Into the Real World…

 

Venturing out into the real world this weekend, seeing Mark Growden at the Brava on Saturday with Joby,

trying to prepare myself with short walks when the rain has let up over the past few days,

feeling the extra 40lbs of weight in my legs – or is it simply their lack of use that leaves me breathing heavy after only a short walk?

(“And in this bed, weighing in at 207lbs… kSea flux!”)

I need to start getting out more – much more. I want to leave here… but only when the time is right

and I’m able to walk around the city without saturating the clothes I wear

and wake in a dry, warm bed.

My bed, my beautiful bed, with candles, incense,

shut the accordion door and I’m back in my sanctuary.

(GODS, how I miss my bed!)

I miss working on Alice, constantly decorating & re-decorating her,

painting, tuning, writing list after list of things to do and actually doing most of them

the feel of tools in my hands again,

relaxing in my chair with a cigarette and secretly watching the world outside go by

feeling her engine start, warming her up

and soon, soon heading out on the roads that beckon me…


But first things first.

I need this place now, & as much as I want to leave it’s no accident that I’m here

though I need to take getting well into my own hands, & I am

& I am getting better

& I am getting stronger

& I will be back in Alice soon

& back on the road

with this place just another chapter in the past

& this physical hell far, far behind me.

Venturing out into the real world this weekend

and coming back to the life & friends that I so dearly love…

 

 

…And in absolutely terrifying news, due to… I’m really not sure, perhaps the fact that some

people (idiots) can’t figure out how NOT to message me there & I’m weary of repeating myself

perhaps because I want to know what some truly wonderful people who still use it are up to,

or maybe I’m simply on enough morphine…

I’m considering – considering – coming back, at least tentatively, to facebook… but we’ll see about that.

 

Also, phone will accept emails only – no texts, calls, etc – but that will hopefully be remedied soon – it may actually be my first f*c*book post?

 

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What I Would Give…

2-11-11

What I would give,

give for the day, the days, the weeks or months it would take to one day,

one day wake up and not have the pain, the swelling, the Hepatitis-C as my very first thought

the day I wake up realizing that I have beat the virus as so many others have

the day my life doesn’t revolve around it and I am free of this hell,

free to live my life again.

What I would give… already it takes every waking thought, every penny I have & more,

to the point where I bought some of the herbs that would make me better instead of the money I thought that I had & completely miscalculated, overspending by $150 and then hit with the overdraft fee. Jeebus. Lame-ass me…

But things are improving, even though the directors here don’t seem to acknowledge that they are since I refused the western meds that were poisoning me and not helping the smallest bit. Still, they need to improve faster.

So much of life tries to take my spirit, but they can try as hard as they want – the harder they try,

the stronger I get – and they’ll soon realize that. It has been strengthened with paste and bandages and the impossible knots of a sailor, a vagabond, a wanderer – a beautiful fool.

I read the books, the book by & about a person who completely cleared the Hep-C Virus with herbs & diet with pages of testimonials of people who have done & are doing the same with the program he used after being dragged mercilessly over the coals by western medicine;

I read the book & research the herbs, know that they’ll work – but right now the words I read are nothing but dreams of perhaps another day, dreams of the day I have the money to get them. I only wish that time was not such a serious factor in all of this, but I need to show results as soon as I possibly can.

It’s a game that I need to play, and right now it’s their game – as trivial as it sounds, I need the baths, I need the frequent laundry done as the fluid leaks out of my legs, saturating my clothes and bed linen, and I need the simple comfort. All I need is a couple more months for some valid results.

One of these days.

One of these days I’ll finally realize that I have beat the virus and have my life back. Right now, however, I need to somehow be able to afford the food that is good for me, and the herbs that will help get rid of the cirrhosis, help my liver, and do away with the edema so I can walk like a healthy person (or run, or STILT) – something to show them, so they stop trying to feed me the antibiotics & other drugs that rip my liver to shreds…

And I’m asking for help.

Once I’m out of here I’ll be able to afford them myself, and focus on completely kicking the virus’s ass, as the fees to stay here are 60% of a small (but manageable – when I pay attention, heh heh) disability check.

Gods, I want out of this place. Everything here is a game that I need to play so I can stay long enough to truly do what I need to get my health back – & they hold all the good cards.

2-14-11

A bone marrow biopsy. That’s what is letting me stay in here, having that completely unnecessary procedure of jamming a needle into my bone on the schedule – I think for March, but need to check. (By the way, EVERY single test that my nurse practitioner has ordered for me has shown that I am fine for what they tested me for – it’s just whimsical bullshit – let’s try this or that, but damn it –  it’s MY frigging body, my life, and at this point I am sick to f’ing death of being their damned lab rat.

(Almost literally, with the side effects I went through with the interferon,  & next –  “Hey, how about a transplant? It doesn’t cure the virus, I’m 25% more likely to get cirrhosis due to the toxic drugs I need to take so my body accepts the new organ –  and the survival rate after five years is only 70%, but Yeah! Great idea, and everyone makes money!)

