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. 

For Wash, A Rally Cry

Please remember friends, when Kevin "Wash" first became sick in 2009 we tried for months to get him insured and seeing a proper doctor.
We could not afford a trip to the Emergency Room; our local one which would not have even shown his cancer, because they do not have MRI capabilities.
His tumor grew over months. Agonizing months for him, and me.
We were denied AHCCCS insurance first in August 2009. 
Again in September. His Glioblastoma Multiforme tumor growing the whole time.

October came with an appeals date for health insurance; October 28th, 2009.

Kevin was hospitalized from the tumor and brain damage on October 26th, 2009.

Do I think having proper insurance, having a proper doctor earlier would have saved his life? No, he had a GBM. It was a death sentence.
But, I do believe that had we been able to get him a proper MRI that summer when his symptoms were first evident, his tumor would have been smaller, and he might have had a longer time or a better Quality of Life at his very end.

No one should face what we had to at our age. Because of the Affordable Care Act after 2014, hopefully no one will.

But, people DO die in this country every day, who could have been saved with preventive care.
Vote, because your life DOES depend on it.

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.

More Fuckery

Got a notice this week; I have a few days to respond to a questionaire about my "accident" (??) or I lose my health insurance.

Apparently, AHCCCS (my insurance) believes for some reason that another "individual or corporation" caused my broken foot (based on the date on the notice, I believe this is for my fractured foot not my broken toe) and AHCCCS wants me to name them, or else pay approx $15,000.00 myself.

WHAT?

I fucking FELL. Because *I* was not listening to my doctors to take it easy on my broken toe, and it was City sidewalk. What, are you going to sue my heavy garbage bags??

It makes NO sense.

I left them a message to call me back about my case within one business day. If I don't hear from them by noon tomorrow, my afternoon will be spent on the phone with the Attorney General of Arizona, and the State's Insurance Commission.

I am too tired and too godsdamned sick to let them take advantage of me.

I also contacted my doctor's office; they checked the billing with me over the phone; they billed about $217/change to insurance; and they have been re-imbursed their 70% already. The gal in billing assured me there was NO procedure they even HAVE at the office that costs $15K to billing. My X-Rays were only $200/each! In the doctor's office; I never went to the Emergency Room! [Where a $15K bill for a broken foot can be understandable]. Oh, and they confirmed I had a $0/balance at the office.

I have a sinking feeling since it is plan renewal time (Sept) they (Insurance Comp) are doing whatever they can to drop sick/ill people from the plan. Like me, who costs a lot of money, since I can't really take proper care of myself while I'm watching Wash for 21 hours per day.

Every single year they try to drop me from the insurance rolls, usually when my health plummets and I need doctor care and supervision even more.

Ugh. I have no patience for incompetence anymore. I won't play by their rules. Their rules are literally set up to kill me. Frak that. I'm playing by whatever I have to to stay alive.

As for Wash, he had a pretty terrible day yesterday. He is having a lot more pain daily, so we are getting some new longer acting stuff to try today, in addition to his hourly/breakthrough pain. His headaches are back. To me, that along with his balance issues, his eyesight going, his ability to read is going... he is still very visual, so drawn out instructions are still understandable to him, but things like cursive is just too complex for him to even read now.

He is also sleeping more, which could be from any number of things, but his Hospice Nurse agrees with me that letting him rest is perfectly fine; when he sleeps he doesn't hurt, he is more at peace. I like that.

We have another friend coming in from a city a few hours away this weekend to pitch in and give me a hand watching him, and getting me out a little bit when his Aides are able to watch him. I now have my own bathroom back again, which is GREAT, and I've cleaned the office/library up enough to get a little twin bed in there for me. So, I have some space for me. I've been crying more with this space; I have more privacy, but it hurts so deeply to understand the WHY behind me "moving out" of the master bedroom.

It hurts too much emotionally to sleep next to him. Not to mention his snoring, his kicking, and his pain screams when he wakes up literally screaming in pain.

He can't remember, so he keeps offering to sleep on the couch so I can have the bed. I tell him I am ok, and I stay in the bedroom with him until he falls asleep each night so he has that feeling of security when he does fall asleep.

I've been thinking a lot about my maternal grandmother, my Grandy lately. It's the 6th anniversary of her death in a little over a week, and 7 days after that will be the 6th anniversary of my paternal grandmother's death. Yes, I lost both my grandmothers in a 7 day period.

