Five tens plus five

T’was my birthday on Oct. 25th, but since the Big Day had the bad taste to fall on a Tuesday we pushed the celebration to the weekend.

So on Saturday night, my family (plus me) met up at a favorite brewhouse-style restaurant for a tasty, high calorie, high fat, high carb, sinful and delicious meal in honor of my successfully having lived through 54 years. I had a giant order of fish n’chips and drank a pomegranate margarita, my first booze since my last birthday. I was a bit tipsy by the time the glass was empty. The stand-in for a birthday cake was a lit  candle stuck into the scoop of vanilla ice cream on top of a freshly baked, still-warm chocolate chip cookie.

It was divine.

Gift-wise, it was a particularly girlie sort of birthday. To whit: I am now in proud possession of a free manicure, a free pedicure and a brand new pair of pajamas, the pants-part of which are leopard-patterned. Meowrrrr.

Happy Halloween, everyone!

Distractful thinking

“By this time tomorrow, this flare will be gone.”

That’s what I used to tell myself during the bad flares, the ones that made me wonder how I’d live through them. The ones that were so bad it felt like a dull spike was being drilled into the joints of my knee, or my great toe, or my shoulder.

“By this time tomorrow it will be gone.”

Sometimes the flare actually was gone by that time the next day. It hardly mattered, honestly. Telling myself that, in the midst of the awful pain and the silent, screaming fear that came with it helped to keep me calm. To keep me strong. It was a coping tool I used faithfully because it worked.

“By this time tomorrow it will be gone” doesn’t work with hip bursitis. Unlike my rheuma flares, which vary in intensity and can be depended upon (I can’t believe I’m writing that!) to ease off and stop eventually, this bursitis is always with me. I wake up to the same low, insistent, aching pain in both hips that I went to sleep with last night. Every night. And it persists all day, every day, despite exercise, despite Tramadol and now, Vicodin.

Of course, with the bursitis is my new and improved, under-pharmaceutical-control rheuma-dragon, who bites and chews at my knuckles and wrists at random. He’s invited his cousin, the osteo-wyrm, in for a visit, and he’s given her the joints at my fingertips to work on. Together they’re gnawing away as I type this, an aggravating counterpoint to the throbbing of “my” bursitis, which throbs from my arse down the back and outside of each hip to the knee. Basically along the entire length of my iliotibial bands (IT bands), the long, thick ligaments that sorta hold all the thigh muscles in place and help me walk.

Yeah, okay. I’m in a whiny mood this morning. Silly me; I went to sleep last night telling myself a variation of the fable I started this post with: “It will be gone when I wake up.”

Eh, not so much.

The good news is that the increased dosage of nortriptyline I take an hour before bedtime each night is working. I sleep right through the bursitis aches now. I’m deeply grateful. Despite my carping, that deep, restful sleep each night makes a huge difference in my ability to cope with the pain as I make my way through each day. I think I’ll send a thank-you note to my always-smiling, practical rheumatologist, Dr. McA.

When I opened Word to write this post, I had in mind to write about the coping mechanisms I use for rheuma (and now, bursitis) that help me through flares. The main one I was thinking about? Distraction. In our busy world, we tend to think of distraction as a bad thing. Distractions keep us from keeping our attention on our work, or on the road as we drive. But when we’re in pain, anything that can help us shift our minds away from it is welcome.

Allowing pain to command our constant, full attention makes for far more stress and can make hours seem like days. It can be hard to tear our minds away from it, but I’ve found practice works in this case.

How?

When I hurt, and my mind is determined to stay with the pain (like this morning, for instance), I look for something equally as compelling to distract me from it. For many years my first, go-to choice has been to lose myself in a good book.

It doesn’t matter which genre or type of book you choose. It just has to be one that can capture your interest and imagination and hold it tight. For me, only fiction can really do that. One of my favorite books is The Stand, by Steven King. There are several compelling aspects to The Stand: it’s filled with complex, fully fleshed-out characters, both scary and not; and it’s incredibly descriptive, so that when I’m reading, I’m right there, an observer in the place where the action is taking place. The plot is simple: this is a story about good vs. evil. Finally, The Stand is a long book. It has the added virtue of riveting me to its pages for hours at a stretch.

