The largest appreciation

Last day the fundly donation site is open. 
I still have so many medical bills from Kevin, and so many more of my own from my broken bones last year and my own health issues. 
If you can donate anything, it helps. 
If you can share the link and our story, it helps. 
If you can give prayers or good thoughts, it helps.

I'll be filing for bankruptcy due to medical bills this year. Again, anything my caring friends, family, or those touched by the story of AZ driving a young widow into utter poverty can do; it all helps. 

Thank you all so much. 
I was Wash's (Kevin's) caregiver for more than 3 years.
Now the people who care and love me are helping to give care to me, so I can continue on with my life. 

My husband did not survive against brain cancer; but with the love, help, social, emotional, religious, and other support from my circle I can survive this next part of my life as a Widow.

Glass Bone Woman?

Left foot has torn ligaments by my ankle, and a sprained ankle. This alone is 6 weeks of bed/foot rest. Waiting on the X-ray results to see if it is broken as well; from the exam I could have upwards of two breaks in the long tarsals and 1-3 toes might be broken as well.

Let's see;
*Very high intelligence/ Genius
*Picked on /few friends growing up
*Knowledgeable on several subjects, including outbreak/virii paterns
*Had the love of my life, and soulmate die a young, horrid death
*Health issues/ radiation exposure

I just need a crap-ton of money and I'd be a villain right out of a graphic novel!

[or, that is the pain meds talking. who knows?]

Really? Really??!

Full disclosure, I am on pain meds writing this.

So, Fri after services, I was walking to the Pharm that is near the Synagogue and my house. With some awesome friends.
I'm walking down a curb, and my old-ass shoes that literally have the entire treads worn down/through slips. My left foot falls about 4" and I land on it and roll my ankle. I did not fall down though, like I had when I broke my right foot.

So, I was hobbling to the CVS less than a block away at that point, and by the time I got inside was feeling VERY hot.
Next thing I know, my friend is calling my name and I'm on the floor. The adrenaline wore off and the pain made me faint.
Managed to get home and spend the weekend on bedrest, icing my foot.

My doctor knows about it, and I am beyond thankful my nurse was helpful and sympathetic. I still cannot believe this happened again.

I have a full set x-ray of my foot, toes, and ankle area to be done tomorrow. Then, I go from there.

I also know what to look out for if it get worse and I have to go to an ER. I am hoping it will not get to that.

Either way, I already do not have funds to pay for rent, or electricity for this month (due on the 5th) and now I'm adding more medical bills I have no way to pay for on top.
I literally do not even have a credit card to my name to "float" myself for this.

I am worse than screwed in so many ways if I do end up needing surgery. As it stands, looking for work while (best case) I'm in (and WHEN) a walking-cast is going to be even worse than it already is with my 3 year *non-paid* employment gap.
Arizona being a "Right To Work" state and all. And hating sick people, or people who may or do need insurance. Or hating women, and even more so women who want to work.  (Maybe not all of AZ, but certainly the vast majority who is in charge)


I wish this was a great joke being played on me. It's not.


Little acts of kindness I am thankful for:
*My friends coming from another state to visit, even if it had to be cut short
*My friends who are willing to drive me as I don't have a car, or working feet
*My friends who bought me groceries so I could eat this week
*My friends who bought cat-food so the kitties can eat
*My friends who donated a CVS card to me so I could cover the cost of a few needed prescriptions
*My friends who love me unconditionally
*My friends who like spending time with me, and do it. 
*My friends who make me laugh. Who also make me feel safe, if just for a moment.

*Memories of how much my husband loved me and would care for me, attend to me, and love me when I was ill


Without the Hope of something, what is there to hold on to?

Best case, I have complete bedrest this weekend.

Worst case; I broke my right foot again last night/a few hours ago.

I'm not certain if my doc has someone to run the X-Ray machine on the weekend. So, I might have to hold out til Mon. Or, get someone to take me to St. Joes downtown to their ER, rather than spending two days in the waiting room of Tempe St Lukes.

Yeah. I know.


I'll have to talk to my doctor regardless about my bone density.

