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.