Catch-Up

I'm 'back'.
Though, I never really left. I've just not been sleeping much at all for the past almost week and I often cannot write after staying awake for four days.

I read a book series for myself. It was nice to have something I wanted to read, wanted to finish. I don't think I've had a "fun" read since Wash died. I have some books and novels to catch up on.

So, aside from the reading.

Things have been good and things have been tough.

The hard stuff first.

I have lost about a stone (14lbs) in the last two weeks. Not for really trying, or stress, but mostly due to lack of food. This is hard to be honest about, which is likely why I have not said anything, but I don't really have money to get food anymore. SNAP (either due to Arizona State frak-ups, or Federal [Congress] Frakery) has been reduced for me, and with no income, I'm trying to eat on about ~$20.00 for 7 days.
I have no grocery stores I can get to by myself or walking, and I have no funds for a bus pass, since they increased the rates back in March. I have the CVS and the Farmer's Market. Both have a small selection of foods, and both are pretty expensive compared to national brand grocery chains. I do have friends who take me to one of the stores a few miles South of where I live, maybe once or twice a month, but I'm still on a stretched budget. So, I've been averaging about one "meal" a day.
This I am sure is contributing to my tiredness.

I have a lovely friend who is also an animal lover who has been helping me to buy cat-food so the kitties are taken care of. I have a lovely reader here who sent litter as well, which we are all-ALL- very happy for. (Thank you, K.)

But, I have about $36 to my name, and $4 in SNAP food benefits to last me until well into next month. Which is hard. It is hard to be 26 years old and having to ask my mother for help to buy toilet paper, and peanut butter. I have not had much of any luck with finding a short term, or part-time job. Most business close or get smaller for the summer when all the students and SnowBirds leave, and the few who remain, or who move here in the summer before school starts have seemed to taken all the open jobs around here.
I am worried. I have no idea honestly how I am going to pay rent, electricity (it's in the 100sF now. Would you like to live in the sun with no A/C?) or my internet; which is mandatory for me now, as I'm doing some things to get ready for college this summer.

Wash had no life insurance. Neither of us had even health insurance when he was sick!
Side note: our appeal date for AHCCCS was originally on Oct 28th, 2009. I had applied in August when Wash was ill and I knew he needed a real doctor, not a undergrad student at the college health center, and we were denied. I often try not to think how many more weeks or months I might have had with him if the tumor was removed 3 months sooner than it was.
No funds, no insurance, no savings. The bit we had went to our wedding in March of that year; and the whole thing was done for under $1000. Once Wash was not working, not able to work, from the tumor none of us knew was there, my savings were gone to pay rent and food. His parents, before they blamed me for his illness -and death- did help us that summer. I remember Wash crying so much. I remember being told by his father that "this was the true Wash, you're seeing his real personality coming out. He is lazy and unmotivated." Which, really, was entirely untrue- however it was correct in that those were the symptoms of his tumor manifesting.
I try not to be angry about that summer. None of us knew what was really going on inside his brain. The tumor growing, killing healthy cells, pushing his brain- swelling inside his skull. He was not able to be honest with me, or his family, or his friends, or the few campus doctors he did see. None of us put it together until he was in the hospital on Oct 26th.
I try not to think about how it could have been different.
I often fail, but I try.

This May marks 3 years of me being "unemployed"- as my State and the Federal government do not recognize being a fulltime caregiver for your spouse as "employed". Though it should be. Caregivers at home help keep the patient's Quality of Life high, and help keep Medical care costs down by not needing a bed in a care-giving facility. Those of us doing it for the people we love though, we are not paid or compensated. Even though most often in a situation where one partner/spouse is needing the care and the other doing it; neither of them often has income, or enough, coming in. Try living as a terminally ill person with special dietary needs, medication costs, rent, and electricity on ~$800/month. Or less. Often less.
It's hard. It is hard to say to someone who is dying, "No you can't, we cannot afford it."

I've been doing a lot of processing of my feelings, obviously. Which lately has included a lot of tears. I'm not fighting it, and it hurts, but the pain seems to dull more quickly when I don't fight it.

Moving more to the good, now.

I got some sleep last night/this morning. [5am-2pm]
As I was lying down last night, I smelled him. On our-my- pillow, and his bear Hoban. That was a great comfort to me. Maybe that helped. Or, maybe I just hit my wall of not sleeping more than 3 hours since last Thursday.

He would have been so happy and excited for me.
I got in to my college programme. I'm doing fundraising to cover the costs; like the down-payment for classes, and uniforms, and airfare. I am also applying like mad to every scholarship that I can. I am working hard on this, because this is for me. I have not done anything for myself since Wash was ill, even before.
I took a holiday in late spring of 2008. I married Wash in early 2009. That is really the only things that come to mind over the last 5 years that were in any way "for myself".
I want this. I want to go back to school, at least, in this small way. It is a summer term, so just under 2 months long, and not as much pressure as re-enrolling for a whole school year, or even a normal term. That might still be too much for me right now.
But this? This is perfect.
It is an all women's college. Dorm life. A town about the size of where I live, in Tempe. Lots of gardens. Outside classes. Peaceful parks. More so, it is in Israel and is history I can study and touch. This is a chance for me. This is a chance for me to find something inside myself. Some passion.
When I was about 8 years old, I read a novel (the third in a long, and still continuing series) that moved me and impressed on me so much I still re-read it yearly. A strong young heroine, adventures, dangers, and in this book- a trip to Israel. Archaeological sites and digs, and reading in original Hebrew and Aramaic words written by human hand thousands of years ago.
To me, that was the epitome of excitement. A small fire inside me started when I read that book, and I knew in my lifetime I wanted to travel there. I wanted to have a chance to walk in the Old City. I wanted to read those words written so so so long ago. I wanted to smell the air; so different I imagine from anywhere else I've been.
I have that chance now. More. I have a chance to learn for myself. To seek out the direction to continue on.

