More To Do

(I know – this is a bit long for the anti-attention society these days – but I would appreciate if you read it & got the *whole* story. Far too often I talk with people who only know a little – because they only read a little, yet think they know all that’s happening. Nearly the whole story *is* in these pages, but you only get it if you take a couple extra minutes to read the posts in their entirety.)

I first heard of it 15 months ago. Some amazing new drug, with almost no side effects and a 95% success rate of curing Hepatitis-C.

This was a far cry from the Interferon therapy that we – John (my doctor) Val, my Hep-C advocate & I – tried a few years ago, long before the 18 months I spent in the hospice. That was one of the worst nightmares I have gone through with any drug – not only effecting me physically, but as an added bonus some very serious thoughts of cracking the head open of anyone walking too slow in front of me… and frequently of suicide.
I had given up on you. All of you.

I used to wonder how long it would take someone to find me in my motorhome, if anyone would even notice I was dead. None of my “friends” ever called or checked in just to say hello, and my thinking was twisted to feeling as if I already was dead – it was difficult to find any reason not to make it just a little more real. At least the pain in my heart would likely be gone…
Thankfully, after three straight months of this they weren’t getting the results the wanted, and I was taken off the Interferon – otherwise it would have been another year & three months, and deep inside, I knew that I wasn’t strong enough to make it through. Every time it entered my mind, ending everything made so much more sense. If they were too busy to call, they didn’t have the right to miss me… but I couldn’t let John & Val down. They had cared so much over the years, tried so hard – and now it was time to try again.

After 6 months of battle with the insurance companies, I was finally authorized to try this new drug, Harvoni. Six months, one pill a day, and I made them swear – minimal side effects.

They were true to their word.

After six months on Harvoni and another three to make certain it was effective, I got my final blood tests back this past Wednesday – and I am officially cured of Hepatitis-C.
When John called to tell me the news, I didn’t have the heart to tell him what I really feel – that this is an empty victory. That the damage has been done. Being cured of Hep-C at this point means nearly nothing. While the virus caused the problems, they are their own entity. Hep-C was the gun – but the bullet caused the destruction.

I still need to take the herbs daily, still need to watch my diet & eat the best things possible – but now there is a new fight, a new goal. One Western Medicine says isn’t possible – but Western medicine also calls me a “miracle” for coming out the other side of the hell I went through, and should be dead.

I’m alive because *you* didn’t give up on me.

I’m not a miracle more than anyone else is – I just chose to believe that I WOULD live – and now, I choose to believe that I WILL reverse the cirrhosis, and have a healthy liver. No ascites, edema – and when I accomplish that, I’ll be able to inspire others to know that it IS possible – and show them how *I* did it. Even if what I do doesn’t work for them, at least they will know that it is possible – and if they let me, I intend to be there for them as LIVING proof. As I didn’t have anything like that, they will already have an advantage over me, and because of that, I am ecstatic.

But at least for now, I still need your help. You’ve kept me alive this long, and because of you (& that “being alive thing) I was able to finally find my Birth Mother – and now, the book is in high gear and I’m fucking THRILLED.

Thanks to a dear friend in Amsterdam (who I have never met – yet) I was able to afford some critical things I needed for the creation of the Kickstarter, help building an author website, and of course, herbs & good food – *even* one of the most important things for my spirit, which was getting out and being around friends and a trip to visit my Mother.

Now, I need *your* help again, if you can. If you’re still willing, if you want to see just how far I can take this. I am GOING to reverse the cirrhosis – but I need the specific herbs to do that with.

If you can – please help. My paypal is ksea@culturefluxmagazine – and I will be grateful for anything to help me achieve this – to conquer the final thing that they say I can’t.

Thank you again, & again.

I love you.

~ Casey

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anywhere and to her

Wake up, start the water for coffee, shower the remnants of yesterday’s heat off of me, wondering what today will bring. To let it or make it happen. I don’t like not being able to control if I see her, and for that I feel childish. I wonder if I should feel childish, not getting my way and letting it upset me – but this is more than just wanting a trinket I could do without. Pour the coffee. Complete the base ritual.

She thought it was about her. Of course it was, but not about her. She is only the reason for voicing my frustration, making what I feel all days impossible to push aside, accept and ignore until things work out right and I have the freedom of going anywhere and to her. She is the exclamation point, not allowing the ease I have learned to push this need back and I notice my crippled wings.
I have worn them far too long, waiting for their repair and the freedom to fly again, to anywhere and to her.

I miss the roads. Is is wrong to say that I need the roads? Need to drive? We are taught not to need, that it is a base and unenlightened state. Just another material thing. I don’t need it. I tell myself I don’t need it. I try to fool myself but I know better. I know because without the roads, without the freedom, without the wind I feel caged. I’m able to pretend everything is find until I I am reminded of the bars that surround me.

