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.