My mind is refocused. While I’m reading, I don’t notice my pain anymore. It’s as simple as that.

Another method I use for distraction is writing. This is harder, of course—words don’t always want to manifest themselves on the page the way I want them to. But if I can manage it, the sheer delight of writing fast and (hopefully) well is a wonderful distraction from physical pain.

Listening to a good audiobook can work, too. It’s a 30-minute drive to my aunt and uncle’s house when I go there to shop and cook for them. I always use the same route, as it’s the quickest, but it’s pretty dull. A few weeks ago I plugged my iTouch into the dashboard stereo, pressed the AUX button and started listening to A Wizard of Earthsea, a book written long ago by the famous science fiction and fantasy author Ursula K. LeGuin. The story, which is about magic, wizards, and a very different world from my own, is read by Harlan Ellison. He’s a terrific author of science fiction and fantasy in his own right, and quite famous. His voicing as he reads the story to me is sublime.

Each time I drive to my aunt and uncle’s house now I listen to a little more of A Wizard of Earthsea. It makes the drive seem like it takes about four minutes, and if I’m hurting from bursitis or RA at the time (which I usually am), I lose my awareness of it. It’s actually a double gift: I’m entertained and my pain is “relieved” at the same time.

Movies and TV, unless they’re really, really good, don’t work quite as well for me as pain-distracters as books do. But for lots of people, they do work equally as well. Comedies offer that special, double gift, too: along with distraction, you’re given laughter, which stimulates endorphins, the brain’s natural opiates. What more could you ask for?

Oh, right. A cure. Well, we can’t have that yet, but in the meantime, it’s worth it to practice the art of distraction. There’s more to pain control than drugs. And how about that: While I wrote this post I forgot, most of the time, my aching hips and twingy fingers.

It’s like magic.

 

 

 

PiB -- 1996-2011

My sweet old buddy PiB, who used each of his nine lives thoroughly and well, went to the stars yesterday afternoon. He was the dearest cat-friend I’ve ever had, and since the day I lost my job, he was my constant companion. When he left, he took a piece of my heart with him.

What about the future?

This is a question that anyone who copes with autoimmune arthritis asks at some time or another. This disease is practically the embodiment of uncertainty and change. We can’t help but wonder what’s ahead for us.

I believe, however, that there’s not much point in twisting our minds into contortions over what the future might or might not bring. For one thing, the future doesn’t really exist. It hasn’t happened yet. The future—yours, mine, everyone’s—is a mystery. Anything could happen. Anything might. Or might not.

I’ve written before about “mindfulness,” the practice of living in the present moment, the “now.” The word “practice” itself implies constant effort, perhaps even single-minded dedication to the subject, like the way a silent, mysterious, half-smiling Buddhist monk would do it. But you don’t need to be a monk to be mindful, thank goodness. It’s not that hard to do. Still, being mindful does take a certain amount of effort. Good thing it’s pleasant work!

I started being mindful back in the late 1980s, when I lived in Germany. Within the first year of arriving there, I started having frequent, very painful and sometimes disabling RA flares, though I wasn’t diagnosed until the second year. (It didn’t occur to me that the source of the pain was a disease; I simply thought I’d somehow injured myself without noticing (!) or “slept wrong,” rendering a wrist or shoulder or ankle stiff and painful upon waking in the morning. Silly, wasn’t I?)

The RA flares were a bummer, for sure, but I absolutely loved the adventure I was in the middle of. I’d dreamt of going to Europe since I was a little girl, when I’d read the fairy tales of the Brothers Grimm and Hans Christian Andersen beneath the blankets with my flashlight. I’ve always had an extremely vivid, visual imagination. I’m an artist and a writer. To this day I love stories and storytelling. And I longed to see, with my own eyes, real castles and thatched cottages; crooked buildings made of brick and stone separated by narrow cobbled lanes; and dark forests of whispering trees so ancient their branches were weighed down by the heavy fruit of Time itself.

My imagination was–and is–busy all the time.

Being in Germany with years ahead of me in which to explore and learn really was a dream come true for me. But I believe that such gifts always come with a price. Mine was rheumatoid arthritis.

