Category Archives: Coping

The Healing Power of Music

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I remember my transistor radio. It was a bit bigger than a pack of cigarettes. I lived with that radio, or rather, it lived with me, the music constantly piping through to my ear. It soothed me and my teenaged angst while I cried my “96 Tears.”

I remember listening to the Beatles’ “Eight Days a Week” while taking down my much older sister’s laundry from the line. I would go to her house down the block from ours to escape the never-ending chores. Doing chores at her house seemed like a break, a holiday from doing them at home, where it seemed I did chores eight days a week.

Besides, she had a telephone before we did. A thick, black, clunky thing on which I could call the boy I had a crush on in junior high. Only to hang up when he answered. There was no call waiting, or caller ID back then so no evidence. I found his number by looking up his last name in the fat phone book delivered to every household that had a phone. To this day I remember his last name but not his first. Weird. And I can’t remember what he looked like either. I’m only sure of one thing: He didn’t know I was alive.

I remember sitting on the bench behind the house that held the wash tub where I’d scrubbed clothes against a washboard before we had a washing machine. I felt I was hiding though I’m sure the sound of my radio gave me away should my mother find another chore for me.  As I leaned back against the wall my sister appeared over the back fence like a disembodied head. Come with me to the store, she said. I sighed, but she was pregnant with her second child, so I got to my feet.

My radio of course went with us as we plodded down the hot, sandy soil of the alleyways to the small neighborhood store. I paid no attention to what my sister was selecting as we strolled through the aisles. At the checkout, I became painfully aware that she was short of money. She stared into her coin purse for a moment, then began removing item by item of her meager haul as she watched the numbers on the register decrease. Finally, the cashier said, you can pay me later, and my sister nodded her thanks.

I don’t remember the music on the way back. Perhaps it was “Magic Carpet Ride” which could whisk me away. I just remember aching for my sister as we walked in silence. She hadn’t needed me after all.

Fast forward about a decade or so and I see myself dancing to “Ladies’ Night” in my own kitchen late at night. The music now coming from a much bigger radio, one that I couldn’t tuck away and hide from prying eyes and perked up ears (Mom). But I had no need to anymore. 

After I put my toddler to bed, I stole time from my studies to dance until I was as hot and sweaty as if I’d spent an hour on an actual dance floor, all the endorphins streaming wildly. It was my therapy. I needed it to get me through those long and lonely years when my only true companions were my son and my textbooks.

When I left the sad north to head back to Texas, my collection of 8-track tapes accompanied me as I drove cross-country. I had a small suspicion that when I got home, I might find myself a cowboy who would teach me how to two-step through the rest of my days. But the only cowboy boots I saw and heard were the ones that clicked onto the pavement when their wearer jumped down from his red pickup in the middle of night, leering at me as he tried to coax me aboard.

He and his male companion had seen me alone and vulnerable at the bus station’s outside public phone waiting for my father, my car had broken down and had to be left behind in a one-horse town to get fixed. My dad arrived in time to save the day, but that incident put me off cowboy boots forever.

Instead, I chanced on motorcycle boots. We met amidst the loudest music, “Funkytown,” and he continued to make music in my heart for months. Even now, my soul sings when I remember his touch, his gentleness, his essence. His promise. The music remains, like “Brass in [my] Pocket.”

 Today my transistor radio has been replaced by another hand-held item, a phone that is a minicomputer. But regardless of its many high-tech capabilities, its most valuable feature is its ability to pipe music through to me. From my twenty-some Pandora stations, or my recently set up iTunes account. My pain relief, I mean my music, is always available. And though there has been decades of music released since the advent of that tiny radio, I find that my choice of music remains the same, primarily the art of the 1950s, 60s, and 70s.

In these soulful melodies lies the prescription that takes my pain away. That sends me back to a time that my teenage self felt was so horrendous, when in effect it was nothing, nothing, nothing.

The Worst Patient

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When I was delivering direct patient care, we were given a two-hour window during which to administer medications. If a med was scheduled for 1 p.m. (1300 in hospital-speak) it could be given between noon and 2 p.m. (1200 to 1400). It was one of the ways Administration acknowledged that we nurses had a lot on our plate and the day was only so long.

I don’t know if this is still the case at the bedside as I’ve been gone a long while now, and I don’t expect to ever return. The curtain has lowered on those days, but I am reminded of that window every time I take my own meds late. Or forget to take them at all.

