Still Behind the Chair - A Hairdresser with RA

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Still Behind the Chair
22 years doing hair · 4 years with rheumatoid arthritis · 0 years of quitting
Jeanie Ashley, Roanoke, Virginia

Hey there, sugar.

Pull up a chair. Not that one, that's Alma's. She's been coming in every Friday at ten for a wash and set since 1979, before I even had my own shop, and if you sit in her chair she'll give you a look that'll curl your hair for free.

I'm Jeanie. I'm 41. I've been doing hair since I got out of beauty school at nineteen, and since 1990 I've had my own little two-chair shop in Roanoke, me in one chair and a girl who rents the other. Cuts, color, perms, updos for every prom and wedding in the valley, and a whole lot of listening. A beauty shop is half salon and half confessional, and I keep my mouth shut about both.

In 1995 I found out I have rheumatoid arthritis. This page is about how I kept doing the job I love anyway: what RA is, what's helped me (including the new shots), and the joint-saving tricks I've picked up that would help anybody who works with their hands, whether you're cutting hair, typing, sewing, or carving turkeys.

Fair warning: I'm a hairdresser. I know a whole lot about foils and nothing about medical school. Everything here is what happened to me. Your rheumatologist is the one who knows you. Talk to them before you change a thing.

The day I couldn't hold my shears

It started in the fall of 1994. My knuckles were puffy in the mornings and my wrists ached. I figured it was carpal tunnel, which every hairdresser gets sooner or later, or just too many perms. Then it was both hands. Then my feet, so bad that the first few steps out of bed felt like walking on marbles. In the mornings I'd stand in the shower with my hands under the hot water for twenty minutes before I could make a fist.

One Saturday in March of 1995 I had a bride at eight in the morning, and I picked up my good shears and could not close them. Could not. My fingers were so swollen and stiff they just wouldn't go. I had the girl in the other chair finish the bride while I went in the back room and cried into a stack of clean towels.

Monday I went to my family doctor. She looked at my hands, both of them swollen in the same places, and asked how long the stiffness lasted in the mornings. I said about two hours. She got real quiet, ran some blood work and some X-rays, and sent me to a rheumatologist, Dr. Borgman. By May I had a name for it.

So what is RA, anyway?

Your immune system is supposed to fight off germs. In rheumatoid arthritis, it gets its wires crossed and attacks the lining of your joints instead. That lining gets inflamed, and the joint gets swollen, hot, stiff and sore. Over time, if it isn't controlled, that inflammation can damage the cartilage and bone and change the shape of the joint.

It usually hits the same joints on both sides. Both hands, both wrists, both feet. That's one of the big clues.
Morning stiffness that lasts a long time, an hour or more, is another one.
It can make you tired all over, like you've got the flu, because it's your whole body's immune system, not just your knuckles.
Women get it two or three times as often as men. It can start at any age, but most often in the middle years.
It is NOT the same as osteoarthritis. Osteoarthritis is the wear-and-tear kind, where the cartilage wears down over the years, usually in older folks and usually in the knees, hips, and the end joints of the fingers. It's what my ladies mean when they say "my arthritis is acting up." RA is a whole different animal: an immune system problem, with swelling and inflammation, and it can show up at thirty.
Early treatment matters. This is the most important thing on this page. The doctors used to wait and see. Now they've learned that the damage to the joints often starts in the first couple of years, so they treat it early and hard to protect your joints. If your hands are swelling up and your mornings are stiff, don't wait like I did. Go now.

What I've taken (ask YOUR rheumatologist)

Everybody's RA is different, and so is everybody's treatment. This is just the road I've been down.

1995 to 1998: At first, anti-inflammatory pills for the pain and swelling. Then Dr. Borgman started me on methotrexate, a once-a-week pill that calms down the immune system. It helped some. My hands went down about halfway and I could work again, mostly. It means regular blood tests to check my liver and my blood counts, and no more than a sip of wine at a wedding. On bad spells I took a little prednisone to get through, but you don't want to stay on that one long, and he kept me on as little as he could.

The new drugs of late 1998: Last fall was a big season for people with RA. Two new medicines came along that everybody in my support group was talking about:

Enbrel was approved in November 1998. It's a shot that blocks one of the proteins your immune system uses to cause the inflammation. You give it to yourself under the skin, twice a week.
Celebrex came out right at the end of the year. It's a new kind of anti-inflammatory for pain and swelling that's supposed to be easier on your stomach than the old ones. It doesn't change the disease the way methotrexate or Enbrel do. It's for how you feel.

Since February 1999: Dr. Borgman put me on Enbrel along with the methotrexate. The first time I gave myself the shot, I sat at the kitchen table for fifteen minutes staring at that little syringe. My husband Ronnie finally said, "Jeanie, you've stuck pins in about ten thousand perm rods. You can do this." I did. Now I do it Sunday and Thursday nights, in my thigh, with the TV on.

