When you have arthritis, you are constantly reminded of your limitations—by your doctor, your family, your friends and, of course, by your own body. And it’s true; we do have to protect our joints. But being too careful can take the zest out of living; never challenging yourself is not living at all. That’s why sometimes you have to break the rules just to feel alive…

To say that I am not photogenic is a kindness—in most pictures, I look as if I’m about to bite the photographer and I’m  real happy about it. But there is one picture that I’m very proud of: I’m lying on a boogie board after just barely surviving a huge (by East coast standards) wave and I’m grinning like hell. If I still had the picture, I’d post it, but I gave it to my rheumatologist. As usual, he shook his head in despair.

I bet some of you are thinking, “Well, good for you, Ms. Barely Affected!”

Oh, but I am. I was and still am in the moderately severe to severe range. And did I pay for my little joy ride? Yes, Ma’am, I did.

So why did I put myself through it? Well, I was sitting on the beach with my then four-year old son, building the 47th sand castle of the day watching my husband and teenage daughter catching waves on their boogie boards. As I was watching them, ennobling myself with righteous self-pity, I thought about all the things I’ve given up since developing RA: ballet, fencing, water-skiing, jogging, soccer and long, long walks. It didn’t matter that I was never any good at any of these activities or that I actually loathed some of them (jogging comes to mind)…I was on a roll. My martyrdom knew no bounds.

And then I thought, “Oh, for God’s sake…this is my vacation. I’ll be damned if I’m going to sit on the beach feeling sorry for myself.” With that, I fairly snatched the boogie board out from underneath my startled husband and humiliated my daughter by staying with her, wave after wave. When it went well, all was pain-free; when I wiped out, it hurt (not to mention the fact that N.C. beaches are rocky…I still have scars on my stomach from a particularly bad wipeout). But when riding a smooth wave, it was exhilarating…not only because of the ride, but because I was breaking the rules. I was doing something…normal.

Even so, I know my own body well enough to understand its limitations. After dinner, I soaked in a hot bath and spent the rest of the evening watching cable (in itself, a heady experience) from my motel bed. I took painkillers and went to sleep by 10. And in the morning, I was fine (comparatively speaking). I think that just by breaking the rules and having some fun, that I invoked our good friend Placebo. Over the next couple of days, I stuck to the same schedule and had a great time.

I realize that this is an extreme example and let me hasten to add that if I had stuck to that schedule indefinitely, I probably would have been in big trouble. As it was, as soon as the vacation was over, Placebo vanished and Flare took his place…and Flare overstayed his welcome by several weeks.

Even so, I believe that it is important that we challenge ourselves from time to time. That doesn’t mean you have to take up hockey or become a participant on Survivor. It means participating in the Arthritis Run/Walk…even if you can only walk half a mile. Or taking up a hobby that you’ve always wanted to do but felt that it would be too difficult/painful to do. Or playing with your kids in the backyard…even when you know that you’ll pay for it later. Years later, you and your kids won’t remember the flare…but you’ll remember the laughter.

Defiant Words From the Rebel

If you’ve read more than a couple of my articles, then you know by now that I chafe under any type of restriction—I suppose it’s my own version of denial. As a result of that denial—and since I’ve developed RA—I’ve learned how to spin, dye and knit yarn; make candles, goat’s milk soap and homemade bread; do Tae Bo (wait—before you become completely exasperated with me, let me hasten to explain that this is the most grandma form of tae bo imaginable), learned how to roller blade, explored a cave, went camping, boogie boarding, started an online antiques and collectibles business, and, of course, set up a website designed to promote coping skills for people with rheumatoid arthritis. Do I do all of these things? God, no…sometimes months go by when I can’t do any of them. But each time I learn a new hobby, break a new rule, do something that I’ve been told that I can’t do, I get that same rush I felt on the boogie board in Nags Head.

Daily Defiance

As I said before, you don’t have to be extreme to be defiant. For some of us, using a walker instead of a wheelchair is an act of defiance; for others (not me), mountain climbing. You have to decide how and when to break the rules—and when it’s appropriate to do so. For example, you don’t want to try that new workout video on a day that is filled with errands and responsibilities; save that video for a “quiet” day, so you’ll be able to pace yourself and rest afterwards. And please don’t do what I have done so many times: performing some activity or chore because you are too embarrassed to tell others that you shouldn’t do it. That’s not defiance—that’s called being a martyr. Self-pity is poison…try not to indulge.

Acts of Defiance for All

Here is a list of defiant acts—both silly and serious—for you to consider:

* Play hide-and-go-seek with your kids (or the neighbor’s kids, nieces, nephews, etc).
* When confronted by someone who thinks that you aren’t entitled to special parking because you “don’t look handicapped”, say “Thanks!” and walk away.
* When you need it, ask for help…and don’t apologize.
* Laugh—a lot—especially at yourself.
* Take up some hobby that you’ve always wanted to learn. If it’s too painful, keep adapting it until you can do it in your own way. (For example, I have a very strange way of knitting—and for only half an hour at a time—but it works!)
* Instead of wearing orthopedic shoes, be totally hip (and, as an added bonus, completely mortify the teenager in your life) and wear Doc Martens or Birkenstock shoes: ugly but trendy.
* Get a physical exam and be thrilled at how healthy you are in spite of arthritis…and if you aren’t, get healthy.
* Play Frisbee with your dog.
* Do or buy something completely frivolous…just because you feel like it.
* Doctors are human; challenge them (politely, of course) if you feel that they are wrong. This is your body, not theirs.
* Insurance companies are not altruistic; they don’t care if you get better or not. Never just accept a denial on your claims. Always appeal.
* Good medical care is more important than cable TV, fancy cars, restaurants, designer clothes for the kids, etc. In order to afford it, cut out whatever luxury necessary and don’t apologize for it. Medicine is just as important as food.
* Take up photography. Or just take a bunch of pictures of people and places that you love.
* Stop with the “easy-to-put-on” arthritis clothes, already. Wear something outrageous. Wear something that you’ve never had the nerve to wear before…and wear it proud.
* Take up a musical instrument (or singing, for that matter). I know a man with moderately severe RA who has taken up violin…and he’s doing quite well, too.
* Chew out someone who deserves it. Don’t let arthritis make you mousy!
* On the other hand, tell someone that you love them…even if they already know.
* Go back to school. Learn new skills you can use to work full-time, part-time, telecommute, start your own business or just to enrich yourself. There are plenty of grants out there for old fogies (30 +) who want an education…go for it!
* Visit your local Department of Rehabilitative Services and find out how they can help you (article coming soon!). If they are understaffed (and they will be), email your governor, senators and all your congressmen and ask them why—repeatedly.

* If you have the money, buy stock in biotechnology and—eventually—get the last laugh.
* Be happy…in spite of everything.