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.

Arigato Gozaimashta

http://www.youtube.com/watch?v=3bUDPi5lnbA&feature=colike

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.

Sons

When every day you wake and are just thankful for nothing more than that, when you find thanks in your husband remembering your name, when you are thankful for just one more day with no bills calling, when you are thankful for what you have had, not what has been lost...

My thanks does not need to come at the memory of a group of indigenous deaths.

Turkey day did not go to plan. We were supposed to head up North to a friends' home but I cocked things up. My doctor did not give me good news this week and I might have to have a small surgery soon if things do not begin to get better with myself. So, this boiled over Wednesday night and I got very very very ill. Could not drive, barely able to come out of the bathroom. I'm still not better today and we're both hoping to see relatives today.

I'm trying to not be scared, or mad, or upset, but it's not easy. I do not want another emergency type of surgery like my gallbladder which melted inside me. I'm trying to stay ahead of my body, but it really likes to fuck with me.

Mostly I'm just scared.

I'm scared because we have so many bills right now. Wash has had extra doctor visits with his Neurologist ($760 per visit) and after a week with insurance fuckery he's finally going in to see the Epilepsy specialist and they won't even tell me how much out of pocket that will be. And then there's my own medical bills for my issues, co-pays, medicine. And I worry, if I do have to have surgery again who will look after Wash? Or even me?

I've just been depressed. It seems like every time we manage to find something with Hope, some little thing to keep us both going, both wanting to live, Life or Cancer finds a way to rip it from us.

Having terminal cancer in your mid twenties changes everything. It's been two years. Two years of living, and not. Two years of heart beats, tears, medication, poison, laughs, hugs. And two years of a "not life". Two years with no paying work, with no schooling, with no real hope for any real tangible future.

What kind of a life is it that I seem to be fucking up so badly?

I miss having feelings. More than just "what else?". More than just a resigned acceptance that my heart beats regardless of my desires.

Two years standing still watching the world, my friends, my future pass by.

It's all just going through the motions. Playing a part.

It feels like a long night swim where the land moves away, the light fades until there are just stars. Just the water and stars. And while the stars dazzle, the water just pulls, and pulls, and pulls, before long the stars are not twinkling so bright, and the water begins to take away the air, just wet, and enveloping, and cold- never noticed before how cold it gets, and then the stars blink out. There is just a feeling of coldness and the urge to fight, where it should be- all used up. The water welcomes and hugs and draws down, and the stars blink out to black.

The honest truth is, some days I see myself sadly and lifelessly going on after Wash dies. And other times I hope with every last part of my being I'll go an hour after he does.

I've had two years of playing "Groundhog Day" with my husband. For that I am beyond a way to describe my thanks. That's two years more than any of us thought when he was in the hospital with a tumor the side of a newborn's head crushing his brain. Two more years of hugs, and kisses, and "I love you", and every little wonderful moment we were allowed to have, than others with his cancer. I know that, and I am thankful. It could be worse, sometimes I am not sure how, but I know it can be.

I just wonder, does it ever get better? Does the pain ever really let up, or is it just the mental scar tissue caused by years of time and distance?

I feel like a fool for trying. I feel like a fool for believing that things could change. I need Hope to keep going, to keep myself living, and I feel like a gorram fool every time for having Hope.