The Pain Game

As far as when it started, all I know for certain is that it was Sunday. This drives my doctor crazy.
“This week? Last week?”
“…yes. I think.”
Over the years pain has become something I’m well able to ignore to a certain point, and just go about my day, doing what I need to do as if nothing was different, like the way I’ve gotten so accustomed to the occasional siren or that sticky spot on my kitchen floor that never seems to be un-sticky for any given length of time. I think I’ve even become more tolerable of pain than dog hair – at least the pain usually reduces to a completely ignore-able level without me having to do anything about it.

Usually.

Though it occasionally pops up in other peripheral parts of my body, such as a deep bruise on my arm that leaves me wondering how it got there (usually blamed on playing with Ruby), it usually prefers to center in my legs and abdomen, and while the legs are nearly always just surface pain, over time I’ve become quite impressed with the seemingly endless areas & levels of pain that the abdomen has in its arsenal.
From the umbilical hernia, a steady sharp pain on the surface that occasionally has momentary flashes which reflexively cause me to drop what I’m doing to put pressure on it so I don’t come flying out of myself like one of those streamer-poppers, to the deeper, milder liver pain that has become as natural of a feeling as wearing socks. They’ve basically become old friends, and I can’t even imagine, after all this time, what it would be like *not* to have them. It’s like my body is a beautiful old beat-up car – a classic eyesore, dented, scratched & long-faded paint with an engine that takes some finesse to get going, but has it’s own personality & charm – even if it’s only in my eyes.

I think it was early evening Sunday when I began noticing that this pain was something different. It wasn’t really any single place in my abdomen – it was the entire damn thing, and it wouldn’t go away or be appeased, regardless of any attempts to do so. It was determined.

I tried to sit down, take my attention away from it by making maille, but all I could focus on was the pain – which seemed to realize that I was trying to ignore it, so like a spoiled only child, just started screaming louder. Going down the mental checklist of similar times I’ve felt this in the past, I decided it was gastrointestinal – something was just being stubborn inside of me, and only laying down – and time – could help it. By this time it was nearing around 11pm, so I decided to call it a day, crawl into bed & read myself to sleep, feeling certain that it would be gone in the morning. I remembered this happening on other rare occasions, and felt confident a good stretch of unconsciousness would make things right as rain, & I could continue with all the things I needed to do the next day.

Apparently, it wanted to stay up and play a game that seemed to be called “Sleep through THIS!” – which I’m guessing it probably got the idea from one of those strange & brutal Japanese game shows. It *definitely* wasn’t “Jeopardy!”, which I would have much preferred.

The morning brought the same pain, not increasing enough to cause alarm but not decreasing either, and though the pain was tolerable, the energy it took to not focus on it so I could do what I needed to do wasn’t. I fought through each hour, doing what I could but not being able to do what I most *needed* to do. Hanging on my wall, sitting on my desk, draped over displays are about 40 necklaces, bracelets, cuffs, pendants & earrings, sitting there, mocking my inability to gather the energy & enthusiasm to remind people about them, to sell them, to be able to afford the herbs that could prevent this pain from coming back.

The less energy I had the more morose I became, the less I was able to do the more downhearted. I had to do something to try to change this, to reverse the pessimistic energy that I felt growing thicker around me, the increasing feeling that this whole jewelry business was just another something that I failed in making work. Thought of all I *had* accomplished didn’t help; now was the only thing that mattered. The only thing that ever matters – and I felt like shit in that “now”.

It was early afternoon when I finally moved my laptop & book, holding my stomach as I got out of bed. Holding my arm around it didn’t help the pain, but it seemed like something that I was supposed to do, pretending that it comforted the alien that was *obviously* digging around in there, eating its way up to my chest.

Filling five plastic shopping bags about half way with dog food & putting them in a Trader Joe’s bag, Ruby & I slowly walked down to Civic Center, where I usually see the people with their homeless dogs. I tried to enjoy the walk – sunshine warming my face, a light cool breeze, Ruby bouncing back & forth like a Chinese ping-pong ball on the sidewalk trying her best not to leave any exotic stench unsniffed.
It *was* a truly beautiful day, and even through the pain I had moments I was able to enjoy it, but mostly I just wanted to help feed some hungry dogs & then crawl back into bed. I went straight down to where I usually see the homeless people with their dogs, and found… no one. A couple homeless people, no dogs. I kept walking.

