Pi Time

My fundraising for school is going well. I'm at the halfway point and hope to leave in about 3 weeks.
I'll have more to say on that later.

Tomorrow morning I again do my best to contact DES and have a long appointment with my Hospice counselor to talk about some of my issues leaving for Israel, leaving Wash/TARDIS "home", leaving my sweet kitties...
It's a lot.
Aelphie has been my animal companion since I lived alone as an adult. I know she is getting older, she has some grey now on her, but I still see her as my little girl. It's hard for me to think of being away from her comfort for the summer. It's hard for me to think of what she might be feeling while I am gone. To them, Wash was here and then he was gone. I don't know how to explain to them I'm coming back.
Leto, well, he's my baby boy. He is the last living connection to my husband I have. I'll never have his children, but we had Leto. He had Leto. And Leto lost his dad. The human he loved most. Now I'll be leaving him too. I'm coming back, but how will they know?

It's hard to think about. I can't help but cry. When I was so alone, the house empty but me, my family all busy with their own lives, my friends not close enough to comfort, or not able to be there... my cats were there for me. They let me hold them for hours while I just sobbed. They purred in my lap. They slept in the bed, making it feel less empty- less alone.

I'll be without them.

And I want this. I want this chance. I need to do this. I need to go.

But it hurts.
It hurts to not know. It hurts to know I will be so far away, without my support, without the few living things that love me around. I know Wash would want me to go. I know.

I'm afraid of something happening and I cannot be there.

I've been trying to work on a "normal" or regular sleep schedule, but the stress is making it hard. So much to do, but no real routine to help me function to do it.
I've been able to catch 03:14 on the clock every 12 hours for the last full week or two.
I see it and I say "Happy 3:14" or "Happy Pi minute my Love". Wash made a point for as long as he could remember to, to tell me that everyday- at 3:14(am/pm).
"This way, every single day can be our anniversary."

I miss him. I miss his voice. I miss his hugs. I miss his love. I miss his jokes- all of them, I miss him telling the stories he told over and over.
I'm not good at saying "Good-bye". I'm not. I don't think I ever will be.
So leaving is hard. Knowing it will be months before I see my friends again. My family. Being around people who love me, or my pets who do.


I apologize if this is incoherent. I am mostly just sobbing and crying tonight.

It has been a while since I have had the flashbacks, since they were uncontrolled. They are coming again. That night, over and over. The day he went into the hospital, over and over. The months of warning signs all flashing before me. The questions, always plaguing, 'Could I have done more?' 'What if?' 'Did I do everything I could have?'

The biggest one. The most evil. The one that never really fades, or really goes quiet.
"Was there a chance I could have saved him? Was there a way to avoid his cancer? Why did I not see it so much sooner? How much of this pain is mine to bear?"

The question that I will never really be able to answer; "What happens now?"

I never thought I would be a Widow this young. I'm angry, because when we got engaged, he promised- swore he would let me die first. I know it's not exactly something he could really promise, but I hate it all the same. I hate the loss. I hate the Silence now. I hate how empty my bed feels. I hate having to cook for one, not two. I hate that I am entombed with his things, his life, but not him. 
I miss being held by my husband. I miss my best friend. I miss him so much. It is more than a void, it is my own self, my own soul, broken in half and gone. Not missing, gone. Not lost, gone.
He made me better, and left.
He left me.

That hurts. "Pain" is not a comprehensive enough word for this. English has no real word for the feeling of desertion by way of grief.
I miss having a reason to smile. Something to be happy about. Someone.



There is no potion. No drug. Nothing instantaneous. No wave of a wand, or hat-trick.
Time does not ease the pain, the hurt. My wound may not bleed as much now, but time makes it grow deeper, makes it into a keloid scar- ever growing, not healing.


I was stronger with him. Better.
I just feel so small and helpless right now.
I am so very tired. I feel I should be nearing the end of my life, not the start of my adulthood.
I've lived so much already.


I miss my Love. I miss our Love. I miss being loved.

I miss being loved.

Sighs

I really really dislike having to tell DES (again) that Wash is (still) dead.
Nope, has not come back. No awesome miracles like that!

I cannot understand why if I tell them I am widowed, and sent them copies of the Death Certificate about 2 weeks after he passed, they still have to ask me and verify he's dead.

WHO IN ARIZONA HAS DIED, GOTTEN A DEATH CERTIFICATE  AND THEN COME BACK TO LIFE TO APPLY FOR  MEDICAL BENEFITS?

I'm assuming this had to have happened to someone because I just cannot imagine why the state would like to traumatize people who have lost their spouse/child/dependent.


What annoys me even more is spending a crap-ton of phone minutes I can't really afford to talk to someone at DES and for 3 straight days get nothing but a busy signal. I call about every 10 minutes to check. From 8am-5pm.


