May 2, 2007 at 3:59 pm (Uncategorized)

Something strange has been taking place. I’ve been feeling sort of (dare I say it?) well. Or, more accurately, well-ish. Now that I’ve typed those four letters in black and white, I’m worried I’ve jinxed myself. But I can’t really erase the hopeful concept of w-e-l-l that has been brewing in my brain, no matter how many times I hit the backspace key on my keyboard.

It’s odd how much better a person feels when she stops ingesting toxic chemicals. Who would have guessed that once I did away with my weekly dose of a drug belonging to a class named, literally “cell killers,” I would perk up a bit? It makes me wonder if I might be cured altogether if I stopped mixing Formula 409 kitchen cleaner with my morning coffee. All irony aside, since my doctors have declared my methotrexate/Enbrel regime a “failure,” I’ve been ordered to desist with all sarcoidosis treatment (except lovely prednisone) until I begin my Remicade infusions next week. My joints are more swollen; my sarcoidosis rash has gotten worse, my heart is thumping away like conga drums at odd intervals, and my liver levels are reaching for the starts…but, I feel well-ish.

I felt so well-ish, in fact, that I spent what would have once been a normal weekend with my husband, Jay, and my three-year-old son, Andrew. Typically I am so thoroughly exhausted by the process of being functional-ish during the week, that by the time Saturday rolls around, it hurts for me to move my feet in bed. So, Jay gets “Andrew duty,” while I remain under the covers, trying to find energy in fitful naps. The house is quiet – almost too quiet to sleep – since Jay and Andrew are usually off bicycling, hiking, skiing, swimming, at the library, or just outside.

Part of living in chronic town (living with an ongoing, serious medical condition) means talking with yourself. And, no, I don’t mean a self-dialogue of madness brought on by illness, though I have often felt on the brink of that sort of babbling too. For me, this more sane-ish talking to myself involves giving myself repetitive pep talks, along the lines of, “It’s better to miss a Saturday of fun with my son, if the rest I’m getting will allow me to be heathier for the next week, month, year, decade…” or “It’s really OK that I’m ingesting poison every week because ultimately this poison will not only make me vomit and lose some of my hair, but will also kill my disease” or “It’s not a big deal my doctors are calling my response to a new drug a failure. They don’t mean this personally, and it doesn’t mean I won’t succeed on my next treatment.” or “It’s fine that I’ve gained so much weight on prednisone. It’s better to be hefty than to keel over from cardiac sarcoidosis.”

On the weekends when Jay and Andrew were doing something I particularly enjoyed in my pre-sarcoidosis life, I would ramp up the amount and intensity of these silent pep talks. Saturdays were especially dreadful for me when Andrew was learning a new activity without me by his side, or when he would return from a hike with his Daddy smelling of pine needles, sunshine, and mountain air. The absolute worst was the Saturday that Andrew went downhill skiing for the first time – without me. I stayed in bed, with crippling joint pain, waves of methotrexate-induced nausea, and a bad-ass case of self pity. Even a full-fledged lecture to myself didn’t improve my attitude.

But this weekend, I could silence the voices in my head because I was actually out there with them, instead of laying a-bed, angling for a positive spin on a crappy situation. On Saturday, we rode our bikes to the season’s opening farmer’s market. Jay towed Andrew in the bike trailer, and with the seventy-odd pounds the trailer, the kid, and the farmer’s market chickens and potatoes added to his bike, I figured we were fairly well-balanced, given my prednisone weight gain. Later that day we went swimming, and the next morning, we went for a long hike, during which Andrew hopped out of the pack on his father’s back and hiked a couple of miles on his own short legs. The sun was shining; the breeze was light. Although the hills we hiked were just beginning to turn green and send out the first inquiring wild flowers of spring, the surrounding mountains were still majestically snow-capped. We are fortunate to live in a place of such stunning physical beauty, and I actually started to cry because it had been so long since I had been outside, noticing the world around me.

I cried for other reasons, too. Several times, during each of these special weekend days, Andrew went out of his way to gently pat me, or kiss me, and tell me how much he liked having me along. Jay says he has always talked to Andrew about how “Mommy hikes too” and “when Mommy is done being sick, it will be a lot more fun to go hiking with Mommy.” Apparently, Jay’s message had sunk in because Andrew was thrilled to have me along with them. My little guy wanted to keep me in his sight when we were biking, swimming, and walking. It was like he didn’t quite believe I wouldn’t just vanish mid-pedal stroke. Witnessing his delight in my presence made me realize – in a visceral way – that I wasn’t the only person who had been sad and sighing on the weekends when I was stuck in bed. I learned anew that you move your whole family to chronic town when the disease comes a-knocking. Just because I was by myself in bed on countless Saturdays, babbling truisms and trite-isms to myself, didn’t mean that my toddler and his handsome father weren’t dealing with voices in their own heads, feeling alone-ish and sad-ish and distinctly unwell-ish without me.

I hope the Remicade works. I am heartened to learn that my doctors will be giving me such a high dose of it that I won’t need to take the dreaded methotrexate along with it, as I did with the Enbrel. I hope the Remicade gives me the energy and the ability to bike to the ends of the earth with my boys, to hike up the hills and share Andrew’s wonder at the mountains vying with the sky. I hope not to be merely well-ish, but well. But I am quite content with being well-ish, even with being only sometimes well-ish. There’s a lot of world to show my son and share with my son when I’m out of bed and in the land of well-ish.


  1. Paul said,

    Good luck Rebecca

  2. Melliss said,

    What great news. I hope that you have more and more days like this to enjoy with your family.

  3. Margo said,

    Never give up, the human spirit and body are incredibly resilient when faced with adversity. I’ve just begun my own odyssey into the trials of MTX for R.A. so I do sympathize tremendously with you.

  4. Rosalind Joffe said,

    Oh, Rebecca, I understand so well that it brought tears to my eyes. Before our girls were born, my husband and I learned to ski because it was something I could do, even with numb feet from MS. And we did it as a family (when I couldn’t do things like play ball with them or even take them to a park) and the girls love seeing active (if bad skier) Mom – until ulcerative colitis left me too ill and unstable to do even that anymore. Those years were filled with disappointments — for all of us. I always tried to normalize this weird life I led — for them and me. And, now, that the uc is “cured”(no more colon) and the MS is in remission – I’m left with disabilities but not as disabled. And, I think about the possibilities of grandchildren and what I hope I can do with them. Keep writing and live with hope — that this won’t always be what it is today — and that you’ll go on being able to cope with what comes up. Warmly, Rosalind

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