Paul taught you a thing or two about that?)
This proves to me that she doesn't regret a moment of this. Gina Fiorentino of Saint Michael, Minnesota: That sick, twisting feeling in your stomach is not because you feel bad about what you've done. It is because you've been caught. It's because nobody loves you like they loved Pepe.
Monday, August 11, 2008
And I find it kind of funny, I find it kind of sad, the dreams in which I'm dying are the best I ever had. I find it hard to tell you, I find it hard to take. When people run in circles it's a very very mad world. --Roland Orzobal.
I suppose I don't give up after all. Not this week, at the least.
***Photographs removed on Monday, August 18th so that deceitful liars do not steal them and portray them as photos of themselves.
Saturday, August 9, 2008
With the recent passing of a cystic I didn't even know, had never even spoke to, I'm fed up. I'm done with it. I sat my ass on my couch and cried for a good hour today just thinking about what a miserable disease this is. I thought about how I don't mind my insides rotting... *** *** *** ******, and all the rest of you who I care for so deeply... I don't want your life to be wasted.
I want you to be well. I want you to be happy and care free.
In these wishes, I'm feeling the need to disassociate myself from the online community for a while. It's just all too much. I'm feeling like Cat Stevens. My heart is too big and too open to let more sick and dying people in. I have a hard enough time caring for myself at this point that somehow it seems useless to form more relationships with people that will leave me.
This is an absolutely insane conclusion, I know. I know because I've had people leave me for the same reasons. I'm not leaving anyone-- I'm just closing the option of adding more dead friends to the list.
It's all too much.
From blue lips I say, I am not leaving you but I want you to live.
***Edited on Saturday, August 16th to remove name and web address.
Sunday, August 3, 2008
If you haven't heard, there's been a revolution. It's old news now, and almost silly to bring up again for those of us that have been following it but I've had sort of an interesting series of thoughts relating to it. Essentially, a large group of cystics left a for-profit site after a series of incredibly offensive and insensitive actions made by the administrators. You would think that a site for patients with cystic fibrosis would be run with their best interest in mind and possibly even run by a person with CF but it is not. About a decade ago, Medrise purchased somewhere around 120 website URLs containing the names of specific conditions and diseases. On these URLs they built what have been disguised for a time as safe haven communities for those dealing with these ailments as well as family members and loved ones. These sites are sponsored by various pharmaceutical companies who are allowed to poll the site and send out emails to users relating to their products. The Medrise sites are for profit.
I was talking to a few of the other mutants tonight and Sandy brought something huge to my attention. Medrise bought cysticfibrosis.com and many other sites for profit. Essentially, they have bought what we live with every day for profit. They've bought our disease to make a buck. To act like it is a nurturing community is a joke. They have walked on many of us, acting as if their site is better off without our brilliance, our experience, our tenacity.
While there are many users who have defected like myself, there are many users who have chosen to remain a part of their site. Many of these people are also using a forum that the mutants have gone to. Let me just say that while I can't control the Internet usage of people, I find it insulting that some of these people are having their cake and eating it too. Each time you visit their site you leave a footprint that encourages sponsors to give them more money. Many of the people remaining on the site are mothers of children with CF, spouses and a few individual cystics who have specific loyalties with the owners of the site. The parents of are important, spouses even more so, but they can never really know what it's like to be a mutant.
I'm over the situation but to think that these people have purchased my disease is sickening. They've bought it, they own it, and they don't even get to live with the dirty grit of it. Somehow they don't even deserve to be cystics.
Because we cystics... let me tell you. We know something other people will never know. We have secrets about life that the people of CF.com don't deserve. I wouldn't wish rotten lungs and pancreas on those people any day. Because they simply don't have the strength to handle it.
How it feels to be dry, walking bare in the sun. Every mirage I see is a mirage of you. As I cool in the twilight, taste the salt on my skin. --The Blood, The Cure.
I'd taken my cannula off for a break for an hour or so. My nostrils are bleeding dry. I'm sick of the tag along tank. My lips turned blue during conversation today. Bunny looked stunned, then sad. He kissed my forehead and said nothing after I reluctantly put it back on.
I said, I thought I could go without.
He again said nothing but his look said, obviously, you cannot. And so we both hung our heads in frustration.
Saturday, August 2, 2008
On the first of the month
pay my bills
things were fine and
you were mine
think I got all my shit in line...
I'm still in debt
but I don't mind.
...having 'roid rage.
...bummed, but not surprised, that people have seemed to move on in life without me.
...still needing supplemental oxygen.
...ignoring medical residents and going straight to the source.
...craving the drink.
...bummed about the Bruce Willis marathon still running on USA.
...missing the Satanic Pooch Posse.
...bruised to all hell from heparin shots.
...feeling the least noncompliant I've been in months.
...overly horny and underly sexed.
Monday, July 28, 2008
I see the passionate who killed themselves with drink, Or drugs or speeding cars in order not to think they must have felt like there just nothing was to do
Don't die, don't die, don't die, don't die...There's something wrong here where the best ones want to go. --Richard Hell.
