Monday, August 8, 2011


Just as an aside- Wash and I made up before bed. We have a policy to work any fights or arguments out before bed- it is just too much of a risk for me to ever go to bed angry; what if that is the night he doesn't wake up?
It is important to me that we do talk, converse as normal, which does include the standard new couple stuff about who's turn it is to clean what, or which tv show to watch... sometimes with Wash's situation though even the little things can seem heated or big and it gets blown out of proportion.
We had a teddy bear fight and worked past some stuff.

Today we went into the lawyer's office to get Wash's will/living will/power of attorney stuff done. I think it was harder for Wash to prep for it than to actually just say/write down what it is he wants. I hope he can process his feelings and will be doing better now that it is both done, and he is not immediately dead (yes, I think subconsciously he did think that would happen.)

In the bigger and more pressing news, we are screwed. Back in May (ish) I got some letters from Social Sec and MediCare stating that Wash finally qualified and there would be issues resulting. Aside from his prescription coverage changing (and right now we are fighting over his anti seizure meds being covered. The same one's he's been on for a year now...) the government would be charging us a monthly premium for MediCare- AND according to the paperwork be paying us a monthly sum to help (at LAST) with the medical expenses. (Yes, dying of brain cancer is expensive. Even palliative care. Imagine if you were 27 and dying? Wouldn't you want to die with your spouse in the home you have known all your adult life? Well, Wash does. And frankly, his wants count.)
So, they would take out $115.xx and change and -in theory- according to paperwork give us $605 monthly to help with medical costs (right now we run around $1000.00 month in uncovered expenses relating directly to medical care).
Today after the 3rd month with this payment still not showing up and LOADS of bills to pay... the rep for the government says that our money first goes to the State of Arizona and then they are supposed to be giving us back "the extra" above the $115 deductible.
Which they haven't.
And MediCare can't make the state pay us our money that is allotted to us and should be going directly to the PATIENT for his care.

Dear Readers, I need help. My bank account right now has a little over $9. I have two doctor co-pays tomorrow and possible prescriptions to fill. And gas for the car to get us there. We have a friend who is helping us/floating us right now and I'm hoping to get some funds in a week or more.
Honestly, if you can, please help us. There is a very small safety net to begin with if you become terminally ill in your 20s, and it seems in the past three months ours has grown a big fat hole in it.
This is me laying it all out in hope.

I hope that humanity, that individuals can make a difference more so than politicians who would rather talk than save my husband's life.

I hope to have better and happier things to update later.

Thank your deity/self / whomever if you are not terminal, chronically ill, disabled, or un-insured. Often it can be a miserable experience (fighting for coverage or money) to just try and live, let alone trying to NOT die.


  1. So.. I was just wondering.. do you ever let him have it, you know, when you are mad? I got pissed at my hubs on Sat. and I blasted him with just about every bad word that came to mind. It was very.. therapeutic haha. When I apologized later, it was so funny to think of it that I actually laughed the I'm Sorry.

    I sent a small donation, I am sorry it couldn't be more.

  2. Hi,
    I know it wont help but I understand your worries right now, my Husband died of a GBM in June and I know how tough it can be as a carer. Please just remember the good times, I am sure you have many, I know it is tough for you both right now but I understand your pain. There is much more I could write but, if you have not seen or heard of her yet, please google Cheryl Broyles, she has had a few surgeries for GBM and is continuing to defeat the odds, there is hope and never let it go. It's right to be cautious and prepare but remember to smile, a walk in the park, a picnic in the garden or a night cuddled on the sofa in front of a movie will all become special memories.
    Sending you both HUGE hugs, please know if I could stop this for you I would. Never let go of your hope.
    lots of love,
    Mark x

  3. I also meant to mention a UK charity which specialises. In supporting patients with high grade brain tumours, I hope you find it useful, I did and I know they support a few people in the US with information and just being there, I hope you find them useful too.

    Also, I meant to add that if you would like to know more about Steve then our website is

    Much love,