A Better Pain Scale

Thanks to Lene @ The Seated View for sharing this link: http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html

inventory

Well, what a week it's been. On Thursday and Friday, I finally hit the wall of myself. I spent about 48 hours in the emotional breakdown lane as I finally took stock of what I've lost.

Most of my arthritis friends have something on their blogs about life before arthritis. There are often references to the "old me." At the risk of having some smart ass point out that the old me is really the young me, I thought I'd share a little of what I used to be able to do--because to grieve something well, you have to name it and acknowledge what it meant to you.

The old me could kayak all day--the Upper Coeur d'Alene was my favorite . . .

The new me hopes I'll be able to kayak flat water--a few hours would be great.

The old me could hike for hours at a stretch . . .

The new me can walk about 20 minutes--slowly--before the pain gets bad enough to make me stop.

The old me could sleep on the ground, then chase a toddler around a campground . . .

The new me can't sleep without Vicodin, Neurontin and sometimes Benadryl--four to six hours at a time when I'm lucky.

The old me could cut down a Christmas tree in snowy woods . . .

The new me ran out of energy to decorate my tree-lot tree this year. It stood there naked for three weeks, then my husband took it down.

The old me and my husband built this wall--four feet high and 100 feet long. Each of those blocks weighs 76 pounds. The old me could lift one by myself.

The new me has to tell the baggers at the grocery store that I have a "bad back," then carry the bags to the house one at a time. My husband carries the laundry up and down stairs and opens jars and bottles for me.

The old me could stay up until the wee hours of the morning to accomplish a task--in this case, a cake shaped like a police car. I could do whatever it took.

The new me has about 5 good hours a day before the fatigue sets in and the pain ramps up.

The old me could eat pasta without consequences. Then I could run off the calories--three miles a day.

The new me avoids gluten, dairy and soy which contribute to the overactivity of my immune system. The new me can't run.

The old me planted a garden.

The new me struggles to tend it.

The good news is: the 48 hours I spent venting was strangely freeing. It enabled me to do a thorough inventory, and once the losses were truly counted, I was able to tally those things about the old me that haven't been lost--the ways "me" continues to exist.

For a hard core do-er--that is, someone who defines herself by what she can do rather than who she is--this is more than a small victory. This illness, in stripping me of physical abilities, had completely upended my identity. Grief hid me from myself for a while--for grief is so very thick and dark--but I'm back now. At least, I'm back in the ways that really matter.

Thanks to my dear friend Goat who helped me come up with this list of "old me" characteristics that have less to do with what I could do and more with who I was (and still am).

The old me was/had:

spunky--check
chutzpa--yep, still there
irreverent--oh, yes
quick wit--well, people laugh at me regularly, does that count?
fearless--that's never been strictly true, but I fake it well
integrity--I hope so
never dropped the ball--well, sometimes I do now, but I'm finidng it can be a good thing
transparent--you're reading this blog, aren't you?
driven--yep
didn't like to fail--still don't, but I'm also learning to redefine failure
listens well--learning to listen to myself as well as others
not afraid to begin, harder time ending--still true, getting better at endings
kind--I think this part of me is back
ridiculously bad boundaries--yeah, this one might be worth losing

So what's left to count? All the ways the new me might be getting better, gentler, wiser. This is what I'm praying for--all that painful-to-learn stuff that you really shouldn't pray for unless you mean it. Patience. Compassion. Insight. Depth. No one wants to live with a chronic illness, but, hey, as long as we're here . . .

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.

The Best Time to Have Arthritis, Or The Optimist’s Dilemma

Do you have any questions for the doctor?” I asked. I was making my lists—medications and questions—being a good patient.

“Just Is it ever going to get better?” Mark said.

The tenderness in his voice made my eyes brim. Yes, it all comes down to that question, doesn’t it?

The next day, I offered it up to D, the rheumatologist’s PA, apologetically: “I know what you’re going to say. But my husband needs to hear it from you. He wants to know if I’m going to get better.”

