I won' t back down

Yeah.... Not happening.  I have been cut open - more than once... Keep getting pushed around- "you're so young"-"look good"-"are so young".  Well guess what folks?!  I am young, I am still royally jacked up on the inside- but am am still pretty so THANK YOU, kiss my ass and pay me some fucking respect!!!!!!

When did it have to go hand in hand that you are either old or ugly or missing at least a massive limb or some other fill in the effing blank for things to be considered "kosher" on the disability front?  I'm sorry that I make this look "pretty" to you mean person in the parking lot bitching me out for using my placard... Do I get to question you on you apparent ugliness/bitchiness/black heart/etc when you do?  Oh no?  No throwing stones back?  You only like to pretend to be self righteous for my people?  Yeah.... Thanks.... Please STFU and go do something else...

Do I sound mean now?  Good.  I'm getting in touch with my inner bitch to deal with these "helpful" peeps....I'm tired of being bullied bullied by small minded assholes.  Being disabled means more than over 80, missing a limb and super obese.  This is one girl who is done with being bullied by the oh so educated - ROOOOOOAAAAAR!!!!!!

Well I won't back down, no I won't down
You can stand me up at the gates of hell 
But I won't back down
Gonna stand my ground, won't be turned around
-I won't back down, Johnny Cash American III

Dead Sea

So apt... I feel dead... And yet the lyrics of this effing awesome favorite of mine - my man is also dead to me.  Confused yet?  Welcome to my f'ing life.

So, my body just feel corpse like.  It's just some mean trick that keeps pushing it to keep moving forward... Some sort of sick joke ala "Weekend at Bernie's" thing.  The scarier thing is that it isn't.  The sick and stomach twisting sad amounts of sleep (I.e. NONE!) are in fact real, they aren't a joke of some puppeteer job mad some "haha" moment.  I just feel like a zombie.  I am so tired- but I hurt so much mad am in so much pain that I can NOT get to sleep or even comfortable... *sigh*....

This makes me sad, angry, frustrated, down and ready to just fight anyone.  I am tired, I hurt so much- just let's go.  Unfortunately- that can put my dear man square in the cross hairs.  He wants to fix things, the situation, me- and when I feel crappy- that can be a real molitolv cocktail.  Even when I'm so angry and railing and so mad at the world and ready to just fight- he hangs in there... I don't want to fight him- and he thank god knows this- and he knows that  we both hate fighting the unknown.  But he hangs in and keeps me up- ebven if it's letting me fight to keep me from crumbling so I don't give in.  He knows that sometimes I have to fight or I would just curl up and give up.

I've said it all along-  this disease is f'd up- and there are only a few very select people I'd wish it on.

In the meantime, I need to focus on my strength and my fight.

Like the Dead Sea
you told me I was like the Dead Sea
you'll never sink when you're with me
Oh Lord, like the Dead Sea 
~The Lumineers

Open Your Eyes

Eye opening.  There is so much eye opening to be had really.  I wish that I could really open peoples eyes to what I deal with - what my disease is like - how truly jacked up, messed up, twisted and nasty it is.  All too often because I'm young and I don't have anything obvious- as my pain psychologist puts it - no amputation, no chemical burn, all my hair is on my head - people assume that I am fine.  Ah, but I'm not.  I'm waging hand to hand nasty in the trenches combat every second of every day.  It's a 24 hour battle for the past 16 years.  That's a really long time to fight.  That's a long and bloody battle to wage - especially when it's against yourself.  To have to fight your own body, to push yourself to not give up, to push yourself to keep going to physical therapy, to keep getting up, to not give in - all the while dealing with the snark of life - it's utterly exhausting.

Winter is never my happy time for me.  Well, maybe if I lived somewhere warm and tropical - but until I move to Bali or Australia, it continues to punish me.  This winter is grinding and pulverizing me in a fine dust.  My bones grind and scream.  My joints pop and scream.  My skin screams in protest against the offense of the wrong fabric - it takes forever to find the right softness of pajama pants just to bum around the house in.  The other night I had to keep the bed side light on due to the fact that I had the sensation that my the lava feeling was so strong and the burning was bad (no surprise there) but in addition, it felt that my arm was just filling up and that my skin was splitting open.  I felt that my skin was split open and my tendons were splitting out.  It was the worst hellacious sensation I've felt on top of my usual ones.  It quite frankly sucked and felt like some sort of horror movie come to life.  It was the middle of the night and just felt like, "really?  really?".  So, yeah.  I'm over this whole winter thing.  I'm ready for sunshine and warmth. I'm ready for a night of sleep that consists of more than 2.5 hours strung together.  When your grand total of sleep is 4 hours...it makes you feel foggy, confused, used up and just defeated.

I'm tired.  I'm of feeling the way I feel.  I'm tired of people acting like they understand how I feel - newsflash YOU DON'T!  Oh, you sprained your wrist - boo hoo, suck it up.  You "fill  in the blank" - I don't give a flying f**k.

I had a better idea of what I wanted to say in my mind - but as with everything - it fizzles on the way from my brain to my mouth/fingers.  Between the pain circuits on overload nonstop and the lack of sleep - I can't cobble together what I want to say, how I feel, what I need to get across.  I end up in tears or just wanting to lash out.  I hate it.  I hate, hate, hate, hate it.

Maybe I'll figure out a better way to think this through.  But the pain is just messing with me.  It's like having a constant drill in your brain - or having some asshole punching you in the face while your trying to give a speech and come off as pulled together and thoughtful - all the while getting smashed in the face and spitting out teeth and blood.  Kind of hard to put the two together, no?

So, eff it.  It's just not going to happen today.  This post is just going to suck.  But, I'm not winning any writing awards here.

My bones ache, my skin feels cold

And I'm getting so tired and so old

The anger swells in my guts

And I won't feel these slices and cuts

~Open Your Eyes, Snow Patrol

The (Wo)Man

It's been ages.  I've lived, died, been resurrected., and am slowly clawing my way out if the coffin again.

The lovely surgery with the 8 week recovery- didn't happen.  It was 15+ week recovery with a lot more damage to my body.  With the extra time and damage comes extra wear and tear on your spirit and mind.

I still fight & hope.  But I am weak, tired, wracked in pain thru the wee hours of the morning and so lonesome I could just disappear from it all.  The evil monster and his equally batshit crazy wife are trying to cause stress and strife- thank god we decided to X them out of our lives- what NUTJOBS!!

I just want to not feel like gravity will destroy me.  I want to feel semi human.  I want to find me again this year.  PLEASE let THIS YEAR, 2014, be OUR GOOD LUCK YEAR!!!

More soon.  Not dead yet- y'all aren't that lucky!

Somewhere I heard that life is a test

I been though the worst but still I give my best

God made my mold different from the rest

Then he broke that mold so I know I'm blessed (this is my world)

~The Man, Aloe Black