My heart Is A Wasteland

Today has been a horrible day after a fantastic weekend. I let my reckless desires come out and I danced among them. I fell smitten for another beautiful boy who is equally as queer as I am. I showed him my feral, chained beasties and he wanted more. He pampered me, gave me gifts, sang to me. He made me believe I could do this again. Do the poly thing and open my steel doors of my inner world. Open so completely, all the bats fly out and the demons escape from hell.

Because my heart is a wasteland. And my body is the cracked, desecrated earth my dreams lay barren on. I am a thing stitched together with madness and horror. Nothing grows in my fields.

Sometimes I hate myself so completely it takes all my scraps of willpower to not fucking blow it all up.

My heart is a wasteland from all the nukes I drop on it.

It's been a while since I wrote. And for good reason. I'm struggling to not go hollow inside. I want to succumb to my artwork, to be possessed by inspiration and creativity. I want the muses to take me and ride my skin like a battle horse.

But there is always a cost. The closer I am to magic, the more insane I become. Hanging on to reality is already a Herculean feat. And this month is like a play-by-play in my head of Kweeny's Horror Stories: The Christmas Special!

A lot of terrible shit is bubbling up from the rivers of poison in my wasteland. Flashbacks, fibro flares, nightmares, no sleep, nerve pain, panic attacks...you name it. I'm a fucked up Kweenybeast right now. I'm fragmenting too. Dissociation is a bitch. Been reaching out to trusted folks for anchors in the storm. I feel like I cant stuff it all back in once I open the puzzle box. The demons inside wait for me to drop my guard before they tear my world apart.

I dont think I could date anyone who cant ride some storms with me and hold my hand while we crash against the rocks. I need my lovers to be just as fierce as me, so when I test them unfairly for the ghosts who tried to destroy me, they dont run for the hills. So when I finally drop my armor because I cant be the strong one all the time, they dont trash my bleeding heart with carelessness.

I'm fighting the urge to nuke this new, budding relationship I've started. And it was me who asked him. Though he might have been thinking the same thing towards me. But my mental illness won't let me trust even that.

Fuck you my graceless heart.

Creating My Life

Things have been rough around here, especially financially. Moving to Seattle took a lot of out of us, and we have very little family support to boot. Living in our tiny apartment costs more than it's worth. Debt collectors keep calling me to remind me I owe them money for being in the hospital last year, our car needs repairs, I need a job that pays at least 800 dollars a week, but I can only work from home due to the pain levels I am in, and I am opening my very own online shop with things I make with my own hands.

Life has been rather stressful you might say.

In a fair world I could just make art for a living and live off that. But I'm not stupid.  I know I need to find something real soon, because things cannot go on this way. Having people nag me about it only makes me angry and gets nothing solved. I know what's going on. I'm not blind to it. I know somehow we need money, and I don't want to end up in the hospital again because I tried to do a job in the outside world. I can't get disability in this country because I have never had a job here. I spent my working years in Canada. I live in the weirdest grey area you can get, trying to scrounge what I can where I can. I might have to start a fundraiser, but I don't like begging for money. I want to earn it. It's why I made my business to begin with. It's something I can offer in exchange for that paper shit. I am not broken because I have chronic illness. I just have to find alternative ways to get funds. If anyone has helpful suggestions on what I can do to supplement the art gig, please let me know. Things are getting desperate.

On the positive side of things: I am happy to report I am days away from my shop Marrow Minded Crafts opening! I am nervous, because anything like this takes so much work to get off the ground, but I am happy as well. I get to do something I enjoy doing, that makes others happy! YES! I love my little shop, and I am happy with all the commissions I've made for others. Now it's time to branch out. Making things makes me feel empowered and creative. When I think of something I want to try, I just do it now, instead of agonizing about it. Maybe I am just done dreaming. Dreaming is important, but don't get stuck doing only that. Dreams take work. You need to commit to your dreams, and even if it takes years in the making, don't give up.

Things are going to get better. Because I demand it. #dontfuckwiththequeen

A Day in the Life of a KweenyBeast

I wish I could tell you that when I wake up in the morning, it's like I am a warrior of old, strapping on my armor and picking up my heavy sword. That sounds much more like how I see my inner warrior getting up. But that's not how I do it.

I get up and gasp in pain. Instantly as I reach consciousness, I also feel horrible back pain. Sometimes I wake up in sweat, even on cold days. But right now, the weather is tremendously searing-ass hot out, and I am melting down to my bones. So I wake up sweaty, and I shrug. The pain is what I am now worried about, and I drag my sad ass to the washroom. I take some pain meds, then my psyche meds, then my supplements. I grab my cremes and start smearing them all over my back. Slowly the pain bows down for a while. I sigh and brush my teeth, one hand holding my body up on the sink.