But if you can help in the financial area so I can get the herbs I need ASAP (or even if you can’t) I’ll be thrilled to cook a damn fine meal for you – either brunch or dinner, as well as, of course, passing all the knowledge gained through this ordeal on to anyone else who is going through the same hell with Western “Medicine” that you know, and helping them.( paypal addy ksea@culturefluxmagazine.com  – he writes in hope)

The western medicine people have fucked with the wrong person.

I just wish there were herbs to cure my phone as well, as it – almost my only connection to the outside world besides the community computers, is just seconds away from its final death rattle.

Oh, the fun!

Okay, gots to go hope I can hop on the only neighborhood network that’s not locked so I can post this.

(Sorry about the rant – and… um – Happy Valentines day!) ;^)~

EDIT –  How could I leave you without pretty pictures? (Depending on what you consider ‘pretty’, of course)

.




Into my own hands…

After so long

so long

so goddamn long, it’s hard to come back, but the nagging inside of my head, inside of my heart, the everyday need grows, expands to the point where it consumes every thought of before this or after that I will write, so much to write, it’s been so goddamn long and the need consumes, compels, would complete me if only after this or before that could be the perfect time because there is so much time I could write anytime the perfect time must be sometime but where or when?

Screw it. NOW 2:41 Monday January 31st and begin where? Where? Why is time a place? When. NYE, The Dresden Dolls at The Warfield Theater, it takes all I have to get ready; the pain slows, makes me question what I’m doing; fight like hell to get my boots over swollen feet, feel them tear the soft stretched flesh at tender ankles but I’ll deal with that later, because not only do I want to go to the show but I left no room to get out of it, no maybe or if or depending how I feel – I said that I would be there, & a ticket is waiting. I promised. Thank the gods for skirts. Grab top-hat cane & camera and make my way to the door slowly, slowly, carefully both feet on each step as I’ll be damned if I’m going to take the elevator to go down one fucking floor…

The show was fantastic, of course, but best were the friends I ended up watching it with by far, and a couple others saw while coming in. So good to feel alive again, to feel alive because of them, them, reminding me that I still exist, I still exist to smile and laugh and love and take months away from life in a beautiful care facility where I can focus on getting physically healthy, but gods, it’s full of mundane, inane and uncreative, barren minds but life is still outside the door with the right people. In this place I realize how incredibly fortunate I am – how incredibly *spoiled* I am to have such people in my life.

I  turn around in our semi-private area and holy SHIT pull myself together to suppress the surprise, a friendly smile & nod to Neil Gaiman (“Hey!” [poke poke] “that’s Neil fucking GAIMAN!!!” to one of our krew standing near who shared the same giddiness and yeah I thought I was immune, have hung out a bit with Lemmy, a lot with Daniel Ash but ends up – it takes an *author* for me to finally be star-struck. Who would have thought?

After show the same wonderful friends and more; some lovin’ from Amanda, brief chatting with Neil, that & morphine helps transcend the pain, keeps the tears from the pain at bay… an exquisite evening with absolutely wonderful friends… & the best NYE on mental record.

The writing has begun.

Finally, the writing has begun again – but now I’ve been up for too long, fighting the usual shitty night of sleep. Half of this was written with one eye open; it’s now 4:13 and time to close both for at least a brief time, but at least, the very least…

The writing has begun – and it’s about friggin’ time.

2-6-11 – The Medical

Gods, I hate playing catch-up. Writing these days however can be quite an effort, & has everything to do with timing. As much as the intention is there, as much as I want to spit out of this head of mine keeps growing and growing, it’s just not that simple – but I need to. I need to get this down, as not only do I want to remember it as clearly as possible, butThere may be a chance that it might help someone, and with the way that Hepatitis C is being named as the new epidemic, is now considered even deadlier than the HIV virus & easier to contract yet remain undetected for years… I need to. 

Now, past the hand cramps & fluid that blisters & seeps out of my hands making them & the rest of my body itch like f-ing crazy, past the exhaustion that makes it feel like my body is filled with liquid lead & lays me out for days, I believe I’m finally able to at least begin this section. I’ll do my best to curb my anger towards Western medicine, but in a way I owe its ignorance a bit of gratitude, because if I kept believing in it and feeling that what they were doing was the only way, I never would have taken matters into my own hands, researched & ordered herbs & supplements, or simply listened to my instincts & my body much, much more closely.

This will be the documentation of my personal fight to clear the virus from my system using alternative methods ranging from Chinese medicine & acupuncture to other well researched systems – as well as the occasional bizarre “treatment” that I came up with myself, one of which I’ve already tried with extremely positive results. I am, after all, my own perpetual experiment, living with it every second of every day, and try to figure out ways to deal with this and manage it through most of my waking hours.

