The Prednisone Taper Club, I mean.

What? There’s no club? Sure there is. I read posts by RA bloggers all the time about the stuff. Seems like just about everyone who’s had any form of autoimmune arthritis or disease for more than a few years has at least tried it.

And if it’s not the taper they’re writing about, it’s about the love-hate relationship they have with prednisone. They write about how well it lessens or alleviates their rheuma pain—even as they curse the stuff for its several nasty side effects: increased appetite, which leads to often substantial weight gain; a “moon” face and a build-up of fat into a hump right behind the neck.

Yuck.

But I have taken a prednisone taper. It was to clear up an incredibly intractable case of poison oak on my calf, and it worked. I was, as you might expect, delighted. I’d been trying to get rid of that horrid, crusty, bloody, weeping rash for five or six weeks without any success. The predisone cleared it up for good in a matter of days.

But prednisone for RA? I’ll be honest. After everything I’ve read about it on the RA blogs, I’d decided I never, ever wanted to take the stuff. I’m already overweight and struggle constantly to keep from gaining even more. Taking a drug that makes me ravenous, even if it can reduce pain, seems like something I’d be better off saying “no” to.

But this hip bursitis and its constant, slowly worsening and now grinding pain has made me willing to consider it. Prior to my Saturday appointment with my rheumatologist, I wrote down all of the kind suggestions my readers made a couple of posts back, when I was complaining about the physiatrist/pain doctor who told me he was stumped. Several of them advised I ask about prednisone. So, as soon as Dr. McA and I were done with greeting one another on Saturday, I unfolded the sheet of paper I’d written my list of questions on.

“You have questions,” he grinned, sitting down. “Hit me.”

Have I mentioned how much I like my rheumy? I discovered that he’d even looked over my chart before he’d walked in; he knew that the other doc had cut me loose. And he knew exactly why I was sitting in his office now. Not RA. Bursitis.

I asked him whether increased inflammation due to increased RA activity might be causing this ugly case of bursitis of mine to be so stubborn. Then I asked him about prednisone. And Neurontin (gabapentin). I asked him about Flexeril (a muscle relaxer)  and Elavil (amiltriptylene).  I asked about taking a new NSAID.

Dr McA looked at my most recent blood test results and said they looked great. My sed rate was just fine. He didn’t think increased RA inflammation/activity was behind the hip bursitis, at least not specifically.  He reminded me that bursitis is often a co-morbidity of RA, though. And then he surprised me. He said that even though the blood tests looked good, he’d order an anti-CCP within my next blood test, since it’s a much more accurate indicator of inflammation than the routine sedimentation rate test. If my inflammation level is up, then we’ll discuss a medication change in response during my follow-up appointment with him in a month. A month! Normally, I have to wait three months between appointments with him. Another surprise.

And they just kept coming. I should say here that I’d gotten so bummed by the physiatrist/pain doc that I didn’t have much hope when I walked into Dr. McA’s office. After all, he’d referred me to him in the first place, saying that the physiatrist could do a much better job than he could on the steroid injections into the bursae. And, since the physiatrist is a physical therapy specialist, and a specialist in pain relief—putting me under his care for this only made sense.

To have that special doc tell me he was stumped as to what else to do about my bursitis, give me a prescription for a drug that doesn’t work well for me anymore and then tell me to run along was demoralizing, to say the least.

But back to the surprises.

Dr. McA thought trying a prednisone taper is certainly worth a try. He prescribed one. And when I told him what a hard time I’ve had sleeping, and asked him for help, he spent some time with me weighing the pros and cons of Neurontin vs. those of amiltriptylene or nortriptylene. The first was originally developed for seizures and the other two are venerable anti-depression meds. But all three work surprisingly well on nerve pain and, as a side effect, cause significant drowsiness. They’re often prescribed as pain relievers. So, in the end, we chose nortriptylene.

And finally, smiling, he said, “You look like you’ve lost some weight. Am I right?”

