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. 

Leto watches "Animal Cops" with me

Heard back first thing from AHCCCS/Insurance Dept. They just need a statement that I hurt myself when I broke my foot, and that it was not the result of an auto accident or work injury (ha!).

I asked if I could write down that it was due to lack of paid help from the same insurance for my husband's care, and the lady was, "Sure, as long as it's true."

AHCCCS, check.

Your move.

Raining this morning. Woke up to phone calls. Back to sleep. Rain. Back to sleep. Cats crying for Nums. Back to sleep.

Wash screaming and running/throwing himself down the stairs; WOAH, OK I AM AWAKE.

He heard the neighbour's door knock and in his brain that was his cue to wake and "Oh I need to go to work!"

He came down the stairs and just started falling over everything.

It's gonna be an ... interesting... day.

Short Commentary

I took 15 mins out of the start of my day to read the news and celebrate the Supreme Court upholding the Affordable Care Act.

Reasons why I personally love the affirmation on the ACA;
1) Because if Kevin "Wash" Pratt-King had been able to get insurance through the State OR an affordable private source when he was unemployed due to his tumor in 2009, his brain cancer might have been caught before it was "terminal" staged.
2) Because Kevin "Wash" was only 25 when this happened, I was 23 and neither of us were able to be covered for insurance under our parents (which again, could have caught the tumor early)
3) Because (hopefully) after 2014 no one will have to have an Insurance Appeals Judge tell them to "move to Canada, we can't pay for your medical needs in this State."
4) Because (hopefully) after 2014 individuals and humans won't have to beg strangers for money to afford medication to live; which caused The Fundly website (for us)to even need to exist; http://fundly.com/thecommunecares

Want to argue with me AGAINST the ACA? Please donate to help our medical bills first; because without the ACA my life and my husband's are literally held by stranger's kindness.

EDIT;

Reasons that Wash and Tashi think The Doctor would also be excited about the ruling today;

1) He's a DOCTOR (of everything!) of course he supports greater access to preventable care

2) Greater chances for medical advancement with more access to patients to study (with informed consent)

3) More preventative care now means less chronic illnesses and death later- MORE COMPANIONS!

4) The Doctor was born with two hearts; he'd be pretty keen on getting rid of "pre-existing conditions" clauses.

5) It saves lives. The Doctor can get behind that.

Security

Some good news;

AHCCCS and SNAP benefits will continue! Apparently we ARE still broke, sick, and dying! It feels so odd to celebrate retaining our health insurance.

I also got my new glasses today. They are my first proper prescription in about 4 years (Thank you for the donations to help me SEE) and fitted for me and my eyes.

I can bloody well see. I can see details, I can see things without glare, without light halos.

Also, my house has SO MUCH DIRT and clutter. Before, it was all just kind of a group of gray lumps.... ugh. It's going to be hard not to clean too much and confuse Wash.

He's having a better day. Still a lot of memory loss, but it seems to me like he's forgotten his bad days from earlier this week and his severe depression seems to have eased. Though, it is still daytime and some days he is fine until sundown/sunset. At least in summer now he will get a little more light/sun. I managed to get him out for a walk at night when it was cooler a few days ago- he's gone from a walk every other day or so to around once a week now.

His muscles are going to atrophy soon. I try to convince him to move, but some days he doesn't have it in him.

If he doesn't remember I am not going to bring up his bad days from this week. Better he doesn't remember the pain or sadness. I can hope he can just move on past it.

I have had a nice few moments with my husband, a few chances for some (perhaps, last) memories. Emotionally, it's like taking a bowling ball to the stomach, but I have to focus on the good few minutes that happen, those quiet times where I can remember the man I fell in love with, or even remember more about myself, who I was.

I have to try every day to make it all count.

New Shot

So, after last Saturday and my much needed escape, I'm pretty sure that's when I became sick. By Monday I was feeling something off in my throat and Tuesday I was full on plaguesick.

This week kinda went by in a drug-haze. I think I slept most of Wed and Thursday.

Something nice to come of this though, is the help and services offered by ALTCS. Since Wash was finally put on it in April, and had a case manager and home-health services provider assigned things have been a bit nicer. I spoke to the Hospice SW on Tues and said I was not that well and he suggested getting some help in for the week. I agreed. Wed I spoke to the ALTCS manager who within hours had someone there for Wed evening and a full 6 hour shift set up for this past Thurs and Friday.

