Wednesday, April 6, 2011


RA is still a mystery to me. No matter how much reading and research I do, or how many questions I ask the rheumatologist, I never quite know what to expect. And in my body, the disease doesn't always act the way that the texts describe it. Symmetrical pattern of joint pain? Sometimes both hands, wrists, knees, hips, or feet. Often it seems to appear in my neck, or one shoulder, and moves in and out of my hands and feet. Low grade fever accompanies joint pain? Occasionally. Then again, the fevers can appear out of thin air without significant pain. Difficulty sleeping due to pain? Yes, that happens from time to time. Just as often, I can fall asleep easily on the couch while watching evening television. Morning stiffness and difficulty moving---also pretty typical. Only mine doesn't go away for at least four hours. Exercise is supposed to help. Sometimes I can dance through an hour-long fitness class. Some days at work I can barely walk from one end of the shop to the other, lift a potted plant, or turn a handle to open a faucet. I can only chalk this up to my dislike of rules, regulations, and my general disdain for being told what to do. Of course my RA is going to be a radical left-wing, borderline anarchist variety. My disease does not act like the textbooks predict that it will

Right now, I'm struggling to manage the basics---my prednisone and mtx. As my rheumatologist calls them, the "frontline" medications for severe rheumatoid arthritis. This stuff regularly kicks the crap out me, both body and mind. The fatigue, the stomach complaints, dizziness, headaches, muscle pain. The horrible metallic taste in my mouth. An overall feeling of malaise, like you have the worst case of the flu you've ever had in your life. It's no freaking wonder I'm having a tough time focusing, with all of this stuff going on. For example, I'm trying to shower and dress to go to work in the morning. I've taken my meds, had coffee and perhaps a little something to eat. I'm thinking jeez, I'm a little nauseous. I sure would like to sit down for a minute, but I can't or I'll be late. A little dizzy too...I hate taking a shower when I'm lightheaded, I'm afraid I will fall down. Maybe if I move really slowly, I won't feel so sick. I don't sit down and instead force myself to pull it together and dress, put on makeup and do my hair. I always make it to work, hopefully with a few minutes to spare. I never, ever call in sick.

If I'm sick, I don't get paid.

Which means I have to pull money from somewhere else to pay for prescriptions, copays, groceries, and all the other stuff it takes to run a household. There's very little room for error or reallocation. So I just don't get sick, although I am. All the time now. Of course, I don't mention this to my employer. I don't want to be one of those "problem" employees---viewed by management as unreliable or even worse "a weak link". I spend my working life trying to keep my illness as hidden as possible, and make every effort to appear normal. It's always funny how people will ask what I did over the weekend and these days, my best response is "nothing special". How can I possibly tell them I spent most of it sleeping or trying to accomplish simple tasks like shopping, laundry, or changing the cat boxes? How could I make them understand how exhausted I am by
performing such ordinary, everyday things? What on earth would they think?

Funny. A year ago, I had big plans. My career was finally moving ahead, after so many false starts and stalls. I was dedicated, ambitious, and driven. I was in charge of my own destiny. Today, my body dictates to me what I will be able to do. Strength, endurance, and ability are determined on a microscopic level of blood cells and synovium. RA is like being given the ultimate time-out. The coach pulls you out of a playoff game and benches you indefinitely. You might play again...or you might not. So you watch from the sidelines, loving the damn game and feeling your muscles flex in anticipation of every move. You love the game and you want so badly to play, but you stand and your knees give way, your head spins, the legs don't work and the arms feel like they weigh a thousand pounds each. It's a humbling experience to be forced to accept the fact that for the forseeable future, you are in fact, on the injured list.

And you realize that the game itself has changed. It's no longer about competition, recognition, or achievement, but about survival on the most basic level. Every choice you make affects each subsequent choice. If I don't go to bed early, I may struggle to get through the day tomorrow. If I don't take my pills before mid-afternoon, I may not be able to sleep. If I don't write myself a note, I may forget to carry my meds with me to work, which will force me to take them too late. The game has changed. I don't yet understand all of the damn rules. Doctors can tell you about medications, the course of this disease, side effects and complications. They can't tell you how to learn to manage your life in a totally different way than you have before. I guess I'll learn that as I go along. Good lord, I hope so.

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