Everyday there is a new terrible hit to my horrid financial situation.
And I should be easing my stress, not increasing it.
So, shit.

Good not-broken bone thoughts please?

Sponsors

I have not been able to work.

I'm trying to get some proper help, trying to find any odds-and-ends type of jobs I can do (like a bit of dog-walking) and competing against a world where I don't know what to say about my 3 year (paid) employment gap.

I'm making some good progress in my own self to be ready to move/let go of the only "home" I ever had with my husband, and all the memories I have here, ideally around fall or before winter.

But right now I need help.

I need help to pay my rent. ($700)
I need help to pay for my (NOT Smartphone- I have a flip phone and it can't surf the web) mobile. ($68)
I need help to keep my internet on, so I can have access to resources to keep my mental health from getting worse, to look for jobs I can do, to stay connected now to really anyone.
With my extrovert husband being dead and all, (maybe another reason?) I don't really have people/friends/family coming by to visit, or socialize with me.
I need help to keep my electricity and air conditioning on. It's getting to the 90s locally now, and will get hotter very fast, and right now I can barely afford to pay for 2 hours of running the A/C per day.
I need help to pay for my medications, and co-pays. Even my lowest Co-Pay of $4 adds up fast when
there are 5-10 scripts I fill each month. (Depending on my asthma, my mental health, if I have broken any bones say...)

I know it's hard times for everyone right now.
Most tax returns have already been spent.
I'm still waiting on the official total, but for me personally, with the debt from my own medical issues; and of course, with Wash's, all my Fed "return" (which is less than $100) goes right back.
Without me working, and with getting just a bit over $7K total from SSD for Wash, I somehow STILL owe the State of Arizona money too.

I owe everyone.
But, I would really like to NOT be evicted. I'd like to be able to part from this house/home on my own terms, since so little else has been under my control.

I need help.

If you can, please donate. The Fundly site is running to the end of this month, and the PayPal account set up by Wash's Fraternity is still open.
If you don't have anything to spare but a good wish or prayer for me, I appreciate even that.

Share my story.
Ask WHY it is ok for the State of Arizona to leave me stuck, with no services.


I am doing my hardest to try, but I lost so much more than just Wash when he died.

Complete the Circle

"Everyone goes through hardships. The challenge of being a person, with compassion, is to pass that help along to the next person who needs it."


Friends, you all have done so much for Wash and myself.
You've helped to keep us in the home he wanted to die in. You are helping me to stay here right now, where I can still feel Wash around me.
You've helped us pay for food, and medicine, and cool air in the 119F heat of summer.

You helped buy clothes for Wash when the cancer changed his body shape, more than once.

Right now, I am living off of your generosity. When Wash died, our small Disability stipend stopped, so it's literally your kindness that keeps me in this home now, helps me to get food, to visit the doctor and get meds to help me cope after Wash's passing.
You are helping me to have the funds to have the memorial for Wash he did want.

I am so thankful for all of you.
I have something else to ask my readers.

I'd like you to smile right now. Chances are most of you have your teeth when you do.
Think of your morning routine, think of waking up and brushing your teeth, brushing them before bed.
Think of every smile you've given before a photo was taken of you. Yes, even the ones where you may have had braces, or a gap, or something in your teeth.

Now, I'd like you to think about my friend Mary O who cannot do that.
Like Wash, she faced cancer. Unlike him she's still around to fight. But it has cost her greatly.
Mary is in her 30s and does not have teeth. She's gone through surgery, and radiation. She has fought.
Medical Care in the US is something I could, and have, written other blog posts about.
But right now, Mary needs some teeth.

So, my friends, I'm asking you to think tomorrow when you brush your teeth.
Think about your $3.00 tube of toothpaste Mary cannot use or buy.
Think about your $2.00 toothbrush she does not have the luxury of being able to use.

I'm asking you, if you can, go to the link. Read her story. Think about your own smile; could you put a value on it? Think about taking the $5.00 you might have spent on your next toothbrush or paste and donating it so Mary can get some teeth.

As always, thank you for helping me continue to learn to Hope for Humanity.

Visitors

Our friend Salvatore* arrived yesterday/this am with his mum to help out for a few days.

