Sunday, April 17, 2011


I'm anxiously awaiting two important items to arrive by parcel post: my shipment of vitamins, and my ticket for the Pixies concert later this month. Since I have the patience and attention span of a coked-up lab monkey, it's a darn good thing that I can track the orders online. I have been assured that both the box of vitamins and the ticket are on the way. That gentle rap-tap-tapping you hear may be my fingertips drumming the desktop impatiently. Come on already.

Waiting. Going into week four of my mtx/prednisone cocktail, and crossing my fingers that I will begin to see some kind of lasting pain relief. RA makes each day another spin on the wheel of pain---where will it land today? Yesterday it was in my hands, wrists, elbows, and right hip. Today, it's the hip, elbows, and neck. And last night I couldn't sleep, my calves, feet, and toes twisted with spasms. I stumbled out of bed towards the coffee pot this morning exhausted, hoping for some cooperation from my body today. Just a few productive hours. There's phone calls to the insurance, housecleaning to be done, grocery shopping, errands. There's a life to be lived somewhere in here.
I've inherited my mother's habit of list making. I keep datebooks, index cards, and pocket-sized notepads of things that need attention, questions for the doctor, dates I need to request off work. Shopping lists, mix cd tracks, books to read, household parts and supplies. And then I find the lists crumpled among my piles of laundry. Some have items carefully struck to indicate that I've completed them, and others, entire lists I've forgotten. It is my way of mooring myself to real life and giving meaning to otherwise tedious minutia. On some level, my lists let me deny that I am anything but normal---"normal" people have priorities, therefore make plans. Sick people don't.

I struggle with the idea that one's priorities change. When I became ill, I was forced to fully inhabit my body, to become present in the moment. I was no longer able to deny or distract myself with plans and goals, with my lists of things to see, do, buy, or become. Pain and fatigue are so immediate, undeniable, that they demand your attention. RA fatigue is more than simply feeling tired: it is an exhaustion so deep and paralyzing, you feel as though every limb weighs a thousand pounds. My plans---to focus on my career in horticulture, to write, to make a name for myself as a designer, speaker, and educator---suddenly took a backseat. My body began to drive the bus. My priorities shifted to what I could do in the next few minutes or hours, what pain I could tolerate before my meds kicked in, and what I could accomplish while so exhausted I could barely move.

In the past year, I have managed to keep working part-time, navigate the state-assisted insurance system, and help keep our household going. But I've had to accept the fact that I cannot do what I was once able. I still struggle with this on a daily basis. The job is neither stimulating nor demanding, but on days when I've got a fever or a lot of swelling, it feels like running a marathon. I work my measly six hours and come home and sleep. My house is never quite clean enough, and I always see something that I'd like to do. I measure the amount of my expendable energy against those things: clean and dust the baseboards or take an NSAID and a nap? Call my mother or do a load of laundry? Load the dishwasher or color my hair? I operate now in small, manageable bursts of activity. Many tasks fall through the cracks and I feel frustrated. I can't scrub out the tub like I used to, because my hands can't hold the sponge right anymore. I have to settle for a little soap scum, gray hairs and roots showing, and dust in the corners. I have to settle for the fact that I may not have the fast-track career I once pursued---I may not even be able to weed my own garden, let alone maintain someone else's. I cannot make any plans beyond today because I don't know what to expect from this blasted disease. I must observe my body, respond to its needs, wait and see what comes next. 

And this is only the beginning. What happens when I start taking Biologics ? Will I feel better or worse? If I am able to do less than half of what I could eight months ago, where will I be in another eight months, two years, five years? I don't know. Doctors cannot predict the course of this disease. I don't know, and I have to accept this not knowing on a profound level, in my gut, in my heart. I've got my list of things to do, and I just strike those items one by one by one. I throw out one list and start another. My orbit gets smaller and smaller and I wobble with every circuit. I must simply wait and see.

My concert ticket arrived in the mail. Scratch that off the list.


  1. I really liked this! I am waiting for my diagnosis: Ra or lupus. It is starting to match more with RA. The fatigue keeps getting worse. Thanks to pred the pain is down. My orbit may not be as small as yours yet, but I understand. I have given up many things. I am going to write a list of what I gave up. Just as a psychological exercise. Thanks for sharing. I feel less alone.

  2. Thanks Jenn.
    I've developed a love/hate relationship with the prednisone; it definitely reduces the pain, but it's also apt to tear up my stomach, make my face break out, I'm constantly hungry, and have now added twelve pounds and one additional chin. I'm still taking less than the doctor prescribed, unless I have a bad flare---then I bump it up to her suggested dose. I suspect our orbits expand and contract according to our frame of mind...mine's not always terribly positive, but I figure it's part of the process for all of us.