I tend to get seasonal depression every year in Sept now.

The selfish part of me hopes Wash won't die in September, because that is just too emotionally hard for me. But, I know it is a selfish thought, and he needs to go when he is ready; not me. It's not up to me.

But, since moving into the office/2nd bedroom, I've been thinking a LOT about Grandy, feeling the same kind of comfort she used to give me when I was alone at her house away from my parents as a little/young child. It's very hard to describe, but late at night, when the clock ticks past 4am, I feel "her" and I feel safe and comforted enough to sleep. I don't want to think too much into this, outside to embrace this feeling of comfort when it comes to me.

I am very happy with a few cleaner spaces. Wash is still having a very tough time adjusting. He wakes up with a LOT more confusion these days. His verbal skills are declining, and he needs his Walker or his wheelchair now to really get anywhere.

I am broken-hearted he has degraded this much. He never wanted this. He wanted death before he lost control like this.

Based on his pain, his headaches, his balance, his smell change.... so many little things I never picked up on back in 2009 I'm constantly seeing now. I'm more than 90% certain there is another tumor in there, maybe a few small ones. He still does not want any scans, and I won't force them. I think he really is happier when he can ignore or pretend there is not some strange thing in his BRAIN killing him.

I think I would feel the same if it were me.

It does not make it any less painless to watch though. I've been dealing with a lot of my own grief issues. There is so much loss; what already happened, and the loss of our dreams and hopes and frankly, my own future. It is lost. What I wanted, what I desired, is lost, forever.

I will never bear his children. I will never get to look at a child, MY child, and see any part of him looking back at me. That will never happen.

It is heartbreaking, and soul-crushing. I have to lose my best friend, my husband, my partner I should have had for 40-60 more years, the life we would have had... it is gone.

As much as I am happy for the friends I have that are moving forward with their lives; and I really am. I'm happy when friends buy their first home. Graduate. Buy a new car. Get their career, not just a job, get engaged or married, get pregnant or have their first/second child.... I am happy for the people I love to be able to have these wonderful things happen.

The same time, it just hurts so much to know all those things *I* will never have, will never achieve.

I don't see myself getting out of debt and ever graduating. Or even being able to pick a new major and start literally all over in school, because I'm so traumatized by Wash's rare cancer to work in the medical field like I had once wanted to and was in school for.

I don't think I will ever have Credit again to allow me to get a car that is new or even less than 15 years old. Forget about a job or career for me and a house/home for myself. Nope.

I found my love and married. Odds are not in my favour to ever meet anyone who I will love like Wash, or want to give my whole life to, like I did for him.

I'm going to be 26 in two months. When that happens I will have to accept once and for all I will never have my own children. My doctors told me long ago waiting was not good, and my history does not have a good track record for being able to get or stay pregnant. The odds of me "moving on" soon enough after Wash does pass, heal, and find someone who I somehow DO want to have a child with...? I just literally cannot see it ever happening.

So I am having to mourn that I will never be a mother myself. I never thought at 26 that's what I would be doing.

This is my/our life. This is what is looks and feels like watching the person I love more than my own self lose everything about who HE was, and become a shell of a body that is just in pain.

It's not fair. It's not "right". And it hurts in a way I wish so deeply that no other human should ever have to face.

I'm going to try to nap, or maybe shower while the Aide is here today for a few hours.

At least I (and my awesome friends) have figured out how to order me groceries to deliver to the house; it is a nice thing to have to NOT worry about food in the house.

Freckles

Wash is tucked away, with his blankets and little stuffed dog and Hoban the Bear. His pain spiked up very suddenly this evening but we managed to get it back under control and down to where he can relax, not spasm and sleep.

Lately he's been sleeping nights anywhere from 13-16 hours. The good news is the pain medications seem to be working, as for the first time in three years, he says his active neuropathy pain is going down. He's overall happier when he is in less pain. Though at this point, that is mostly the physical pain that is being addressed. The emotional pain from facing mortality at his young age with his already traumatized brain ... it can certainly make things harder some days.

I have been trying very hard in the last few days to really be calmer around him and just agree, even if he is making no real sense. My Wash would have wanted me to have passion still, to disagree and debate. But, right now, living it, I'm told left and right "Don't argue. Don't fight him anymore." Wash would not have wanted that. I'm not really certain what I want, and what is easier; or if they are now the same thing.

