get out...get some

     Some days are worse then others. Everything hurts, still getting out  and still having fun, talking shit, and  getting loud. I enjoy those times as much as possible. Really but the next day or the day after that it hits and it hits hard.Fuck, I'd do it all over and do it more vivid , Yes? Go out big or stay home, yes? Make mistakes, take missteps, and trade resentment for remorse . Throw bricks from a glass house, run with scissors, slap the boogie man. Masturbate less- love more, spike the proms punch, and knock up your high school sweetheart. Live loud... make some noise... be heard even when you make no sense.Take a chance be strong  when you are weak and be weak when your strong. Go all in with the Devil and bluff Death...fight with you back to the wall. Make a stand... Alamo style... win, lose, fuck, fight ... make a mark? Who cares just get out and get it on. The secret of life may just be to live it with out regret or remorse while learning life lessons on life's terms. Maybe  try and be selfless ... To fight the self centered, selfish, self loathing thoughts and be  in the moment. don't get attached, everything changes.

   These Ra Ra moments brought to you by John Hughes and other 80's teen films.... Slow awkward applause , wait for it... wait for it... Okay... NOW

Green Bastard- Him and his rain-dog.

     This year I am having issue with The Holiday Spirit. The old standards have failed to get the Christmas juices flowing . I bought presents, wrapped them, put up a tree,  took pictures with Santa, Momma, and the dog to no avail.  Beers and cheers and TV specials ... Nothing. Miracle on 34th Street, Rudolf, Christmas Story... zip. We have snow and ice and everything is nice, but still nada. I have presents, family,   love, and yule tide but alas zip, zero, nada, nothing...nothing. I am starting to feel that the Grinch has stolen Christmas. Green Bastard, Him and his rain-dog. Maybe mistletoe, Christmas carolers, and spiced rum eggnog will do the trick. I haven't gone there I have not tried that ...  eggnog is thick and the rum warm but still, maybe?
I miss magic, believing in it, expecting it, getting it. Times have been ruff before, tuff before ,and even down right miserable before,but I was always able to find the meaning and spirit of Christmas. All is not lost... the hallmark channel is having a marathon of emotionally charged Christmas tales with nothing but heart tugging commercials... maybe that will end the Christmas drought. Dear Santa, all I want for Christmas is to believe.... again.

 Maybe this will help
http://www.noradsanta.org/en/index.html

fucked yet understood.

It's been a while sense I felt like writing...  Dull drums and sad sack why me's need not be shared... But they have been a huge part of the past few weeks. Been blaming the Christmas blues or as they say any time it snows, Seasonal depression syndrome AKA-SAD no shit no sun, bitter cold, and daily shrinkage make  us sad. Who knew?
   Went and did my acceptance new normal be honest end of me counseling... so much fun. Jill got me to talk about my snarkey sarcastic attitude  maybe  ease up on DR. Butch, head of pulmonary and world class douche bag ... In the middle of agreeing with her the truth came out... FUCK him... I went into a  tirade said some shit I had no idea I felt and well to vent must be good but when I left I felt emotionally drained... code for  fucked.
  Truth is I am dieing, they can't or won't help...maybe? My only option is to make the best of the good and curse  the bad. I mean there is still hope Dr. Bennett wants to ... Dr.Owens wants to... Jill wishes she could...I have a grand health care team, cept for  Butch,I am blessed with two hawk-eye type retired colonels,  big doc in a little coat, and strangely enough a councilor who doesn't clock watch and will let me stay till i have had enough and am back to normal levels of crazy. Jill actually ordered me to get the burger and beer special weekly at Hooters. You know your fucked when Hooters and beer are prescribed, fucked yet understood.

Hooters and Harry Potter

     Celebrated Thanksgiving with all the fixings last weekend. Family came from all over the east coast and south, well Tennessee and Virgina.. Kids I have known forever are now teens.  I have gone from a supper hero to just another old guy that interrupts their journey of mammoth importance or  the  Disney channel. We did have some fun and the yard is now void of dog shit... maybe that has something to do with it? HMMM never know. Was good to have the family together for the most part... some couldn't make it and by couldn't i have a torrid of descriptive I shall not use. Needless to say they stat with selfish and end with a good ole, see you next Tuesday .But we did make some memories and laughs and ate... dear lord can we eat...  turkey, cranberries, butt stuffing,  cookies and fudge and cakes and all that stuff the screams American feast. Gotta be greatfull for any time with the not so little - little ones, even if they oppose it at every turn.Family.... That is all i got to say on that.
      Got a  flu shots and started seeing a new doctor on Friday . The sarcasm is strong in him and he has a roll the dice attitude we are like peas and carrots. I watched as he e-mailed the world for trials regarding my illness... right then right there. No let me see or maybes just, if you got the balls for it I'll call in some favors. He went so far as to get me a social worker for the trial I don't have yet. LOVE HIM.
      So, got myself a handicapped parking permit. You know the blue plastic thing that goes on the rear view mirror. Says look at me, look at my world, I get to park closer then you. I had been stalling the damn thing for a while now... a couple of reasons one I don't get out much and two... FUCK THAT. Had no idea that would have been  an emotional  thought process over a hunk of  plastic. Had no idea the difference in my mind between terminal and handicapped. Maybe I'll use it for  black Friday at Wallmart, Monday night Football at Hooters, or maybe get me a good seat at Harry Potter... There that's it Hooters and Harry Potter for $500 Alex