My jaw dropped. Then  I smiled. A big smile. You know, there’s almost nothing more encouraging and mood-lifting to a woman than having someone notice a weight loss and say so, especially when she’s been dieting and sticking to it religiously. And I have been. I’m ten pounds down, so far. When I told him he assured me that getting lighter on my feet might help relieve the bursitis pain, too. And of course, we already know that getting down to fighting weight will take a heavy load off the joints in my hips, knees, ankles and feet.

This morning I picked up the prednisone taper and the nortriptylene. I started the taper with my lunch. As I write this, an hour or so before dinner, I haven’t noticed any difference in my hip pain, or the mild RA pain in my hands, which also remains more or less constant. But between Joe the physical therapist and my terrific Dr. McA, I have a lot more hope than I did.

I’ve joined the club.

Leslie, who writes the blog, “Getting Closer to Myself,” wrote a post today about chronic illness and asking for help. In it, she asks “If you are chronically ill, are you sick, too?”

Leslie has lupus. Recently one of her relatives told her that she didn’t view Leslie as “sick.” To her, people with cancer or mental illnesses qualified as “sick” but Leslie, whose lupus frequently makes her feel perfectly awful, doesn’t. Leslie’s lupus strikes at random, and like most of us who cope with chronic pain and illness, she tries hard to appear perfectly healthy and well even when she’s not.

Dictionary.com defines “sick” as “afflicted with ill health or disease; ailing.” The same website defines “ill” as being “of unsound physical or mental health; unwell; sick…”

Obviously, you can have a chronic illness and have the flu, too, just like you can have a broken leg and a bad cold. But I have never thought of myself as “sick” or “unwell” just because I have rheumatoid arthritis. Certainly, it’s a disease that can make my body unsound and ailing, but those conditions aren’t constant.

Even the hip bursitis I’m dealing with right now doesn’t fit the meaning of “sick,” to me, even though the pain from it is constant. Instead, I think of it, simply, as pain.

Like Leslie’s relative, when I think  of “sick,” I think of someone with the flu or a stomach bug or pneumonia. And, like her, when I think further into the other, various meanings of the word, I think of a pedophile or a murderous madman like Charles Manson. People like that are truly sick. But I don’t think of Leslie and her lupus. I don’t think of myself.

This is not to say that I am not occasionally sick with the symptoms of RA. But I think of it more as being “ill,” and as being temporary. I am not a “sick chick,” as a group blog about chronic illness calls itself, in the plural. To me, that phrase brings up an image of several preciously delicate female baby chickens with the vapors, draped languidly over multicolored fainting couches, each one fanning herself weakly, and with a jeweled vial of smelling salts close to hand.

I really don’t fit the bill. Sure, I have an autoimmune disease that sometimes makes me feel tired and ill, and sometimes makes my joints stiffen and become so painful that moving is difficult, if not impossible. RA permanently disables many people who get it, but hasn’t done that to me yet. And even if it does someday, I still won’t be “sick.” I still won’t be “ill.” I’ll simply have RA, and when I’m not flaring, I’ll feel just fine.

“Sick” isn’t another word for “chronic illness.” It’s just sick.

And as for asking for help, which was the main focus in Leslie’s post? Not looking “sick” or acting “sick” when we’re flaring makes it pretty hard for people to understand that we do have a chronic illness that occasionally flattens us. And not appearing or acting sick definitely makes it hard for us to ask for help, since we’re proud of our independence, work hard to hide our disability, and really dislike admitting defeat, which is what asking for help often seems like.

These issues will always be a part of having a chronic illness and coping with chronic pain. They always have been. And there’s no easy solution that I can see.