Although I worked full time during the six years I lived in Northern Germany, I loved wandering the old parts of the cities and towns on the weekends, and I often did so in spite of having painful flares in this limb or that along with feet so sore that I’d have to use a cane to walk. But sometimes, the flares were too severe even for that. I’d have to stay home. Being housebound as the Old World beckoned to me was frustrating, but I had no choice. I’d just have to wait the flares out and hope that the next time I made plans to explore, my rheuma dragon would sleep through it. I’d already anthromorphized my RA pain, imagining it as a wakeful, hateful dragon that chewed and tore at my joints with sharp teeth and claws.

We lived a half hour by train from the city of Bremen, the home of Grimm’s famous Town Musicians. I absolutely loved visiting there. Hamelin (Hameln) of Pied Piper fame was two hours away by Autobahn and surface roads. And the countryside and many small towns in between were, to me, full of magic with their half-timbered buildings and houses, thatch-roofed barns, the bleak, heathered moors and dense stands of forest along the edges. Just a quick fifteen minutes from my home was a fire tower once used to warn merchant ships off the coastline as they made their way from the cold, stormy North Sea into the mouth of the Weser River, heavy with wares for the enclaves of civilization built around inlets and harbors. That high stone tower had been there for more than 800 years. When I touched the stone at its base I swear it vibrated with history.

I remember clearly the afternoon I first decided to be mindful. I didn’t call it that, then. I simply wanted to pay attention to my surroundings and consciously record special moments in my memory for future reminiscence. I knew this magical time in Europe wouldn’t last forever. I was on a short walk with Max, our little wire-haired Dachshund. Each step I took was agonizing, thanks to a bad flare at the base of my big toe on my right foot. I was feeling pretty grouchy and low. I wanted to Max to hurry so I could go back up to our third floor flat and take my weight off my feet.

We’d gone around the back of the building where there was a narrow stretch of grass bounded by a dense, elderly hedge that stood about nine feet high. It was early autumn and the air was sharp and cool. As Max nosed along the base of the hedge sniffing for the perfect spot to anoint, I happened to glance down.

There, at my feet, was a fairy ring.

I stared at it, stopped dead in my tracks. I’d read about fairy rings in stories, but I’d never actually seen one—and I never expected to. I’d  had no idea that they were real. I was totally delighted and promptly forgot that I was feeling impatient with the dog and irritated with my family. I forgot the throbbing, biting pain in my right foot and the dull, continuous ache in the left. For a long, conscious moment the sun grew brighter, the air more crystalline, and the small rounded caps of the mushrooms and green spears of grass were sharp-edged and glittering. The world went still.

Fairy rings, I’d read, were where elves held their wild dances on moonlit nights. Fairy rings were also gateways into the Otherworld, representing a dangerous temptation to unwary mortals. They were fey and magical, strange and fantastic.

That fairy ring in the lawn behind my flat represented the mythical and the real at the same time. It was, to me, a momentous and unforgettable gift. I just gazed at it and let the simple joy of discovering its reality fill me up. Remember this, I thought to myself. Remember this moment forever.

In the daily rush and chaos of life it’s easy to miss the gifts the world has to offer. But from that day with Max and the fairy ring on, I made a conscious effort to become aware of those special, breathtakingly simple moments we all have from time to time; those moments during which the starstuff of our souls and the universe itself become one and the same. As often as I can remember to do it, I bring my attention to the now, to the present moment, and savor it.

Being mindful requires turning off the constant drone of thought, worry and directives in my own mind, even if only for a few moments. It’s not always easy. If it was, it wouldn’t be so deeply rewarding. Living in the present moment as opposed to living the future—that which hasn’t happened yet but that we think about all the time—is refreshing and renewing. It rewards right now, not next payday or Christmas or next year. Being mindful also heals the hurts and wounds we carry forward with us from the past. This can’t be anything but healthy.

Lately I’ve struggled with the constant pain of intransient bursitis in my hips. It’s been hard to be positive and upbeat. Pain drains energy, and in the midst of it, whenI think about what my future might bring it’s easy to conjure up the worst. I imagine more pain, more disability, continued unemployment and the loss of much of what I’ve worked for these last 35 years. It’s a grim exercise, that sort of look into the dim unknown that’s the future.

