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.

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?

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.

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.

Survival

So Wash was admitted into the hospital today and thankfully I got to take him home.

We were there for about 4 ish hours; he had his tests and though he did not have a grand mal, he had some seizure/unusual brain activity.

They kept him for observation for a little while after his tests. He had to be taken out in a wheelchair though, afterwards his right side was quite weak with bad neuropathy. He managed to walk to our front door by leaning on me.

He fell asleep when we got home for about 3 solid hours. Our kitten Leto did not leave his side. When we came home he just snuggled up right next to Wash and stayed there; he is still just a few feet away right now. He loves Wash so much, it is really touching.

So, I take from this Wash will have his anti-seizure meds changed - we see his Neurologist next week. His right side has since equalized out mostly, so he feels almost back to his baseline.

At some point, I will have to cry. It's a lot of emotions for me to go through and process and there has not been much in the way to get me relief.

Everything stays the same, and changes at the same time.

-On top of that, we found out today Wash's hospital was robbed; their toy donations stolen. http://www.azcentral.com/news/articles/2011/11/30/20111130phoenix-hospital-toy-donations-stolen-worth.html

We try to donate as many toys as we can afford every year; sometimes only 2, sometimes more. I am ok if I don't get anything, but for the kids in the hospital- once you have spent at least half a month of your direct life living at the hospital, you understand every chance at a good day means a lifetime down there. A Christmas where each kid feels special and loved, magnify it by a million for the people who have to live there. They've lost 90% of the toys.

Even if you are a new or casual reader of my blog here, you know I ask for help for Wash. Well, I'm asking for a little help now too; Dear Reader if you were thinking of doing something for Wash this year, I thank you and encourage it (more on that in a later post). However, if you were going to help me in a personal way, I ask this instead. I'm not a material person, I have gone without before and can do it again. Please donate a toy at our hospital. I might be lucky enough to have decades of Christmasses again, these kids don't. Like Wash, this might be their last.

I'm running on about 5.5 hours of sleep right now. I need a good rest; I have my own doctor visit tomorrow.

Bright side; we have lovely friends who come to help- they bring dinner.

Laser Cat

One day down, just have to make it through today.

Wash did not get all his testing done yesterday. We arrived thankfully early for his appointment (paperwork! ) and the first problem arose; no record of his appointment.

Seriously?

They knew who he was, one gal even remembered seeing an email about him.

So we waited, and lo and behold, the very time we were supposed to have an appointment the doctor was free!

So we had a long visit, the doctor had already had a conference with Wash's neurologist about him and we were asked various questions and Wash had a few physical tests.

The specialist does not think he has epilepsy per se, but was concerned about some small seizure activity in his damaged frontal lobe- it seems to fit what Wash has been feeling.

So, tomorrow they want to admit Wash to the hospital for more tests. They want to take him and try to induce seizures in him. Now, rationally I understand the need for this test, and the information it will provide. Also, he will be in the hospital, so if he does have seizures, he is in the "best place" for it.

BUT, even knowing that, it is scary as hell for me to know they want to put him through that. I know he is scared and I am too. No one wants a seizure, and to have one if not more induced... not a pleasant thought.

Thankfully I am feeling better this week than I was last. I have more tests of my own this week, but I am a little more hopeful right now that I won't have to have my own surgery right now.

I have to rise above my own feelings and be strong for him for this.

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.