The boys are bonding well and I managed to get two great, solid naps today.

I think this is the start of a good thing.

Epinephrine

So, one of the downsides of Wash's brain cancer is that every once in a while he hallucinates. Sometimes it is visual, sometimes auditory.

This means that often Wash will ask me to verify if he is hearing/seeing something correct. This also means he will wake me up randomly in the night to ask if I heard the "sound" he did. That's a bucket of fun.

But, sometimes he's not hallucinating.

So, for a day he heard buzzing in our kitchen. I said it was probably one of many things we have plugged in and the motor is making a sound. I was wrong! The next day we both saw 3-4 flying things in the light fixture in the kitchen. Since I will die if stung, I freaked the fuck out and ran outside. We called for backup and Andy* came by and he and Wash fought a brave battle that rages between 4 creatures 1" long with wings, and two fully grown human men with a can of RAID that shot a 20' spray.

The Men came out Victorious.

And I promptly called my doctor for an Epi-Pen refill and my landlord to get some Pest Control workers out here.

So, they came today, sadly with little warning. Which led to my last minute harried-ness this morning. We had help on Thursday and Wash actually told his aide NOT TO HELP HIM. So, the place was left a frakkin' mess. I am not upset at the aide, she was listening and caring for Wash, he just kept insisting her to leave things for "him" to clean "later". [I was having a long talk with the Social Worker out of the house at the time] So, Friday my house was a mess, and I was so busy and tired I couldn't do everything. And Wash was just happy because he was seeing a friend, and going to the Avengers movie, and getting to eat dinner out on top! So much fun stuff! For Wash, he cannot do more than one task at a time, and he forgets things. So, all his stuff he was going to pick up and clean, he did not.

Since I knew the kitchen had to be cleaned/cleared out for the pest guys to check, I ended up waking after less than 3 hours of sleep yet again this week (no naps for me, either!) to clean all the things Wash said he would have taken care of.

I know he needs to say these things to make himself feel useful, to feel needed, but all it does is add stress to me. Every time he puts something off- which is 99.999999% of the time, he never comes back to it. That's how his brain works. But, if I just do it for him, or if I do it after he says "I'll do it later" he turns his anger to me- "What, you don't trust me? You know it's your fault, really, you tell me I'm not allowed to do things when I want to!"

So, I just could not handle all the chores and work to do today, watching him and dealing with any help or issues or anger at me, dealing with the pest guys, and no sleep. It's all too too much.

I called my mum. Thankfully, she and my (step)dad agreed to watch him for a while today, let me work and rest a bit.

Wash was not really happy about this. He was confused, and angry and so mad that I "would not tell him where I was leaving him!". I had already told him calmly twice that he was going to stay with my mum today so I could work. He just literally could not remember even as I told him. So, he was pretty confused and angry when he left. He seems to think often that when he goes out for a day with someone else, I'm "leaving" him, "abandoning" him or the like. He just cannot grasp otherwise.

That's painful to see and deal with.

I did at least catch his mother up on things, so his parents really know. I just was not able to lie, to hold back, to be kind about it. He's not doing well. Things have changed, they are getting worse, and they very very likely will never get better again. So.

I cried a LOT this week.

Back to the pests, though! That was my histoire du jour.

Cleaned for 3 hours, and got Wash safely to my mums. He even got treats and snacks to go along with his sketchbook and ses 3 of "Fringe" to watch.

The pest guys came over, poked around a bit, checked outside, looked at my place and my 2 neighbours West of our unit, and came to a verdict of not Wasp, not African Honeybee (several colonies found locally in the last couple weeks) but Carpenter Bees.

So, our downstairs was treated, the outside, a crack in the wall between units filled, and the wooden fencing in my backyard treated too. Same for the neighbours.

Now it's noon, been awake for 5 ish hours, and have a few clear hours without Wash to try and rest this afternoon.

I think my biggest challenge will be to actually rest right now, today, and not use the next 4-6 hours to just clean without a Wash following behind me, or messing right up the things I just cleaned.

Thank you all, Dear Readers for your comments, support, and good wishes. I know, even though it's painful to face the truth, I'm coming into the final stretches with Wash.