Still, I’ve learned over the years to swallow my pride and ask for help when I need it. I don’t always like to, and the people I ask help from aren’t always gracious about providing it. That, too, is simply reality. Life doesn’t always give us roses. If we’re lucky, we have friends and relatives who  do their best to understand us and treat us with love and compassion. But if they don’t, we need to understand that sometimes, they’re just simply clueless. If we haven’t told them the truth about our condition or explained it to the best of our ability, then we can’t expect instant empathy from them.

If we have explained and they’re still not helpful or understanding, then we have to look inward to pull from our own reserves of strength and courage. We also need to widen our circle of friends, and try to find the sort of people who are gifted, like us, with toughness and empathetic compassion.

It’s always a challenge, isn’t it.

So I’m laying on my back on the bed this morning doing the stretching exercises that Joe taught me. Near the end of the 15-second hold of each stretch, I notice myself groaning. Yes, they hurt. Not horrifically, but just enough to make me vocalize my discomfort.

My old cat, PIB (Puss In Boots), who I brought to my Mom’s townhouse when I realized that

Not PIB, but so like him it's uncanny...

caring for her would be a more long-term occupation than I’d originally thought, walks delicately over to my stretched self and gazes at me curiously. He starts purring and reaches a white-socked paw out and carefully, gently, touches my cheek. Then he tucks himself into the L-shape made by my head and shoulder, curled up and warm as toast. His purrs are loud in my ear.

I do the rest of my stretches with a goofy smile on my face, my groans reduced to soft grunts, and those only when I forget to breathe deep through the stretch. It’s just incredible, the power our animal brothers and sisters can draw on to ease our distress.

Another lovely gift.

Joe came out to call me back to the Physical Therapy clinic’s inner sanctum. He was smiling, but his face fell as I got up and walked toward him. “Oh no! You’re limping!” he exclaimed.

“Good morning, Joe,” I said. “Yeah, I am.”

In his office, he looked over my chart. “Looks like Dr. H cut you loose.”

“He did. He said he was stumped.”  I sighed, unable to hide my frustration. “Basically, he gave up on me.”

Joe gazed at me. “Well, I’m not giving up on you. So how about we get busy.”

We went over the stretching exercises he taught me last week. Silly me, I’ve been doing the standing exercise incorrectly, so, chuckling, he showed me how to get it right. That done, he hooked me up to a TENS machine with a heavy-ish heat pack on my left (the sorest side) hip for a 15 minute session. My, that felt strange. But good, too.  I nearly fell asleep; I only managed about two hours of sleep last night. If he’d turned the light off, I would have, in spite of the fact that the hip I was laying on hurt like a son-of-a-gun. Joe followed the TENS treatment with 15 more minutes of ultrasound. And, when we ran out of time, he told me that from today on, until he tells me otherwise, I walk with a cane. He wants me to give that left hip a break.

He also wants me to avoid stairs. I gave him a wry smile. “I’m taking care of my mother at her home right now,”I said. “The bedrooms are all upstairs.”

“Well, try not to go up and down more than you absolutely need to, then.”

I promised him I’d do my best.

To my relief, Joe set me up for three more PT sessions, each a week apart. So next week, we’ll do TENS and ultrasound again, and he’ll show me how to use a foam roller. And maybe, depending on how I’m doing, more stretches.

He also told me to try my TENS machine at home. Three times a day, both hips, 15 minutes each. It’s a good thing I don’t have an outside job right now.

He was very encouraging. And what’s more, when Joe said goodbye to me today, my left hip felt a bit better. The good feeling only lasted a couple of hours, but I’ll take it.

I’m not sure why, but I continue to be surprised by how much a positive attitude, on my part and on the parts of my doctors and therapists, helps. Attitude alone doesn’t cure disease or relieve pain, of course. But it helps. It sets up a positive energy. Smiles and cheerfulness are really beneficial too.

I know this. I’m a constant, probably annoying, advocate of the glass-half-full outlook on life. But sometimes, even I have a hard time maintaining it. After my gloomy appointment with the physiatrist on Monday, I really needed Joe’s smile and encouragement. And while I know it’s his job to be encouraging, I also know he wouldn’t be a physical therapist if he didn’t want to help people.