We went through the Civic Center park, around the side I sometimes see others with their dogs sitting in the shade, then back down Larkin again, getting further & further from home & bed. A left on Market, looking, getting frustrated I contemplated just leaving the food somewhere they would hopefully find it – but at this point I realized that wouldn’t do. I needed to see their faces, to hopefully inspire a smile & maybe even a ‘thanks!’. I needed it for me as much as I wanted to do it for them.

About 5 extra blocks & 10 minutes later, I turned a corner & finally saw one girl who looked homeless enough, and she had a dog! She was walking away from me, about 30 yards ahead, but I wasn’t losing her. No fucking way. I hooked up Ruby to her leash so she would keep up, and as much as I could, gave “chase”. Walking as smoothly as I can to prevent any unnecessary jostling of my abdomen, I think the only thing that let me catch up to her were my longer legs and her lack of any apparent need to walk at anything more than a leisurely gate. And Ruby, who helped pull me along when she saw the girl’s dog.

“Hey!” She turns around. I’m trying to look like I just happened to notice her and realized I have a bunch of bags of dog food in my hand.
“yeah?”
“I have a bunch of dog food. You want it? It’s apparently good – she likes it!” I say as I glance down at Ruby, now engaged in trying to inhale the other dog through her nose.
“Really? Yeah, I *totally* need some dog food.”
“Yeah? Okay – it’s yours. Hope it helps.”
“It totally does, I really needed do food. Thanks!”
“No problem, happy to. Entirely my pleasure!”

She looks in the bag, looks up at me, and then it happens. A smile.
“Thanks man, thanks a lot!”
“No worries. I like being able to help when I can, especially dogs!”

With that we part ways, her standing there turning to talk to someone else & me, a small smile on my face but a HUGE one in my heart, start heading home.
I don’t know if it’s my imagination or real or if there is any difference in the two, but I think the pain may have diminished, just a tiny bit. Maybe there wasn’t enough room for it all with the happiness I felt.

“See Ruby, see how she smiled? Now she’s a little happier, her pup will be able to eat for a few days, and I am *really* happy. See how amazing that is? Ruby ignores me for a really interesting smelling mailbox, and we keep walking – back home, and back to bed.

Last night I noticed that the worst of the abdominal pain had finally left, but not without leaving me a souvenir. I’m only slowly recovering from the amount of energy it sucked from me, the weariness & fatigue still preventing the enthusiasm & hope needed to promote my jewelry, letting people know it’s still here, still for sale, and I would still love to sell it.

At least I had enough energy to start a couple pieces last night, as well as begin learning an incredibly beautiful & intricate new weave – called “Dragonscale”.

As much as I love making maille & will probably never entirely stop, it’s frustratingly difficult to maintain the enthusiasm to keep pushing & trying to encourage people to buy when nothing is selling. Only a part of it has to do with the money. Perhaps nearly equally important is the satisfaction I feel, the excitement clients show, the happiness these bring them.

It’s even almost tempting just to give it all away –
just so I could see the smiles.

or die trying

I had prepared myself. Rehearsed the things I would say over & over in my mind, thought of new ones, carefully planning the appropriate metaphors and similes so that even as someone who didn’t have aliens slowly digging their way out of the front of his body as they gestated and came to full explosive maturity, my doctor would be able to clearly understand what it’s like.

If I started getting a bit too happy during the hours leading up to our appointment, I would immediately think of one of the “Lost Dog” fliers I’ve seen posted recently on light posts around my neighborhood, the last one I saw about a week ago having a picture of a happy, smiling Golden Retriever on it.

I swear, I could step over human bodies littered in the street with the only thought being that I hoped that I didn’t get some of the blood or decomposed flesh stuck to my shoe, therefore having to scrape it off on the tattered clothes or face of the next corpse I came across – but show me a picture of a dog who was lost, its home and warmth and everything it knows suddenly gone, and I would sit there staring at it, fighting back tears and memorizing every detail just in the off chance I actually did see it wandering aimlessly around the neighborhood, matted fur, a hungry, confused and terrified look in its eyes as it occasionally stopped, lifted its nose to the air and sniffed, hoping for the faintest scent of home or companion.

