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.

Mother's Day Thoughts

Mother's day is coming up. Suffice it to say, I hate fucking family holidays. Mother's Day, Father's Day, Christmas, the list goes on. Halloween is one of the few holidays I do celebrate because no one, I mean no one, took it away from me. My mom used it as an excuse to kick us kids out so she could get high. Sometimes she even got into it and made us costumes. Those were rare, but beautiful times. The few moments I was allowed to be the child I was.

Mother's day is usually the worst for me. That and her death and birthdays. This year, I let her birthday just drift past me. By the time I remembered it, the day had passed. I had better things to do then think about someone who barely cared if I lived or died.

Mother's day is harder because people point it out. They post pictures of their mothers, they share happy stories about how wonderful it was to be raised by a woman who loved them. They are truly blessed. I have no such stories. I have pictures, but I don't want to look at them. They don't reflect the reality of what living with my mother was truly like. No one could possibly understand how good she was at lying. The pictures don't capture the pain and loneliness of living with an addict and abuser.

She was a narcissist, a drug addict, and a monster. She couldn't tell the truth to save her life. The part of her that still survived and saw what she had become is probably the same part that killed her. She had so much self loathing, she could fill an ocean with her tears. She was still human under the monster, and I sometimes wonder if that was the part that ended it all.

I'm not going to dwell too much on her on Mother's day. Not anymore. I am my own mother. Always have been. I comforted myself when things were hard. I cradled my inner child as she wept for her mother, wrapping her in the safety of my embrace. I raised myself, and my little sister. I signed my own permission forms, forging my mother's signature. Which isn't easy when your mother is an artist who writes in calligraphy. I stopped expecting her at my performances. I was in the choir and in musicals and I kept doing them for me. Not for her or anyone else. I don't need an applause to do something.

I am getting a tattoo on Sunday. From my sister of the heart. I told her I wanted a monster kid tattoo. Something that reflected what that means to me. I think it's the perfect thing to have tattooed on Mother's Day.

I am the mother of monsters. So Happy Mother's day self. Hope you have a great day Big Mama.

"Not only did I survive, I learned to Blossom."