To be Cured… & then, To Help

Over six months.

Over six months I’ve been in here, watching life from afar – my life, our life, the life I once had that so magnificently, rightfully, justifiably exhausts me and fills me with the energy of love as I see so many beautiful people, the people I am so blessed to call my friends and acquaintances as I walk into and around an event, as I fall in love with such beauty over and over and over again, completely awestruck by the talent, the dreams that are realized through so much effort, the way that they shine so brilliantly…

and gods, just things as simple as seeing someone’s face light up, a reflection of mine, as we notice each other on the floor and say hello.

It’s impossible to portray in words how much I miss that…

So I fight like hell – not only to live, but to come home. To be a part of the life I love so much again, to feel alive instead of watching people die – people who have given up the fight, or simply don’t know how to. I’ve watched four people die since I’ve been in here, and I’m sure there will be more… this is not a place that I want to be, but it’s where I need to be right now – so I fight like hell, doing every small thing in my power to get healthy enough to leave. I know exactly what my goal is, and I’m going to reach it.

For the most part I’ve been feeling better, much better since I began taking control over my own healing, but still have the edema and ascites (leg & abdomen swelling due to (in my case) cirrhosis of the liver), carrying an extra forty pounds of fluid which needs to come off – and therein lies the challenge.

~ ~ ~ ~ ~

It’s funny, in a tragic way.

The books I’m reading about real people who have cleared the Hep C Virus are like sitcoms where they keep complaining about how much money it takes, how much money they don’t have, yet they still manage to somehow come up with hundreds or  sometimes thousands of dollars for this treatment, that miraculous remedy, that perfect supplement or other thing which under normal circumstances I would write off as pure quackery, but in doing countless hours of research am convinced enough that it actually works to try it – these aren’t normal circumstances. I desperately want to live, not just survive, watching life and the world go by in pain, too exhausted to do anything anymore. I count my pennies and do what I can, but…

I think of all of the people who purchase their books; full of hope, expectations, and optimism that perhaps they could have their lives and dreams back before everything took a turn for the worse and the world they knew fell apart – that maybe, just maybe, the constant fatigue, the pain, & all of the various symptoms that are created by Hep-C could truly be cured. They read voraciously about these people who actually cured themselves, anticipating getting started… then they get to the parts about how much all of it cost the people who did it, and again, just like the other books, with a heavy sigh put the book down, again with all of their hopes and dreams, and wait to die, because they can’t afford to live.

To be CURED. Healed completely of Hepatitis C, forever. Something that the majority of western medicine still refuses to acknowledge as possible, but the proof that it’s possible if you’re willing to fight for your life is everywhere, baby – in the books I buy, in the relentless & exhausting research I do on the internet, checking and double checking all of the things that say they can help me live again. Some, of course, I still write off as complete bullshit – others that I have glanced over before, however… well, considering the dire circumstances & the extra research I have done, I feel deserve a fighting chance – to add to my chance to stay alive.

To be Cured. To have the energy back to chase down & live out my dreams – with perhaps the most important and reachable dream I have ever had added to them all. In the time I’ve been here and the research I’ve done, I’ve decided that I need to write a book – a book about how I cured myself with barely any money, a book that won’t discourage the average person from their fight to live. It will be complete yet relatively short, simple, and most important, hopefully fun to read. Something that gives hope, fuels the fight to stay alive – and maybe, just maybe – saves lives. (The book I’m reading now is dry as all hell, and though filled with perhaps the best & most information out of any other book I’ve bought, a bitch to get through.)