I'm just going to do my best for him, and my best to be vocal about my own needs right now.

Stirring the pot

Welp.

The last day (ish) has been quite... interesting.

Wash on Tues had a bad health day, he was having some reactions to his med change. I spent quite a few hours with him trying to distract his pain and discomfort. The upside is these are all very short term side effects so he today feels almost back to his 'normal'.

On Tuesday I was informed that AHCCCS Oversight Dept had been made aware of our issue/situation and would be looking into it. I did not get any real human contact information from the communication. I'm hoping this means someone with power is looking into how William "Bob" Jaegers dropped the ball on our case, and lied. I have no problem using this man's real name. If he wanted to work in a job where he did not actually have to work, there are options. But, not doing his job when people's health and lives are directly impacted is unexcuseable.

In slightly better news, Tues I also heard from someone at the Constituent Services dept of the AZ Legislature. She asked for more information to actually look into our case and I'm having my Social Worker from Hospice help me out there. I think he might also appreciate the chance to ask why (as a Hospice SW) he was blown off by our casemanager Bob Jaegers for two weeks.

ALTCS sent a nurse over to ask Wash and myself some questions and spend about 30 minutes evaluating him. (Which, if you read here at all Wash is very good at covering up his issues for even 2 hours at a time. 30 mins gives no real view as to our lives or issues at all.) She said that he does not outright qualify for ALTCS care but every case that does not immediately qualify gets a medical review. Only one doctor on the review needs to say he does need the care and he's approved. For now, I am hopeful.

It will be a few more days before I know anything about Wash's case. Again though, I'm hopeful.

However, I will not be dropping this issue, or trying to pull it from public eye. No one has yet apologized for the wait, or for lying, or the potential cost in Quality of Life to my husband. I know we are not the only family in Arizona to go through this with ALTCS. I'm beginning to believe as well that if they are careless enough to leave evidence of their lies and harmful policies of us around, there is a lot of evidence that they have harmed others too.

This is a Government run insurance company. They are funded, even partly, from tax dollars. They are require to have Oversight, and they are publicly to be held accountable.

To all who have called, emailed, and faxed on our behalf - I truly thank you. I'm truly saddened that I live in a place where it requires this type of effort and luck to get the care my husband qualifies and is entitled to- not just as a taxpayer and former earner, but as a human being. I believe every human is entitled to healthcare and services as a basic human right. Not even those who would deny that care to others, like my husband or myself, can change my mind. Every human.

Step Up, Arizona, or be Shamed

If you are willing and able, please share this around. Please help me get the message out to those who can help Wash.

6 Feb 2012

To Whom it May Concern,

I am writing to you about two of your constituents in Arizona; S Tashi Pratt-King and Kevin "Wash" Pratt-King. The live in Tempe, Arizona and they need your help- today.

Kevin and Tashi married in the spring of 2009- and within weeks Kevin was sick from an un-diagnosed brain tumor. Tashi had applied for AHCCCS medical coverage throughout the summer and fall of 2009, denied every time. On Tashi's 23rd birthday Kevin had a grand-mal seizure and his tumor was finally discovered at St. Joseph's Hospital in Phoenix, AZ.

His tumor was 9cm- almost as large as a newborn's head. It took two surgeries to remove the tumor and shortly after the couple found out it was malignant and terminal. Kevin was just 25 years old.

After the surgeries they were both approved for AHCCCS coverage, but that would be the start of the insurance issues.

For the past two plus years Tashi has been working full-time as Kevin's non-compensated caregiver. He is not able to be independent anymore and from the start needed full-time care. AHCCCS does not cover the costs of full-time care, so Tashi has been working literally a 24 hour, 7 day a week job caring for him. She does not bring in any income. Kevin receives a small monthly stipend from Disability, it does not begin to cover his real medical costs.

The "Life expectancy" for Kevin's cancer (Glioblastoma Multiforme) is 9-12 months-with treatment. He's at month 27 now.

Brain cancer has several predictable side effects; seizures are common, depression, memory loss, aphasia, blindness, weakness, and severe fatigue. Kevin has all of them. As hard as he has been fighting to live the last two years, he is degrading. The level of care he needs is more than one person can take on around the clock.

