Encouraging words

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.

Stumped?!

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.

Grumbling gratefully

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.

Challenges

“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!

Birdbrain

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.

Oh. Ow!

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 30th 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 28th. 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.

Dragon lore

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.