There is no "moving forward" or "moving on" from my husband's death. It will always be with me, and a part of me. But, I have been able over the last few months to heal enough to begin to see the world with me in it instead of mourning the loss of the we. 
This is a large and important step, and I am recognizing that.
My therapy team is also quite encouraging in this, as are my family and all my friends.
I like to think they are happy to see my desire to do something-anything- again. In a way, I am too.
There is still a part of me that wants to just sit in my closet, hold his TARDIS urn, and cry. Forever.

I'm growing to see that not only is that closer to impossible, it gives me no quality of life. That, he would mind.
School, though? Things being different, him being alive, both of us working, he would take me out to celebrate and encourage me every step of the way on this. He is the cheerleader inside my head. Much cuter than Teri/Ferrell though.

Things going well and I can raise the funds, get scholarships, and take care of all the other details? I'll be in Safed by the end of June and back home sometime in August.

I am also working on a few projects to hopefully get some of the novellas/short stories Wash wrote and illustrated published. The cancer could not take his creative imagination from him, and perhaps knowing that his works, his passions, were "alive" in a way, being read, being appreciated, will help me. Knowing that he is not forgotten.

That is where I am at.

My belly might be hungry, but my self has Hope to feed on again.

Chaz & Roger

Today my heart is with another cancer widow.

It is a horrid beast, to take the ones we love indiscriminately.



Roger, I will miss you for so many reasons.



It is my most sincere hope, if he believed in some afterlife, that he is there now, happy with Gene and access to every movie ever made.



You can read Jo's wonderful post on Roger from 2011 at the link.


Roger? Gene? Grab some popcorn, relax, and now enjoy the show.

Follow-up

Well, I have a number to call and check, but DES social rep. (after a few more hours of calls this am) says that after 5am tomorrow I am back on my Health Insurance and will have SNAP re-instated!
So, one more day to "wait and see", but I'm quite hopeful at this stage.



Longer story/saga to come. Might get the press involved again this year. 

Cause, there is something terribly wrong with the system when they lie, just to kick people off and HOPE they are too sick to reapply. 

Hide and Seek

-My birthday was fine. I will write about it later.
-My foot is finally after approx 12 weeks, no longer broken! The Ortho cleared me, and my last Physical Therapy session is this Thursday


As far as the rest goes...
I have been in a very deep depression. Getting outside to get physical activity in every day, some days I will even speak to other people or clerks. But, I'm not really "getting out" and I'm not really going to gatherings or parties, because my anxiety kicks in overdrive at the thought of being out, and breaking down in front of others, or "ruining" something [my phrase, not anything anyone has said to me, I want to be clear.]or making my friends uncomfortable.

I'm hoping that with a bit more time, my medication will kick in a bit more and I will start to feel better.
I need to see someone, professionally.

It's painful to wake up literally crying. Or, sobbing so hard in my sleep it wakes me.
I'm getting physically sick now some evenings when the panic and memories set in.
I'm having more flashbacks, visions I cannot control.
I keep seeing certain days, certain events over and over and over.
Some mornings, it feels like my body is literally frozen in place for 30-60 minutes and all I can do is see these images and hear those voices and words and cry.
I need to deal with this.

Around the mid to end of last week I noticed a new trend; not really having emotional "ups and downs", more like a numbed baseline, and then moments of wrecking sobs.
I've been watching old horror movies that terrified me as a child now, hoping to feel something. I haven't.

A few more nightmares, unrelated to the movies, mostly it feels like I dip into a parallel word, things are not fully the same, and sometimes Wash is there. Sometimes, it is other things.
Things that I don't have words for in any language I know.
But, I don't have fear. Not "fear" in any sense of the word to my own self; no terror at the thought of my own end. So, there is a knowledge that
*I am dreaming
*I am hunted, by something
*I am not afraid of anything that can happen to me

It's odd. Everything feels odd in real, waking life.
I keep expecting to see Wash. Downstairs, in another room, somewhere.
I wake up and the bed is large, empty, and cold. My brain screams at me that it is wrong, it is SO wrong that nothing can be real. Everything feels surreal when I am awake now.
Numbness. Numbness, and a pain so deep it transcends the physical world.
What is physical pain to this?

I know my friends are trying to help, trying to support. I know my family is too; they showed it to me in heaps for my birthday.
I know you, Dear Readers, leave me such nice and encouraging messages and in a way, it does help.

But I know, I need more. This is not something I can do alone. Wash is not around to give me strength either.
Making those calls into such such SUCH a shitty insurance system, most especially for the adults with mental illnesses, it is hard. I tried it before, too many times.
I tried it right after Wash passed and I was told 2-3 months to wait before they could even have me see anyone. That, was not really helpful.

I have no way to afford to pay out of pocket for a good professional, who has experience in grief, loss at a young age, PTSD.
Magellan's history of treating patients in Arizona is not stellar, by far, but it is literally my only option right now.

So, that's about where I'm at, almost 7 weeks after --
I don't even know what to write. After he died? After he passed? After my heart stopped? After I lost my world?

The courser blinks at me, patient to my numbness and the slow pouring of words from the churned emotions inside me to the screen.

Goodnight, Dear Reader, and stay safe.

Remember

It's a very very bad day to wake up as a woman (or as a human who cares about women) in

Arizona. Even infertility doesn't spare me the pain of Brewer's reach.

There's something about having personal, human, biological rights taken away from me, as a

consenting adult that help me to really remember come Voting time.

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.

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.