I had pictured going into a vicious, swearing rant the second the door to my doctor’s office was closed and we were alone inside, ripping off my umbilical hernia belt, violently lifting my shirt and dropping my pants. “LOOK AT ME! Look at… THIS, this monstrosity that has taken over my life and destroyed my hope, this THING that makes me mentally destroy any chance of a human companion before I even say the first word to a woman I could see myself with, someone to care for and to care for me, someone to give myself to, someone that will again fight like hell to stay alive for because I couldn’t stand the thought of them being alone. THIS DEFORMITY that I do NOT have to live with, do not have to accept, like having my legs cut off or being born with half a face or worse, no sense of style. The surgeon says he’s concerned that I would die if I had the operation, but doesn’t he understand that by NOT performing the procedure just to fucking put my insides back INSIDE that he is condemning me to an existence where every morning I look at myself, every time I wish I could go swimming, every day that it’s warm and I can’t even just wear a fucking t-shirt without having to put on the hernia belt and another shirt to cover that I feel that I would rather be dead? What right does HE have to play god, this spineless, ignorant, self-centered human-shaped Jell-O mold?

Et-cetera, et cetera. Fire & brimstone. The 15 minute scourge of Ward 86 at SFGH. Sure, there may be a bit of hyperbole in all that was said, but it wouldn’t be forgotten. John (my doctor) would cower in the corner, eyes wide and terrified and amidst the indiscernible mutterings of prayer for his safety and futile attempts to calm my tirade, swearing to me that he would relay every word I said to the surgeon, Dr. Mackersie, the second he felt safe enough to come out of the corner and sit at his computer to send an email.

Yeah, it didn’t really happen like that. At all.

The moment the door was shut to his office, he turned to me and with a sorrowful, incredibly caring look on his face said “I read the email you sent to me (see previous post), but… I didn’t know how to reply.”

Wait. What was I thinking? This is my friend, this is the guy who knows me, the guy who cares for me. I quickly fired the original mental director for this performance and brought out a new one. This needed to be a quiet scene, one where I played the much more realistic role of someone entirely drained of the passion for life, someone who, after so many years of holding on desperately to that last thin thread of hope, had finally let it go after John’s email to me saying that the surgeon felt the procedure would be too dangerous to perform.

Though the fact that I wasn’t really playing a role made it much easier, I still should win a goddamn Oscar for it. Sure, I overstated here, embellished there, and inflated some things quite a bit, but when you’re a generally happy person called on to act despondent & dejected so that the emotion of what you actually do feel sometimes is pounded like a stake into the heart of the person you absolutely, unquestionably HAVE to relay it to, a little bit of dramatic license is necessary. After all, HE doesn’t have a scrotum sticking out of HIS belly – but I think I helped him understand what it was like.

And I’m nearly certain that I saw him fighting back a tear or two at times.

The person I showed him truly was me, in every way. In everything said, in everything felt, in every tear that I shed yesterday – but as an adoptee, the very first thing I learned in life as I was taken from my mother’s arms, 15 minutes after I was born, was how to shut down and build nearly impenetrable walls that kept the pain away, so even I don’t know that it’s there, and even less seldom feel it. As least not most of the time. I’ve spent a large part of the last nearly 20 years working on getting behind those walls in a manageable way. When I first began, I went too far to quickly and had I guess what was some kind of break-down, where I was sent home from work & spent the next three days in bed, in a fetal position, trembling, wrapped as tightly as I could get my blanket around me.

Yesterday, I was able to carefully make just the most infinitesimal crack in one of my walls, and bring out only what I needed at the time. I’m not sure if that’s progress on my issues or not, but hell, it worked for what I needed it to, and he had sent an email to the surgeon asking about something he said, and also mentioned looking into a different hospital for the procedure if my insurance covers it. “I don’t want you to have your hopes shattered again if the other hospital also says no.”
“John… they already are.”