What a contrast to Monday’s doctor. Perhaps he, too, started out wanting to help people, but he seems to have lost his passion. Or perhaps because I’m not an athlete, but only a middle-aged, overweight and un-fit female veteran complaining of a rather common ailment—and I failed his treatment—he just got disgusted with me and decided I wasn’t worth his time. I may be overstating the situation, but that’s how he made me feel, and I didn’t much like it.

Thank goodness for Joe. Thank goodness he wants to keep working with me. And thank goodness he gave me some hope today.

P.S.: And thank you, from the bottom of my heart, to all of you who commented on my last post. Your words of kindness and support lifted my spirits right out of the hole, and I’ve taken your suggestions seriously, writing them down so that I can ask my rheumatologist about them this coming Saturday afternoon. (To my utter amazement, when I called I was offered an appointment with him this weekend! I’d expected not to be able to see him until late May at the earliest. See? I just must keep my outlook on life positive. Really, it’s on my side.) Anyway, thanks again.

Physiatrist-type doctor to Wren: “Well, I’m stumped.”

He’s referring to the fact that steroid injections into both hips, twice, have provided no relief at all to Wren’s painful bursitis. In fact, it’s much worse now than it was.

Wren to Physiatrist: (gapes)

P to W: “In most cases, bursitis tends to resolve over time on its own in spite of our best efforts.” He grins in a self-deprecating manner.

W to herself: Oh, isn’t he cute? He’s “stumped,” so I just have to live with it. I hate him.

W to P: (a bit acidly) “So I just have to get used to it? I’ll always have this?”

P to W: “I know it hurts. I have a torn meniscus and I’m in training for a 100-mile marathon. It’s a matter of perseverance and balance. You just keep doing the stretches and, here, take this Vicodin for the pain. I don’t see any need for a follow-up.”

W: “Right. Well. Thanks anyway.” (thinks to herself as she presents her backside to this jerk: Next time you practice for that marathon I hope you trip and skin both knees.)

So, that’s where it stands. The pain/physical therapy physician/specialist my rheumatologist referred me to is out of ideas regarding my bursitis, except to give me another prescription for narcotic pain meds. I have an appointment with Joe, my PT, on Wednesday, so perhaps he’ll have more stretches, etc. I can do, and maybe, someday, they’ll help relieve the inflammation and the pain will finally go away. “Someday” is the operative word.

Since I was at the VA hospital anyway, I had my RA and routine blood tests done today. I also made an appointment with my primary care doc to see if she’ll prescribe me something to help me sleep through my bloody aching hips, since the fancy pain/whatever-he-is doc told me I’d have to discuss that with her when I asked him for something to help me sleep at night. Sleep aids, it seems, are not his thing.

Tomorrow  I’m going to see if I can get an appointment with my rheumatologist. He told me not to come back until May, but I think I need to see him sooner than that, if I can. See, I figure that my inflammation levels must be off the charts right now. The hip bursitis pain is 24-7. My hands ache constantly and I’m having intermittent flares of varying intensity in other joints all over my body. Shoulders. Elbows (!! Never had flares there before!!). Ankles. Even, I think, that funny little joint in the larynx, since I’m hoarse off and on these days for no good reason I can think of, except RA.

So it seems pretty obvious to me that the RA drugs I’m taking at the moment aren’t working very well. Perhaps if I can get the RA to calm down, the bursitis will too, since it’s most likely being triggered by the RA.

Man, I’d like to tie that smug doc’s shoelaces together.

Grrrr.

After another lonnnnng night of flipping from one hip to the other, over and over again to relieve the ache, I got up stiff, in pain and grumbling again this morning. I don’t like to grumble, so the fact that I was doing it just made me even more grumbly.

grumble grumble grumble

But then I thought, “Hey. You’re stiff and achy, but you did just roll right out of bed. Lots of people with RA can’t do that. They have to lay there for a long time, hurting like hell, before they can work up enough courage to face the pain and make their bodies move. Be glad.”

