August | 2011 | of Petals & Thorns

It’s been seething, growing, this anger and frustration – for days, maybe weeks. I feel the pressure behind my eyes as the tears well up, I have given up the fight to maintain a false smile.

I look around the room and really, there isn’t too much to pack. Clothes, books, my bows – a scattered few other things and all the herbs. I fight the urge to run away, break free from this place of disease and death, put false tags on my motorhome and just go. Move. LIVE. See and laugh with my beautiful family of freaks, rid myself of this oppressive, suffocating weight in my heart.

My Dr. is finally back from Tanzania & I have an appoint with him tomorrow. I love him dearly, & for a while in the past, when I was on Interferon considered him my sole and only friend – but that was mostly the interferon, and I hated everyone & their false promises, their lies, I hated everyone who never called… but that was then. Mostly.

We’ll see what he says tomorrow – probably going to push for a transplant again and I’ll refuse, as he is dreadfully stuck in his Western Medicine Ways…

Need to get ready for another appointment now, then when that’s done crawl back into my broken bed and sleep through the pain as much as I can, hopefully dream that I’m somewhere else – anywhere but here.

8/8/11 > Gathering Steam

Just after 5am, and I’m woken by the sound of the first of the J Church trains as it rattles and squeaks by. Of course. Finally a brief moment of good sleep & I forgot to close the window after airing out the stuffiness in this room. Now the question is do I continue to write, or try to sleep for a couple more hours?

Ah. Hand cramping. Makes the decision pretty simple. Need to get more oral hydration stuff, as it seems to be the only thing that helps a bit. Drinking gallons of fluids just doesn’t seem to to too much besides make me feel like my abdomen is ripping apart more than it already has…

8/10/11 > Getting into Gear (& grinding them)

10am

Another sleepless night, but not for lack of trying, that’s for damn sure. There were so many times during the night where I wanted to write, to finally begin what I promised myself days, weeks, months ago, but there was that little “what if I can sleep this time?” after wandering the halls, or going outside to read & not really want the cigarette I was smoking. Much bigger than that however was wondering where I would begin; there is so much to write about I’m intimidated, but at the same time, no

thing at all due to the fact that I’ve been staring at the same four walls for the majority of my eleven months here, roughly twenty fucking hours a day. Still, I much prefer the pseudo-sanctuary of my room to the sights and sounds in the rest of the building: Chris, who is starving himself to death, mind barely there (he was trying to smoke his coat last night – almost lighting the string around the waist.) KK, who just got here & seems really sweet, but he’s barely flesh & bone as well – Barbara, who has nothing interesting to say so she just complains about everything & has absolutely no class at all, talking loudly & in detail about body functions & how much everythig sucks while everyone else is trying to eat… it gets to a guy, ya know? My room is my haven.

With the interruptions & lunch, a bit of time on the patio & vacuuming after the cleaner (barely) cleaned, it’s now around 3, & instead of trying to keep my eyes open to write more (& constantly deleting rows & rows of one letter as I nod off with my finger on a key), I believe it’s time for a siesta. More later.

8/11/11 – 5am > Tentatively Stepping on the Gas

I may as well get it over with – talking about my health. Quite honestly, I’m sick to fucking death… wait, perhaps a better choice of words, yes? …I’m weary as hell thinking about it, focusing on it, researching things that will improve it. It’s in my thoughts day after day, hour after hour, in everything I eat, sleep, and shit, taking up some really prime real estate for other activities I could use my mind for.

One thing that I’ve decided is that I’m no longer going to “fight” to get better – I just AM. When I say I’m fighting the HepC, Cirrhosis, and all the symptoms such as the legs, fluid blisters on my hands & fingers, incessant itching, dry skin, etc. – when I say I’m “fighting” alll of that, it gives those things more power to be there. Acknowledges them, validates them. In order to fight something, there needs to be something to fight – so I’ve decided to simply see that it’s there, but it doesn’t belong. I’m still going to do everything I can to get rid of it, but just not give it power.

Things are definitely moving forward, and healing is happening – and I’m fucking ecstatic about it. Just a few short months ago I weighed in at 227 lbs – fifty pounds of fluid that my body couldn’t process, so it all went to my legs and abdomen. My abdomen was so bloated that it actually tore the muscle down the center, giving me an umbilical hernia. I went through months of barely being able to life myself out of a chair, being exhausted all the time, and countless other problems that came with it, I realized that western medicine wasn’t doing crap long before, so had taken it upon myself to research as much as I can and find a way to fix that… and after months, I did. there was a difference being made, however small. I was winning – but with the amount of herbs I needed, knew that I couldn’t do it alone. Sure, I did the research, but – I needed help. There was no way in hell that anything was going to happen unless I sucked up my pride and actually asked for help. Somethign that I truly loathe to have to do, like most people I know – but I think it even runs deeper in me. Save for a few times where my motorhome got towed, I’ve done pretty much everything in my life without really much help from anyone, and that’s the way I liked it. I am here to help others, not the other way around.

Well, the great big awesome WoW decided it was time for me to be schooled. Hardcore, slapped upside the head, do this or die with your stupit pride schooled. It has literally taken the threat of death for me to ask for help.

And you helped. And I cried. I still do, all the time, out of appreciation for the amazing people in my life who have made my life more possible to live, and healing to happen. There is absolutely no way whatsoever that I could have done it without you – or continue to do it. I still hate asking, but thankfully the Uber-verse gives me little bits where I can help others in some way to make the pain of asking more tolerable – barely. Today I weighed in at 176.3 lbs.

I think what I’m trying to say is – thank you. For the love, for the financial help, for everything that is making what would not have been possible without you… possible. From the bottom of my heart to the top, and with everything I have, thank you.

I need to get ready for an appointment now, but… yeah. I just wish I had more words to show my appreciation – but instead I guess I’ll just have to get better, and get my ass out of here, back to the only true family I have – and I couldn’t be more fortunate to ave them be you.

SHIT. Running insanely late. post post post & go fly!