He was standing above me, put his hand gently on my shoulder, and sighed in a knowing but somewhat helpless way. I stood up, thanked him for everything he has done, we hugged warmly, and I left with the impression that if he could perform the surgery himself, he just might – knowing that it could kill me, but also knowing that I felt that if I died because someone was at least trying, that would be infinitely better than living the entire remainder of my life with the hernias and pain unendingly growing, knowing that all it would take is one fucking person. One person with enough courage to let me have the chance to live the life I fought so hard to create, then fought again to keep.

All in all, I think the appointment went pretty well – though I would have liked to have the chance to perform that scene where I ripped off my clothes and said “LOOK AT ME! OPEN YOUR EYES AND LOOK! I’M A MONSTER! YOU’RE DOING THIS TO ME!”
But then I would have to hire a completely undetectable camera crew, and I just don’t know where to find one of those for under $20.

Raising hell to escape from it

Today is the day I show them what’s been hidden behind the curtains.
In a few hours I make my way out the door to the hospital, for the monthly-ish appointment with my Doctor of nearly eleven years. He’s seen and been there for me for everything I’ve gone through, always by my side, always caring, always treating me as more than just a patient. John seems to see me as I see him, as a friend, and though it’s unlikely he shares the same sentiment towards me, I hold him as one of my best. He knows more about me in some ways than anyone else ever will, and he’s seen me at my physical worst.

But he hasn’t seen what I’ve been hiding. For the most part, I’ve kept that from him – from everybody – and have always played the role of the cheerful patient, regardless of how I physically felt. But this reaches far beyond physical. Sure, the hernias I have are somewhat painful, but more of a discomfort than an actual pain for the most part as I feel my intestines slide back through the muscle wall and find their little pocket of flesh when I stand and let gravity have its unforgiving way, stretching it like a growing foetus.

For five years, since my umbilical hernia started stretching my belly and giving me an outie that looked like I swallowed a cucumber whole and now it was sitting in my stomach, one end pressing up against my spine and the other trying to force its way out of my navel, I’ve been trying to get the operation that tucked everything back inside. Call it vanity, call it whatever the fuck you want, but I hated it then, back when it was a junior deformity, and it’s only grown; grown to the point of completely fucking my quality of life.

And unless this surgery is done, it will be there for the rest of my life, continuing to grow and get more disgusting as the months progress – along with my new hernia, an “inguinal” hernia, which sits, growing rapidly, jut to the top right of my groin. It’s nearly as if I have three ball-sacks now – one coming out of my abdomen, one on top of my c&b, and the original. From the discomfort to the monstrously hideous appearance that prevents me from doing nearly anything involving core muscles to simply taking my shirt off in front of *anyone*, I’m ridiculously limited in the things I used to love doing. STILL love doing, but can’t or won’t.

I’ve been nice up until now. I’ve talked rationally, pleaded, begged – I’ve written emails not only to my doctor* but to the surgeon who won’t do the operation based on a few minutes of poking & prodding and through that deciding that it was too risky, and I’m fucking tired of being nice, of being understanding.

Today I go see my doctor, and today, I’m not hiding my anger, pain, anguish or sorrow. I’m going to be someone he’s never seen before, and though performing the surgery is not his decision, it just might give him the balls to relay the importance of it to the person who is.

I’m fucking done being the good patient. The understanding one. The rational one.
I don’t give a fuck anymore, and it’s time to raise some hell.

*
Dear John,
Thank you for your call on Monday.

I appreciate you putting in the order for the hernia support belt, but to be truly honest with you (as I’ve always tried to be) – if the only way I’ll get the surgery I need is to have my intestines twist, then that’s what I’m going to try to somehow make happen.
For over four years (since Kat & I stopped seeing each other, back when the hernia was about 1/5 what it is now) I have pushed any possible romantic involvement away, not daring to even innocently flirt, terrified of even the possibility of anyone seeing the hernia, even more than I was afraid of telling people I was HIV+.
I haven’t even kissed anyone in over three years.

I used to have the morphine to numb the oppressive loneliness that the hernia has created in my life, and now, I don’t even have that. Living a life without even the hope of finding someone to share it with is getting to be too much to bear. I try, but at times I feel incredibly weak.

I’ve turned down offers to go swimming with friends, to go for camping trips at rivers or lakes, and anywhere or anything where I might need to take my shirt & hernia truss off. Even I try not to look at it in the mirror.