And so I am. My RA is being pretty decent to me right now, keeping its presence down to random stabs and twinges. Hands ache, but tolerably, and there’s no impairment. I’m glad. Grateful. Believe me.

It’s the hip bursitis driving me nuts and ruining my sleep each night. And as we all know, missed sleep only sets us up for more pain, which causes more missed sleep, which… you get my drift. I’m doing the stretching exercises Joe assigned me religiously. I’m icing and heating. But I hurt a little more each day.

So I’m grumbly.

I can walk. Maybe not for long distances, and I can’t stay on my feet for more than 20 minutes or so before the pain goes ugly, but I can walk. Lots of people with RA can’t. I’ve been there. I’ve been through times when every single step was unbelievable agony. I’ve been totally immobilized by pain. But not now. I can walk. I can move.

I’m grateful. It’s a blessing.

The pain I’m dealing with in my hips is like loud background noise. Mostly, I’m used to it and don’t hear it anymore. But now and then it intrudes, rudely, snapping my attention to it. I growl and do my best to ignore it. Mostly, I’m successful.

In the past, I’ve had rheuma pain that, as hard as I tried, I couldn’t ignore. The pain became my world; I lived within its filter. It filled my every waking moment and colored every perception.

I’m deeply grateful that this bursitis pain, as mean as it is, isn’t as bad as that. So grateful.

Up at my house in Camino, it’s snowing and it’s been snowing off and on for weeks. Steve, Matt and Cary have had to dig out their cars and put chains on to get to work and to the grocery store. But here at Mom’s place in the low foothills, it’s only raining. It’s 20 degrees warmer down here. She has central heat. I don’t have to cart heavy firewood into the house from the woodpile or feed the woodstove to stay warm.

Another blessing.

So, stop with the grumping, I tell myself. Chin up, chest out and all that rot. Smile. I’ll see the pain doctor in a couple of days. He may have a solution; I live in hope. And later next week, I’ll see Joe again. Maybe he’ll have some more ideas, too. More hope. Bursitis, unlike rheumatoid arthritis, is curable.

Grumbling begets grumbling. I’m determined to stop doing it.

“Stretching exercises. Twice a day. Three times, if you can handle it, pain-wise. Then ice. Ten minutes, each side. Then heat for twenty…”

So said Joe the physical therapist a couple of weeks ago. I’ve been doing just as he instructed. The exercises are uncomfortable, but they don’t hurt me, so I’ve gone ahead and upped them to three times a day, and also upped the number of repetitions for each one.

I just switched my big gel-ice pack from my left hip to my right. I’m waiting with crossed fingers for the latest dose of Tramadol to kick in. So far, the PT hasn’t relieved any of my pain; if anything, it’s increased it. I have another appointment with the pain doc on Monday. More cortisone injections? Are there other options? Can bursitis be cured?

Hear that growling sound? That’s your Wren.

Never mind. I’ve got a challenge ahead today: I’m taking my disabled uncle, a Korean War-era Marine, to the VA hospital for an appointment with his eye doctor. Uncle J suffered a severe stroke about eight years ago. It left him mostly blind and mostly unable to walk without a walker, and when he’s out, he needs a wheelchair for mobility.

My favorite Aunt is his caretaker and usually takes him to his appointments, but she needed a break, and since I’m very familiar with the VA facility, I offered to help out. I’ve done it a couple of times now. Uncle J likes my company and is comfortable with my company and care, so this works out well for all of us.

Except for my bloody bursitis hips and, of course, my bloody rheuma. Neither is bad enough, at the moment, to stop me today, but both are aching and twinging and making me want to do nothing more than curl up with my ice pack and my heat packs. I want to whine and complain about the unfairness of it all. I want someone to coddle me and rock me and make it all better.

