Don't Let's Call It a Diet, I Sing the Body Electric, Rheumatoid Arthritis, Roomy Toe Boxes, The Inner Landscape

“Martha posted Desire on Typepad”

I've linked my Facebook account to my blog, and when I post here, a little note appears on my Facebook Wall. After my last post, it skipped part of the title and announced, "Martha posted Desire on Typepad."

And it occurs to me that I gave a pretty contained review of a book that in fact roiled me.

I can relate to Susan Cheever's desire, in my own way.

I'm not a drinker, although I've been known to enjoy an anniversary Cosmopolitan or a few glasses of champagne at the Big Event. But when the rheumatologist informed me that my RA medication would not go well with alcohol, I didn't have a problem with the news.

I'm definitely not a gambler. Okay, I gambled once, when Pure Luck and I spent 24 hours in Las Vegas. He gave me a roll of quarters and I promptly lost it in the slot machines. He was more successful. When the last quarter went in, he kept his winnings and walked away with $14.

My experience with any sort of illegal substances is limited to one substance, one time, and I think that makes me pretty innocent for someone my age.

You and I know where my weakness lies. When I feel that sort of empty that has nothing to do with being hungry, I eat. Reading the addiction book opens up concerns I've had throughout the weight loss process. Weight Watchers roots its plans in a moderation approach. I've written before about my own resistance to abstinence. Cheever quotes someone who says abstinence for food addicts is like taking the tiger out of the cage three times a day. You cannot give food up completely.

I've written about how abstinence terrifies me:

Probably other times, too. I think it's possible that a person who thinks about it as much as I have may need to consider it. It might turn out to be simpler than trying to figure out some way to snack without going overboard.

"Martha posted Desire on Typepad."

Over the last year, more and more people who know me in real life, and through church, read my blog, and as I look back over the old posts from Set Free about taking better care of myself, I realize I wrote more emotionally, more openly. That stopped when I became ill last spring, so that ironically my effort to get out of the birdcage and begin something new led to very careful management of how I communicated my feelings. I didn't do it to protect my readers. I sheltered myself.

It's difficult to be clear about your feelings when you cushion them in bubble wrap, whether that means the shielding of sadness or the padding of pudding. Rheumatoid Arthritis appeared to have dashed my desires of a year ago like a piece of china flung to the floor.

Some of those inclinations and wishes seem funny now. I'll never wear high heels again, but how often had I worn them anyway? I actually like a lot of the shoes with Roomy Toe Boxes.

Others feel like a real loss. It's hard to imagine ever having the energy to hike a whole mountain again; when I think of my feeling of accomplishment and joy to be able to do that in the fall of 2007, and how I assumed there would be plenty more of it to come–well, I guess it's understandable I grieved.

Or that I feel aggrieved.

But as Snowman likes to say, "I don't want to be that guy." Or that bird. I want to be the one who figures out how to live in the new situation and makes the best of it. So perhaps that sometimes makes me too eager to skip a step, or too hard on myself for having gone through a phase in which I resorted to familiar coping techniques.

However.

I know from experience that getting clean around food, whether you follow a plan of moderation or abstinence, opens up caves I would prefer to remain sealed. I know it. My fear of RA-related deformities ties right into my fear of abandonment, with a special twist of "my mother didn't like to see people who looked different in any way."

She didn't like to see me look fat, either.

"Martha posted Desire on Typepad."

What I desired a year ago seems pretty innocent and wholesome for the most part: to keep losing weight until I reached my goal, to wear clothes that looked flattering, to hike with my husband, to feel alive, to do my work well, to support and enjoy my children. I still have all those desires.

I guess this bird's work in 2009 will be figuring out whether RA will really prevent any of those, or whether it's my feelings about RA creating the barrier.

I Sing the Body Electric, Ministry, Mothering, Rheumatoid Arthritis, Roomy Toe Boxes

Idle Hands

Last year, on January 1, 2008, I wrote:

This year, I hope to find more time to simply be where I am, to listen
to what is around me, to let my hands be, at least for short periods,
idle, and my heart open to what comes next.

I got my hope, in a way I never expected. Because I could not use them, I sat with my hands in my lap. I felt, and could not avoid feeling it, disappointment and sadness. I saw my efforts at self-care in terms of diet and exercise supplanted by medication and side effects.

I grieved.

In the midst of it, I got up every day and went to work. I wrote sermons. I wrote things other than sermons. I visited parishioners. I ran and attended meetings, meetings, meetings. I read books and I read scripture. I slept more than I have in years, even naps.

I managed to knit, but much less than I would have liked.

I learned to live with pain, and I learned to ask for help when I really needed it, even if I didn’t want to ask.

I learned to trust the people I love to love me in return even when I couldn’t do all the things for them I wanted to, and even when I tried to do those things and failed. I believed in their love, mostly.

After a tough spring and summer, I looked up one day in the fall and realized that although I face challenges related to RA, I’m not unhappy. I’m not unhappy.

I hope to feel better in 2009. I hope to feel well enough to return to my “Don’t Let’s Call It a Diet” self-care, alongside my “Wish I Didn’t Have to Wear Shoes With Roomy Toe Boxes” self-care. I hope to move on to the next ministry job, whatever it might be and whenever it might happen, with energy and enthusiasm

(And I hope whoever is in charge of the hopes I express here is reading the “feel well enough” part.)