“Yes,” D said.

Yes?

I’d expected a solid I-don’t-know because the only thing certain about my experience of autoimmune arthritis has been its uncertainty. We might be able to get you a remission. This drug is promising. We expect to slow your joint damage. We’re unsure exactly what kind of arthritis you have, we just know it’s autoimmune. If this doesn’t work, we’ll try something else. Might-promising-expect-unsure-if. A bouquet of guesses ribboned with equivocation. My daily experience of this disease has been just as muddling. Day to day, the symptoms vary. I can’t tell you on a Monday if I’ll be up for a Wednesday night outing.

Add to this, the confusion of scientific studies one can read on the internet. Estimates for natural (untreated) remission rates in undifferentiated arthritis range between13% and 53%. If I fall in that 47 to 87% who don’t get a natural remission, and I don’t take the drugs, I’m playing chicken with the power of the inflammatory process to create not only joint damage, but to wreak havoc with my internal organs and blood vessels. Another article referenced in RAWarrior’s blog suggests you might as well flip a coin when deciding which drug to take. Humira and Enbrel—the latest drugs I'm considering—both reduce (not eliminate) joint symptoms in about 50 to 60% of patients.

D continued, “You won’t always be like this. You’re not in a flare. What you’re calling the ‘mac truck’—that was a flare. But you’re not controlled either. It can take 2 years to find the right combination of drugs to control your disease. But you will feel better than you do now”

There is some truth to the annoying statement: “This is the best time to have autoimmune arthritis.” There are many more drugs. Joint damage can often be stalled or slowed, buying years or decades of active life. But I’d suggest that no time is a good time, thank you very much. The journeys of others with autoimmune arthritis—those I’ve known in person or via the internet—argue against D’s optimism. Most people don’t get a remission without the use of serious drugs with serious, sometimes permanent, side effects. Drugs stop working, requiring changes in medication. Flares come out of the blue and leave them bedridden for days or even weeks. Joints degrade, and new joints become affected. My “arthritis friends” tell me that even in a best case scenario I will never be the same.

All of this has me wondering about the role of optimism in autoimmune arthritis. Even when things are going well, I don’t tend to be overly sunny. But I still want to be an optimist. When the pain gets bad, or the fatigue overwhelms, or when I’m just tired of exerting so much energy to do things that used to be effortless, I want to stay smiling, energetic, and positive. It's just so easy to get discouraged and angry. Hell, there are days when I’d happily take “paragon of quiet strength.”

Even if I could flip the sunshine switch inside myself, I wonder if optimism the best long term approach to this disease. In his book Good to Great: Why Some Companies Make the Leap and Others Don’t, Jim Collins interviewed Admiral Jim Stockdale who spent eight years as a prisoner of war in Vietnam. Stockdale said it was the optimists who didn’t make it out alive. He told Collins: “they were the ones who said, ‘We’re going to be out by Christmas.’ And Christmas would come, and Christmas would go. Then they’d say, ‘We’re going to be out by Easter.’ And Easter would come, and Easter would go. And then Thanksgiving, and then it would be Christmas again. And they died of a broken heart.”

So I’m wondering how I might balance somewhere between blind optimism and despair—some place where I don’t ignore the reality of this disease but neither do I assume the worst. I’m wondering if this is what hope is.

Stockdale said, “You must never confuse faith that you will prevail in the end—which you can never afford to lose—with the discipline to confront the most brutal facts of your current reality, whatever they might be.”

I consider what prevailing looked like for Stockdale. When Collins interviewed him, Stockdale still limped on a stiff leg that had never completely healed from the 20+ sessions of torture he’d endured. Yet Stockdale told Collins, “I never lost faith in the end of the story. I never doubted not only that I would get out, but also that I would prevail in the end and turn the experience into the defining event of my life, which, in retrospect, I would not trade.”