Once I have fully medicated myself I eat and then do yoga. I do 20 mins or so and try to do as many poses as my body will allow. Sometimes, like today, I feel numb inside. I do things, but I am not feeling it. I can't handle the heat. It feels like it's burning my skin off and I am not even outside. Sweat is still dripping off me in rivers. I try going down for a nap to see if it helps. It doesn't. I wake up feeling nauseous. I put my clothes back on but they hurt my skin. Everything hurts my skin, even air. I'm trying to keep up my liquids because I need more than most people. I decided having a bath would cool me down. For a bit it helps. My skin no longer burns me. I even added some bubbles because I could. It's kinda lovely here until my neck screams at me. Party pooper.

I try doing art today. Or do some house work like cleaning the kitchen. I loose myself in art enough I ignore the horrible pain in my back returning. By the time I notice it, it's really bad, and broke through my creative flow. Now I am upset. That touched me past the numb place. I'm crying softly but I don't know why. No one is in the house right now but the cat. And she has heard me cry before. But I swallow it half way down. I just don't want to fall apart right now. It's not as bad as I am making it out to be...

But it is bad. Really bad. My muscles spasm. My heart aches. Nerve pain shoots through my body.  I want to be successful. I want to be functional. I don't want to fall apart like my mother did. I won't give up...

I fall to my knees, like a wounded warrior. Blood pools at my knees and I see a broken sword in my hands. I am tired from the fighting. The constant fighting. When do wounded warriors get to rest?

But I know the answer to that.

And so I get up, clumsy, and smile for my loved ones who come home from work. Tonight I get to cook dinner. The pain in my every-place makes this feel like cooking in hell. Even things I enjoy doing, are hard. But I will do them despite my body's protests because they are mine, not the illnesses. I eat dinner, I tuck my loving husband in. And then I am alone with my pain. Again.

I sometimes like it though, but not always. I spend a lot of time alone. I work better alone too.

But I only work at night when I didn't work in the daytime. I rest now. I sit and watch a show or a movie and I rest. If I cant sleep due to pain, I make my space as comfy as possible. Because I had a hard day. And I am learning that I need this to be sane. To get through the hard times.

And I rest until I get sleepy. Then I drag myself to bed, take my night meds, and go to sleep. And I hurt. But exhaustion has the upper hand tonight. With her dark tendrils, she holds me and I pass the fuck out.

My wounds bleed out through the night through my armor. Because I don't have the energy to properly take it off. It feels like the weight of the world. My world. My weight.

This is how I endure a bad flare up day. It's not really exciting. Just a day mostly wasted to thrashing with my Chronic Illnesses. The days I can get shit done, pain be damned, are magical. I cope the ways that work best for me, and sometimes, just enduring the pain is all you can do. It too shall pass, but sometimes the wait takes forever.

A Day in the Life of a KweenyBeast

I wish I could tell you that when I wake up in the morning, it's like I am a warrior of old, strapping on my armor and picking up my heavy sword. That sounds much more like how I see my inner warrior getting up. But that's not how I do it.

I get up and gasp in pain. Instantly as I reach consciousness, I also feel horrible back pain. Sometimes I wake up in sweat, even on cold days. But right now, the weather is tremendously searing-ass hot out, and I am melting down to my bones. So I wake up sweaty, and I shrug. The pain is what I am now worried about, and I drag my sad ass to the washroom. I take some pain meds, then my psyche meds, then my supplements. I grab my cremes and start smearing them all over my back. Slowly the pain bows down for a while. I sigh and brush my teeth, one hand holding my body up on the sink.

Once I have fully medicated myself I eat and then do yoga. Sometimes, like today, I feel numb inside. I do things, but I am not feeling it. I can't handle the heat. It feels like it's burning my skin off and I am not even outside. Sweat is still dripping off me in rivers. I try going down for a nap to see if it helps. It doesn't. I wake up feeling nauseous. I put my clothes back on but they hurt my skin. Everything hurts my skin, even air. I'm trying to keep up my liquids because I need more than most people. I decided having a bath would cool me down. For a bit it helps. My skin no longer burns me. I even added some bubbles because I could. It's kinda lovely here until my neck screams at me. Party pooper.