Though I understand the concerns about the ascites, I am able to keep it at a bare minimum hardly even trying to. On the day my inguinal hernia ripped through the muscle, I can *almost* guarantee that it had nothing to do with ascites – when I first felt the sharp pain, I was just playing with Ruby a little too enthusiastically. Due to the umbilical hernia combined with the months upon months I was mostly confined to a hospital bed, my core muscles have weakened to the point where they don’t have the strength to keep things where they belong anymore. I live in this body every day & pay close attention to it, and strongly feel that the weakness of the muscles have an incredibly large part in it all. I know that I can keep any fluid buildup down to the barest minimum before & after surgery if I’m allowed it. It’s barely an issue even without taking the herbs or meds for it these days – and if I have the surgery I’ll do everything it takes to heal without any complications at all.
I just want to feel like I’m alive again…

John, I’m sure you’re aware that it’s more than the lack of romance that is causing the emotional pain. The life I worked so incredibly hard to create -performing, costumes, and simply the joy for life that people once said inspired them – that’s gone, and it’s almost entirely due to the hernia & it’s physical & psychological effect on me.

When I was in hospice & the hospital after that I have NO doubt that it was my will to live that kept me alive and instilled in me the drive to learn to walk again. The spirit I once had to remain alive is dwindling.

Though it seems like Dr. Makersie is kind & thoughtful, there is one thing that he doesn’t seem to understand. Though the “statistics” say there could be a 30% chance of complications with the surgery… as my will to live fades, the chance of me dying without the surgery increases every day.

the fight inside

It’s been quite a while.
Many things have happened, and are happening.
The book – MY book, is still in the forefront on the priority list – and it’s right up there with staying alive.

I have no desire to literally  be a ghost writer… let me get known just for writing while alive, first. Then, we’ll see what I can pull off when the time comes.

This is my latest update on the page that is helping to save my  life in this battle – please share it, spread it around, let people know that they can REALLY rock my world. It’s at a critical point right now, and I need people joining me in my fight to stay alive.

Thank you.

~ Casey


There are bad days, & still worse nights – but generally my health & the way I feel are improving, getting close to what I was before I ran out of scratch & herbs the last time & ended up in the hospital.

This is when the fear creeps in; when I begin to feel the stress I know that trying to cheer myself up and hope that it may not happen this time is futile. I’ve been there. I know this place.
The money runs out, then the herbs, and my body begins to fall apart… again. Again, and each time it is more difficult, takes longer & a much harder fight to come back – and I don’t know if I have the strength to anymore. I don’t know if I want to.
I don’t want to have to wait until I end up in the hospital for the help to come, but when there isn’t an emergency, when it just seems to be daily maintenance, maybe you believe that your help in this fight is less appreciated, less needed – when in fact, it’s the exact opposite.

I need you the most when I am getting better. When things are less dramatic, when it doesn’t “appear” that I’m fighting for my life – just taking my herbs like someone else a bit more fortunate takes their 1-A-Day vitamin…

But EVERY day is a fight. I take 15 different herbs, document how much of each & play with the quantities. I write how I’m feeling each day, if there is a noticeable change, try to determine if it’s because of the herbs or just the day. Meditation, physical exercise, focusing & visualization, breathing exercises, wound cleaning & dressing from where I gouged myself due to the insane subcataneous itching (which drinking Aloe I just discovered helps a LOT) – but by far, the herbs are the most important.

That’s why the terror sets in when I’m broke & running low. I still need to eat as well.

Right now all I feel is dread. I’ve ended up in the hospital too many times, have fought far too long & hard, have endured more than enough pain – and I don’t want to have to go through this fight again for such a stupid reason as not having the funds to purchase what I need.

Though I am getting better, I still desperately need the herbs & teas & everything else that I take everyday to win this fight – as without them, it all goes to hell – and I’m so dreadfully weary of going there.
I just want to write my book, and not fight back the tears that come as they try to right now, when I don’t have enough money for the herbs I need because I need to purchase coconut water to fight the cramps.

I’m getting weary of asking, but right now, YOU are all that I have to keep me out of the hospitals, and I need you in this fight. NOW is the most important time – not after I’ve ended up in the hospital… as by then, it just may be too late. Too much work to come back, just because I ran out of what I need now.