denial based utopia

    Some times are just bad, line up enough of them and ones gets tunnel vision... never going to change selfish thoughts, silly thoughts , destructive thoughts bore  into the mind  invade dreams and leave much to be desired. This has been one of those days. Yesterday had another PFT test, couldn't finish this one though I did manage to stay upright thanks to a very kind and attentive technician. Thought of my disability case workers words run rampant, if you don't finish, if you don't go, if you don't, if you don't, if you don't -don't -don't.... no money. Money simple enough thing make it, spend it, save it, waste it , money. Now, it's an abstract thought .Been long time since I've made any . I've been living on the charity of family who gives more then they should- without grudge, judgment, or want ... they just do. Problem is that my ego, though crushed by this disease is still able to show it's ugly head and remind me of how far I have fallen.
    Other simple things take the ego and the fear and the facts of my condition and put them into a denial based utopia.It is what it is, and cracker it could be worse. Things may not change  however the way I respond, react, and reveal my actions and my truths can be better. I have learned to pause  the negative and by pause I mean hide, sleep,  think, and even pray for guidance and strength.
    A visit, a card, an e-mail, or a phone call- a friend sharing the dull-drums, heart breaks, parking tickets and general crap that everyday everyone can experience makes things fun... laughs and chats. I do so love them.  Facebook and now blogging any way to stay in contact. To get away from my brain who at times not my friend  thinking things that though based in reality serve no purpose . Yet my brain  finds beauty and bliss in crap on occasion... more then on occasion.   Go figure my mind sending mixed messages, who knew? Must be karma for a thing or a thousand .

Fuck the Suck

     Shrink for an hour psych for another. Great people... Fun laugh till I cough blood types that allow me my crazies and can translate the sarcasm into emotions. In other words... They get me... had me at hello... and well life is better for them. Learned a new saying from the colonel ,"Fuck the Suck Attitude." He says it what i have... an ability to realize things are screwed nine ways from Sunday... accept it and well say fuck it lets see what type of demented , fun, and cherished memories we can make today.  Then he informed me to try as little less sarcasm on the average medical types, Right ...?  He laughed said keep on with it... that a sense of humor and an ability to deflect are good nuff  as he noted in my record my coping skills are sarcasm, denial, and rapier wit.
     Had a new symptom this week, temporary blindness in the left eyes. Now this could be a few things not the least of which is hysterical blindness or masturbation. as things are worse for the lungs the latter is at an all time low that and the symptom of hairy palms is not present.  The other is in the ball park. Hard to stay sane with this crap, but not imposable. Oh, and the third possibility is the Langerhans is causing sludge in the blood. That is most likely ... but damn  boring, masturbatory insanity is much more in my wheel house.

November time to behave?

The November days, cool winds and soft sent of a fire place off in the distance,yes its that time . Time for eggnog, friends,and family. Time to make memories as warm as a fire place and soothing as a night cap.Well, I may be rushing it- but damn, I love this time if year. Back in La around  now the brake lights of endless cars stuck in  traffic are but Detroit Christmas lights. They flash and blink the Morris code of holidays past.. This time of the year people- humans start acting right . This is but  a remnant of a child's song, one  that holds a tight grip on our subconscious. Who knows the whys or wherefores? One simple fact... Santa Clause is coming to town.
  When younger right about now the sears catalogs and such started flooding our mail box. I would run to my room with pen and paper  writing the page number and toy Santa needed to get me. The hardest part of this was never, never ever, turning the pages to the ladies special section. That would be bad and Santa could not approve.But boys will be boys and Santa though a saint at one time was a boy. But still, one could never look upon those pages. BUT if , by magic! The special lady section just happened to open? Bras and panties and toys all in the same book. Whos genius idea was this... we are trying to behave and they do this to me, US? Wanting to be good and doing right are limited by temptation. Boobies are and always been  my  Achillies' heals, one of many Achillies' Heals. They- boobies and the beautiful muses they are attached  are by far my favorite Achillies Heal. If only Santa could fit one of them into my stacking,it is after all hung with care.
   Simpler times, most wants and wishes where material... nothing to worry about other then  chores, school work, and crushes.  Now, all that is needed is making some fine memories and enjoying company.Not so much what one gets but what is given, wrapping the right type of thingy and seeing a smile is enough.I guess its true Christmas is the time of giving, after we grow up a bit that is.

