An Exercise in Optimism

This weekend I got in a bit of a snit. If I'm going to hurt all the time, I thought, I might as well get something accomplished. Basically, it was a tantrum. So I decided to finish putting in my vegetable plot. It's only 4 by 16 feet, but this season small is good. Last season I had pain and devastating fatigue, but no diagnosis. The garden went neglected. This year, I have pain and slightly less devastating fatigue. But I also have a diagnosis, some helpful tools, and Vicodin. What more does a gardener need?

I'm titling this post "An Exercise in Optimism" because with the disease I never know week to week, day to day, or sometimes hour to hour, exactly what my body will let me accomplish. The garden I plant today my languish untended tomorrow depending on what the disease does. Lately I'm thinking that optimism really should have a verb form. So often optimism is an action, not a feeling.

Currently my biggest challenge is the sacroiliac joint--where my hips attach to my spine. (This is why the rheumatologist is keeping the psoriatic arthritis diagnosis on the table. The S-I joint is a common site for this particular autoimmune arthritis.) So bending, squatting, and getting up and down can be a challenge. Luckily, the involvement in my hands and knees is still mild, so for now I can get by in the garden using my kneeler. It has handles I can use to lever myself up, and because the kneeling platform is a couple of inches off the ground I can use it even in heavily planted beds without crushing everything. Best of all, when you flip it over, it becomes a bench. Nice!

Isn't it great? And so Episcopalian.

And that nifty tool you see on it. The best weeding tool I've found so far. Weed fork and trowel combined. A serrated edge for sawing through little roots or cutting off baby weeds below the surface. A nice thick grip that's easy on the finger joints, and that little curvy part that keeps it from slipping when you push it into the soil.

Of course, these accommodations don't change the fact that everything is different. Methotrexate makes you sun-sensitive, so sunscreen is now a must, not an option. I've never been able to do anything--gardening, painting, cooking--without ending up covered in whatever medium I'm using. So now I'm not just dirty after gardening--I'm greasy and dirty. But the biggest change is my sense of productivity.

Just about everything takes longer when you have arthritis, and gardening is no exception. Add to that a dramatic decrease in stamina and the limitations imposed by pain, and projects that used to take a few hours can take days or more. By working slowly and carefully, I planted my beans, set out my tomatoes, and replanted the spots where the early crops failed to sprout. But I still struggle with intense frustration over how little I accomplish. Then the grief reprises. Then the guilt--because I took the "old me" for granted, and because I'm such a whiner when other people are worse off than I.

The only antidote to this mental masochism seems to intentional gratitude--a truly challenging discipline for a Type-A like me who still doesn't want to admit that everything has changed. It's a bit easier to be grateful when I read my blog-land friends who have more advanced or more intense forms of arthritis and have long ago had to entirely give up activities they love. Even so, it's mechanical, the way I give thanks, but maybe God still honors that. Lately, I'm determined to give thanks especially for the moments that can drive me to tears--the moments spent lying in bed and slowly moving each part of my body so that I can get up, or the moments awake in the wee hours (in the spare room so I don't wake hubby) waiting for the clock to tell me it's OK to take another Vicodin. It's my hope that this "unconditional gratitude" will begin to work in me what St. Benedict called "conversion of life"--the transformation of my deepest self into more of God's vision for me.

So did I pay for my exercise in optimism? Well, yes, I did. The woman who used to work 8 hours a day in the garden has gone off somewhere, replaced by a woman who struggles with stairs after a two-hour stint among the tomatoes and peas. On Monday, the physical therapy aide reminded me to "work to fatigue, not to pain." But this athletic young man also assured me it takes time to make the adjustment. The gentleness of his voice said, forgive yourself, be kind to yourself. With all the advice being offered to me these days, I think that's the advice I need to take.

Staying Sane - from Lene Anderson @ Health Central

Waking up in pain. Going to bed in pain. Never knowing if tomorrow's going to be the day it comes back with such force that your life is shattered, sidelined again while you put everything on hold, while you find a treatment that works. Hoping you'll find a treatment that works, having waking nightmares in which you don't. No longer remembering the time Before, back when your body was your own. Fighting, always fighting, to live, to get better, to not lose function, to find hope, somehow. Living with rheumatoid arthritis is living with a relentless assault, not just on your body, but on your mind, as well. . . .