I try doing art today. I loose myself enough I ignore the horrible pain in my back returning. By the time I notice it, it's really bad, and broke through my creative flow. Now I am upset That touched me past the numb place. I'm crying softly but I don't know why. No one is in the house right now but the cat. And she has heard me cry before. But I swallow it half way down. I just don't want to fall apart right now. It's not as bad as I am making it out to be...

But it is bad. Really bad. My muscles spasm. My heart aches. I want to be successful. I don't want to fall apart like my mother did. I won't give up...

I fall to my knees, like a wounded warrior. Blood pools at my knees and I see a broken sword in my hands. I am tired from the fighting. The constant fighting. When do wounded warriors get to rest?

But I know the answer to that.

And so I get up, clumsy, and smile for my loved ones who come home from work. I eat dinner, I tuck my husband in. And then I am alone. Again.

I sometimes like it though, but not always. I spend a lot of time alone. I work better alone too.

But I only work at night when I didn't work in the daytime. I rest now. I sit and watch a show or a movie and I rest. If I cant sleep due to pain, I make my space as comfy as possible. Because I had a hard day. And I am learning that I need this to be sane. To get through the hard times.

And I rest until I get sleepy. Then I drag myself to bed, take my night meds, and go to sleep. And I hurt. But exhaustion has the upper hand tonight. With her dark tendrils, she holds me and I pass the fuck out.

My wounds bleed out through the night through my armor. Because I don't have the energy to properly take it off. It feels like the weight of the world. My world. My weight.

This is how I endure a bad flare up day. It's not really exciting. Just a day mostly wasted to thrashing with my Chronic Illnesses. The days I can get shit done, pain be damned, are magical. I cope the ways that work best for me, and sometimes, just enduring the pain is all you can do. It too shall pass. Sadly, pain should pass faster than it fucking does!

Pain Journal: Calloused Heart

I'm sitting here listening to one of my favorite spoken word poets, Shane Koyzan. Every time I hear his poem To This Day, I cry.

Except today.

I'm numb to the very core of my being. It's how I can cope with the whirlwind of emotional and physical crap I am dealing with right now. I was dumb yesterday, having had a wonderful visit with a friend then trying to nap to get some spoons back. I ended up with less spoons than I started with, which was a bummer. So I totally forgot until I had to go take my dose for the evening, that I needed to get my refill on my drugs.

It happens to everyone once in a while. But when it happens to me, I get super fucked up.

My hands are trembling so bad, I feel like I am coming off of crack. This is the price I pay, among other symptoms. My life is full of warning labels and chemicals. Sometimes, they make me feel empty. I feel like that now. I had some mania this morning. I woke up earlier than normal and had a had time getting to sleep. I spent most of the day doing chores to burn off the mania, which was causing flares throughout my body because everything is connected. It really is true that if your mind isn't stable, your body wont be either. Especially if like me, you are super sensitive.

I hate that I need chemicals to function. I hate that I sometimes live in fear of the day my drugs run out. I hate that I can't just fucking be a functional human being. I had to go through a lot of mental bullshit to get to a point where I am now. I used to fear drugs of any kind. Even Tylenol was scary to me, until I started hurting in ways that make you loose all sense of dignity and pride. I do what I have to now to stay stable. My personal war keeps me fighting for my health and sanity.

But when I am numb like this, I force myself to say something, anything, and be heard. Because I need to be. I need to know I am not alone. That this shit happens to other Chronic Illness Warriors too. The loneliness gets to be too heavy. Sometimes the horrible shifting between beast and beauty leaves me with nothing left to give. I lie in the wasteland of my suppressed tears and wish something would give enough that I could feel a release of the pain. Just a little. I will take any little bit of peace right now.

Today I feel a callous on my heart. And I don't have the tools to deal with it. So I will ride it out to the bitter end, where I will probably be on my yoga mat weeping. Maybe tomorrow.

Tonight, I endure.

Can You Really Forget The Past?

I did something really weird today. It took until now for me to get reminded what today was. I was going along having a pretty good day. I hung out with one of my best buds, I laughed over stupid memes and bad jokes with folks. I got to have a great dinner with great people. I even had some awesome animal moments with the Katface and my snakes.

I was feeling a little anxious, but I couldn't put my finger on why. Everything seemed pretty great...

Then Facebook Memories reminded me of this post: http://chronicwerewolf.blogspot.com/2015/06/dearly-departed.html

It's the anniversary of my mother's suicide....shit.

I actually forgot for a moment there. I lived my damn life and had a good time. I have been a bit numb lately, but that wasn't connected to anything. Just something that happens after a manic spiral, and I get really tired easily. Been sleeping a lot, though not restfully. It feels like chasing a dragon I can never catch...