Looping over and over in my head
A circular motion hits and beeps
like a pump infusing blood
or a warning in an automobile.
I resisted the urge to turn left into the parking lot of the liquor store today
Instead I spent my whiskey money on sustenance and root beer.
I felt a pang of sadness in my heart, knowing
the full lips pressed to glass
the sweet sting my tongue would
the fiery slide my esophagus would miss.
instead i would like to call you up
ask you how your day is going
invite you over to my place
and tie you up to the tiny bed of my childhood
until you start crying or coming
whichever satisfies me equally
just as long as I can take some from me
I'll cut you instead of me.
place it on you from
my chest to your back
you seem so willing.
it was difficult
it took time
but I resisted just this once
now to multiply it by a lifetime.
Friday, July 25, 2008
March 28, 2008.
I woke up this morning with tinnitus so bad I thought the birds were going wild, chirping, outside my windows. Even with months off of Tobi the poison lingers. The ultimate battle between the sun, Spring and the last of Winter is on. two days ago it was sunny and warm. I wore a little summer dress, painted my toenails (which gets increasingly harder as I age-- being bent into a position where I can't breathe just to have pretty piggies is just silly) and wore sandals. I traipsed around town running errands feeling like the prettiest little Springy thing alive. Of course yesterday was cold, gloomy and overcast.
Feeling like a less terrified Jacob, aural hallucinations and all, I also awoke to my oxygen cannula wrapped around my neck. Now, I used to be an incredibly restless sleeper as a child. I would fall asleep in correct position and wake up the following morning with my head at the foot of the bed and everything tossed onto the floor. I remember running in my sleep, swimming, jerking away after a dream of an endless fall. I suppose adjusting to sleeping with someone next to me in bed over the years has calmed me but I still have the occasional sleepy thrash. However, it's been years since I have woken up with my cannula somewhere other than my nostrils.
In December my sats dropped to an all-time-room-air-low. I've always had high sats no matter how sick I've been, impressing nurses and doctors alike with numbers soaring in the high 90s. I dropped into the 80s and have recovered some but soon realized after I should likely be on oxygen 24 hours a day. I know it would make me feel better but wearing oxygen during the day is exactly what crosses the line to healthy and functioning to completely diseased. Some of us won't get ports, some won't have sinus surgery, others refuse hospitalizations and do infusions at home instead. We've all got our limits and mine is looking sickly.
I told Q about my recent dreams. Wisely he said, you're having tube dreams. Nearly each night I dream that I am wearing oxygen but instead of being hooked up to a portable I am hooked to a stationary out-of-sight concentrator and there is miles of tubing following me where ever I step, getting wrapped around bookshelves in the Tattered Cover, the cookie and cereal section of my supermarket and even more horrifying it's wrapping itself around cars in a parking lot. In the back of my mind I am thinking, I have to retrace my steps and collect my tubing, and most importantly, I must slow down. But I ignore the anxiety and just keep going and going and going and no one around me seems to notice that I've laid tracks for thousands of steps behind me.
Awake, on an outing with my mom one day, I was so winded from a small walk, feeling blue in the lips and like I was going to collapse in the middle of the Container Store, simply searching the vast aisles for her, I saw something that made me forget I couldn't breath. A beautiful little girl of ten or eleven was running down aisle nine, calling in sheer excitement for her mother to follow, her nose filled with that familiar boogered plastic. Dragging a tank behind her, she was free and happy and looking like a normal little girl despite her baggage.
It made me think for an instance, if she can do it I certainly can, and in some sort of high I avoided running to her and taking her in my arms, likely sobbing and thanking her.
That fearlessness has now faded. Here I am, out of breath, needing naps every day, refusing to spend the night at friend's simply because I've got issues.
That little girl was so strong. I was so impressed.
I was that little girl once. When I was an infant, as a second grader, in junior high and again in high school. But can I be that little girl again?
Others can do it but it still doesn't make it alright for me. I still can't find the button to turn my concentrator on in the dark. I'll cross the line when it's absolutely necessary but until that day, I'll still have miles of plastic tubing haunting me each night.
July 1, 2008.
when I think of myself dead I think of frying pans. when I think of myself dead I think of somebody making love to you when I'm not around. when I think of myself dead I have trouble breathing. when I think of myself dead I think I won't be able to drink water anymore. when I think of myself dead all the air goes white. the roaches in my kitchen will tremble. and somebody will have to throw my clean and dirty underwear away. -Bukowski.
are all the rage
in my life these days
woke at four am puking
my guts out
and losing every
drop of anything wet
from every inch of my
called the doctor and said, please,
I think I'm dying
I think I'm dead.
then I spent four hours hooked
to tubing that fed me
and I slept under the guise
of anti-nausea medication that made my head
my mother sat by my side and
while I shifted
trying to find a spot to lay where it didn't
today is my sister's birthday
she's twenty nine
and I ruined the day
instead of baking the cake
I spend the morning and afternoon obsessing
and absorbed in my disease.
