Wednesday, August 27, 2008

Wednesday DNC

--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

DJ Obama Run DNC

--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

Dear "Gina",

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

Above the heart, over the head.

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

Bruised, tattered, worn, broken hearted and finished.

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

The mutant revolution continues.

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 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 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.  

Walking dry.

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.

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.