Wednesday, January 25, 2012

Hard work; I'm coming for you, Jan

So much going on and I've been trying to spend my free time with Wash, not really writing.

DES and our Insurance company is fucking with us again. I had to "renew" back in Dec and I had sent in all the documents they needed- by their own electronic system. Since there was no mailing address, no physical office they could say would accept my paperwork, and the fax number on my documents to them was given as "000-000-0000". Really, I could literally only submit these documents electronically. I have the confirmation they got the documents! (12-19-2011) So, now they are saying I never sent in anything. Liars.
They say Wash is not signed up for the "ALTECS" system (long term adult care) when I have a paper from the DES office dated 12/09/2011 that confirms he was in fact accepted into that program.
Today, they say they need copies of documents from 2010- 2 fucking years ago! Also, they HAVE these documents, as I sent those in back in 2010 and Wash would not have had coverage if I hadn't sent them in! Logic fail!

They have also made our Hospice Social Worker wait almost 3 hours for a meeting, then cancelled on him. I am beyond pissed at how we are being treated, but he tells me to stay calm and let them handle it. Wash is on Hospice, it's not like his cancer has been "cured"!

They've stopped our Food Stamps as well during this. The last funds I received for food was Dec 6th. Everything since about Christmas/New Years has been out of my own (empty) pockets. (Hospice is bringing us a food box tomorrow. I had so hoped I would never have to take another.)

I have saved every receipt from Dec on in a little pile. I have decided once we are back on with services, I'm going to sue. Most likely in small claims, but I'm taking DES and the State of Arizona, hell, Brewer too if I can (she might be protected from a suit while she's sitting in office, I'll have to check) to court. I'm past my breaking point. This is our Quality of Life that has been impacted in such a negative way. Today, I'm out for blood.
Plans within plans, my plans will put the Bene Gesserit to shame.

I feel like I am on the edge, tipping back and forth.
When I was growing up, starting to come into my teens, my , well, let's say "friends", they would say I was one bad relationship, one lost love away from destroying the world. I was only a "bad" accident away from being that "evil genius".
I think I get what they were saying back then now.

I am not able to cure this cancer. I'm not able to save my own love, my husband, my best friend.
But, I can be the change, the cause to make sure no one else has to suffer like we have.
If I set myself to it, I could change the whole face of healthcare in my State, perhaps further.

I have this voice in my head that tells me when Wash does go, it's going to be one of two things happening to me. I'll either fall into a depression that I will not be able to ever pull myself out from. Or.

Or I grow stronger. I find a sense of self and Justice and make that into reality. I take my papers, my writing, my voice and I make noise and actions until the Change happens.

We were both born in America. The country that only a few decades ago was the ideal for "making dreams come true".
We both live here, in the land of declared Democracy.

And he faces dying destitute for circumstances of merely being alive for 25 years before a tumor grew in his brain.

In America.

Land of the Free? No, not for us.

I can't fight the cancer in his brain, turning his healthy brain cells into cancer or mush. I can't fight that.
But I can fight the system that says his value is a defined number.
But I can sure as hell fight the system that says after two years if he's not dead they won't pay for any more help.

I will never forget the day a Judge in my own state, the state I have paid taxes on every job I have worked since I was about 16, told me Arizona could and would do NOTHING to help my husband live and to "move to Canada".

I love the Canadian country. I love my Canadian friends. Someday I would love to see their beautiful country... but I live in America. I'm an American citizen. So is my husband.
He should be able to live and die in the only country he has ever known, and wants to.

I am still quite tired. I could fall asleep and never wake.
But I don't think I will ever really rest until I know that others will not be hurt or punished in the way we have been. Being young and terminally ill should not be an excuse for the Government to forget and deny your existence, your Right to Live.

I have to fight.

I can't leave this one up to Hope. I can't just "hope" someone else will take responsibility. I can't just "hope" the people at the top of the Government- Jan Brewer- will do the 'Right' /Moral/Human Responsible thing. I can't just "hope" for policy to be changed.
It has to be me.

Get ready Arizona, the Gathering Storm is approaching.


  1. Oh my GOD, *please* take down Jan Brewer. It shouldn't be too hard, generally old decrepit pterodactyls like her like to fly low to the ground so you can just snag her out of the sky. But seriously - you have my full support. I'm making a move from Tucson to California soon but I will definitely keep fighting the good fight so that Arizona might one day have a government that reflects the will of its people.

  2. Goddamn... you GO, girl! You just go on. BE that evil genius. Goddamn I can't believe this is happening to you again. I don't even know what to say.

  3. Remember "Fear is the mindkiller" - I hope to God that your financial situation will be sorted out. I'm shocked to learn about your insane health system. I'm very grateful to be living in a country with universal healthcare.

  4. Jesus this is appalling! This should never happen and I'm saddened beyond words for you two. My health insurance thru my job has covered almost all of ny husband's med expenses except for around $15K that was out of our pockets. If we had been insured thru his work we would have been in serious trouble. Because he's had 2 craniotomies,a stroke, partial blindness,radiation and 10 rounds of chemo. I took a leave from work to care for him,no pay. We bought a life insurance policy when we first got married,it had an accelerated death benefit we were able to get and that's what made it possible. I just went back to work a month ago,can't afford to lose health insurance and had bills to pay. I hate not being with him every minute,luckily my kids are 22yrs old still @home and they look after him while I work night shift. I was able to get him enrolled in Social Security disability as this kind if cancer is fast tracked. Type me anytime if you want to chat. {hug}

  5. Poem a brain cancer patient wrote that is beautiful.

    Do not ask me to remember
    Don't try to make me understand
    Let me rest and know you're with me
    Kiss my cheek and hold my hand
    I'm confused beyond your concept
    I am sad and sick and lost
    All I know is that I need you to be with me at all cost
    Do not lose your patience with me
    Do not scold or curse or cry
    I can't help the way I'm acting
    Can't be different though I try
    Just remember that I need you
    That the best of me is gone
    Please don't fail to stand beside me
    Love me till my life is done