We have a good friend and his mum coming in this week from SoCal to help take care of things around here for a few days; to help watch Wash, give me some rest. To help me clean the house, take care of things I cannot with a broken foot. To let me get off my foot. To give us support; since Wash knows and really likes this friend too.

I want to be clear that it is not a case of our local support system being a "total failure". That is not true at all.

The issues are that our local support is 99% people in their 20s. Who are all just starting their own careers. We had 4/5 of our local support who lives in the same city as us move in a 5 week period. This also happened to be around the start of my foot issues. A correlation of unfortunate timing.

Our local support works, they have to, and are lucky enough to have jobs. I also really want to emphasize that they are our age; dealing with serious issues this young is a challenge in general, to have handled everything that has happened to their friends (us) over the last few years must be terribly trying for them as well; I'm honestly surprised we have not lost even more friends; like the couple I knew for more than a decade, helped keep together during times of relationship crisis, and then when Wash was ill and they were getting married... both of us fell off the map. It ended so badly. I'm still hurt two years on.

So, I am thankful for those who have stuck around and been there, steadfast. I'm thankful for our friends who show up weekly and give Wash a sense of stability and love. I am.

At the same time I recognize that our local group is quite small, and quite limited by age and work. This has caused issues. The conflagration continued with the saga of the Awful Social Worker (ASW) who we have not spoken to or heard from in two weeks, since he stopped by and Wash had to give him the "It's not you, it's me" speech to get him to leave. This has effectively left us without a Social Worker.

Wash's insurance covers 22 hours per week of caregiving (that is not me). That works out to 3 hours 6 days, 4 hours 1 day of the 7 day week. That also leaves 20-21 hours out of every day I am alone here as the sole caregiver for Wash, who needs EVER so much more help these days with everything. This means that for the last three weeks, though I have been wearing Das Boot I have not been able to keep off my feet as completely as my doctor requested of me when the break first happened.

Which leads up to this week, when help arrives, and today, when I had my first set of follow up X-Rays.

There was some expected news and some good news, tempered with some mild hope.

My foot has not healed. In fact, it is still quite weak and broken.

However, my doctor also knows me, and he knows Wash (the office took care of Wash as his Internal Primary Physician) and he knows our situation. After I explained that I was being as medically compliant as I could, without putting my husband in danger, he decided that giving me 3 more weeks in the Boot to try to heal more would be ok. He also gave me a note to pass along to Wash's insurance in the hopes that with some medical backing and paperwork the insurance company will allow for more Aide hours to caregive for Wash while I stay off my foot and let it heal naturally. Or else my insurance (which is the same as Wash's; AHCCCS, the State Run Group) will eventually pay thousands for my orthopaedic consult, hospital stay, surgery, casts, and physical re-hab. Giving me a full day caregiver for 3-4 weeks seems ever so much more fiscally practical, let alone humane.

I don't trust at all my Insurance to make a humane decision though.

Ah, I'm tired.

So many of my close friends are going through some losses of their own right now. I ache that I cannot be there more for them.

I'm also so thankful for my extended friend family, and the Geek/Browncoat Army which has rallied to help raise funds for my friend to come help us and take care of me and Wash, and help me take care of Wash as we move towards what I think is the end.

He is in more pain each day, but so far thankfully each day we have been able to keep it under control and not to an unbearable point. He also has some new worrying swelling in his face/head and some specific pains that make me wonder if he has another brain tumor and perhaps where it is working it's way around in his brain.

He's not playing with LEGO sets too much right now. He got a couple LEGO books and I think is reading them and trying to get an idea to do a project with a mix from his sets. I hope. I hope he is still enjoying them, even on some level. He enjoys less things over time too.

Burgers he still loves, though, and watching Dr Who with our friends. Warehouse 13 on Monday nights, where he still claps at Jane Espenson's name on the credits. Every.Time. Every. Week.

He plays games, like "walk the plank" and some other Pirate themed stuff. His Aides are wonderful and take care of him, clean after him, and play with him when he is awake and has energy for it.

There's a few other things, but I'm quite tired and past the point I might have been trying to make with this post.

Cheers for people who love and support others, be it by phone call from across the country, or bringing over a set of burritos for a terminal guy to eat, or friends buying groceries to be delivered since my broken foot in Boot makes driving impossible. Postcards. Texts saying "I'm thinking of you." So many ways to show how much care, compassion, and friendship exists.