Honey, it has given me my mornings back. I'm not saying it's a miracle, and it doesn't work for everybody. But by April my morning stiffness was down from two hours to about twenty minutes. I opened a jar of pickles by myself in May and Ronnie and I did a little dance in the kitchen.

The not-so-fun parts: it's expensive (thank the Lord for insurance and a lot of phone calls), and my skin gets red and itchy where I give the shot. Because it calms down the immune system, I have to watch out for infections and call the doctor if I run a fever. Every new drug comes with a list. Read it, and ask about it.

How I keep cutting

Swivel shears. The thumb ring swivels, so I can keep my wrist straight and let the shears turn instead of twisting my thumb. Expensive. Worth every penny. Also a pair with an offset handle, and I keep them all sharp, because dull shears make your hand work twice as hard.

Padded handles. I slide foam pipe insulation from the hardware store over my round brushes and combs. They look silly. My clients think they're some fancy new salon thing. I don't correct them.

A stool. A rolling stylist's stool, so I can sit for cuts and color. I raise the client's chair up and roll around her. Twenty-two years of standing on a concrete floor did my feet no favors anyway.

Booking around my bad hours. No clients before ten. I put the easy ones (wash and sets, trims) first thing, the long color jobs in the middle of the day when my hands are loosest, and nothing hard after four. I only do two perms a week now, and the girl in the other chair takes the rest. My regulars all know, and not one of them has fussed.

The paraffin bath. A little machine that keeps a pot of wax melted and warm. I dip my hands five or six times in the morning, wrap them in a plastic bag and a towel for fifteen minutes, then peel it off. The warmth loosens everything up. I do it again at lunch. And I offer paraffin hand treatments to my clients now too, so it pays for itself. Alice says it's the best ten minutes of her week.

A lighter blow-dryer. I weighed every dryer at the beauty supply in my hands, standing right there in the aisle like a crazy woman, and bought the lightest one.

Ten minutes between clients. I book a little gap after every appointment. I stretch my fingers, run warm water over my hands, sweep up, and drink something. Bertha calls it my "pit stop."

Splints at night. My occupational therapist made me wrist splints to sleep in, to rest the joints and keep them straight. I look like a hockey goalie in bed. Ronnie says it's very attractive.

Jeanie's joint savers, for anybody who works with their hands

Most of these came from my occupational therapist. You don't have to have arthritis to use them. If you do hair, nails, typing, sewing, assembly work, or you just cook a lot, your hands will thank you in twenty years.

Use your biggest, strongest joints. Carry a bag on your forearm, not hanging from your fingers. Push a door open with your shoulder or hip. Lift a pot with two hands.
Don't pinch. A tight little pinching grip is the hardest thing on your knuckles. Make handles fatter (foam, tape, a rubber grip) so your whole hand does the work.
Keep your wrists straight as much as you can. Bent wrists plus force equals trouble.
Switch it up. Don't do the same motion for an hour straight. Alternate the hard jobs with the easy ones.
Take little breaks. A minute every half hour to open and close your hands and roll your wrists.
Warm up first. Warm water or a warm towel on your hands before you start in the morning.
Use the gadgets. Jar openers, electric can openers, lever door handles, a key turner. No prizes for doing it the hard way.
Keep moving. Gentle range-of-motion exercises every day, even on bad days. Ask for the ones that are right for you. Warm-water exercise classes are wonderful.
Respect pain. If something hurts for more than an hour or two after you do it, you did too much. Next time do less, or do it a different way.
Get help early. If your hands swell or stay stiff in the mornings, see a doctor. I'll keep saying it.

The bad days

I'm not going to sit here and tell you it's all paraffin and pickle jars. There are still bad days. Days I can't hold a cup of coffee, much less a pair of shears, and I have to call my ladies and reschedule. I hate it. I feel like I'm letting everybody down. And every single time, they say, "Honey, you take care of yourself. My hair'll keep." Last winter, when I had a real bad flare, Alma had her granddaughter drive her over with a pot of vegetable soup and sat in my kitchen and set my hair for a change. Twenty years she's been in that chair, and that day she put me in it.

Things not to say to a woman with RA, while we're at it:

"You're too young for arthritis." Tell my knuckles.
"My grandmother has that too." She has the other kind, sugar, but tell her I said hey.
"Have you tried a copper bracelet?" Yes. It turned my wrist green. That's all it did.
"But you look fine!" Thank you. I'm a professional.

The Arthritis Foundation

Call them. They're a national group with offices all over, and they have good, plain information about every kind of arthritis, exercise classes (including warm-water ones), self-help courses, and a magazine. The local office pointed me to an RA support group that meets once a month here in town. Six women and one man. We swap shot stories and recipes for things you can cook with bad hands, and we laugh a whole lot more than you'd think.

If you're a stylist with RA, or any kind of arthritis, write me. There are more of us than you'd think, and we have to stick together. Bring your own shears.

Write me: [email protected]

Clients in my chair since March 1998:

Last updated Monday, September 20, 1999 (the shop's closed Mondays, so that's computer day)
I'm a hairdresser, not a doctor. Talk to your rheumatologist.