It was a gods-send. We had the same lady on Thur and Fri and she played with Wash, helped him with his stuff, made lunch and cleaned up too! Basically all the things I do, while watching him and helping with pills too. I slept quite soundly knowing someone else was able to watch him.

I still am clearing out the last of my illness; I'm hoping I do not have an ear infection now from this cold. But, I can breathe for the most part, I'm no longer going through a box of tissues per day, and I'm able to get some of this crap out of my head. So, better.

I'm thinking though, very seriously about calling up the case manager tomorrow though and asking for some part-time help; twice a week for a few hours is still more respite time than I'm currently getting and I'm finding that having a little "alone" time is very good not just physically, but mentally for me too. I'm reading a little more, I can find a little more enjoyment in things.

I'll have some good things to post tomorrow, but just for a day Wash wants to enjoy something quite wonderful that was done on his behalf.

I am thankful for the friends and support we have.

When there's someone by your side to sing along

I have not been feeling my best lately and putting off taking care of myself. People I value have pointed out just how stupid that is, as well as avoiding the doctor, so I sucked up my issues and called.

I'm hoping to get some answers and some help.

Some short, but good bits today.

Tuesday sadly Shepherd's pie was cancelled as there was a bug going around my stepdad was not feeling great. So, my mum came over to our place instead, we grabbed Tacos for Tuesday dinner and the three of us enjoyed watching "The Muppets". My mum started out hushing at me but by the end was singing all the songs out loud with Wash and me. It was a really sweet and happy night and memories for all of us, I feel.

A little later on just after we had finished the second episode of "Texas Ranch House" the power for our entire block went out. I'm still trying to figure out if that is ironic. I just grabbed some candles, Wash went to sleep with a few extra blankets, and I stayed up and read for a couple hours until the power reset. Then I turned in.

Wednesday I really was not feeling that great myself, and Wash really just needed to *write*, so he just took the computer over for the day. He finished his short story a while ago and has been doing his best to get some help to really edit it and make it into a nice product. I'm proud of his hard work and how he has been able to re-focus his grief of losing his ability to be an architect, into something else; writing fantasy/fiction and illustrating. Some days he can work for a few hours with great focus, but most of the time his projects lay undisturbed until I remind him or something happens to inspire his creativity. Brain cancer and injuries are so odd; certain predictabilities, and other flat out deficiencies. He cannot remember to brush his teeth, or even eat on a daily basis, but he can still write a 20 page short story. I am constantly amazed by how much of "him" remains, and how much of his personality and even skills have just gone away.

We also had some good insurance news this week; our old horrible case-manager for Wash is off, and our new one is a very respectable woman. Wash had a 2 hour assessment that left him very drained, but we have a few new things to help him now; a new cane he got today and he will have an appointment soon to check his eyes and see if glasses can help him. We're not sure how bad is sight is due to the tumor pressing his optic nerve and/or the brain surgeries, and how much glasses can really help; but I think that if his sight is improved, even if for seeing or just reading it will help. Everything right now I can do to help him still *feel* independent, even if he is not, it helps his Quality of Life. I don't like thinking we are at the point of just audio-books for him, so I hope maybe, just maybe, reading glasses might help him do it himself.

So, my paperwork says that as of April 2012 Wash will be on ALTCS totally and in full effect, and at that point (the social worker explained this from my paperwork) we will STOP having to pay the additional $125.15 and $98.00 Medicare/Medicaid premiums a month. Which I've been having to do out of pocket for about a year or so now. It will be really nice when I can stop being "past due" on all my bills.

Today I am trying to play catch up as best I can, while keeping my eye on him, and feeling gorram awful. I see my doctor this afternoon, and I'm hoping even if there is no pill for my stress levels, she can help with some ideas/referrals, or diet.

In the evening we went over to my mum's house and spent the evening with my older brothers; one who lives around here showed up even though he WAS sick with a cold (he wore a mask the whole night) and my older brother Yoshi had flown in for a night to fly a charter Cactus League team to Japan the next day. We got to share photos, stories, and some laughs. I heard all about my lovely nephew and his adventures (he went "skiing"/sledding for the first time in Feb! He made a life sized 3 foot tall snowman too.) shared some of what was going on with us, and just had a nice night with *my* family around the table. It was wonderful on so many many levels.

Having him live so far away makes things hard, but I'm glad for the technology that allows my mother to speak and teach English to her grandson in Japan, and allows us to share so much so fast. Wash even remembered the last time he had been in town, which was back when he was still getting chemo I think!

I can't think of what else has really been going on, but I've been forgetting things all week.