We are rich in friends all over the world, even if our local group is numerically small.

Ranting

I can think of over 2,000,000 reasons why I dislike/hate (policies) our Insurance Company. The State run, "for the poor people" company.

Cause in our state, even the companies run by the Government are "profit" centered, not focused on giving the BEST healthcare to the Citizens of this state. It has focus on the CHEAPEST care.

AHCCCS does not cover my CAM Boot/cast [DAS BOOT!]. Apparently they only cover casts or walking devices like that if the patient is under 21, or a diabetic. I am neither.

I also now need $209.86 for said Boot. [I spoke with the guy who owns the medical supply place, he's willing to deliver and fit it for free on me in home because of the situation with Wash, but I still have to pay for the boot the insurance won't cover.]

So, I either go without and let my bones get worse and need surgery, or I need an additional $200 from a non-existent income.

THIS IS EVERYTHING THAT IS WRONG WITH PROFIT BASED HEALTHCARE.

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.

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.

Crashing out

Dying is not cheap.

Just got the MediCare copy of Wash's bills since he started Hospice (We have at most a $5 out of pocket co-pay for some things, Hospice bills MediCare directly for the rest)

So, I've shelled out about $1000.00 in out of pocket/uncovered expenses for Wash's meds per month.

Of the covered /paid by insurance stuff;

From mid January when he went on service to end of April, MediCare has now paid $21,210.42 for Hospice services.

Even dying at home with Palliative care ain't cheap.

/Yes, I'm glad we're 95% covered, but it's still amazing.

Where's Mousey?

You don't scare me.

I woke up yesterday at 9am. I worked, really worked, the whole day.

I watched my husband forget when he was, where he was, and parts of who he was.

I regularly stay awake for 20 hour shifts out of a 24 hour day.

I am watching my 27 year old husband die, and die from a disease that takes away who he is, what he loves, and his memories before it begins to take away his physical being. Which it has started.

So, you, Mr Debt Collector?

When you call at 8:23am, after I've been asleep for perhaps 3 hours?

No, I'm not compassionate this morning. I'm not kind. Cancer is not kind.

I'm going to honestly tell you, you will get nothing.

We have no money. We have no income.

Wash will never ever be able to work again in his life to pay off his medical debt.

We owe the State, the Hospital, and the Federal Government well over $1,000,000.00 already for his care. Really, we hit $750,000.00 before he was even discharged from the hospital. It might be close to 2 million dollars now from his years of care and treatment.

I'm 25. My credit is already trashed. I did not graduate before my husband became terminally ill.

I got to see that $1 million dollars of care cannot put a broken person back to "whole".

I saw a 8cm tumor take over my husband.

Mr Debt Collector? You don't scare me one little bit.

I can pay you in tears or perhaps blood.

But money? What's money to Cancer?

You are far, far, far less scary to look in the face than a diagnosis of Glioblastoma Multiforme.

Fluffy Days

So much to do today, I don't have much time for an update.

Someone from the long-term care side of Wash's main insurance; AHCCCS is coming over today for another medical evaluation. Sadly our social worker can't come til tomorrow to explain things, but I am just going to write down every question that I have today with the new 'case manager'. I got some paperwork from ALTCS a day ago (finally!) but it is 9 pages of financial reports that I just do not comprehend. I cannot tell if we were approved or denied again! At least they were correct with our reported income; $26.00 in the bank. Hopefully the Social Worker will shed some light on the papers tomorrow.

Wash had an interesting day yesterday; He woke up very confused, was not certain really what day it was or the things he needed to do, even after looking at the schedule on the board I put up for him. He was just getting so mixed up and a little scared. I called our Hospice nurse, who spoke to him for a few minutes. Since he was not aggravated with his confusion this time, she asked us to check in again in a few hours, see how he was then. He was not angry at all, just a sad and confused.

My mum came over in the afternoon to help us on a couple errands, and Wash was feeling a bit better when we went out at first, but he was tired and dropping by the time we were done with the first thing. Poor guy. I had him sit down in a chair but he was still just so tired. I think I should have just put him in his wheelchair yesterday for going out.

We took him home and put him to bed while I went out to finish my errands as he slept.