In January of 2012 Kevin applied for Hospice Care. This was to go hand-in-hand with his coverage by ALTCS; the Arizona Long Term Care Services, through AHCCCS. Kevin's ALTCS approval letter came in Dec of 2011. This would allow for Respite Care to be provided to Tashi, who has spent the last two years doing nothing but caring for her dying husband. ALTCS covers the long-term-care that his primary insurance, AHCCCS does not.

In January of 2012 Kevin and Tashi were notified through Hospice (never a direct contact from AHCCCS to the couple) that Kevin in fact was NOT covered for ALTCS care, and even with his continued mental and physical degradation, Tashi would still be left to bear all the care.

Kevin's Social Worker (through Hospice) spent more than 2 straight weeks in January trying to get in contact with William "Bob" Jaegers - the caseworker assigned to Kevin's ALTCS case. Bob did not respond until today, Feb 6th.

Two weeks to contact a Social Worker for Hospice (End of Life) is not acceptable for ANY level of healthcare work- unless ALTCS hoped by delaying Kevin's case, he would die before any monies would have to be spent on his care.

Bob confirmed to Tashi that it would be 45 days from "start of application" to have ALTCS approval. When Tashi responded she had proof of Kevin's acceptance as of Dec 2011, Bob flatly denied such 'evidence' could exist and their records showed Kevin applying in Jan 2012.

Please help take immediate action on behalf of Kevin and Tashi. They have evidence (see attached) showing approval of Kevin into the ALTCS program as of Dec 9th, 2011.

Kevin is dying. He is only 27, but with a very virulent brain cancer. Tashi is 25 now. She has not had a "day off" or "weekend" in more than 2 years.

I write to ask you to investigate this matter; or shall we be left with the assumption that in Arizona if you are young, poor, or terminally ill that the State will leave you to die without medical coverage?

Thank you,

S Tashi Pratt-King

(The last paragraph of the letter? "Approved for ALTCS")

http://kyl.senate.gov/contact.cfm

http://mccain.senate.gov/public/index.cfm?FuseAction=Contact.contactform

http://schweikert.house.gov/Contact/

If anyone has media contacts, please share.

Stress

Wash has his EEG tests and his Epilepsy meeting today. I'm beyond worried- mostly that they might not find what is causing Wash to have these episodes. He is not happy right now, and his quality of life is not where it needs to be for him.

I'm consumed by worries.

I dug out $4.25 in change, and I have to hope that that is enough to get us to the hospital and back home.

I have to pray the co-pay is low enough my bank balance still can pay it, or that it's big enough they will work with me and not expect instant payment (like the specialist who charges $150-760 per visit and who I am still trying to pay back from August appointments on) which we can't come up with.

I'm hoping that my cell phone service is not turned off yet- I'm waiting on more of my own doctor appointments to be scheduled.

I'm hoping I'll be able to find money or some way to keep our electricity on after Wed.

I'm hoping I'll have money to pay for Wash's medications this week.

I'm hoping that the $51.66 I have left on our SNAP (food stamps) will in fact be able to last another 9 days. No, sorry, 10 days.

Outside of that all consuming worry that the world I've tried so hard to keep going for Wash (at least until he dies) might come crashing down, we had a few good moments this weekend.

I trimmed the tree on Sat and hung lights and other decorations. Wash had a few episodes on Sat and was not really co-operative with anything I suggested, so Sunday I tried very very very hard to be super patient and just get him engaged with the world instead of sad in bed. We had a good day, I hope to write about it later.

God-damn.

I wish I could fucking just think about how to best care for my husband and give him the happiest days he has left, instead of just being worried worried worried about how I'm going to pay for him to live here, eat, have medication, have power....

Fighting cancer is so much harder when you have to fight poverty first.

Poverty is fought before his cancer.

How fucked up is that?

I just can't do it all.

Spirit in the Sky

I want to be clear on something- I love Wash. He's my husband and my best friend. I love him.

That being said, I can sure as hell get angry at the cancer in his head and the effects of trying to kill the cancer and not my Wash.