Heh. Real world: Mom wants to coddle me, but she’s the one who needs the coddling right now, so we’re sort of passing the effort back and forth. That makes me smile, you know? And it’s good that she’s feeling well enough, and strong enough, that I can leave her alone for a while in order to help my aunt and uncle out. Aunt P really needs the rest; she’s cheerful and tough as nails, but sometimes, at 75 years old, she just wears out.

I’m here. I have nothing but time. I can do it, and I’m happy to. And honestly, it’s good for me to have others who need me. Helping my elderly relatives takes my mind off my own woes, and that’s nothing but good. Helping them puts my energy, relative youth and strength to good use. Best yet, doing this has given me an opportunity to get to know them again, this time as an adult rather than as a child, which is where most of my memories of my aunt and uncle come from. It’s good to talk to them and share those memories.

Helping Uncle J has also been a real lesson for me regarding the obstacles disabled persons face every single day. Along with their disabilities themselves, these obstacles range from curb-cuts to narrow walkways to irritation and condescension from strangers. It’s a different world. I thought I understood it, having been partially, if temporarily, disabled many times over the years by my RA. But really, I had no idea. I’m getting a real education.

I need to get ready to go. Outside, we’re having a truly amazing storm, with high winds, rain and sleet. So, it’s time to take a deep breath, lift my chin, square my shoulders and deal. Wish me luck!

Insatiable curiosity. I have it. And I can blame it directly on my Mom and Dad.

I was still toddling around in droopy diapers when they bought, in 36 payments, a full set of the Encyclopedia Britannica for me. It was a hugely expensive, audacious purchase. Dad had just gotten his first job as a CPA after serving as a Marine in the Korean War and earning his degree with the help of the GI Bill. Mom, a plucky, independent young woman who’d moved from a country town in northern Idaho to big-city San Francisco all on her own, had been forced to give up her job as an operator with Bell Telephone when she became pregnant with me. They were very young and very broke, but they wanted to make sure that I’d have the whole world at my fingertips as I grew up. In the late 1950s, the Encyclopedia Brittanica was the way to do it.

They invested well. I absolutely loved that mysterious set of heavy, finely bound, rich brown books. They were big. When I first turned the pages with my five-year-old, eager fingers, the top edge of Volume Aa-Az (the title stamped in shiny gold leaf along the thick spine) stood as high as my waist. The mighty World Atlas, which had its own, deep slot at the back of the neat, cherry-wood bookcase that came with the set, was nearly as tall as I was. I could just about get one of the alphabet volumes out of the case by myself, but if I wanted to look at the Atlas (and I did, frequently) I had to ask Mom or Dad to get it for me. I’d open it up on the floor and study the maps of all the countries in the world while laying on my tummy.

It was in Volume Ba-Bz that I first came across the Cedar Waxwing. It was one of many birds depicted in the smooth, shiny,  full-color plates under Birds. I spent hours looking at them, fascinated, imagining how they must look in real life, fluttering among the branches of trees and flying free through the blue sky. I gazed in wonder at the illustrations as art, as well, intrigued at the skill and talent of the unknown artist who’d painted each bird in such incredible, accurate detail. A budding artist myself, I wondered if I might be able to do such a thing someday.

But back to the waxwing. Something about that bird just mesmerized me. I loved the jaunty little crest the male of the species sported like a cocked hat on his head, but more than that I loved the markings and colors both genders were adorned with. Rich, cinnamon brown bodies,dusted with pollen-like yellow on their tummies. Gray silk wings. Black bandit masks over their eyes. Their tail-tips looked as if they’d been dipped in thick, brilliant yellow paint, and there were tiny dabs of vibrant red on their wings, like afterthoughts. Amazing. Beautiful. I imagined God with a tiny paintbrush, putting the final touches on his latest creation.