Because of you…

There have been people over the years that have called me courageous.
Quite honestly however, I don’t see that. I live my live the way I choose, and simply do whatever it takes in order to.
I would be lying if I said that at times I wasn’t terrified, that I haven’t the slightest idea what I’m doing.
I would be lying if I said that often I wonder if I will ever get better, & I lay in this hospital bed afraid that I’ll never get out on the road again.
The Road.
It screams my name, it calls me. It’s my imagination, I know – only my imagination, but there is little that is more powerful.
In the secret places of my heart terror & love fight a  war. I’m afraid, but I won’t stop fighting. I can’t.
I can’t. Ever.
There is a world out there that I need to see – a world as large as my heart, a world that will bring even more to it. It swells with strength because you are in it.
All of you.
It was only a couple of months ago while sitting in my motorhome that I felt I could die and no one would notice – but then this happened. The sickness that I had been dealing with in silence, almost alone for just under three years, fighting like hell in the motorhome was made public, and people came out of nowhere – some that I hadn;t seen or spoken to in years.
Truth be told, at first I was pissed off. This is MY suffering, my misery, and you all have your own lives to deal with. Your own lives that I didn’t want to interupt – but you came, in words and in body, in beauty, and quite honestly, I can;t figure out what I have done to deserve all of you – but here you are.
Here you are, and I will never be able to thank any of you enough – though perhaps pass your love along to someone else who needs it… once I get the hell out of here.
Right now the only thing that gives me a slight bit of comfort, the only thing that helps, is soaking in scalding epsom salt baths to draw the fluid out that would otherwise soak through the clothes I have in a few short minutes. Western medicine can’t figure out what’s wrong, and as much as I love my Doctors the only thing they hanve been doing is throwing drugs at the symptoms as they can’t find the cause… throwing drugs at the symptoms and missing. As a matter of fact the epsom salt baths go completely against what the dermatologists told me to do – but they couldn’t see past the flesh to the root of it all. It was a desperate decision one morning at 3am to try, and the only thing that has brought comfort…
Soon I will be getting acupuncture treatments from an old friendwho has made it extremely affordable for me, and that I am thrilled about.
All I want to do is get back on the road – not feel so drugged out all the time anymore, and be able to not need scalding baths – because it’s damn difficult to find a bathtub large enough, and I ain’t got one in my motorhome.
All I want is to see the world – take roads that are barely ther anymore, and find places to look out over everything and know what I’ve been fighting for.
Perhaps with a dog – and perhaps with a partner as well.
I’ve already started looking at other motorhomes, ones not necessarily larger but with a better floor plan for a dog, and ther are some good deals out there, but I would need to save up for one and then sell Alice, or put my things in storage while I hope for a good deal to come along. I’m working on a plan… kinda – but I will need to feel confident enough to leave this place first…
I need to get better. I need to get out on the road, and continue to travel the beautiful, aimless journey that fills my heart.
In other news – does anyone have a Kindle, and what do you think? I’m seriously thinking about saving up to get a Kindle 3G to save on space in the motorhome, and being able to get books wherever I am… the ones I ordered when I first got here are almost done… I’ve been nursing them, but now the turn of each page on the last book sounds like the tick of a time-bomb to me. In here they are the only worlds I have, and onceit’s read, once the final word passes by, all the worlds will implode…
This has turned into a babblefest. Time to see if I can’t sleep a bit before I need to go to the American Steel building & move my motorhome to a different part… praying for no rain…
and now, due to a sleepless night due to discomfort, going to try to get an hour or two…

Rolling, II

In Denver now, looks like I might be here for a couple days trying to earn money to get to Boston. Things are pretty interesting, to say the least.

Sarah headed out to the airport this morning, with all the money we made from busking last night and the account that the money donated for the purpose of getting me to boston was just about to be transfered to, leaving me with a little over $5 in change and a half tank of gas.

Don’t think I did anything wrong, save for the fact that most of everything didn’t go exactly as planned. Last night we were fine until it was time again to sleep in the van…

Hoping desperately that I can get the DD pay by Western Union. Otherwise…

I don’t know.

Fuck – I’ll make it to Boston, this ain’t shit. Just a different situation, no worse, no better than any of the other adversities I’ve faced.

Bean is rocking, enjoying the ride and all of the different places we get to stop – all of the different smells – the countryside, the deserts…

God, it’s good to have her back.

More later.

Rolling

Van problems, necessary repairs before the journey. Good thing they happened before we got on the road. Sleeping in the van on 24th & Duboce because of a bad coolant leak. Got it fixed, belt broke, got it fixed, finally dropped off the postcards from Marie to Whitney, picked up Bean, The Best Dawggy in The Whole Wide World from Patty & Shawn who have been caring so wonderfully for her these past few months, and just arrived in Vegas.

A day late & 270.00 short, but we’re on the way.

Found a place to park at a hotel, set up the tentby the van, made certain that Bean is FAR more comfortable than us, and now are about to collapse.

Busking in Vegas had better pay if we want to make it…