The thing is, it’s false. I don’t know what the future will bring. It may be the complete opposite of what my tired, pained imagination conjures up for me at the moment. And honestly, why can’t my future be bright rather than grim? I have lots of useful talents and skills. I have an open mind, always ready to learn and practice and explore. Life is enchanting, and being mindful—living in the now, rather than in the past or the future—reminds me of that.

So. What about the future? If it’s anything like this moment, it glitters with hope.

Questions and answers

I saw my rheumatologist this last Saturday morning. (Have I mentioned how I appreciate these weekend appointments? They’re less crowded, less hurried, and all-around less stressful than the usual weekday appointments. Yay, VA!) This was one I’d made between my usual once-a-quarter appointments. The constant pain from my hip bursitis (caused by my RA) has increased slowly and inexorably in spite of physical therapy, stretching exercises, multiple treatments involving both oral and injected steroids, and daily painkillers. My sleep is frequently interrupted because of the intense ache in both hips. The medication my rheumy prescribed to mitigate that problem hasn’t worked.

As a result, I have lovely dark bags beneath my bloodshot eyes and a growing crankiness and pessimism I don’t admire in myself. My next regular appointment was to be in December. I decided I simply couldn’t wait that long.

I had three main requests of my doctor. First, I wanted to try another, longer prednisolone taper, since that had worked once to quell the pain, even if it was temporary. That works for me, I reasoned, as long as I can take another taper when the pain returns. And another. And another…

To my dismay, my doc said no. I was diagnosed with osteopenia following a Dexascan (bone scan) two years ago. I had another scan in August. I hadn’t been told the results yet, but my doc remedied that on Saturday. I now have osteoporosis (!!). Because a side-effect of steroid medications is bone-thinning, he doesn’t want me taking any more of the stuff. It’s a reasonable decision, and I agree with it. But I was disappointing anyway. The only thing I’d done that actually had a real effect on my bursitis was now permanently off the list. Sigh.

So, I now get to take yet another medication: a biphosphonate once a week to treat and help strengthen my rapidly thinning bones. And, instead of steroids, my doctor is referring me to orthopedics for another opinion on what to do about this recalcitrant trochanteric bursitis. I have now “failed” steroids and physical therapy. Might as well “fail” orthopedics, too, the gloomy pessimist in my head remarks. I hate thinking  that way, so I’m trying to simply be patient as I follow this twisting roadmap toward less pain and better health.

The second thing I wanted to ask my rheumatologist was for better pain medication, or at least, a higher dose of what I’m already taking. Like most people who take narcotic pain meds frequently, my body has grown so accustomed to them that they no longer have much appreciable ability to reduce my pain. This isn’t addiction. It’s called tolerance. I don’t abuse these drugs or take them when I’m not in pain simply for the high. The fact is, they don’t make me high anymore, but at an appropriate dose, they do reduce my pain.

To my relief, my rheumy said “yes” to this request.

Finally, I asked him to re-evaluate the medication I’m taking as a sleep-aid, nortriptyline. It’s actually an anti-depressant, but it’s frequently used because two of its side-effects are drowsiness and pain reduction. I’ve been taking this med for close to a year now, with my doc increasing the dosage I take by 25 milligrams with each subsequent appointment. It simply hasn’t worked.

This time he increased it by 25 milligrams yet again. He told me he’s reluctant to put me on other types of sleep aids, as this one, nortriptyline, is the safest one I can take. I was disappointed, but it’s hard to argue with a doctor who’s so obviously concerned about your safety. And, as with the nixed steroids, my internal pessimist piped up in my head again. “Yeah, we’ve already tried increasing the dosage, doc. Hasn’t worked. Why bother? Why not something else?” I’m trying to ignore that negative voice. Maybe this increase will be the answer.