On a subject about something that is the fastest growing epidemic these days, I don’t think getting it published will be difficult…

But the only way I can write it is to get results, to cure myself, and with the fees I’m paying here & my only income being a single disability check, I don’t have the money I need to actually do all of the things I need to do to see if they work or not. I run out of herbs I know that are working to be able to afford something new, I don’t have any choice but to sometimes go with the lowest price/quality of them, and though many people have been wonderful and helped here and there with money, the fight to be able to purchase what I need is ongoing – it won’t stop until, at the very least, I’m healthy enough to leave this place and not have to pay the fees (or pay for food twice, as the health of the food here is, for the most part, pathetic; a small example being Tang and fruit punch instead of actual juices, and most everything over-salted. I spend as much as possible simply for food that isn’t bad for me…

So here it comes. I need people’s help, on a steady basis – but only until I’m out of here, and I’m fighting like hell towards that goal. I need to be able to stay in the herbs & supplements that I know do help, and be able to have the financial ability to try different things such as regular liver & gallbladder cleanses, purchase better, more effective herbs, be able to try other things that look promising and hell, just something as simple as healthy food. Though what I am doing has helped since I decided to take my healing into my own mind and hands in January, it needs to be stepped up in order to get healthy enough to actually get my ass out of here – to fight this like hell, to fight it with everything I can, as the new book I’m reading described a condition that my symptoms match exactly called Portal Hypertension – and it progresses severely.

That means asking for help. Asking you for help, because you’re all that I have. I believe that only another $100 – $200/month on top of my average of $300 will do it – and hell, compared to the f*cked up costs of prescription drugs, I feel that’s a bargain to stay alive. (My HIV meds – a bottle of 30 tablets – costs over $1700/month by comparison).

So… if any of you can commit to helping regularly so I don’t have to keep asking – $20, $40, $50/month, to help this fight, preferably in the middle-ish of the month when the plethora of necessary “save kSea’s life” stuff begins to run out (I take more than the recommended dose with many, as that’s for healthy people) – I don’t think I need to say how much I would appreciate it.

If it means anything, you’ll get an “Extra Special Thanks” mention in my book…

Which I will write from the beautiful road while I simultaneously get my ass back to working on CultureFlux.

If you can help at all, or if you have helped, thank you so very much – you know how much it means to me – but in order for this to work I need steady assistance so I can keep up on all of what I need to fight this – and I need to fight like hell.

(Paypal addy kSea@culturefluxmagazine.com)

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Heaven… & oh, Hell

 

2.28.2011 5:33am

Outside on the smoking patio now, escaping my room and one of the few times where I am actually at peace, alone, just me, the few cigarettes I have left  & my thoughts out here. Too often it’s a gathering place for so much mundane-speak, but then again living in such close quarters with people for so long can get on my nerves as well – especially Tom, who I‘ve nicknamed Jabberjaw. The guy talks incessantly about nothing. Incessantly. NOTHING. Most of the rest are absolutely fine, a person learns to live with what is there or go mad, and the majority of the time I come close to enjoying the conversations, but him… I do my best to ignore him, but unfortunately I have let him & his voice get under my skin.

I need a good set of earplugs.

I need out of this place.

I need… to come home.

Right now there is just me, and peace, and I’m out of my room, so I better get on with it before they come.

I had hoped for this simply to be a belated account of the magick of last Saturday, when Joby took me  to see Mark Growden, but alas I waited too long… but first, briefly, that.

If I could repeat that Saturday over & over again I would, as it couldn’t have been more perfect. A phenomenal show, seeing a few great friends – the only thing to complain about was the cold, but even that was nice coming from a place where my room is always warm and comfortable. (Too comfortable?) The show, Whitney, Sasha, Switch – getting to see Whit on stage singing again, then a decadent breakfast at 11pm with actual eggs, over easy. For some reason they won’t serve just normal eggs over-easy here, and gods how I miss them. Something about the health codes… yeah, watch out for salmonella (?), but oversalt and overbeef everything. There is little that I can eat if I want to take care of my liver and the edema… but I digress.

Truly a wonderful evening out spent with & thanks to Joby. Even had fun with my camera, goofing off taking pictures of him & us against the beautifully unfinished walls. Nice to take shots of something besides me or my maladies again. Pure heaven.