Please. I need you in this fight, I need you in this battle for a life that I DON’T have to fight for every single day, and I need your support now. Now.
Please give, PLEASE share this *everywhere* and continue to share it, because apparently there are a lot of people who aren’t online 24/7.
***Another way to support the fight besides the campaign is my Paypal Account – ksea@CultureFluxMagazine.com – they don’t take the 9% of everything that GoFundMe does, so that’s really nice.***


It rips me apart to say this, to admit it, to ask over & over – but I really, really need all the help you can offer.

I mean hell – we’ve come this far, and I’ve been busting my ass – (the herbs are only a *small* part of the daily regimen) – so lets keep going, please?
I’ve decided that I really don’t like hospitals – at least not spending months in them.

FIGHT with me, SHARE this campaign – and from the bottom of my heart – THANK YOU!

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.

3:00 am

Thanks to some great friends, last night I was able to move Alice to a safe place until I am able to leave this one.
She now calls the American Steel building home, where I’ll be able to work on her when I can, and she’s off the street – so her getting towed is one thing I don’t need to worry about anymore.

My health… my health is a frustrating game, my Doctors & I trying to beat it but not making much progress, it seems.I must admit that it;s driving me crazy.

The first month I lost 25lbs- all of that weight was being carried around in my legs, slowly seeping out anywhere it could. There was promise back then, but now, we’re just trying one thing after another looking for a way to fix me. Though I miss her, ifI were attempting to do all of this while living in my motorhome like before, it would be much more difficult. Here at Maitri they watch me almost too closely, to the point where there is no privacy – but I must admit at the same time it’s nice to be able to keep close tabs on any differences that the things we try do.

Tired now, going to read and hopefully get some sleep. With tomorrow/today being Thanksgiving, I know I’ll need all the energy I can dredge up to tolerate it.

Happy Thanksgiving, everybody.

 

 

Living Decomposition – & a release to move forward. (Warning- photos not for everyone.)

 
Around and around and around we go, where it stops…
 
It comes again, suddenly and with little warning.
I swell. I scratch. This time, I write to try to make it go away.
I Learn.
Close enough to the same time for the past three years to now be called a season – the legs swell, starting at the ankles, feet, calves – at first only a little, only enough so that you hope it might go away this time, pass me by because somewhere we did something right – but again it is here, and I only know enough about it now to be afraid.
The swelling, the flesh stretches,  dries, cracks, then a thin, yellowish clear (or clearish-yellow) fluid begins to seep out of almost the entire calf, behind the knees, at the ankles under the bone. It runs in rivulets down my legs or soaks like water through my pants.
It’s enough to drive me insane, if I wasn’t able to sometimes laugh, if I didn’t have something of a morbid humor & fascination that I can sometimes dredge out of the frustration and pain.
 
Hell, through all the crap it helps to figure out ways to smile, even if it’s by swearing at my legs and threatening to disown them. (Do they do leg transplants yet, or should I start building my little skate-kart now? I’ve got some wicked sharp knives and a low tolerance for this shit anymore, ye hear that, you traitorous bastards?)
 
The first two years I went with the words of the dermatologists – “Moisturize like crazy.” – but while that helped the dry skin & itching (as long as I kept them wrapped in a couple rolls of gauze then ace bandages so it wasn’t simply immediately caked on the inside of my pants or skirt – GODS, I miss wearing my skirts!) – while it helped with the dry skin, the second the rolls of saturated gauze were removed, my legs poofed up again and now – now, the skin was soft. Instead of only the dry flakes of skin falling off, my fingernails found no decent barrier between the outer layer of flesh stretched thin and regardless of how lightly I scratched, they cut, gouged past the only protection, digging into the white, soft flesh with no resistance. Down atrocity legs ran rivers of blood.
When I changed the dressing, I would soak through paper towel after paper towel to the point where they were dripping. Towards the end of last years season I finally realized that I could have some twisted fun “painting” with the blood, quickly setting a towel on my leg then taking it off. A couple pictures are below – though those certainly aren’t my best work.
 
I try to keep my spirits up. I try to remember that there is more to me than this.
 
I try to learn.
 
