By June 2 the disease was affecting every part of my life. My methotrexate had been increased, but I was only getting worse. I started another prednisone taper and, as the dosage decreased, the pain increased and became constant. On June 22, my doctor started the preauthorization for a biologic, and put me back on prednisone.
When the Flare Hits
When the knee flare first starts it feels like I’m out of joint slightly, there is mild pain and some pressure. Then as it progresses, the pain becomes constant and it’s as if my knee is broken—it won’t bend correctly, there is lots of pressure in the wrong directions, it feels like it’s constantly being twisted the wrong way. Then, when the flare is full on, it feels like my knee is being sawed through very slowly, the saw never finishing the job but just going back and forth, ripping out bits of me.
Now add my other knee, an ankle, a few toes, both elbows, a shoulder, a hip, both wrists, both thumbs, and most of my fingers. All these parts of me are being attacked by an invisible saw.
Then add the tiny joint in my vocal cords, so even as I cry out because I can’t move and the pain is so bad and I need help. My voice is too hoarse and fails, so I just wait—minutes seem like hours—until my wonderful husband, Bob, checks on me again.
He gives me another pain pill, but it can’t touch this pain, and I’m already over the maximum dose. I desperately want to blow my nose because I’ve been crying, but I can’t move my arms, so Bob has to hold a tissue for me; it’s clumsy and I get goo all over my face, and I just want to die. I’m thirsty, but I’m afraid if I drink I’ll have to use the bathroom, so I don’t. The night stretches ahead, and Bob finally falls asleep nearby, my beacon of light in an ocean of pain.
I feel that if I could just shift my body slightly on the bed I would feel a little relief. Even though I know it won’t work, my mind torments me, sure that if I could just lie a little more on one side I would feel less pain. Finally I try to move, just to roll onto my side, but I can’t, and after several attempts I am exhausted and give up. I wake up Bob and he moves me and props up my pillows, but just a few seconds on my side and my shoulder makes me start screaming in pain. Bob puts me back and I try to stay quiet because I know how badly he is feeling for me and how tired he is. There are still several hours to go before dawn comes and we can leave for the doctor’s office.
People who don’t have RA say it causes stiffness and pain. Those words seem awfully benign compared to what really happens.
My nose itches but I can’t scratch it. The feeling of helplessness becomes so overwhelming that I start to weep and Bob has to come to the rescue because I start choking on my own tears. He props me up some more and talks to me quietly until I calm down. I make him promise me that if the new drug doesn’t work, he will let me go. He gets upset and tells me the drug will work, but I have to know that he won’t hold me here if my body stays this way and nothing works. Then I laugh and tell him that there’s not much to worry about when I can’t even blow my own nose.