I grew up loving birds. With the help of the color plates in the Encyclopedia Brittanica, I learned to identify most of the local ones. But I could never find the Cedar Waxwing in the trees and shrubs around my home. Eventually I gave up looking for it, figuring that it must live in a different part of the country, somewhere far from Northern California.

So you can imagine my surprise when, 30 years later while visiting Mom and Dad at their home here in the Sierra foothills, I saw a flock of cedar waxwings land in the branches of a buckthorn tree just off the back deck. I watched, astonished, as they hopped and fluttered from branch to branch, eating the tiny, black berries just as fast as they could.

“Mom and Dad!” I whispered fiercely. “Come here! Cedar Waxwings, a whole flock of them! I didn’t know you had those here!”

Of course, by the time they came to look, the little birds had flown away. My parents weren’t familiar with the species and, wouldn’t you know it, they’d given that grand set of encyclopedias to the local hospice thrift store years back. I couldn’t even show them. Enchanted, I looked for those little birds every time I came to visit after that. But I never saw them again.

Until yesterday.

I was in the little bathroom off the kitchen, brushing my teeth. It was a little too warm in there, so I’d opened the window to let in some fresh, cool air. I happened to look up and glance out. And there, in the branches of another buckthorn tree 15 feet away, was a flock of Cedar Waxwings.

“Mom!” I hissed. “Come in here! Hurry! It’s them!”

“Who?” She came into the bathroom, frowning.

“The Cedar Waxwings! Those little birds I saw at your house back in the 80s that you didn’t know anything about! Here they are again!” I was nearly beside myself with excitement. Mom peered out the window.

“Oh, they’re beautiful!” she exclaimed. We stood there for three or four minutes, watching them, and then the whole small flock once again flew off and was gone.

I know it seems silly, but I feel as if I’ve been given a precious gift. I’ve been able to see, close enough to observe the little crest and glowing paint-dipped tail and wings, a bird that has fascinated me since I was a small child. A nomadic, busy, social little bird, about the size of a sparrow, that isn’t native to my home, but that only passes through briefly as it heads north with the early spring.

The other gift that came with the sighting was the memory of those wonderful, heavy encyclopedias and the hours I spent as a child gazing at the gorgeous color plates of birds and other animals. The memory of the almost rice-paper thin pages, densely printed with words and line drawings back and front, top to bottom. Thousands upon thousands of pages, chock-full of the big, mysterious world and everything in it.

Those books were my own quiet, private playground for many years. What an incredible gift my parents gave me.

I got to see a physical therapist today. Finally.

Joe checked me out, asked a ton of questions, and gave me four stretching exercises to do twice a day. He had me do the first set of the day while I was at the clinic so he could show me how to do them correctly.

I like Joe.

And once again, I have to say that I like my VA health care. Joe the PT has to be one of the most empathetic people I’ve ever met. (Either that, or he’s a fabulous faker!) When I told him how long I’ve had rheumatoid arthritis (23 years) he winced. When I explained that my hip bursitis has not only worsened over the last several weeks, but that it’s attacking both hips, his eyes widened and he gasped. There was nothing histrionic about his reactions; he simply, truly, cared.

I said that this bursitis has really been a pain in the butt. Joe grinned. “Literally,” he said.

Did I say I like Joe?

My right hip is stiffer and has less range of motion than the left. I figure that this is because of the RA, which used to attack that hip joint with great intensity. My rheumatologist has tested the range of motion in that hip, had x-rays taken and subsequently discounted any problem with it, but today, as I was attempting one of the exercises, it was clear that I couldn’t easily move that hip in the required way. I could move it, but it was far more difficult than it was on the other side. And, to my dismay, I discovered that using my left hand to help pull my right hip toward my left shoulder (while laying on my back) was a problem, too. My left hand immediately yelled with pain over the stress.

And so, Joe got a towel and we looped it around my knee, and grasping the two ends, I was able to use my left hand to pull my hip into position. Why it was easier and less painful to grasp that towel in my hand rather that my knee is a mystery to me. But it was. Amazing.