Porches and Barber shops

    Friday was the ER, x-rays, breathing treatment, shot-Curb. The fall last week bruised some ribs and made everything worse. But that shot ... that shot took away the pain for a while and let me have a Saturday. A simple day a fun day a day of many little things tiny moments that combined for a great day. Funny , this is a gift of the illness. In the past every moment had to be awesome to feel right about myself. This of course was imposable so I was never content.I would always let my mind race ahead to the next moment or judge this moment. I was never, hardly ever in the moment.
   Now, when the good moments are here no matter how fleeting I am there enjoying it - relishing in it... loving it.The barber shop full of old men scared with the wrinkles of time and a life lived  arguing baseball. Not the Miracle Mets or the 56 Giants but the little league of their youths as if it was yesterdays World Series. Or sitting on a porch with beautiful strangers talking shit and drinking  cold  beer. I was there in them, tiny golden gifts . I made memories and they shall stay in my mind.. They are now a thing , tools that helps get past the bad, ugly, and reality to the next simple fun thing.
   There is a saying rumored to be perfect for all occasions," This too shall pass." A proverb indicating that all material or mental conditions, positive or negative, are temporary.All moments fleeting all emotions subject to change at the drop of the hat. And lately , rarely I can be happy hidden with in them no matter where they lead or how they got there.

Hemingway of Rockwell?

   My deepest self is conflicted with a simple honest question Hemingway or Rockwell? Who or what shall I be as things go on? Hemingway attached life,  living a large and vivid life. The ugly American was just that... loud ,crass,  with a ability to share his limits,faults, and fears with others. How Earny challenged them and accepted nothing till/,well till the end. Then as a coward in the night he went far too far. He would  not accept life's terms or limitations at any point. Rockwell  is simpler times with family and friends. Moments simple moments of life captured and shared. Times remembered on bad nights to keep the present at bay till she passes to a better moment. Leaning towards both... I want to get out go and do things amazing vivid things... fun and fierce things. Yet I also wish to just be surrounded by good friends and family and make memories...
    So, I shall opt for both.  My mancave makeover started with a bed in the bag all I wanted was a cool space to call my own.. awesome bar and such. Think of the missing link with surround sound. Now,the truth of it. I want a gratitude list of a man-cave. Not written but displayed  moments with pictures, in the details. Bright happy colors and  .things of childhood simple times fun times . As Happy Gilmore found, I want a happy place. Jill once asked me to write a gratitude list. Simple request problem is those list are for people to stupid not to realize how selfish they are while stuck in a ugly  moment. So this shall be my compromise.
    I have come to accept my new normal, and by accept I mean fight it tooth and nail till there is no choice but to accept it. Once again doing the easiest thing last. To enjoy the good and the bad, to realize life aint all apple pie and ice cream.. to hope and pray that I can be the best me in the darkest most selfish moments to come. The last week has been full of disappointment and fucking reality. I hate reality she leaves no room for hope, compromise. or rationalization, some of my favorite coping skills.
    Bad beat one: Though I have been given the referral to the mayo clinic for a trial the VA decided not to write the check. This is what I have hung my hope on since I got out of the hospital. Again believing I was special and not only would be in the 22% that are helped or the 12% of those that get a little better but the most few who wind up cured. This crushed me sounded like a sad- sack movie trailer for days. Then I talked with my shrink, she always gets my ass back to center, even though my center has never been all that calm ... or any where near the center. But my dear Jill does help with the little, the big, and the ugly thoughts and feeling that run rapid through my mind. We will cover that later... shes has a mammoth heart and a soul void of judgment. Love that broad.
   Bad beat two: SSI disability sent me to a sleep clinic for a Pulmonary function test., This is nothing new done dozens of them. This is a painful test for me. I exhale hard do different types of breathing while sucking on a hose. Done them at some of the best hospitals in the sates they stick me in a glass box with NASA type hard ware  then they lock me in. I breath as  a sadists stands near by yelling harder, keep going, don't stop.My lungs are weak always wind up on the side of the glass dizzy and confused. Yesterday I learned two things one according to the sleep clinic I have shrunk a inch and lost five pounds... classic good with the bad.  So, we get to the test a most  condensed  version of the  equipment ever made. A simple waiting room chair, a small desk, big ass hose, and a angry teck( truth- that ones on me.) So, we get to the test, first breath, she yells harder, faster, keep going and I do... the dizziness starts, the tunnel vision and finally the cough. Reaching for the desk trying to stay upright in the chair. Its on wheels the desk fly's I wind up on the sucking of office floor. Humility and pain, two things that can be both vivid and memorable , just not this time. That has past ribs and head still hurt from the fall. That humbling ugly moment is gone  it only took 24 hours, progress not perfection.
    Good beat, shit happens today is today and who knows what tomorrow will bring?  Maybe a vivid fierce fun, honest , A Ugly American, an sarcastic Hemmingway of  an Rockwellian moment ... We can hope
  