Thursday, July 24, 2008
I'll take Kerouac for a thousand. September 11, 2007:
I can't really figure out if the technology I use on a daily basis is a luxury or a hindrance. I see it off the highway in flashing billboards a hundred feet tall and luminous. It's in the dash of our car in the form of a disembodied robot woman who shows us, often times incorrectly, to our destination. I withdraw myself from the world with my headphones several times a week. It all gets tiring. I needed a break from the worn exhaustion in my thumbs from text messaging, the soreness in my wrists from sitting at the computer in an ergonomically incorrect position, the red mark on the side of my face from my cellular telephone. Today was simply a day where I needed a rest. More than that, I needed to spend the day with J.
I unplugged myself and we went driving. On the other side of the bridge we stopped at a beach I've never seen before. I plunged my feet into the sand, which burned until the weight of my body sunk them deeper into the coolness. There was a chill in the air and I was glad I brought my jacket. I stared with wonderment at the Golden Gate Bridge. I closed my eyes and listened to the waves hit the beach. We tried to pick out Robin Williams' home from the front line of mansions on the rocky cliff just West of the Presidio.
I took a picture in my head, then on the camera. How many times have I found myself flipping through the digital lineup on a camera when everything is right in front of my face? I tried to shake the feeling, putting the camera away. The wind got colder, pulling my trench coat open.
Over my shoulder I took a last glance at the spot where Kim Novak took a clumsy and trance-like tumble into the ocean. We drove on.
The streets are lined with eucalyptus trees and for the first time in a while I regret having lost my sense of smell. I rolled down the windows and desperately inhaled the air for some hint of it but couldn't find it. Later the highway is surrounded by wild dill, which I think I can faintly smell but I wonder if it's just my memory serving me well.
Nineteen thirty two brought the Bixby Bridge into existence and something like forty years later a couple of beats put it on the map, at least in my mind. [The bridge] came and went in a flash. I was staring over the edge the entire time at the rocks on the beach and the water violently crashing into them. I didn't know it was the Bixby and I didn't know we were over Bixby Canyon until we got to the Big Sur visitor's center and I looked on the map. I felt foolish like I had missed some signal or important call down to me from some dead poet.
Big Sur is a lazy little place with lots of tiny rental cabins and a gas station about the size of a toilet. There were unoccupied lawn chairs outside of the gas station which I can only assume become filled with locals on weekends, laughing at the tourists who drive out of the city to get some fresh air or become one with nature, or whatever the hell San Francisco yuppies like me are searching for. I did want a break from the city. I'm sick of the noise, I'm sick of the people, I'm sick of the concrete and I'm sick of driving around the block thirty seven times to find a parking spot. I think more than escaping the city I convinced J. to drive to Big Sur because I wanted enlightenment. I wanted, as a friend suggested recently, to meditate in the woods and come out feeling like a lighter, happier person. We filled our tank at the tiny gas station with the small handwritten sign stating "Pump first then pay."
Passing over Bixby Bridge on the way back made me hold my breath. I wanted my first trip across it to be magical. It was lackluster for the first time because of my idiocy, and subsequently lackluster the second time because, well, I'm not quite sure. I imagined Kerouac and Cassady living in Big Sur, staying near the subtle but somewhat breathtaking charm of the Canyon (so long as you know when to look and steal that moment.) I thought of their hard living juxtaposing the beauty of those woods. I thought of Cherkovski's Bixby Canyon Meditations and I repeated a mantra to myself, get it get it get it. Some spoke of it like it would change my life. I didn't get it. I turned on the GPS system to assess the quickest route home and to see how many miles we'd gone from our front door. One hundred and forty three miles. The robot voice instructed us to take a left and I half expected her to instruct another left after that, then another, and another until we end up right where we started.
Just as the sun starts to set, a brilliant round orange over the ocean, the regular aches of fatigue start like clockwork. On our way South earlier we passed a gentleman who had parked his red sports car on the side of the road and was camped out atop a bluff sitting in a foldable chair with a bottle of beer pressed to his lips, staring out at the ocean. Forty minutes later, now heading north, we pass him again. He is slumped in his chair, sleeping or perhaps passed out drunk. My headache slowly creeps from the back of my head to the front, my cheeks feel flushed, my body warm. My joints start to stiffen and my lungs want to stop. My cough produces phlegm that matches the green Army surplus bag I've pulled tissues from to spit in. I lay my head back and thank J. for driving.
In a tiredess I can only compare to inebriation, while I find it hard to put sentences together in my head let alone verbalize them, I realize just as J. exits the freeway to the city that Bixby Canyon did work its magic on me. It is miniscule and took a lot of consideration on my part to realize but it was there. That bridge brought a few moments of mutual awestruck silence between us, him and me. We drove across that bridge and both times, didn't say a word, just stared at the ocean and the rocks and the sun touches both our faces through the tinted windows of the car. For a split moment, that Canyon gave us something that has felt so distant for some time, but is warmly familiar.
Of course in my late realization I welcomed it with open arms and in response I give a silent nod to the writers who put such a ridiculous idea in my head in the first place.