Confessions pt 2

Some nights the reason I can't sleep is that I worry he won't be alive when I wake up.

Some nights the reason I can't sleep is that I worry what will happen if I have to move him and he cannot remember where he is.

Some days I worry about how to cover all the medical costs.

Some days I worry about our (lack of) future.

Some days I just want to be by myself and in a quiet spot, but I am terrified of being alone.

Some days I worry this is not all a dream.

Every day I worry it will be the day he forgets who I am and our love.

Paypal help

So we got a donation Paypal account set up with our friend; for legal reasons we cannot have one of our own. Wash will lose his medical insurance again if we do.

So, for anyone who wishes to help us monitarily I will post the link to Paypal below. If there are any issues, please leave me a comment, I do check them. If you prefer to donate a different way you can contact me on my email

hopeforwash (at) gmail

The Paypal is here

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=KXARP779DUV4J

As I have requested before if you'd like to help us out and you are in a financial place to do so, we would be so grateful. I cannot meet our needs on a single SS payment and monthly food stamps. That will never cover even a portion of his medical bills. We also could use gas cards if you do not feel comfortable giving money; that is always needed to transport Wash to his hospital and doctor appointments.

He got a nice gift today though from therapy- he got to go Build A Bear (part of a coping therapy). He named the little guy Hoban and seems quite happy. I'm thankful.

The Doctor

Flat out Aspie moment for me today;

We are at Wash's therapy session today and they are talking about how to help him remember his emotions better and they mentioned- "emotions that are strong can help set memory..."

And of course, with PTSD I am aware of this as a concept. I understand it exists.
But I don't understand. My memory does NOT correlate to my emotional standing. Emotions and memories are two very very very distinct things for me. They can be compatible, but for me when I recall things I don't remember feelings with it- not unless I really try. And sometimes I just fake it.

Just one of those days where I feel really different from just about everyone else.

Every night I sit alone and I cry

So, wanted to share this awesome little bit from last night.

So, around 10pm ish Wash and I head out (after the storm, wind, and sun have all gone) to the main street of our city (Mill Avenue) to have a little walk and such.
He always whines and complains about moving until I get him outside then it's awesome. Men.

Anyway, we decided to stop in one of the head shops we like to frequent as we like the staff.
Wash and I walk in, and there's no one there but us and the two keepers.
One of whom we've met maybe once before.
He notices us and runs! forwards and grabs Wash in a big hug.
"Hey man! It's GREAT to see you! How are you feeling? Oh, man, I saw you guys in the article a few weeks ago and I was like, hey! I know them! It's so good to see you!"
So he and Wash chatted for a bit, then we left and got ice cream for the walk home.

Almost Famous?
He was recognized as well from the article at our local Farmer's Market the other day too.
I think it makes him happy.

Project 1

http://www.youtube.com/watch?v=6FOY154jIXk

This is what I spent most of my afternoon doing/working on.

Questions and Answers

Paypal should be up sometime tomorrow. With luck.

Sadly got the denial letter from AHCCCS for Wash's mental/physical rehab.

Because he fits medical criteria, but he's over 21 so they recommend a supplemental insurance cover it. Frak "Quality of Life" and all that.

I'm not getting angry about this until tomorrow. Again, I love how they always send the denials on a Thurs/Fri. Never got one earlier in the week.

Today was a good day, I will not hold wrath today.

So.

Wash and I had a real good morning, got out in the outdoors, did some errands together, sang a bit. Was nice. Also got a harness for the kitten so we can start to outside/service train him. He seems to be taking to it ok.

Wash was laughing and smiling today. That counts as a win for me. He's also making me dinner tonight- woowoo. I feel special. :)

And since it takes a long time I'm very much anticipating it.

Also for anyone who wants to know what aside from Paypal to do for me?

*Are you local in AZ? Register and VOTE. That is the only way we will change the policy that is killing Wash

*Are you local to Phx/Tempe? Message me if you want to personally help with some day to day stuff

*Are you a social networker? Pass our story around to as many many many people as you can. The more who know the more who will want change. Imagine if it was you, and really it could always happen we just never want to think about the larger odds

*There is a post called "Our story links" you can find the info there.