ramblings and rantings of a semi sane fool

      This, a good morning the coffee hot, black as Satan's heart, and  scotch  a damn fine creamer. Yesterday got word from SSI disability that i need to see their doctors, apparently Duke, Ashville, University of Kentucky medical and West La medical  aren't enough. So more tests, the same tests and explaining to yet another man , person of  medicine what my illness is.
    The fucked thing about a rare disease is most of the people have not dealt with this since medical school. They call LCH a orphans disease, when I first heard this I thought of Oliver Twist " Please sir, I want some more." In the place of porridge I'd like some treatment.Orphans disease translation-  few have this, sorry, you are fucked. There is an option - I'm still waiting for approval from the VA for a trial at the Mayo Clinic. Great place for this thing. They have actually cured a few people, slowed the progress in others , back tracked it a bit  in a few, and not "that" many died. Fucked thing this is hope and hope is good. Fighting is great and beating the odds amazing. I remember when I first heard of 2- CDA chemo and its  promising potential I had a mild anxiety attache. I owe the IRS 120 G's and will never have the gigs I once had to get out from under the debt. Then , I laughed and thought.... Quality problem.
    So, now I pray to be allowed to spend six months in Rochester, MN during the winter (-20) doing chemo. I remember once praying for things like, her or it. Whether  it was a shinny new bike,a Oscar, Twu-lub, Stephani Palmer in high school or Julie Burns is kindergarten (many, MANY, far too many others), and a gnome that would magically do my home work. Funny thing, I do not pray for the Mayo Clinic, or healing, or any of the things I maybe should be. Instead I pray to be a better man- to live with dignity, to be less selfish, zero tolerance for the why mes or not fairs,and more man of the moment. Try and fail try and try and try. This is what it is.

curing the crazy's with truth....WHOOSAH

   What to write, where to go with this. Should I go sarcastic or sad emo bitch, maybe tough guy who fears nothing? I've been all these things and they all where lies. Should I chat about pain and suffering? The dos and don't of a terminal disease? I haven't done much right but dear Jesus do I  have the wrong ways down pat. Seems like the last thing tried , the very last thing attempted - the simple and easy thing I try last ...Is the only thing that works.
   Prime example,I waited seven years to tell anyone about it. Waited till I was crazy with pain and fear.... Truth is I waited till I was having surgery okay, it was the third  surgery then I begrudgingly   told anyone. I was toxic and weak. thinking the whole time that it was the strong thing the man thing to do.  Now, with the cat is outta the bag... everything is easier... they still think I'm nuts just  not nutty nuts instead it's,  "Damn George, this shit would get Gandhi slap a girl scout."
   I never thought about how selfish it was to let my friends and family worry about me. Not knowing what was what. My strong way was so the wrong way. Believing that I had suffered in silence and to find out my silence was deafening. No matter how far i pushed or fell outta grace with my actions some stayed. They are still here and they are not going anywhere. As for the ones my actions forced outta my life now have time to make some amends and attempt to make it right.

as prescribed

     "Extra Innings," the game could be over the game should be over yet here we are. Two years ago October I had a cold ... nasty thing coughing up bloody hair balls for lack of a better term while trying for a awesome visual. I don't know where to start or what to write this comes from Jill my get a grip councilor.  She is a doll I met from an attempt of drama that left me in ICU for three days. Funny, now I'm supposed to be all about the moment... the good, the bad, the ugly ones, all equal  all shall pass. Nothing stays for to long with me any more... But I digress. So, two years ago I had an open lung biopsy that showed a rare and terminal type of lung disease... I was informed about that there was an issue in 2001 so like any ass i went straight into denial  stopped paying taxes and lived for the moment... and the moments where vivid . Went from here to there and when the symptoms raised their ugly heads would crawl into a bottleor a piece of pink... these where my comfort  foods . Drink till I forget and fuck till i feel good. Not recommending this.