Rheumatoid Arthritis, Roomy Toe Boxes, The Inner Landscape

A Watched Pot

Carrots
On my stove, carrots cook in the steamer. I find I am watchful. The last time I tried steaming a whole bag of carrots, I grew bored with waiting, wandered off, and burned off all the water. We're still scraping black off the bottom of the pan.

But a watched pot, so they say, never boils.

I'm watching my hands today, too. Since the removal of prednisone from my medications, my fingers have been swollen, my wrists tender. My toes feel swollen, too, though they are less on my mind for being covered by shoes or socks or slippers.

At the end of last week, the doctor instructed me to boost the weekly dose of methotrexate from 17.5 mg (7 teeny little pills) to 20 mg (yes, 8, you must be really good at math!). This afternoon I realized I didn't ask the most important question: how long will it take to notice a difference? After all, it took a long time for the initial dose to make a significant change and, really, because I took it with pred, I really have NO idea how quickly it worked. I know I feel better than I did before the pred, dramatically better. I know I maintained most of that "better" even as we decreased it.

I also realize I didn't think to ask whether I should look for an increase in side effects.

I didn't think of much of anything except to write down the instructions.

So now I'm watching my symptoms and my side effects. I am a watched pot.

There are many other things I could be doing, and really, I am doing many of them, with the watching as a background activity in my multi-tasking. I can't help noticing when my hands don't work well, or my wrists hurt. I can't help making a note that my new shoes feel good and do not squeeze my toes. I can't help feeling the stiffness in my knees and trying to measure whether they have felt this way all along, ever since the pain stopped stabbing.

I consider that with a chronic illness I'll probably be watching myself, like a pot, for the rest of my life, trying to avoid boiling over.

This wasn't what I had in mind.

Depression, Grief, Prayer, Rheumatoid Arthritis, Roomy Toe Boxes

Acceptance

The stages of grief, as described by Elizabeth Kübler-Ross are:

  1. Denial:
    • Example – “I feel fine.”; “This can’t be happening.”‘Not to me!”
  2. Anger:
    • Example – “Why me? It’s not fair!” “NO! NO! How can you accept this!”
  3. Bargaining:
    • Example – “Just let me live to see my children graduate.”; “I’ll do anything, can’t you stretch it out? A few more years.”
  4. Depression:
    • Example – “I’m so sad, why bother with anything?”; “I’m going to die . . . What’s the point?”
  5. Acceptance:
    • Example – “It’s going to be OK.”; “I can’t fight it, I may as well prepare for it.”

On sunny afternoons and rainy mornings, on walks with the dogs and alone
in the midst of dark nights, I have worked my way through the first four stages of grief since the first symptoms of Rheumatoid Arthritis began hampering me in March. It’s hard to believe you can be in denial when your knees and shoulders feel approximately as if sharp knives are being driven into them, but some of us are more stubborn than others.

There has been anger (mostly turned inward, because that’s my favorite flavor) and bargaining (sure, I can still do a new church start, after all you set your own schedule!), and a whopping portion of depression that we just won’t talk about, if you don’t mind.

In many ways, today, the first day since May that I am flying without the oxygen mask of prednisone, is the first day of the rest of my life. I woke up realizing that unless I am one of the lucky ones who experiences a remission via medication or inexplicable good fortune, I’m likely to spend some time every day of my forever recognizing and adjusting to my symptoms.

Welcome to chronic illness.

Over the weekend I received the gift of a long conversation with a church member who lives with RA, whose illness has been both acute and chronic since her 20s. I heard her reassurances that with all the new medications, my story WILL NOT be like hers. I listened to her urging that I take all the medical profession can make available and also heard her testimony that certain things, diet and exercise in particular, matter a lot, but will not be of great interest to doctors.

We talked about our feet, and what kind of shoes we can and cannot wear.

Roomy toe box shoes
And I believe that’s when I made the move. I began to recognize what sort of practical, long-term adaptations will be required of me (barring the possibilities of luck), and I Googled a few things, and found a blog that reviews shoes with appropriate support and roomy toe boxes, among other things, and I saw footwear that was not up to Peace Bang’s standards, but that I thought could be cute on my relatively small feet.

I’m grateful to the people who have been praying for me over the past six months. I hope they will keep praying for me. Having direct conversation with God about this new development in my life has been difficult. If you’re in Denial, you’re not talking about it. If you’re angry, well, I’m far too gently raised to get angry with God, despite advice in the past that God is big enough to take it. Bargaining meant trying to work it out for myself moreso than taking it to the Deity, though I found one brief shining moment of comfort in that phase.

Really, I had to get to Depression before I felt able to pray much, and at that point, I felt too miserable to be articulate. Coming from a tradition that eschews pre-programmed prayers, I had few resources. My mother loved the Unity Church’s prayer, “God is my help in every need…” It carried her through illness. But I found myself awake in the night summoning up the words of the Serenity Prayer. As an OA dropout I never learned it, really. But it’s out there in the ether, and in the dark of one of my worst nights, I prayed those words.

God grant me the serenity to accept the things I cannot change,
courage to change the things I can,
and the wisdom to know the difference.

The night I murmured these words over and over marked the first peek around the corner to Acceptance. And looking at shoes feels like taking the first step into that new and unknown Land of Roomy Toe Boxes.