*Call your local state reps and find out what their policy is on healthcare for the "in betweens". Tell them our story. Ask what they would do to prevent that from happening to their constituents. And if you don't like what you hear, VOTE.

*Gas cards. Aside from the medical costs gas is a huge drain and issue. Wash's hospital is in another city, granted neighbouring, but still it's about 30 ish miles round trip for one trip. He's there multiple times a week/month. And his other doctor appointments around town. If you'd consider this again, message me and I will let you know more details

*Postcards. Travel is really not an option for Wash anymore. Even if we could afford it he and I both know he has maybe one or two big trips- out of state- left in him. So postcards from anywhere would be wonderful to get and cheer him up.

Ok, I'm gonna go into the kitchen and try and sneak a snack.

A new hobby

The past few days, let me think and remember. Working to set up a Paypal and try to learn how to ask for and accept help from people. I have Aspergers, it's hard for me, a lot of times honestly.

We have a really awesome friend and Wash's frat bro who it looks like will be spending a few hours with us a couple times a week in between classes. Gives me a chance to do what I have to do, and Wash loves his friends. I'm happy for this.

And for the gifts and cards and postcards that occasional show up in my mailbox, not just overdue bills.

I had a good time working out my knee in physical therapy this week so far, as much as it hurts I know it's for the better. I just want to push through this and get better - even a little- every week.

I also finished "Under the Dome" on Sun. Took me 4 days, but that was counting the two and a half that Wash spent complaining about me reading. I brought this up in therapy, his life of double standards. He begs and bugs me for months to read again and when I find a good book and a good story he spends half the time trying to distract me and take me out. Not really fair love. I didn't give on this. He was fine and had his kitten, I wanted to and did read my book and finish. And I did hate and cry at some parts, some parts far too close to what my own life was and is like. The sudden growing pain that isn't spoken of and the sudden turn from a loving soul to a cruel abuser. I try to forget those days, but there are times I cannot. There are marks still left. And it felt like I was in Wash's head at that point; hearing Arnie speak and hit me.

Apologies dear reader if I have not explained this lately, Wash refers to his tumor/ personality with it as "Arnie", not himself.

It was stressing.

But the story was more important and I finished.

It makes me wonder though, about our own story. Our own ending. When and what that will be. How close, how far? Is it weeks- I think no. Is it months- I worry yes. Is it years- I never let myself be completely set on that. I know this disease too well, for every 5 year survivour there are 98.~ % that will not survive.

Which brings me around to the issues of today.

A little fight - tiff- between him and his parents. He told them the other day he wanted to try and find an Adult Make A Wish type program or sponsor who will give us a vacation at Disneyworld over my birthday. He's never been and neither have I. He wants time off to relax and live while he can, and so do I.

He wants it on my birthday. He wants me to have a treat, something special, something good for me to hold onto and remember.

And this I think is only part of the bigger issue. I'm not certain why his parents would object to a vacation. A we-are-only-going-if-it's-paid-for holiday. Because to see him getting that would perhaps... solidify? to them that he is in fact, terminal.

I have my theories why they have not so far, despite the articles, doctors, hospitalizations...

They are not the ones taking care of him. I am. They don't see him at his worst. I do. They don't see his pain. I do. They don't see the medical files, the statistics, the grim looks from questions of years- plural. I do.

I see him sick. I see him cry. I see him hurt, and begging for relief. I see his hard times and I hold him until he can move past it, or until I have to carry him past it.

And that's my marriage. That's my devotion, my love, my right. My life is to give him the best life that he wants right now.

His parents don't see that, I don't think.

For him to do this, go away on a "last hurrah" (which it might be) will sink it in that he is dying.

Now, we've slowed it down a lot, but he is still going a lot faster than say I or perhaps you, dear reader.

So many issues.

Aside from that as of next month we will have been infertile for a year.

I'm crying a bit, because it is just hard to write, to speak of, to think about.

I've had so much taken from me, so much lost.

And I still have 62 days before I'm even 24.

Where do we go from here?

Election time is coming

Fight the good fight.

Come tomorrow when I vote in AZ I encourage anyone who comes across a blank selection on the ballot to put my name in.

I would swear to fight for an Equal state and put human interests first- always.