I try not to scratch, but that’s nearly impossible. (And of course you wouldn’t be thinking “Why doesn’t he just not scratch?” – would you? No, of course you wouldn’t be so completely idiotic or dim-witted as to have that cross your mind – but then again this automatically posts to Facebook & Twitter, so just in case…) Imagine a huge, unbearably itchy mosquito bite right in the middle of your back, the place you can’t reach. Now slap some Poison Ivy on it. That’s close. Now some poison Oak. Getting there.
Now imagine the insane relief when that spot is scratched. Get the picture?
That’s what it is like on both of my legs, with slightly less over much of the rest of my body, mostly my shoulders & arms, chest & lower & upper back.  One small place starts itching and it expands. I can usually only stop when the relief turns to pain, or close to it. There are times when I almost weep, times when I literally can’t stop to make it out the door to an appointment. I feel like I should be stronger than this, that I should be able to use my mind to control it, to at least be able to… I don;t know. Stop.
It feels like the itching is coming from deep inside, inside the bones. I have learned to keep my fingernails trimmed close, that sometimes rubbing violently with a rough terry-cloth towel will help.
I try.
I learn.
I sometimes scream in frustration.
 
My dry, powdered skin coats almost every surface. The larger pieces fall to the floor. The legs are an entity all their own, thick, moist scabs & chunks of flesh. I can pick those up with my fingers.
 
Alice wears my flesh.
 
I wipe almost all the surfaces down daily, sometimes twice, vacuum every couple of days. I’ll be damned if my home is dirty. A clean home helps keep my spirits as up as possible -(and you know, all those visitors I get.)
 
When dealing with this, my strength, my spirit, and my passion for life is all I have to keep me going –  through it all, these are the gifts I have been given.
 
Still however, at times these wane, and I don’t know what I would do without Val & John, my nurse & doctor. Our relationship goes far past patient-caregiver. They are my friends. The friends I have been needing since that call in 1985 but never had until them – and they know me well enough for me to trust that they are true. When all of the strength I have just doesn’t seem to be enough, I know that they will be there, and I know that they will understand.
It seems as if they see something special in me  – as if they see who I’ve always felt myself to be. Of course, there have been and are others, a few people who have come into my life and remained deep in my heart, but those have usually been lovers, whose heart I remain in, but whose life I couldn’t…
 
Just the other day John looked at me, straight in the eye, and told me that he is grateful that I’m a part of his life.
It’s because of him, because of Val, because I have so much left to do in this overwhelmingly beautiful world that I’m going to keep fighting. I am going to keep fighting and beat this. There is someone that I am becoming, and I would love to know who that person is.
 
These are words. Words that needed to be said, so that they can finally be released, discarded, taken out of my head. You now know a small amount of what my immediate life is like, where kSea has gone.
I’m busy doing whatever I can to kick the crap out of this.
I’ll be back, but different, and with one hell of a passion, one hell of a vengeance. You don’t go through shit like this without having it affect you in some way – learning, growing, becoming more appreciative of the smallest things. You see more, love more, and have an uncontrollable urge to smack life into the dull and mundane – (or maybe those are still the side effects of the Hep-C drugs…)
 
One last thing, please, I can’t ask you with enough  importance to me – if you choose to comment on this or any other post, do so here on my blog. Some comments I receive are beautiful, mean a lot to me – and I want to keep what you say regardless of what it is. I still have comments from years ago that lift my heart when I read them – but if you comment on Facebook, they will soon be lost forever.
I would hate to have that happen.
If you have an inkling to call, text, or email, my phone number & email address are everywhere.  Please. Really. In order to get or reply to messages on FB I need to use my computer battery, and these days fuel for the generator to charge it is very tight – and I have been tending to stay away from cafe’s since I’m supposed to keep my legs up – and yeah, the whole top of my mouth is gone too.
That post is coming soon…

 
 
And now, picture time!

Though I wish I would have taken many for my own morbid & grotesque entertainment (my hands were usually covered in blood), here are a few photos that I have, mostly in order – beginning with my first staph infection on my calf, then the next staph infection which sent me to the emergency room at Love Parade a couple years ago – and on. The second year of swelling when it was clearing up, at BM ’08, and some rather unexciting ones from the past week or so – oh, and of course, a couple of the paper towels.