How do you know when your RA is out of control? Where do you draw the line between what is “normal” for someone with a chronic, progressive inflammatory (read: painful) disease and what requires intervention? Is it personal tolerance to the current existing pain? Is it the emotions towards current existing pain? Is it the number of flare-ups in a week? A month? Or is it the amount of pain pills required to manage current lifestyle?
At what point am I kidding myself trying to live like a person without RA? At what point do I get fed up and call my doctor?
How much pain is ACCEPTABLE?
A couple months ago I did a Vectra test.* If you’re unaware, a Vectra measures RA disease activity using 12 biomarkers that are linked with inflammation and scores it between 1 and 100.
When I took Vectra, I knew I wasn’t doing well, but I didn’t actually expect my Vectra score to be that high. My pain had been increasingly unbearable with Tylenol, my ability to fall asleep and stay asleep had become hit-or-miss, and getting out of bed in the morning due to the morning stiffness was becoming slow again and very painful.
But even that wasn’t enough to shake me into calling my doctor and requesting some of the more serious drugs like methotrexate or prednisone. These symptoms joint pain, stiffness, swollen “frozen” joints, fatigue, etc. are ones I’d come to accept given my RA diagnosis. I know I have to live with some level of pain given I’ve had RA for 22 years now. Surprisingly, my ability to tolerate pain has increased over the years, even as my emotions towards my pain has waxed and waned. All these things, I don’t count on to tell me whether my RA is under control or not. And it wasn’t until yesterday, while answering interview questions, that I realized it’s a lot simpler to me than that.
“How do you know when your RA is not under control?”
When my pain affects my ability to take care of me. I’m not shooting for the stars here. Call me stubborn, but pain isn’t enough for me to say my RA is out of control. I know that having RA means bad days and I know it means giving up road trips and hours walking at the zoo. That’s what annual passes are for, so I can enjoy the zoo in short bursts and not get down on myself for not being able to do it all in one day. It is also why I choose not to trust my emotions and why I won’t change treatments just because I feel angry or frustrated at my pain.
I know my RA is out of control when I’m choosing leggings over pants with a button and a zipper. When I’m sitting down to brush my teeth because my knees hurt too much to stand in front of the sink for two minutes and when I haven’t brushed my hair in days because my fingers are too swollen to wrap around a brush handle.
Even then, my knee-jerk reaction is to assume I can deal with the symptoms, out of sheer willpower. It isn’t easy to switch biologics and every time it’s an emotional blow because I want the meds to work so badly, even when my body is clearly telling me, “NO.” It’s times like these I’m grateful to have a Vectra score not only to back me up, but to also kick me in the butt when I’m in denial about my fifth biologic.
As easy as it is to get frustrated with this disease and feel desperate for relief, the motivation to continue fighting against progression or stagnation is somehow equally difficult. I don’t have all the answers. I do believe the decision to change meds has to be a personal one, but I am grateful to have tools like Vectra to help me make that decision.
As for me, I’m pressing on for now, even with my high disease activity and even as I slowly deteriorate for the comfort of knowing I gave my fifth biologic a fighting chance against my immune system.
*Post contains affiliate links. Views are my own and not a reflection of Crescendo Bioscience, Inc. or it’s parent company, Myriad Genetics. This post is not an advertisement and reflects my personal journey and the benefit I’ve had from taking a Vectra test.