After the session with Joe, my hips became much more sore. He said to expect that for a while, since the idea here is to stretch the tendon that slides over the greater trochanteric bursae (hip bursae) so that it doesn’t get so irritated and inflamed. In hip bursitis, it seems that not only are the bursae themselves inflamed (in my case, because of RA); that tendon is, too. It gets sore and tight, and stretching it out will, in time, relieve the pain.

The exercises will also help to strengthen several of the muscles that move the hip.

I did them all again tonight, one set of repetitions of each exercise on each side. OMG. Ow, ow, OW! It’s funny, because the exercises themselves weren’t painful, nor was stretching the tendons. What hurt was laying on my side on the carpeted floor—which meant laying directly on my badly inflamed, really aggravated hip bursae. And now, as I sit up in bed, laptop computer on my lap, my hips and butt are killing me. I’ve iced both hips, as instructed, and took some tramadol a little while ago. With luck, they’ll calm down enough for me to sleep soon.

I’ll be seeing Joe again on the 30^th of this month. He’ll check my progress, and said he’d probably give me a cylindrical-shaped foam roller that I can use to massage that tendon and bursae. We tried it today; it was painful, but I could manage it. Joe said we’ll wait until that tendon stretches a bit and, hopefully, I’m having less bursitis pain.

I’ll be seeing the pain doc again on the 28^th. If this current pain isn’t better by then, I’m going to request another round of steroid injections, a different kind of pain medication, and something to help me sleep at night. I’m convinced that I’ll be able to handle the pain of this bursitis better if I can get more sleep. Four or five interrupted sleep hours a night just isn’t doing the job.

I’m hurting like hell tonight, but I’m still hopeful. And I like Joe.

My Dragon. He’s awake.

Sure, he’s still sleepy. He’s clumsy, a little disoriented, his dreams shredding away in slow motion as he stretches his limbs and carefully uncurls his long, spiky tail, which he switches back and forth like a cat when he’s alert and hunting.

He has outrageous morning breath. Dragon-breath. It burns.

The Dragon yawns like a cavern. Snaps his jaws closed. A hot bolt flashes through my knee, causing me to cry out in pain and surprise. Then, just like that, the pain is gone. I flex the joint, shake my head and go about my business. I soon forget the incident. But down in the basement of my mind, in a battered trunk closed tight with a big padlock, a memory twitches. Once upon a time, a long time ago, I’d have felt that pain, shrugged, and blithely gone on my way, unaware of the danger ahead.

Not any more. The padlock clicks open and the memories fly out. See, I’ve been this way before. Here there be dragons.

Am I childish, giving my rheumatoid arthritis a shape, form and personality, however imaginary? Maybe I am. But it helps me cope with the fear that crawled out of the trunk along with that old memory. It reduces this huge,  incurable, dreadfully painful and disabling disease into a monster of more reasonable, less frightening proportions.

See, dragons aren’t nearly as scary.

Today, when the Rheuma Dragon bites, I’m ready. I’m wearing a fine, strong coat of mail; it’s rings are made of interwoven leflunomide, plaquenil and sulfasalazine. Over my mail I wear the bright, hardened armor of knowledge. My sword is sharp, light and strong, forged in the fire of hard-won experience. My spirits are high. My face and body are streaked with the magic blue woad of hope, mixed liberally with laughter. There is no better weapon against my Dragon than this. It’s my first defense—and my last. It gives him pause.

I know the Dragon can hurt me. He can dent my armor with his thick, sharp claws and wicked teeth, but he cannot overcome me. Armed as I am, I can strike back at him, weaken him, make him hurt so that he creeps away for a time to lick his wounds. And while he’s gone, I recover, too. I grow stronger. I learn from each battle. I look for new weapons.

And laughing, I prepare for the next fight. Because here there be dragons.