But that is just a day in the life for me. My feelings are not connected to my mother.

And I refuse to feel bad about it.

So I forgot. I don't have to honor her. She wasn't an honorable person, and she never added anything good to this world. She doesn't NEED to be remembered all the time. I don't have to torture myself with horrible memories of how she failed me as a mother. I'm owning my shit,  the same shit she threw in my face like refuse. I am loved, in ways she couldn't even fathom. I am strong, and I use the darkness she and many others beat into my soul as healing and hope for others. I don't give up. I have suicidal thoughts, even recently, and I wrestled those demon voices down. I will not be devoured by my internal hydra. I will keep cutting the heads off until there are no more voices left to destroy me.

I am glad I was distracted enough by love so I didn't dwell on hate. I'll do something special for myself later to remind myself I am worth it. I won't let the darkness take me down. Not today. Especially not today.

Stay in the ground where you belong bitch.

I'm over you.

Pain Journal: When The Worlds of Pain and Pleasure Collide

My week has pretty much started on Friday. I had a convention this weekend, and while it was a blast, it was taxing on me. I am exhausted, and my week isn't over yet.

That's one of the worst things about chronic illness. For me at the moment, I am always in a lot of terrible, mind-numbing pain. I sometimes go to these events and have periods where I am just wandering the halls in fugue states because I am so drained and sore I can't think. It's like shell shock. All the pain over rides everything and you go into a haze. The world is blurry and unreal, and the pain screams like demons. It sucks, but it is the reality of my life. I don't let it ruin my fun, but it does hold me back, if I am honest with myself.

So I finally bit the silver bullet yesterday and went to the doctor. I just wanted a refill on my medication, but I got so much more. After trekking my sore ass on the bus all weekend, I dreaded doing it again, and again this week. After I finish writing this, I am going to Portland for a Horror Film Festival. Pretty stoked for that! But getting there and back is going to cost more spoons that I don't have. I have already dipped into the extra supply. After this event, I am fucking spent.

But back to my doctor visit. So I had to wait for like 2 hours before I was seen, because I walked in thinking the place I was in was a walk in clinic. I was wrong. But now I have a PCP in Seattle so that's good. I also didn't expect for the nurse practitioner to be so thorough. She not only gave  me new meds, she didn't make me fight for my Tramadol or Flexeril, and revealed to me something slightly scary...

One of the meds I was on had side effects so bad the nurse demanded I stop taking it.

Now I know when a doctor reacts like that, it's bad. They wont tell you how bad it is so as not to scare you, but if they outright say, "Please stop taking these!" You listen. I had been taking this medication for over a month now. And yes, it has scary side effects. But I tolerated them, hoping it would help me or get better. I trusted my old pain doctor. I thought he knew my health well enough by now to know what's good for me.

This is why I don't fucking trust health care professionals.

So after that lovely revelation, I was sent to get blood work done, and she gave me a referral for PT. Which is awesome! This nurse was fucking on the ball. And never once made me feel like a drug-seeking weirdo. She even complimented me on my attitude. I am fiercely positive, but even I have bad days. I think when I told her I didn't want opids that made her happy. But it's true. I don't want them. I just want to get to a truly functioning state. I am tried of living my life on the red flashing bar.

This image works for more than just RA

So I am glad to start making more progress in my health. It's been really rough lately. Not sleeping enough, waking up and going to sleep in horrible pain. The list goes on. But I have shit to do. Awesome shit. Like going to horror cons and festivals. I am honored and blessed to be a part of so many awesome, creative things, but at the same time I always have a small part of me dread doing them because of the cost to my health. It's all so mentally and physically taxing all the time. And having a week of constant shit to do isn't good for me. I have to pace myself better.

Except I really cant.

Because when I do, I can't do all the things I want to do. I just cant.

And by the end of it, I am feeling like this:

And that fucking sucks. I love going to conventions. I love film festivals. I love all the wonderful, weird ass shit the horror world brings. That is my home. Those are my people. I love them all, even if each interaction takes another bit of my energy bar away.

So while I sometimes wonder what the fuck I think I am doing when I feel so shitty and horrible, I do have some great adventures. And because of that, I am still living life, despite half of it being ruled by pain.

Fuck you pain. I hugged Tony Todd, got choked out by Kane Hodder, hung out with the Living Dead crew, and watched an Alien and Predator rip each other's clothes off on stage. With face hugger pasties even!

My life is a magical fuck fest of weird.