Living Well with Arthritis

Brenda sent me a note asking about the neck pillow I mentioned yesterday, and I realized I never did this post, which I meant to do long ago. I even took the photos and everything back then. I figured, as I always do, that if it's information that's useful to me, it's bound to be useful to a bunch of other people, too. So here's what I've found to be helpful in dealing with arthritis.

Here are my fingers. Not nearly as bad as lots of people's I know, but bad considering I'm not yet 55 and that they're continually changing. The ring finger is the one that's currently swollen and painful. (Since this photo was taken, I've quit wearing most of the rings--I had to take them all off for new X-rays and just left them off. While I think the rings help protect the joints, like bumpers, the chiropractor believes that anything on the body, any alterations including piercings, effects everything else. So I'm checking to see if there's a difference. Sigh.)

I guess I should say that I'm not a Medical Professional of any sort, that I haven't done scientific research, I have not received any grants. I don't play a doctor on tv. I have osteoarthritis, at least in part because my father had it. And because he had it so horribly and because it drastically altered the quality of his life as he aged, and because the doctor who initially diagnosed it in my hands years ago said, ominously (or so it sounded to me), that I could tell in large part what to expect by looking at my dad and how his progressed, well. I set out to learn what I needed to know and figure out how to deal with it without big drugs and surgery. I hope to avoid surgery entirely, and I figure I'll need the big drugs later on, when it gets really painful. My dad had great results with Vioxx until they took it off the market and then was in pain pretty much constantly, I think. So far it's been diagnosed (meaning we did x-rays) in my hands and my neck--those are the only places that bother me a lot. And once you know you have it, what's the point, really, of x-raying and detailing all the places you have it, you know?

OK. So the first thing I always do when anything is wonky, from my energy levels to my digestive system to any pain anywhere, is to check my diet. One summer my fingers were driving me crazy, hurting way more than usual. By then I'd bought the hot wax thing and had tried that twice a day (it felt great while the wax was warm, but there was no lasting effect once I took it off, plus it was messy and tedious) and was doing finger exercises and whatever else I could do without taking NSAIDs (non-steroidal anti-inflammatory drugs, like aspirin and stronger RX stuff). I started checking online and found an anti-inflammatory diet, and one of the things it recommended for arthritis pain was to eliminate nightshades. Huh. What are nightshades?

Here's an explanation:
"Potatoes, tomatoes, sweet and hot peppers, eggplant, tomatillos, tamarios, pepinos, pimentos, paprika, cayenne, and Tabasco sauce are classified as nightshade foods. A particular group of substances in these foods, called alkaloids, can impact nerve-muscle function and digestive function in animals and humans, and may also be able to compromise joint function." 

Now, most of these are things I don't eat anyway--I'm not a fan of potatoes, for instance, because the nutrients they contain don't outweigh the starch and calories. I like nutrient-dense foods. And my diet pretty much follows the anti-inflammatory diet anyway. But tomatoes! Ahh, tomatoes! The summer my fingers were hurting so much was the summer when both a friend and our neighbors were giving us tons of fresh, homegrown tomatoes. We were eating tomatoes every day, all summer long. Not just one, but lots: we'd cut them up, sprinkle on some onion salt and some pepper, and eat a whole plate full. Yum! I love fresh tomatoes!

But I don't love not being able to type. Or stitch. I gave up the tomatoes (and tomato-based foods, like pizza with tomato sauce (when we do eat pizza, I get the white cheese sauce instead)). And things improved dramatically. Amazingly. Now, please keep in mind that when you're changing your diet, the results aren't going to happen overnight. It's going to take a while. And that's the same reason that it's sometimes hard to pinpoint foods that might be giving you trouble: it's not something you ate an hour ago that's contributing to joint pain. You're going to have to do some sleuthing.

So go google "anti-inflammatory diet" and check out your own diet against the results. It's absolutely the place to start, and not just if you have arthritis.  I recently had bloodwork done to check for RA (rheumatoid arthritis), and the results showed no inflammation in my body. I don't know much about this test other than it shows sedimentation rate. Go here to read more. So apparently my diet is good there.

Then there's weight. I hate talking about weight because I always get grouchy emails and comments from people who are strongly in denial about how important a healthy body weight is. They will suggest that I'm bulimic, that I'm less healthy than if I were overweight, blah, blah, blah. The truth is, though, that you cannot be fat and be healthy. I don't care what anyone claims; I have seen the cross sections of actual human bodies at the Body Worlds exhibit, and--as I have said here many times and will say many more--once you see that fat isn't just something that hangs on the outside of your skeleton but is also encasing your heart and lungs and all your other internal organs, surrounding them and squeezing them and--you get the idea. If you're overweight and find yourself gasping when you climb stairs, don't fool yourself into thinking it's just because you're a little out of shape. Think about what you're asking your body to do, what you're asking of your heart and lungs, struggling inside the suffocating grip of that thick, yellow fat.