I’m beginning to confront the brutal facts. Lately, there’s no such thing as a zero-pain day. Fatigue limits my “good” time to about 5 hours a day. I spend about 5 nights a week dealing with pain-induced insomnia in spite Vicodin and Neurontin, then sleeping away part of the morning. In the last week, I’ve finally accepted that the Type-A life I’ve lead to date is unsustainable. I will have to get help with my house and yard, limit my work at Holy Trinity to 5 hours a day, and drastically restrict my activities in the evenings when my pain and fatigue intensify.

It’s a work in progress. When I think of my "end of the story," of what prevailing might look like for me, I draw a blank. Chances are high that it will not look like a complete or permanent remission. The only thing I know for sure is that I will be changed by this illness, as Stockdale was by his imprisonment. I’m just beginning to see glimmers of the way this experience is transforming me—defining me, to use Stockdale’s words.

I guess this is where faith comes in. No pretty platitudes about God’s will, thank you. God doesn’t will suffering upon any of us. He does endure it with us in solidarity. In my better moments, I trust this illness to make me into more of God’s dream for me, something I definitely would not trade.

from the HT e-news this week, by yours truly

Peace I leave with you; my peace I give to you. I do not give to you as the world gives. Do not let your hearts be troubled, and do not let them be afraid. John 14:27.

I was a fearful child. All through those days, I carried an internal list of scary things, things that could hurt me—fires, burglars, snakes, spiders, hippies who might kidnap me—and at night my terrors unspooled into a long litany of prayers to a God who was something like a Grandpa with special powers.

A few years later, my fears found their perch as my family’s life unraveled into a tangle of alcohol and estrangement. I don’t remember if I prayed, but I learned to escape to the tree fort I’d inherited from my older brothers. Inside the kitchen, my mother poured out half her soda, filled the can back up with scotch, while I sat at the edge, legs dangling. Counting one – two – three – all the way to ten, and still I couldn’t jump. So I’d close my eyes and pick a color and vow that the instant I saw that color, I would do it.

Red.

I opened my eyes and my gaze caught sun firing the taillight of the horse trailer. I launched myself into space, dropping the ten feet to the ground, and landing in a good six inches of dried, musty manure. Then, I’d climb back up and do it again, and again, and again, each time pinning my fear to a place deep inside.

I’ve since been told that the image of a little girl leaping into a pile of horse shit does not make a particularly poetic metaphor. But looking back I understand what this otherwise anxious child was doing. She was toughening herself up, working her fear like a muscle, transforming it into something known and controlled.

In my teens, and again in my twenties, that illusion of control would shatter like tired bone. What I didn’t know then: any muscle, overdeveloped, can become a hindrance, a constant strain on the balance of the body or the soul.

What that little girl needed—and couldn’t get—was the gentle refrain in our Gospels: do not be afraid. It’s everywhere. We hear it from Jesus, and from the mouths of angels reassuring the lonely, the lost, the bewildered. Do not let your hearts be troubled, and do not let them be afraid.

The human heart is a muscle like any other. Overworked by high blood pressure, the muscle thickens. Enlarged and stiffened, it can’t move blood like it’s supposed to. It no longer fulfills the very purpose for which it was designed.

Not so different from our selves, how our essence changes as we toughen ourselves to abandonment, confusion, tragedy, judgment—all those things that make us afraid. It’s a small step from becoming strong to being hard and brittle. In our efforts to be invulnerable we can impair the very muscles God has given us for the care of one another—empathy, tenderness, compassion. In our attempts at self-protection we fail in our one purpose: to love God and one another.

Jesus offers us a different way, a different peace. This peace is not won by being smart, self-protective, or tough—by a reliance on the self. The peace of Jesus requires a counterintuitive letting go—a leap into the unknown of love. For how many of us truly know the depths of God’s love. Instead of girding ourselves against loss, he asks us to make ourselves vulnerable—to him and to one another. This is how we learn not be afraid.