I’ve let my blog go.
I almost wrote: I’ve let my body go.
Well, there’s that too.
The last swatch of time has been filled with other kinds of writing: since July I’ve been working fulltime, freelancing as an advertising copywriter, commuting for about three hours a day to get to the office. I’ve also been writing toward an October 1st deadline, working hard to get the first half of my novel-in-progress to my editor.
Oh, and I’ve been hunkered down on the parenting front. That too.
But October 1st has come and gone, and February 1st, when the second half of my book is due, is a post-holiday glimmer on the horizon, and the freelancing is a little less hectic, what with a big project launched (at least for this week), and though the parenting front will always be a place to hunker, it’s somewhat familiar . . . so why am I finding it so hard to engage with this other part of my writing life?
Burned out on words? Not so much.
More, there’s a little more space inside me, and nature loves a vacuum.
I’m thinking that’s why a fact that I’ve been shying away from or ignoring altogether these last few months is finally rattling around loud and clear, banging against my limits, demanding my attention.
Burned out? No. Burning.
For the first time in my life, I’m experiencing chronic pain.
It started last March when I suddenly had a hard time walking. It’s tendonitis, I thought, donning tennis shoes on a daily basis. Or: Oh, no! That bunion again. Guess I really do need the surgery. And finally, after the MRI, just before the surgery: Who knew I had an extra bone in my left foot? That must explain this bone-on-bone sensation.
Then my podiatrist, whose brisk—no, brusque—demeanor belies his gentle hands, sent me to a rheumatologist.
One blood test later the numbers revealed: I had—have, will have–rheumatoid arthritis, and the numbers registered on the aggressive end of the spectrum.
“Don’t go looking around too much on the Internet,” the rheumatologist said. “It’ll scare the hell out of you. Let’s just wait a little and see. Some people signify as having RA, and yet don’t manifest the symptoms. This pain might really just be tendon-related, and that’s all.”
I didn’t look around the Internet, but my husband did, and he said, “Don’t go looking around on the internet. Not just yet.”
We gave it six weeks. I went back and had another test. This one showed numbers just as high, and a lot of activity on the disease front. The pain in my feet and ankles was worse. And, oh, yeah, there was this bulging joint in my right thumb. The skin, inflamed there. Inflamed, on fire down to the bone.
“You’re manifesting,” the rheumatologist said.
And so began the ongoing discussion of treatment options, namely drugs.
This was in late July, maybe early August. At the time, I thought: I can do this without steroids. And you, dear doctor, may feel that chemotherapy-in-a-pill-for-RA is the way to go. But I don’t want my hair to fall out. I want to be able to have a glass of red wine without worrying quite so much about my liver.
My tune is changing.
I’m on Prednisone. Yesterday, when I saw my rheumatologist, she suggested that I adjust my one steroid pill to three, and without much more than batting an eye, I agreed. And while I started at single Sulfasalazine a day, and we thought we might able to keep it at two, we decided yesterday to up the dosage to six. (I know I should know the milligrams; I don’t. Like I said, I’ve been shying away.)
RA, I’m learning, now that I have begun to look around on the Internet, is a complex disease. Diagnosing it is one hard part. Prescribing the right medication is another. (There are two others drugs I can try after this one, and if those don’t work, I can see about some incredibly expensive injections, my rheumatologist says. Regardless, I’ll probably be on whatever works for the rest of my life.) And there’s managing the pain—the way it comes and goes, or doesn’t go, you never know. I guess that’s the hardest part of all.
Example: I used to love dancing, now I can’t imagine doing it. I used to wear red cowboy boots, now I can’t get them on my feet, let alone stand or dance in them. Walking isn’t so much fun anymore, and cross-country skiing, well, let’s just say I am starting to try and figure out other ways to enjoy winter.
The other night my son Teo said something to me that really gave me pause. He was waiting for me at the top of the three long flights of stairs that lead to his piano teacher’s otherwise inaccessible office. I had dropped him off at the front door, then parked the car, and now I was slowly, one inflexible foot in front of the other, making my way toward him. I had already done my commute, my walk to and from here and there in the city. I had made dinner and lunches for the next day. I had and had and had. Now as I mounted the last step and worked my way toward Teo, he asked me for a piece of gum. The flash of—what?—that I felt burned only a little less than my ankles and the joints just above my toes. I dug out the piece of gum.
Teo had his lesson, which I loved observing only a little less than usual at 7:30 on a Monday night because all I could think about was taking off my socks and shoes and putting up my feet. Preferably packed in ice.
Afterwards in the car on the way home in the dark, Teo said, “Mom, may I ask you something?” (He has been working on distinguishing his “cans” from his “mays,” thanks to his fifth grade teacher.)
“Sure,” I said.
“When I asked you for a piece of gum, you pursed your mouth. You’ve been doing that a lot lately. You look angry when you do that. Are you angry?”
It hit me then. I was angry. But not because Teo asked me for a piece of gum. I was angry because of what was happening to—in—my body, step by step by step.
Rheumatoid Arthritis is a long-term, progressive autoimmune disease. A body attacks its own joints and surrounding tissues. The disease can go into remission. There are things a body can do to manage it. But there it is.
Today I joined a RA-focused facebook group. I signed up for a related newsletter. I took my six of this and my three of that. I wrote this very long blog post.
I’ve not let my body go.