I’m going to be honest. When I was first diagnosed the first thought that came to my head was “I wonder if I can go on part time at work”. Nothing important like “how will this affect my future?” or “will I always have this pain?”
No, I was selfish. My job had already become so demanding, I was so exhausted after every day, my joints were so stiff each night (the irony of course being that this was a result of the RA not just the job).
I didn’t ask my new Rheumatologist the right questions. And I didn’t question his decision to put me on steroids. Back then I lived in the moment, in the now.
“Steroids will take the pain away right now? Sure let’s do it!”
Not “what are the long term side effects of this drug?” or “how long will I live with this disease?”
Honestly, I don’t think it even occurred to me that it was a disease. I was just like every other uninformed and uneducated new patient out there.
Two years later I look into the mirror and hardly recognise the person starting back at me. Informed? Yes. Educated? Yes. Woman that I was fourteen months ago? Mentally, no. Weight, definitely no.
I taste bile at the back of my throat when I remember how I laughed on the inside when my doctor warned me about gaining weight from steroids. It had never happened to me when that was a possibility before. I hadn’t gained any weight when I was on the birth control injection for five years even though it had affected most of my friends. Seventy pounds later and I’m not laughing. This face is not my own. “Moon face” is what the internet calls it, or rather what it’s come to be referred to as. My Rheumatologist says it’s “cushingoid”, which really isn’t better. What do I care if it has a scientific name? Doesn’t change the fact that I look like I permanently have an allergic reaction and a double chin. And if he pinches my face one more time in reference to it he and I will have more than words.
So, yeah, maybe I didn’t take it so seriously in the beginning. Maybe I was under the delusion that one day I would wake up and this nightmare would be over and my life would go back to normal. I could get out of bed without feeling every bone in my feet cry in pain. I could take a shower without feeling the daily frustration that my hands are too weak to squeeze the shampoo out. To not have to call someone into the room to help me do the clasp on my bra because not only can I not pull the ends behind my back, but also can’t grip my fingers together to clip it.
I didn’t know it was going to be like this. How could anyone know? I still haven’t found a good copy of How To Deal With Chronic Rheumatoid Arthritis And Still Live A Normal Life. I’d write it myself but I’m too damn exhausted. Plus I don’t really know how well I’m dealing.
I didn’t know what to ask. I didn’t know how to feel. I didn’t know anything. Mostly because I didn’t want to know.
Now my head is out of the sand. I’ve come a long, long way since that first day. But that’s not really anything to feel good about. Woohoo, I know tons about a disease that is slowly killing me! Champagne anyone?
Well, no, none for me. I can’t drink on these medications. I’ll take a cure if you’re serving those instead?