OK, so I'm a little fanatic about weight. I believe that the only thing that kept my father mobile at all, even a little, was that he was a skinny guy. Both my parents were. While my mother was malnourished at the end of her life (she was very skinny and had atrocious eating habits, living mostly on toast and chocolate, as far as I could tell, no matter how I tried to change her habits), both of them were always thin. If my dad had been overweight, he never could have lifted himself out of the chair once his joints began to go and the muscles began to atrophy. Plus weight affects inflammation:

"It's not surprising that anti-inflammatory diets have gotten popular, says Elisa Zied, RD, a spokeswoman for the American Dietetic Association and a dietitian in New York City.

While they may have some merit, she cautions: "Individual foods should not be the focus. You need to pay attention to your overall pattern." And reducing inflammation is not just about what you eat, she says.

"Maintaining a healthy body weight is the best thing you can do to reduce inflammation," Zied says."

And inflammation isn't just about arthritis. Go do some reading. Don't be in denial, please. Denial is easy, it's comforting, it allows you to keep on doing what you're doing. But it's not going to make you feel better, and feeling good is vital in allowing you to do the things you want to do. Remember yesterday's post? Go back and read it again, esp. the end. Being as healthy as you can be and feeling as good as it's possible for you to feel--that has to be your priority. You can't do the things you want to do if you feel like crap. You can't take care of anyone else if you don't take care of yourself first. Remember that cliche about the airplane safety instructions? You know: get your own oxygen mask in place first? There's a reason.

My ideal weight is 125 lbs. It's what I weighed in jr. high when I hit my full height of 5' 8", and it's the weight I've hovered around ever since. I've weighed more--a lot more when I first started taking birth control pills--and I've weighed less, but it's the benchmark weight. Today I weigh within a pound and a half of that. It's not an option--it's not something about which I can say, "Oh, it doesn't matter." I can't say, "Oh, what's five pounds?" Which then becomes another five pounds, which then becomes another five pounds. For every extra pound of weight you carry, you're putting four extra pounds of pressure on the joints that carry that weight. (This is something you want to keep in mind if you're carrying hand weights when you walk, as well.) People say, "Oh, you're skinny. What do you care?" I say, "I care because I want to be mobile until I die. That's why." I saw what lack of mobility did to my father's quality of life, and I never forget that, and I never forget that the only reason he had as much mobility for as long as he did was that he didn't have extra weight to try to lift and move.

OK. For those of y'all who are still with me, let's talk about other stuff. Exercise is key. I hate that there's so much I can't do any more--I can't run. Most equipment at the gym makes my neck hurt. Riding a bike puts a strain across my shoulders and neck. The only thing I've found that I can do without causing problems is walk. Not on a treadmill (something about that makes my neck hurt), not with weights (ditto), but just walking. So I try to do that several times a day, walking as fast as I can while still paying attention to posture (relaxed, with my head balanced over my spine--no leaning forward or backward).

Everyone tells me to swim, but that's not going to happen. I don't swim in public pools because, well, in short: feces, urine, and snot. I know they're in there because I've seen it happen, OK? Other people's effluvia is not going to work for me. And building a pool of our own? I can't be out in the sun (the whole melanoma thang), and yada, yada, yada. So walking it is. The thing is to keep the joints moving. My dad was doing sort of OK when he could ride a stationary bike every day, but when he got double pneumonia and was in the hospital for a month, his muscles began to atrophy, and the joints got worse, and everything got a lot harder. I think about that whenever I think about how boring it is to walk every day. Sure, Midland is hot and dry and dusty, and there's smoke in the air some days and the drought has made it ugly and depressing, with dead lawns and scraggly trees. There's no nearby park to walk through, and there are no nearby woods or streams (snort) or gardens. Walking is not always a delight. But being *able* to walk is a delight, indeed, one I appreciate so much more for having seen what it's like when someone has it taken away from them.

Yoga: I credit yoga for much of what I can do. I can sit cross-legged. I can bend over and put my hands on the floor. You know, stuff that you take for granted when you're 20 and don't much think about until you realize you can't do it and don't remember the last time you could. I heartily recommend some form of yoga to everyone. I saw the difference it made in my mother's life when I finally, finally convinced her to take classes. It wasn't so much what she could do physically, not in her case (because she wasn't a convert and didn't come home and work at it; she did yoga only in the class). For my mother, the important part was seeing the instructor and seeing the things *she* could do and then discovering that the instructor was older than my mother was. It gave her hope, I think.