And now, the Health Crap

(I believe I have previously explained that this is primarily for my own notes – things for future reference to hopefully help others or recall something that may have pertinence in my own future in whipping this shit – but I try to make it interesting for others to read as well. Or maybe if they know of someone that might be going through something similar… never hesitate to contact me, & I pray I might be able to offer, at the very least, an empathetic ear – but very likely more…

But then…

 

Then a couple days later something happened. Something ungood – & I’m still trying to figure out what the cause of it was. Certainly not the night spent out – maybe the over-extended bath where I discovered a new theory; The pull of gravity towards a book is in direct relation to the level of water – and maybe the pain meds that had me nodding off & kept me from finishing that one small passage…

The day after that bath something in my right thigh was terribly wrong. Horribly, painfully wrong. At first I thought the bath over-dehydrated the fluids in my muscles, but then that changed to swelling so severe & tight that I literally could not move it without excruciating pain. Nice to know that there are still muscles in there somewhere, but man, all of the sudden they all decided to rebel against any movement, to the point where walking was nearly impossible. To the point where for the very first time I actually considered – seriously considered, being carted around in a wheelchair. (Oh, HELL no.)

I fought it – moved as much as I could, kept the circulation flowing and fought like hell to bring my leg back. I quickly noticed that the most agonizing part was getting up from sitting for seemingly any amount of time; need to keep moving, let the pain wash through me until it lessened, grit my teeth (er – gums) & bear it. Thank you, close walls & handrails everywhere. Even trying to turn over in bed was almost more than I could take… but through all of that, through the pain endured and limping along until my back hurt from lifting it off the ground, it has gotten much better. Not perfect yet, but I would imagine a much more rapid recovery than if I had succumbed to the chair (shudder) and babied it. I moved it as much as I could tolerate as frequently as possible, and it’s almost back – but now, there’s a new player in town, one I haven’t experienced before & that, quite honestly, scares the hell out of me.

Before I go into the details of  this current hell, I’m going inside – mainly because my hands are incredibly, wonderfully cold, and it’s getting more & more difficult to hit the right keys…

Okay, inside, the sanctuary of my room, the warmth which makes me want to fall back to sleep & avoid writing about…

Well, what do you know. Just about breakfast time. I’m out of all of all my healthy food & long out of money, let’s procrastinate a bit more and see what gooey, cheesy, heavy, over-salted junk they’re serving today that I’ll  possibly eat simply because I’m hungry…

See you in a few – then I promise I’ll write about the new malady that has come into my life – the one that scares the hell out of me.

Let’s try leaving off with a bit of pertinent sing-along, a bit of humor to help me keep smiling – & fighting. Ready? Okay.

Dooooooooo youuuuuuuurrrrrrrrr (big opening) balls hang low, do they wobble to & fro, can you tie them in a knot can you tie them in a bow, can you throw them over your shoulder like a continental soldier, do your ballllllllllls haaaaaaaaaaaaaaannnnnnnnnnnnnnnnng (fading off as I limpwobble down the hallway) looooooooooowwwwww……………

Alright, back. Thankfully the ever-present scrambled eggies weren’t clogged with cheese this time. While normally I wouldn’t mind it at all, I’ve found that anything but raw dairy is surprisingly bad for the body, and while I’m not insanely strict about it (cream of asparagus soup – what’s a boy to do?) I do avoid dairy these days. Had me some taters, too.

Okay, I guess it’s time. The legs are still swollen & I’m still trying to figure out ways to heal that with the little money I have, the extraordinary Renee, my acupuncturist & I are vigilantly doing our best fighting the cause of the problem, but there’s a new symptom in town which popped up a couple of days ago – scrotal edema. There. I said it. Just another body part, but this is even too grotesque for me to take pictures of – especially when… right now I have a small sock that I found on it to keep the swelling down so it’s slightly less painful, but when that is taken off, a short while later both of my hands won’t even cover the area it takes up – and it takes me about ½ hour of very gently squeezing the fluid out of my fucking ballsack to get the sock back on. Makes walking quite a different experience – the discomfort is quite unique when I have something the size of a friggin’ hamburger bun fighting for space between my legs.