A brief & recent history – not too long ago I was put on the interferon therapy for three months, (the whole shebang, if they are seeing the results they want to, commonly lasts a year but I’ve heard of it extending far beyond that)  thankfully however, they didn’t get the results they wanted with me and so took me off of it – perhaps one of the best things that could have happened, because as the side effects that I experienced were very minimal compared to others, it was still fucking hell – not only physically but mentally as well, as one of the ones that hit me hardest off the long list was “irritability”. Let me tell ya, “irritable” doesn’t even come close. There was an unjustified anger and hatred for pretty much everything that I came in contact with – or worst of all, people, friends, that I so much as *thought* about. No one was safe from the completely irrational things about people I conjured up in my head. About *you*, more than likely, if you’re reading this and we’re friends or something close. It was not a good time.

Then the edema started hitting, and hitting hard. My nurse practitioner did what he was taught to do, and prescribed some serious diuretics – which didn’t work, so he prescribed other ones on top of those which were just as ineffective – however they *did* cause my blood pressure to drop dangerously, so what to do?  Throw more meds at me for my blood pressure. By that time I was in here so they took vitals every morning to check my BP, meanwhile further harming my already fragile liver & continuing to shovel the drugs in my mouth – and me, like a good little trusting lab-rat, continued to take them… until one day late in December when I realized that I had had quite enough. Quite. Fucking. Enough. If what they were giving me wasn’t simply completely ineffective, it was harmful – and of course all of these needed to be processed by my liver, putting a ridiculous and completely unnecessary strain on the one thing that they were supposed to be focused on helping. Something snapped. Something needed to change. I started doing research – tons of research – & thanks to some fucking incredible people who sent me money over the holiday season, I was actually able to BUY the herbs that looked the most promising. Some I still take because I believe in them &/or have noticed a slight difference, some I don’t as they didn’t seem necessary, and every penny counts. I began those in early January, (and thank the gods I’m getting up to date because I’m getting kinda tired) and the uber-awesome bonus, thanks to Whittles was able to get some regular acupuncture with Renee lined up, which began mid January – with TONS of more herbs, tinctures, potions & brews. Thankfully I was able to pay for all this at the beginning of this month, but holy crap – with all the books, herbs, and arsenal I use in the fight to get healthy – my disability check, save for literally a buck & change, is gone for the month. I have an idea to make extra scratch to support my herb habit once I get a bit more healthy & mobile, but until then… shit. OH – okay, some of it went to the pawn shop too, so I could get my bow out before they claimed it as theirs, as it’s been sitting there for months.

The good news – I’m already feeling a positive difference, and for the first time in months due to something new I tried – I HAVE KNEES, & almost have ankles! The edema is still a huge problem, but there is something I use to relieve the pressure when it gets too much & I can’t walk without extreme pain; essentially it’s this rotary-thing with super sharp needle/spikes on it, and it *really* helps get the fluid out of my legs, at least for a bit. I tried a different technique a couple baths ago (baths are more exhausting projects & experiments than times to relax for me) and instead of the one previously where I hit the spots on my legs with the most pressure, I just ran it really lightly over my entire calf, ankle, & feet – the skin is stretched tight enough that I barely use more than the tools own weight to be effective, & it’s also a thousand times  safer than scratching. First comes a few drops of blood or a little more, then the fluid which is essentially clear – but holy crap, going over my entire calves really was much more effective than I could have imagined – and some weeeeiiird stuff came out. My acupuncturist (who condones this by the way, as it stimulates the channels) said that it probably was bile. Of course, I was nice enough to take pictures for your enjoyment.

Okay, I’m done here for now, & though there is still much to say – but I still want to be more regular with my writing. If you don’t hear from me for a week or so, and give a damn, throw an email rock or two at me to wake me up. There’s lots more I want to say about *this* place, where the nurses had to fight to extend my stay – otherwise I would have needed to be out today (aka the 6th, as I don’t know when I’ll get this to the interweb).

Regardless of what it takes, I’m fighting like hell until it’s gone. Completely. The other option? Death. The Hep-C, Edema, Cirrhosis (scarring of the liver tissue) – I need to get rid of this shit. Cirrhosis is the most difficult one to repair though it can & HAS been done with proper care, treatments & herbs. When the liver gets to this stage, the Western Dr.s mantra is “Transplant”, which is ineffective 100% of the time. It just ads more time, and due to the drugs necessary to accept the new liver, cirrhosis reappears within five years in 25% of people who hope a transplant will help.

I have my work cut out for me. Somehow, I’ll figure out a way to afford not only what I’m already taking, but some wonderfully promising other things I’m finding out about in a new book that I’m devouring about one person of many who western medicine had failed and, through trial, error, and triumph, was able to clear the virus. The messed up thing is that I’m under pressure to show a dramatic difference while I’m here, as right now I need what they offer – and am blessed as hell to have it. Trying to continue this anywhere else would be much more of a struggle than I need, but regardless, I’m going to fight this like hell, keep dreaming of coming back to the circus, and getting on that damn road!

It’s now 6:30am & I’ve been up all night studying how to stay alive and writing a working conclusion to this.

Done.

And remember – this is automatically posted to Facebook from WordPress. if you want to contact me, email me at ksea@culturefluxmagazine.com – do NOT try to message me on Facebook. I’m never there, loathe it with a passion, & won’t answer.

Thanks.