He had a BAD day on Friday. They are the kind of days that the oncologists and nurses and friends who have gone through it before can warn about, but never really prepare you for. (Thanks Jo & Rose!)

He was just not Wash on Friday.

He was angry. He was forced to confront some issues in his therapy and they came out on me. He can't exactly take his own brain out and yell at it, so I take the brunt. That part sucks. I don't even know really how to describe these days to his friends and family- the close ones that need to know the details. Remember that Wash can pull off "normal" with a hat for a few minutes to most people, but thankfully he has found some comfort with a few friends just being himself.

He was speaking in the same voice, and it was the same body. I can really only describe it as close to how he was acting when the tumor was in his brain- his voice, his body, but not his words or his mind.

MY husband would never say such frakking evil things to me.

Cancer? It has no reservations about saying the most hideous thing and with the sharpest of points. Case in point- I'm trying to help Wash, trying to explain that Friday I was not the enemy but he might need more help than I could give. I have to think it was the cancer or some damage that caused him to say such nasty things to me.

I watched a film last night that was a small companion documentary to a book I read a few months ago on forgiveness and grace. Even knowing that it is not always my husband's WILL that causes him to do something horrid - that still needs some communication of forgiveness to pass between us. We're not just roommates. We're not just best friends. I'm not just a 24/7 nurse- that is my husband slowly being eaten away by cancer in the other room, our relationship greatly impacts his length and quality of life.

We don't go to bed angry. For me the chance of him not waking up tomorrow is always so great I never want to risk sleeping away out of anger again. It really only wastes time we don't have.

What this means though, in reality, is that I have to be willing to forgive ANYTHING by bedtime.

This way of thinking, which is a far cry and change from my own youth, proves challenging to me sometimes. I find myself forgiving Wash with more ease, but feeling more anger at others who I see as wasting my time or energy. It's not really mine, for right now Wash is borrowing it all until he passes. I see things as my time can be wasted, but not his.

It all has to end with letting it go, though.

Friday was a monster named brain cancer living in my husband's skin.

Saturday he seemed to come back. That's the terrible nature of this. I can always always always hope that he will be back to "Wash". Cancer says I really never know who he will be when he wakes.

Every new day I am thankful that he is still with me. 3% make it 18 months. He's at 23 months now. He's a person, now defined by a statistic.

My goal, my challenge, is to make sure that every day he is alive here, now, is better in quality for him than death. Some days I think I fail. Some he falls asleep happy and telling me he loves me.

He's the other half of me. He's my heart. He's the person I would take cancer for. He's the man I'd wait 2000 years for, locked in a box.

How can I stay angry at the person I'd fight hardest for?

Sometimes.... I wish it was not real. A great story, a great myth. I could conquer mountains, Hell, and gods for him. I would have that River Tam shot, saving him, and in the end, a medical CURE would be found.

I remember it's all real instead. There is no magic cure. Fighting won't really save his life. I can't bring him back once he's gone.

There is no "set" ending. There is no happy news or 11th hour reprieve. Real life is so far away from fiction, the little minutiae of living each moment. Real life means now knowing that the "happy ending" only happens in fiction.

Atoll

So much for the afterglow....

*Twitch*

Bad day for my asthmar. Kinda shitty air quality, plus hours behind second hand smoke and bus exhaust. Then we got to my mum's house and I had an attack walking in. Right now they've got a little construction going on so parts of the house are sectioned off, but the crap is in the AIR, so it only helps so much.

Cranky today.

We're running into money issues and it is just another stress on me.

Oddly, aside from the money, right now Wash has so few doctor visits. He's "stable" for right now. For some reason this just puts me into such more worry....thing's going so well when is the horror of the brain cancer going to come back? When, that constant fear and feeling like I'm holding my breath waiting for the worst. Right now I should be focusing on other things,the happy things like the time we have right now.

Frak.

My depression, my anxiety are eating me alive.

I tried today to function, to be what he needed, what I needed, and I just failed.

I ended up having to deal with a new crisis this morning, and the little stresses just overwhelm me again.

I feel like I am just growing more and more scared of life.