I left the appointment satisfied. My doctor took extra time with me—nearly a half-hour—and evaluated my RA progress along with dealing with the bursitis. He checked my hands, which are always tender and achy, and noted the lack of synovial swelling. He asked me about morning stiffness and flares. While I’ve had both, they fit within the “under control” category, so he made no changes to the cocktail of Arava, plaquinil and sulfasalazine I take each day. He also checked the range of motion in both hips, which is still acceptable, and had me lie on each side as he rechecked the intensity of my bursitis, pressing the diagnostic pressure points gently. I nearly came off the table with each touch. He explained, again, that the bursae have practically no blood supply, so taking medications by mouth is inefficient, mostly a wasted effort. He talked about the iliotibial band, a long ligament that stretches from the hip down the outside of the thigh to the knee. When the bursae beneath the band are inflamed, it rubs on them, and the friction causes pain. Exercising that band stretches it out some, which can help relieve the pain, but in some cases it doesn’t. That’s where I am now. My doc said that an orthopedic specialist might have other treatments for the problem, so it would be worth a consult.

He was kind. He listened. He gave me his time and his compassion, he was obviously interested in the problem, and he made another  real effort to help me resolve it. We’ve all been to doctors who gave us none of these things, so I’m pleased with his care even as I’m frustrated that he’s been unable to give me an instant fix. It’s beginning to dawn on me that there may not be a fix for this one, just as there’s no permanent fix for rheumatoid arthritis. I’m just going to have to make my peace with that. It’s hard, particularly when the pain is constant. But I’m getting there, little by little.

In spite of my current bout of pessimism, I’m still holding on to hope. I refuse to give up. And my inner optimist is still there, too, telling me that there is a bright side to this bursitis. What is it? The low, intense ache makes me aware, all the time, of my legs and hips, which isn’t exactly pleasant. But that awareness is an opportunity for mindfulness. It allows me to be in the present moment, aware of the pain but also of the good—the beauty of the day, of the people around me, of the pleasure of small things and small comforts. They almost always override the glumness that comes with constant, nagging pain. I like being mindful. It’s the base of hope.

It will never go away as long as the base is strong.

World Arthritis Day: My onset story

Today is World Arthritis Day. The theme for this year is “Move to Improve,” words that anyone who copes with rheumatoid arthritis knows the wisdom of. We move not only to maintain the strength and flexibility of our compromised joints, but to improve and maintain our physical and mental health as well.

There are many types of arthritis, including osteoarthritis, psoriatic arthritis, juvenile ideopathic/rheumatoid arthritis, infective arthritis, polyarthritis… the list goes on and on. Each of these forms of arthritis are painful and can be debilitating and disabling. Today we recognize the many, many millions of people who cope each day of their lives with arthritis and the importance of finding a cure for many types of it, including rheumatoid arthritis.

That last might be better named “autoimmune arthritis,” since it’s a disease caused by the body’s immune system attacking its own tissues.

What follows is my rheumatoid arthritis onset story, part of the IAAM World Arthritis Day Blog Event:

It started with the various parts of me I “slept wrong” on. One day it would be a shoulder, the next a wrist, another day an ankle or a couple of fingers. In those first months the pain wasn’t as bad as it would shortly become, but bad enough. Sometimes I needed help slipping a shirt over my shoulders. Sometimes writing with a pen or typing would be very uncomfortable. Because the pain would be there when I woke up  in the morning, naturally I thought I’d “slept wrong” on the offending joint, the way you can wake up sometimes with a stiff neck …

That never happened to you? Hmmm…

During the next six months the “slept wrong” pains increased in frequency. I wondered how in the world I managed to hurt myself so often. I really was that credulous; there really wasn’t any other explanation, as far as I could tell.  But I hadn’t injured myself. I hadn’t stubbed that miserably sore toe, or wrenched that aching shoulder, or jammed that painful pointer finger. “Slept wrong” was all I could think of to explain it because, well, I was just 30 years old. I’d never been sick. Oh, sure, I’d had the typical childhood illnesses—measles, mumps, chicken pox, colds, the flu. When I was 7, I’d had my tonsils taken out. As a teen-ager, I’d had a scary bout with pneumonia, but recovered without incident, and as a young adult I’d had a ganglion cyst surgically removed from my right wrist. No big deal. A couple of years later I’d given birth to my daughter using the Lamaze natural childbirth method of breathing for pain control rather than anesthesia. I was young, strong, vibrant and healthy, an American living in Northern Germany, working as a civilian for the U.S. Army, Europe.

