Static

Things are really rough for me right now. My doctors have me tapering down off of steroids so they can see what symptoms all flare up exactly. They're hoping to figure out if I possibly have systemic vasculitis, and how to treat me well enough that I don't need steroids to function. While they're great for calming down a messed up immune system; steroids are really bad for you and come with a myriad of side effects such as thinning bones, muscle wasting, organ damage, and weight gain.

I dropped to 10mgs, my lowest tolerance on Monday, and by Wednesday I could feel everything start to flare up. My entire existence hurts. I emailed my doctor and let her know that things were flaring up already and she messaged me back that she put in a standing lab order to evaluate my inflammation markers that she'd like me to get done weekly before our Monday follow-ups on my taper. I got it done today in hopes that she'd have it in time for our appointment Monday morning. Within a few hours she emailed me, lab results were back already. My inflammation markers almost doubled within a few days. Higher than they've tested in months. I expressed that not only was I not kidding about feeling like shit already, but that I was quite serious about not being able to get under 10mgs of Prednisone. While she said she didn't doubt me (she yells at me for under exaggerating), having the frequent labs to track the process for Jefferson makes it even better.

The shitty part is, Monday I drop down to 7.5mgs, and the following Monday 5mgs, and the Monday after that 2.5 mgs which I'll be holding at.

Shit's just going to keep getting worse.

They're going to be working on figuring out how to fix it, but in the meantime I'm stuck suffering. It would be so easy to go in the kitchen, pop 50mgs of Prednisone, and raid the fridge. I'd start to feel better in a matter of hours.

Instead, I'm stuck barely being able to stand myself. My stomach's wrecked from my infusion on Wednesday. Everything hurts, my joints are stiff, my rash is coming back, I'm itchy, restless, grumpy, tired, and I can't sleep. And that's the short list.

Chris has been a prince and has really been helping me out. He played two games of Monopoly with me to try to take my mind off of it. I kicked his butt at both rounds. He made a comfy blankie fort in the TV room for me, and he's been cooking all the meals. He made an awesome spaghetti meal yesterday that I destroyed, and I'm usually not big on spaghetti. I generally find it boring, but it was the best thing ever. Today was sammiches and french fries. My grandmother's pitched in and has been doing the dishes to help out.

Self-care has to be my top priority right now or I'm going to go insane from how shitty I feel, but it's hard to do when you don't want to move. Thankfully Chris is great about getting me things, keeping me entertained, and being understanding.

I'm just really hoping that I don't struggle with this taper for weeks, and they aren't able to figure anything out and just try to dump me back on steroids again. I would be so upset.

These adorable bastards have been cuddling on my lap most of the day:

Tuxington has been super staticy lately. He's shocking everyone. I don't know why. It's weird.

My Pop's birthday is on Sunday. They're having a party for him. We weren't able to afford what we had wanted to do for him for his birthday this year with Chris being out of work and my meds being so expensive right now. So instead I'm doing a really cool picture collage of pics of him in a frame. I need to get it finished. Hopefully he'll like it.

Chris' Mom stopped in for a surprise visit today. She's back to work, and got a really cool promotion of sorts into their Starbucks department at Giant. She brought by some bacon cookies because they made her think of us. What a wonderful food item to remind people of you, hah! It was nice to see her! I looked like hell all considering, and was half asleep in pajamas, and bandages. Tuxington kept poking her and demanding pets.

I need to get down to the records department at the hospital and the social security office, but I just have no ambition. It's enough just to sit here and try to stand myself.

So here's to at least five more weeks of this. It's going to be a rough ride.