Read the entire post here.

Read more of Lene's writing @ The Seated View.

(Thanks, Lene. I needed this.)

Cancer and Crow's Feet: A Lesson in What Not to Say

My mother was dying of cancer—bald, one-breasted, and deep in the throes of chemotherapy—when one of her friends called her. One would hope she was calling to cheer Mom up. Not so much. “I’m sooo depressed,” the friend said. “I just don’t know what I’m going to do.” “What happened?” my mother asked. Her friend replied, “I woke up this morning and looked in the mirror, and I have crow’s feet!”

So far, my interactions with people who learn of my diagnosis have not been that gobsmacking. But people do seem to have a hard time knowing what to say to someone with a chronic illness—especially one as unfamiliar as autoimmune arthritis.

I try to avoid that awkward moment of disclosure. I’ve learned to tell the checker at the grocery store that I have a “bad back” so she’ll pack my bags lighter and put them back in the cart for me. I make good use of the phrase “health issues.” But eventually, when someone is a “regular” in your life, you have to tell them. And sometimes even near-strangers will corner you into confession, pestering you about why you can’t do something, or why you are limping, until you finally give in.

I try to keep it simple: “I have rheumatoid arthritis.” Because even though my rheumatologist hasn’t decided if I have rheumatoid, psoriatic arthritis, or both, it’s a phrase that at least some people recognize. I also try to steer the conversation away as quickly as possible. With some people, these precautions head off unfortunate remarks. But it doesn’t stop others from uninformed—even rude—comments.

I know that people don’t intend to be hurtful. These comments come from ignorance and the social pressure to say something, anything. But that “anything” often sounds like judgment or skepticism. So to help prevent those awkward moments, here’s my top ten list of what not to say.

All of these are actual comments people have made to me. (Some of them are even from dear friends who, like all of us, have experienced an unfortunate and momentary interruption of the mind-mouth connection.). My responses below have never been voiced. These are the replies I think of after the fact, but probably could never bring myself to actually say. Perhaps my unspoken responses—sarcasm and all—will provide a glimpse into how a seemingly innocent or well-meaning comment can be hurtful.

10 Things Not to Say to Someone with Autoimmune Arthritis

(And What I Wish I Had the Nerve to Say to Your Face)

10. I have a touch of rheumatoid arthritis in my left knee. No, you don’t. That’s like being a little bit pregnant.

9. You don’t look like you have arthritis. And you don’t look insensitive. But you are. Maybe I’m having a good day, or have a few hours left on my last dose of Vicodin. This is an invisible disease. Thanks for implying I’m a slacker.

8. You need to be careful if you’re taking [Advil, Tylenol, Aspirin]. It can really be hard on your [kidneys, liver, stomach]. That’s the least of my worries. The drug I’m taking is used to treat cancer. It was derived from mustard gas. It can hammer my liver and permanently damage my lungs. On the plus side, it enables me to walk. But thanks for the heads up.

7. Come on! Come have coffee with me. It will be good for you. Though I love you, dear friend, I have a limited amount of energy. Sitting in a coffee shop equals 2 fewer hours to cope with daily life. If you really want to spend time with me, help me weed the garden or clean house. We’ll get time together, and I’ll get some much needed help with the chores that I can no longer do on my own.

6. You should take glucosamine. It really helped my [insert single joint here]. The phrase “pissing in a hurricane” comes to mind.

5. You can’t possibly have arthritis. You’re too young. Really? Whew! I’m so glad this is all some big misunderstanding.

4. Have you tried [bee stings, liver cleansing, past life regression, colonics]? My [mother, sister, husband’s cousin’s ex-fiancee] swears by it. I have a great team of doctors, all of whom went to medical school. I can’t imagine why none of them thought of that.

3. My [insert single body part here] has been hurting for days. I can’t take it anymore. Shall I call the waaaahmbulance?

2. I have arthritis, too. Who’s your rheumatologist? Oh, not that kind of arthritis.

1. Is there anywhere to sit in your house that isn’t covered in cat hair? How sweet of you to notice that this disease has completely disrupted my life. There’s the vacuum. Knock yourself out.