He had a 2 hour plus nap and was a bit more lively when he woke, and a lot less confused at that point. I called the Hospice Nurse back, she spoke to Wash again and seemed to agree that resting did a good job of helping to "clear" his brain.

It was a busy day on top of taking care of him.

I'm doing my best to catch up on emails and such, I ask a little patience.

So, we have the entire afternoon blocked off for Wash's medical stuff and then recovery time for him, and then it's the last Shepard's Pie Tuesday for the "winter" so I am looking personally to my [step]dad's cooking tonight. He makes some wonderful vegetarian meals for me, and I love so much that he does it with love for me.

AND THEN comes Wednesday and my happiest hopeful moment of the week; my older brother is coming in from Japan! He's only in town for one night, as he was hired to fly some folks in for a Spring Training game and fly out tomorrow, but I am so excited to see my brother! He's about 12 years older than me, so we are not *super* close, but he is my older brother, and I love him like I love every one of my siblings. {Step or bio}

I want to also take even a minute and just write out a thank you to every single one of you. Everyone that has stopped by and read my words, or heard Wash's wish, or spread our story, or felt moved to help in some way, thank you. It is every single one of you who gives me Hope for us as humans, who give me Hope that we as humans can in fact come together.

I will be hoping for a good day for us, a good day for Wash, and I honestly hope that every one of you, Dear Readers has something good in your day too.

I hope you know that you are loved, and thanked, and appreciated just as much as Wash and I feel today from all of you.

Civic Duties

Not a Bus Strike or brain cancer can keep Wash and myself from our Civic duty to VOTE.

If I don't participate in the Electoral process, how can I even think to voice outrage or support?

In other news, I have awesome friends. Some girl friends got together to get me a nice tea brewing set inside the mug (with lid!) AND- they got me motherfrakking compostable tea for it! This is how I know they know and love me; not only the tea, but they know I love gardening and got me tea that would serve me well after I drank it. I am in love with my MFCoAW.

Also, some friends of ours (Roseanna, Hi!) sent us the coolest gift set; soaps from the oldest apathocary shop in the US! Wash got a set of soaps that former Presidents used! (scent wise, not a old used bar.) So, he can now smell like Washington, Ike, or Kennedy! I am fascinated by the history of it, and the scents are really nice too! Wash is adoring the idea that he smells like a former President.

We are both excited for tomorrow. 3 years married. Considering everything we have overcome together, I think it is amazing. Some days I feel like we have packed 3 decades into 3 years, then again, we have to.

Wash is getting some help in the afternoon to make dinner for us. I'm still hoping for some cool things in the mail for him, and still hoping on the off chance he will get a "Firefly" type congrats. A big part of why he has fought against this cancer (that he really can't "beat") has been for me. Much like everything that I do for him, for his smile, for a memory he can remember; he has fought to stay alive in part, for me.

He sees something so special and good in me, he has fought death to stay by my side this long.

I think that is a pretty special gift for any day, let alone our anniversary.

I'm a very lucky person, even on the bad days. I have still had 4 years together, 3 years married with the love of my life. With the other half of my soul. The person who resonates so deep within me that I will go through hell and back to have him even for one more day.

Frak cancer.

Frak brain cancer.

Frak tumors.

Frak chemo side effects.

Frak doctors who don't think he is worth "saving".

Frak insurance companies that think he is too expensive to keep alive.

Frak the drama.

Frak the bad nights and bad mornings.

Frak the tears.

For 3 years I have had the honor to be married to the person I love more than myself.

For 4 years I have known the man who changed me, and believes in me, and loves me.

It is bittersweet, but I am happy and thankful for every memory- happy or painful.

Happy almost Pi day, indeed.

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.

No-glow

I've gone out to do a lot of errands in the last few days.

That means I've been around people and children.

I woke up this morning from a horrid dream to go vomit in the bathroom for a while.

And after getting off the phone with Wash's insurance I understand. I'll have another post later today.

For now, I must off to slay some Insurance Dragons.

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.

Uphill

Battling Insurance today.

"So you're poor and sick?"

"Yes."

"Prove it."

"Fine, here." (papers)

"Ok, but WHY are you poor?"

.... really?

My husband is dying of BRAIN cancer. He will never work again. The State of Arizona does not pay *me* to be a full time caregiver, that's all volunteer. No one "pays" me. It costs money to live and a fuck load more money to not die.

It's a stressful day today. I'm hoping things will get better.

Don't have anything but Hope today.