So much to do, so overwhelmed, and so distracted.

I would also note to them that the asthma I have had for 16 or 17 years now has also not "cured" itself. That would be the "chronic" part of "chronic asthma".



Too much going on. I'm riled up.


I'm scared and nervous to leave, and at the same time, I cannot wait to be gone- even for just a 6 week term- from Arizona.

Speaking of, briefly, I'm about halfway to my needed goal to cover costs for Israel! My scholarships are helping out with some things, but I'm still doing the majority of this upfront out-of-pocket. But, I want this, and I know I'll be in a different place when I am done there for the summer. I don't know if it will be a "good" or "bad" different, but I know that I will change. I need some change. I need some personal growth time, some time not defined as "wife" "caregiver" "widow", but as "Tashi". Time to look at my future and maybe see something there for me.
The future hurts. Every day hurts. Every minute and second. It hurts to live without him. It hurts to know he is gone. It hurts to try, to have to remember who my love was; instead of knowing because he lives.
My thoughts, my hopes are that in a new place, around new people, a place defined by my own self- not "us"- thinking and looking at my future won't hurt as much.
It will always hurt. I know this. I knew it before.

But maybe, maybe, it will start to hurt less.

Stranger than fact

Insurance says- "You haven't been to a hospital for 4 months? RENEW!"

Tashi- "Ok, here's all my paperwork, exactly the same as it's been the last 31 months."

Insurance- "Can you do an in-person interview?"

Tashi- "No."

Insurance- "Can you appoint a proxy?"

Tashi- "YES! Here's the paperwork for it!"

[2 weeks later]

Insurance- "You missed your in-person interview, INSURANCE CANCELLED!"

Tashi- "But, I appointed a proxy, did you not contact them? Can I appeal?"

Insurance- *silence*

Tashi- "Ok, trying another phone number- no, disconnected too. Hmm, this is adding in MORE stress on me this week, I'll just have more asthma meds."

Insurance- *silence*

Tashi- "Ok, now you aren't answering ME or the Ombudsman team. Or Hospice. Not cool, DES."

DES- "Don't blame ALL of us! AHCCCS is a different section of DES, we don't have their direct contact numbers at all! I want to help you, but legally I cannot."

Tashi- *Wheezing*

Insurance- *silence*

Tashi- "If this keeps up, I'm going to end up in the ER because I can't breathe and have a severe asthma flare up/attack."

Insurance- "Well, in THAT case, you'd be approved again."

.............................

Gods, I wish this were fiction.

Radius

So far it does seem Wash's med change has helped him with his afternoon energy and his appetite. Sadly, it also seems that anything I say or that happens in the morning is taken as me "attacking" him and he's very rage filled and has very little emotional control.

Seems if he is left alone for a while though, he can mostly calm down, and the rage goes away by afternoon.

Still. We'll talk to his nurse Monday.

In good news after I gathered more than 30 pages of requested documents (at my time and expense of printer ink) to give to the Social Worker (SW) he battled against DES for us for a few more hours on Thursday.

DES-"So, our problem is that based on numbers their medical costs far exceed their reported income."

SW-"Yes, that IS the problem. That is why the need to continue with insurance coverage and the SNAP benefits."

DES-"But HOW are they paying their costs?"

SW-"They're NOT. That's the point! With coverage they can sometimes pay bills with donations and community support. If the coverage stays cancelled, they will be homeless to afford to pay for food and medication."

DES-"Ok, we understand that. But we'll need to do a financial check again in 6 months. Because we don't understand how they are paying bills. The income doesn't exceed expenses."

So, that for basically a few hours. The upside is that our SNAP benefits were back today, but I don't know if they are back-paying our funds or not.

The downside is that outside of getting assigned a name; "Dave"* , we have not moved forward with the ALTECS portion of insurance coverage yet. My paperwork shows that Wash has been enrolled in it since Dec 2011. They are trying to convince the SW that Wash is just now being enrolled and it "takes time". (Hospice Social Worker. Wash doesn't have that kind of "time".) The awesome SW will do battle again with them Monday. See, until he gets ALTECs we can't have insurance pay for Respite Care for Wash and me.

I'm still really keen on the idea of a suit against Arizona et all. I am thinking of trying to bill AHCCCS directly for the costs we've incurred since they fucked up our case. I truly think that is only fair.

At least the kitties have been cuddly and friendly this week.

And my garden continues to grow; tomatoes, peas, beans, strawberries. The garlic is coming up too. Half of the paper whites (flowers) have bloomed and the alyssum has taken over so the smell outside is so fragrant and calming. I try to spend 30-60 minutes out there every day.

Small things, but they make the difference when it's all you have.

*Not his real name

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.