I failed to properly taper from my ‘roids. Something isn’t right.
My skull contains a combustible engine that is sending sparks through every nerve in my body. That is where I am right now. That is where these words come form.
I am learning to distinguish the flares from the dark periods, learning how to accept these challenges as new cycles to track and learn from.
And breathing, it is an act. Breathing is something I must rehearse, so that i may perform without the interference of tears and snot.That’s how I was before I was put on Prednisone the Wonderdrug for lung inflammation as a result of my disease. And that’s how I am now that corticosteroids are shooting away from my system, rocketspeed.
When you toss Prednisone into an overactive immune system, that system slows down. It’s a beautiful thing.This week, I enjoyed five days of fever-free, no-rash, mildly-energetic livin’ with pain so low that it didn’t matter that the Ibuprofen’s always hiding.
It was so beautiful that I thanked my doctor for Fixing me. She was wearing yoga pants because it was a Saturday and she practices integrated medicine. “So can I just take this forever?” I asked.
I learned that Prednisone has its share of side-effects. What I read most often is of a phenomenon called “Moon Face,” which appears to be a reference to weight gain (or redistribution?) that is especially prominent in the face. Leave it to the medical industry to use a historically feminine symbol (the moon) as a metaphor for fatness-as-ugliness. Especially in reference to a drug often used to treat autoimmune diseases — 75% of people with autoimmune diseases are women.
Coincidentally, autoimmune diseases are constantly “up for debate” and considered “laziness” by people who know nothing about them, despite western medicine’s confirmation that they are not only real, but lethal. Most people who try to debate the science of systemic autoimmune diseases like lupus are men without any medical knowledge, or people who learned about lupus from men without medical knowledge.
But I don’t want to think about that right now. I just want to think about those magical five days before it was time to stop this flare-suppresion. I stepped through a portal, spent five days inside a Lisa Frank folder, riding dolphins with glittering flowers in my hair. I want to remember these Prednisone days for being the first five days in a row that I’ve spent feeling comfortable in my body in over a year. In fact, I hardly thought about my body at all.
I have Systemic Lupus Erythematosus, or “Lupus.” I am learning how to talk about it. My grandmother also had it, but she didn’t really talk about it. My grandmother, she fucking loved the sun. One day the doctor said “No More.” I, too, love the sun. I, too, must hide from its power more often than soak in its glow. I wonder if Grandma took Prednisone. I wonder if it made her feel like a showgirl.
When I think about how Prednisone seemed to sweep away the worst aspects of this disease, I cry for missed time. For all of the canceled plans, the loss of friends who thought I didn’t care. For when I was to exhausted to use my voice or form cohesive thoughts, I was hurting those I care about most. I lost them, they are gone. I was only half-honest, and that’s because I have PTSD that affects my ability to “perform” in the world quite a bit. When I feel physical pain or symptoms I don’t understand, they become lost in emotion. I often (mistakenly) feel that my emotions are the world’s biggest everything. The crippling fatigue, the psoriatic flares, the periodic bouts of pain… sometimes I am able to just hide it all behind a fog of insanity and neurological whateverthefuck. I haven’t shown up, I haven’t understood why. And now I do, and I curse the times I cried in bed instead of showing up for those who needed me.
I could abuse that pill, that Prednisone, the way I have abused others. Like any other drug I’ve used, Prednisone made me forget all that ailed me. It doesn’t make me high, it doesn’t feel “abuse-able.” But if it makes me feel so good, it feels fair that I should be allowed to have it.
I feel afraid, and I feel like I shouldn’t talk about this as much as I think about it. My feet are up against the wall, they are filled with oceans. My face is the core of the earth. I buckle, I am sorry for myself. For trauma, and now for illness. This drug, this drug that doesn’t even get me high, gave me a glimpse of glitter in the dark. This is hard (and clearly bringing up a ton of internalized ableism) but I need all the glitter in the world to get through this.