Time passed. The “slept wrong” incidents were far enough apart in the beginning that I didn’t connect them, but then my feet started hurting. And not just now and then, but nearly every day. I’d wake up in the morning, swing my feet out of bed, touch them to the floor and yelp, because the mere touch was so shockingly painful it ripped a cry out of me. My feet felt like I’d been standing on them all night long without a break, the way they used to feel when, as a teen-ager, I’d worked at a fast-food restaurant and stood taking hamburger orders for 10-hour shifts. But back then, I recovered easily after a good night’s sleep. Now, my feet were killing me, and nothing I did could make them get better. They felt like someone had been beating them with bamboo sticks all night. I’d get up and hobble from bed to the shower, wimpering. I’d hobble on to work and keep hobbling around all day. When I got home in the evening I’d soak my dreadful feet in a hot bath, gritting my teeth and wondering what in the world I’d done to make them hurt so much. Were my shoes too tight? The heels too high? Were the soles not padded enough?

No, no and no.

At the same time, the incidents of pain and stiffness in my other joints became more frequent. They also moved into my knees and ankles. It was always one joint at a time. My right shoulder one day, my left knee the next. The pain got worse, to the point that it started disabling me. It started lasting longer, sometimes for two or three days at a time, and it would go away just the same way it would start: suddenly, without warning and for no discernable reason. Finally, bewildered and getting frightened, I made an appointment with the doctor. It was the first time since moving to Germany I’d gone to see him.

I told the doc about my feet. I told him about my shoulders and fingers, knees and toes, and how the pain would hit different joints on both sides of my body, one day here, one day there. He was non-committal, but sent me to the lab for a blood test and told me to come back in a week.

When I went back to see him, my doctor told me they’d found something called the “rh factor” in my blood. That, along with the symptoms I’d described, indicated that I had rheumatoid arthritis. He told me a little about it—that RA is an autoimmune disease, that it could someday disable me permanently, and that it’s incurable. He started me on a regimen of high-dose aspirin and sent me on my way. It was the first of many appointments with this same doctor.

That was in 1987. Honestly, I can hardly remember now how I reacted to the news. I wasn’t horrified or frightened—I didn’t know enough about the disease yet to be either.  I was a bit confused: I’d always thought that arthritis was the disease of creaky, sore joints that old people got. At 30, I was a long way from old. In time, I learned that what I was thinking of was osteoarthritis, not rheumatoid arthritis, and that the two weren’t interchangeable. I began facing the first of many years worth of the phrases, “You have arthritis? Oh, my grandmother has that, too.” Or, “But you’re too young!”

There’s so much I didn’t know about RA during the first decade after I was diagnosed. For instance, I thought that I was exhausted so frequently because I worked at a job ten hours a day, then grocery shopped, cooked dinner, did laundry, took care of my husband’s and small daughter’s needs, and walked the dog, all while dealing with a flared foot or knee or shoulder and the pain and disablement that went with it, all that in a single workday and repeated five days a week. Who wouldn’t be tired?

But I didn’t know that my fatigue was one of the symptoms of the disease. I didn’t know that RA could affect the soft tissues of my body as well as my joints: my heart, my eyes, my veins, my ligaments. I didn’t know about the complications and co-morbidities of RA, like tendinitis and bursitis. It’s probably a blessing that I didn’t, now I think of it.

I didn’t know anything about the drugs used to treat RA at the time. My doctor prescribed NSAIDs exclusively for the first year after diagnosis; then tried a series of DMARDs, including oral gold and plaquenil. None of them had any effect at all on my RA. The only relief I ever got was from prescription narcotics. Thank goodness for the gentle god Morphine.