Let me stop here for a minute and talk about my neck. Your neck. If you've got neck pain--not just pain from "sleeping wrong" or getting "a crick" in your neck, but long-term, on-going neck pain, go find out what it is. I had pain for a long time before I got x-rays. I had a big knot on the side of my spine at the base of my skull. I kept going for massages, thinking it was stress, knotted muscles, a kink. Finally my tiny, 72-year-old masseuse (the fourth or fifth one I'd tried) said, "You know, this doesn't feel like muscle; this feels like bone." It was, indeed. X-rays, a complete round of physical therapy, and three chiropractors later, I found someone who can help with my neck (cervical spondylosis). The third chiropractor was the charm, and I go in every 2-3 weeks (we're trying to find the optimal schedule) for an adjustment. It means I can turn my head, and it also means my lower back doesn't ache like it used to. He does the adjustments and monitors any changes; I do the exercises and modify my habits. What habits? Oh, honeys. So many bad habits. Bad posture. Carrying humongous shoulder bags. Wearing Bad Shoes. Sleeping in awkward positions. It all seems like little stuff until you have the x-rays taken, get a diagnosis, and look around online and see what other people are going through because they're not willing to make those adjustments:  big drugs (the doctor who ordered the x-rays wanted to put me on oxycontin), surgery (how many people do you know who had surgery on their neck with no benefits?), braces (please, please don't go out and buy one of those padded cervical collars to wear around your neck unless your doctor has a really good reason for recommending it; those can lead to the atrophy of the neck muscles, which is the exact opposite of what you need to help support your neck. My mother bought one and started using it constantly, and her neck pain grew worse and worse until, in the last year or so of her life, she spent most of her time in bed because having her head propped on pillows was the only way to relieve the neck pain. I don't know about y'all, but I've learned a LOT of lessons from the bad experiences of people I know). Find out what's wrong and then educate yourself about selfcare, treatment options, lifestyle changes. You have to be willing to make the changes you need if you want to feel as good as you can so you can spend your time doing the things you want to do instead of lying in bed hurting. Or taking drugs so powerful they leave you sitting in a lump on the end of the couch, drooling on yourself. I've seen those effects.

And that brings up the other kind of denial, the really tough kind: the denial we all hang onto about getting older. I know people my age who think they should still be able to do the things they did at 20 or 30 or 40. Sometimes this is a good thing: it's good to keep doing things you love. But sometimes it's not, as when you keep running past the point when your joints need it, or you insist on riding your bike to the point of exhaustion and strain. The fact is that your body changes as you age, and you're not going to be able to do the things you once did the way you once did them. You're going to need more rest, more recuperation between events, more selfcare. You're going to have to figure out ways to adjust the things you do so you can keep doing them. Take breaks, stretch, move around. Do I like this? Hell, no. I wish I could still run six miles in the morning, eat an order of nachos for lunch, have a margarita after work, stay out dancing until 2 a.m., eat a bag of chocolate-covered peanuts in bed, have CNN blaring on the tv all night long, and get up the next day and do it all again. Not because I did all those things every single day, but because I could do them if I wanted to, and with no apparent (immediate) ill effects. I cannot do that now, and I will never be able to do that again. Part of dealing with getting older, at any age, is the acceptance of loss. We hate that; we are wired to hate that. Martha Beck, writing in this month's O Magazine, writes about saying goodbye to things and how hard it is. One thing struck me, when she wrote:

"Any kind of ending can leave us feeling 'deserted,' as if our lives have gone barren and dry. It doesn't take moving, divorce, or a loved one's death; we can feel bereaved when a friendship wanes, or our knees get too creaky for racquetball, or we quit a bad habit. . . . 


"'Every happiness,' writes Rilke, 'is the child of a separation / it did not think it could survive.' Conversely, any sorrow can be the parent of a joy we've never imagined."

So. Change is inevitable. It's all the time, everywhere. Our job is to learn to adapt.  When my dad could no longer hold a pen or a fork, I hunted online for solutions. He wasn't crazy about them, and I don't know if he really ever used the pens

or if he used the fork and spoon

once he got out of the hospital, but it was good to know that this stuff is out there. I like knowing that I can order this

for holding the key--something that's getting increasingly irritating.

The pillow I'm using for my neck. This seems to be helping a lot. it was $19.99 at Bed, Bath, and Beyond. If you have a coupon, you can save varying amounts.

 The long part lies along your back, and the little dent where the button is is where you put your ear. The side benefit of this has been that it's FABULOUS for the cartilage piercings: that little hollow keeps the pressure off while they heal.

The cover is removable and can be laundered. I wish they had extra covers, so I could dye some. When I took it off to wash it, I noticed that the pillow already has an open seam I need to mend. But for $20, what can you expect? (Answer: not a whole lot, not any more.)

I hope something here helps someone out there. We get only one life, and being able to spend it doing the things we want to do is so, so worth whatever adjustments we have to make. Sure, it would be great to be eating the nachos and sleeping in the grass in the park and wearing those fabulous 6" heels (like I would know about those from personal experience), but if giving those up means we'll be able to keep painting or sewing or playing the guitar or writing? Then it's worth it. It really is.

XO