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