Again, research, research, research – and things that could help but I can’t afford right now with the roughly $130ish I’ll have to last me until April, most of which will go to foods that are healthy for my liver, additives for the bath to help extract the fluid… I’m frightened as hell and quite honestly without the $ for herbs & other various things that should help I’m not quite sure what to do, as my master plan to make extra money is delayed yet again.  After last month I realized that It’s much less disheartening not to ask for help and hopefully be surprised, as certainly I was quite spoiled by the wonderful gifts over the holidays when I decided to break away from the destructive drugs insurance paid for and hop into the drivers seat of my fight to get my health back. Already there has been a positive difference, but alas, it will take more than just that month of prescribed goodwill.  I must give a HUGE bow of appreciation however to Mota for his old phone so I can still research & stay in contact with the world, and Whitney for the awesome superhealthy cases of tea she delivered to me. A special thank you as well to those who visit – you help keep my spirits up & keep the fight going – as well as an incredibly special gift from someone that has remained a friend since I was… 4? 5? 6 years olds? I haven’t listened to what you said yet Brett (the ol’ hauling the lappy to the attendees area and trying to find an open WiFi account jig will hopefully happen today) – but your email profoundly touched me. Thank you.

And with that, I’ll leave you with a comment I made to Barbara – one of the residents here who is loud and gloriously ornery –something of the Maitri Sicko Mom –  incredibly caring, and is going through much more than I hope I will ever have to with her own type of grace.

We’re relatively open in talking about our own brand of ailments here, & when I told her about my loaf –o-bread ballsack  after she noticed how gingerly I sat down, and the nightmare of discomfort it’s putting me through right now, she said with genuine sincerity to me “Aww, poor baby.” which was sweet, but then I thought about it for a second before I said “Nah, I ain’t a ‘poor baby – I’m a friggin’ WARRIOR, & I’m going to conquer this shit – and then show others how to as well…

3.1.2011

Gods, I loathe how much of these writings are filled with the feeling of “woe is me”, whether it be health or needing financial help – it’s getting incredibly old, and though things are progressing now that I’ve taken the wheel & left the majority of Western med to wonder where the money from me went, repetitive. It’s an upward spiral now, that’s for damn sure, but still, the coils are so tightly wound that it’s hard to tell the difference unless you’re me, living it every moment of every day. I am seeing results, feeling them, but to put all the finite things down in writing would read like the most mind-numbing medical journal in existence. Skin is looking much better, less dry. Hair that the Interferon “therapy” made fall out is now growing back thicker, even the sideburns. Teeth are growing back. (HA! Just kidding, but I should likely have new chompers by the end of the month!) I can’t express how much I want to write about something, anything else. Drives me fucking crazy.

One thing that I noticed yesterday while reading a book that Jennifer (Dakini-Angel) loaned me is how much I’ve completely lost myself in the focus on my body & its ailments, neglecting the more introspective, spiritual side; losing the part of my Self that carries a certain peace, serenity with it. The part that brings an automatic, subtle smile when I lay down in bed to fall asleep after a hard day of… well, these past few days, laying or sitting in bed. (Helps with the gravitational pull of fluid so less pain & discomfort.)

Strangely, almost immediately after that revelation I had my first actual decent conversation with Tom – who is still intolerable 97% of the time, but it felt good to- at least for a bit – drop my asshole wall, as for once he wasn’t yammering or making inane comments to someone, or attempting to ask me questions while I was trying to read or think of what the next steps are for getting my health back, coming back home, and getting back to CultureFlux. (Well, he was, but I was just sitting there not focusing on anything.) All this Tom talk sounds bad – I don’t by any means loathe the guy, he just seems to me like a walking 180# sack of artificial sweetener that is never. simply. quiet.

Okay, time to venture to the attendants area, hopefully hop on a decent WiFi network, and post this to WordPress – then I must send the shots I took to Joby – completely forgot about that after the leg went to hell.

I just wish the formatting wouldn’t get all screwed up when I copy it from Word – if anyone knows how to keep it single-line, or where to find the settings to do so, please let me know.

By the way, though it must be getting old by now for those in the outside world, I’m still happy to receive visitors – and my (wonderful, working) phone should be back with regular service sometime this week… and to make life easier for everyone, I’m actually considering coming back to (Oh GODS, NOOOO!!!) facebook – just for you.