Vote Tashi 2010

Watching

It's the little things; the moments now. Nothing else will carry over, only really have memories.

We had a walk today, holding hands.

I had kitten kisses from both cats in our home.

I kept my husband smiling and laughing today.

We had a good day.

It's the little things, but I agree with Wash. At the end of the day I end up in his arms, or mine around him. We're together and I get to tell him every night I love him as the last thing I say.

To me, that's golden.

They all

I've been having my own issues lately dealing with the happiness of others.

I can share in their happiness. I can take comfort in their joys and be proud of all they do and how far they go and grow.

And yet, every time I hear of another friend getting married I feel like my heart is just ripped out. I don't get a "happy ending". My vows will come to an end much sooner than their own. When my friends tell me they are expecting, and I see daily new photographs of a foetus, or hear progress of a child, I feel like my own stomach was kicked. There is something else I want with all I have, that I will never reach.

And, honestly, where I have grown up, my family, my history... I wanted kids. We wanted kids.

Then we would settle for a child. Did not even have to be our own biologically.

Impossible.

I don't know how to deal. I don't know how to make peace with the fact that I as a human pretty much have no value on Earth. I cannot finish my schooling and I don't ever know if I will. My wonderful and large and very very very curious brain is set to waste. And I fail in the most basic and complete sense as a woman. I cannot have his child. We cannot be parents. I cannot pass along any biological traits I may love of myself or of him.

I feel like I should not even have my uterus anymore, it causes me nothing but literal pain every month with a painful reminder of what I will never have and that I have failed as a woman.

It's all lost.

I don't know how to not feel pain when I see family, friends going out on vacations, buying thousands of dollars worth of disposable material goods...

when I cannot even figure out how to find a few hundred dollars each month so we can have electricity and internet. And yes, both are essential, and if you do not think so imagine living in 120F weather with no way to sweat/regulate your body heat. And you are dying, trapped inside a place with no AC in the heat and you have no means to entertain yourself.

I will say again, men condemned on Death Row do not even live like that. But the Federal, State, Local Government, friends, and family will all watch this happen to myself and Wash and not help or intervene.

The only thing he "didn't do right" was getting cancer in America at a young age. But not young enough to qualify for help. And not old enough to either.

I hate all this negativity and unfairness. I don't understand it, I don't forgive it, and I honestly do not know what to do to change it.

I have begged family and friends. He's talked to his frat alumni. We've had a small story on the TV news, we've had a feature story in a weekly that I have tried to spread around.

I feel so gorram useless. Every good thing that happens to others I know seems to underline all the bad shit that keeps plopping on us.

People say they are "sorry". So "sorry" for my situation. So "sorry" about Wash. So "sorry" this happened to me at my age. A litany of 'sorry'. I'm sick of it, honestly.

Sorry does not solve or accomplish anything.

Sorry does not help me, only points out you have not been where I live.

I need publicity. I need food. I need my electricity bill paid, my cable bill paid, my car insurance- or I can't drive Wash 14 miles each way to his hospital. I need money for rent and my phone bill.

That's what my life is, figuring out the very very basics- and a measure of comfort for at least Wash, cause, you know, he's dying- and trying to cover when the stuff slips between.

Like when I have to make an emergency run to the drugstore at 4:17 am for $40 worth of OTC meds for Wash, or gas for the driving I have to do going to all the doctor visits.

I need someone who can and is willing to help us to stand up. Someone to notice that this is just beyond unfair and is cruel to watch a government and community turn their back on a dying man.

He's not just a lost cause, he is my husband. He is the man that makes me laugh and smile. He's the man who has designed elementary schools to help children learn in a friendly environment. He's the great friend you can always count on. He's a wonderful, learned, and caring Fraternity member.

And I wish, I wish so hard for someone to step in and help make his last weeks/months/year worthwhile as a human. There will not be a cure. I am realistic. I have medical knowledge.

But I can still hope that there is someone out there who has money and cares for a fellow human to see him, to see us, and step up.

Maybe I fail at being human, helping the living not just the bones, but he doesn't. He is the best example of what kindness and caring and patience and courage is.

And it hurts me so much that all the character is taken away from him by this disease. People see Cancer, not my husband. They see a Patient, a Number, not my love.

I just don't know how to deal.