During those early years my RA got much worse. I would have two or three flares a week lasting anywhere from twelve hours to three days at a time. They were all painful; once in a while, they were so bad that they disabled me completely, so that I’d have to call in to work sick. When I look back at those years I really don’t know how I did it, remembering as I do the climb up the stairs to our third floor flat; the walks I took with the dog while limping so badly I cried; the times I drove my manual transmission car with a flared right hand or left foot, whimpering with pain each time I needed to shift gears and praying I wouldn’t need to stop fast. I remember standing in the long grocery lines at the commissary, shifting from foot to foot because both feet hurt so bad it was all I could do to keep from moaning out loud. And I remember the relief I felt after a long, painful day at work, when I came home, put my daughter to bed and was finally able to take a narcotic pain pill, something I’d waited to take until everything people relied on me to do for the day was done.

*****

About RA and obesity: Recently, a certain television doctor/entertainer said, on the air, that obesity causes rheumatoid arthritis.

He was flat-out wrong.

Obesity might be the cause of many ills, including diabetes and heart problems, but rheumatoid arthritis is an autoimmune disease that has nothing to do with body weight. Medical science doesn’t know what causes RA.

Now, it’s possible that the TV doctor/entertainer meant to say “osteoarthritis.” If he did, he might have been right. Osteoarthritis is a degenerative arthritis, caused by wear and tear on the joints. Excess weight puts a great deal of strain on the joints of the lower body. While it’s usually associated with people in their 50s or older, osteoarthritis can occur in younger adults, too, particularly those who are overweight or obese.

Rheumatoid arthritis isn’t caused by obesity, but obesity can make rheumatoid arthritis worse in those who have it because of the strain it puts on the joints. People with RA are better off if they can keep their weight at a “normal” level for their age, height and build. Staying “fighting fit” keeps the muscles that support the joints strong, maintains the joints’ range of motion and flexibility, and makes people healthier overall. It’s a win-win situation.

The TV doctor has not, so far, corrected his mistake publicly, on the air or otherwise. It would be nice if he would, because he has misinformed thousands, if not millions, of viewers regarding rheumatoid arthritis. Those of us who cope with this disease would sure appreciate it if he’d make this right, because we didn’t do anything to bring RA on ourselves.

The fact is, RA can strike anyone—thin, fat, fit, flabby, young, old or in between, male and female, black or white or red or yellow. Rheumatoid arthritis doesn’t discriminate. It’s not a form of penance. It’s not a punishment or just desserts. It just is.

When I was diagnosed with RA I was 31 years old. At 5 feet and 4 inches tall, I weighed 130 pounds. I wasn’t an athlete, but I was strong, fit and healthy. Today, at almost 55 years old, I’m not as fit and I weigh 50 pounds more, but I didn’t gain that weight because of RA. I’ve remained active in spite of the disease. I gained weight because I over-ate, and because I ate foods that weren’t very good for me. I gained weight because my job had me sitting behind a desk most of the time. In the last four years I’ve lost an additional 50 pounds—and that didn’t happen because of RA, either. I lost that weight because I started eating healthy foods in healthy portions and started moving more—because of my RA, and in spite of it.

*****

My story, and my rheumatoid arthritis, is ongoing. I know far more about the disease today than I did even five years ago, thanks to the Internet and the new world the online RA community opened for me when I started blogging. I’m thankful that the RA I have right now is less painful and intense than it was during the first ten years after onset, and I’m thankful for the six-year remission I enjoyed. But it came back. The one thing about RA you can depend on is that it will change–today, tomorrow, next year.

I have far more hope now than I used to, though. There are many new medications available–the biologics, like Humira and Remicade and Enbrel–to treat rheumatoid arthritis than there were in the late 80s and early 90s. Though none of them can cure RA, these medications offer all of us who cope with this disease a chance to slow or stop its progress and a better chance at remission than we’d have without them. And today we know how important it is to exercise, to eat a healthy diet and to care for ourselves mentally and spiritually as well as physically.

If you’re reading this, you’re also experiencing the unique support, education and advocacy available for and about RA through the online community. It’s one of the best things I’ve found yet to help me cope with the day-to-day challenge of living well with rheumatoid arthritis.

UPDATE: As part of a blogpost on his website regarding World Arthritis Day, Dr. Phil has issued a correction to his recent remark about obesity and RA. Read it here.

What’s your RA onset story? In honor of World Arthritis Day, share it in comments. I’d love to read it!