These days I have only one patient’s needs to meet. There is only one patient for me to give primary care to. Only one patient whose meds I have to keep straight in my head. Me.

And I find that it’s not any easier. One does not simplify things, especially when that one researches and investigates every little thing. And at times does not even comply with the treatment.

I once confessed to the Nurse Practitioner taking my history that I was noncompliant with one medication. She paused in her note taking to look up at me, then we locked eyes and laughed. It’s common knowledge that doctors and nurses make the worst patients.

As it stands, the nurse in me is trying to come up with a workable plan of care for the patient in me. For a while now I’ve been toying with the idea of making a MAR for myself (Medication Administration Record). Or would that be on myself?

We used to get the MARs every day from the pharmacy; they covered 24 hours’ worth of documentation. I don’t need to get as specific, but I would at least need to list all my meds and the times they are due. That way I would be able to check them off, sign off on them so to speak, as I take them. And thereby no longer wonder did I take that calcium this morning? Or that Gabapentin last night?

As it is, there’s no way to tell. I have so many things on my mind, so many things that need to get done. And subconsciously, I don’t want to take my meds. Or more accurately, I don’t want to have a reason to need to take my meds.

But alas, I do.

I already have my phone set to alert me that Wednesday is Methotrexate Day. Unfortunately, every day is Plaquenil Day and noon seems to come around all too quickly. I swear there are less than 24 hours between noons. Or maybe it just seems that way. It’s that old noncompliance thing tugging at me.

So I’m thinking a “MAR” should keep me on the daily straight and narrow. Back when I supervised three separate nursing units, my last task each day was to list all the things that needed to get done the next day. Those were the steno-pad days, before the now ubiquitous computers. I would leave the hand-written list on the center of my desk so it was the first thing I saw upon opening my office door.

And it really worked. I got so much done that first year; it still makes me tired just thinking about it. But they do say that if you write down your goals, they are more likely to get accomplished.

It’s definitely come time to make myself another action plan. I just have to decide on the form, or the format. A dry erase board comes to mind. But I don’t think I can find room on the wall for one that big. Anyway, I don’t want it front and center, spoiling the “décor” of my home office. So I’ll design it on my laptop, then print it out so it can join the jumble on my desk.

I’ll program my phone to remind me to look at it. Or for it.

A Vignette

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“You have very pretty hands,” she says.

I am busy signing a stack of papers. We are finally doing the deed, filing last year’s taxes.

“I have Rheumatoid Arthritis hands,” I say, taken aback by this unexpected comment. “RA loves your hands.”

“They are pretty,” the tax lady continues. “Women pay for nails like that.”

“She’s always had pretty hands,” my husband pipes in, stopping me in mid “thank you”. Now I’m really stunned; compliments I hear, but never about my hands.

I become self-conscious as I maneuver my fingers to keep the sheaf of papers flipped to one side so I can sign and date the various documents. I’m just glad to finally get this chore done. I’m exhausted from having spent hours over the previous days adding up dollars and cents gleaned from the ton of medical and pharmacy receipts accumulated. Truthfully to no avail, or to very little avail.

I’d put this off all year, filing for an extension. An extension that was rejected, the tax lady now informs us, making the day chock-full of surprises. My pen still, I stare at her in concern, what exactly does that mean? No matter, she says with a shrug. I mimic her shrug and go back to my signing.

“Did you have a problem? Were you not able to file before?”

“No,” I tell her, “I was angry and didn’t want to do it.”

My husband laughs. “There you go,” he says to her.

I ignore him.

“I was angry about my identity being stolen,” I say. “I wanted to wait.”

“Yes,” she commiserates and goes on to tell us horror stories of how hackers are able to capture your private information. It’s a terrible thing to have your identity stolen and it’s left to you to prove who you are when you’ve done nothing wrong.

During the year-long process it took to resolve this, I couldn’t help but wonder, Who am I? And who in the world wants to be me?

But the one question that burned through my mind was this: If you went through the trouble of stealing my identity, why didn’t you also steal my RA? You can have that for free, whoever you are. No questions asked, ever. You can rest assured I will never try to get that back.

The prolonged process of filing over, I stick my copies in my briefcase and stand up.

“Thank you for everything,” I say, “now I’m going to go have a drink.”

She stands up as well. “Where are you going to go have a drink?”

“I’m taking her to this steak place,” my husband tells her, as I start walking toward the exit.

I feel her eyes follow me out, perhaps because it’s only noon.

(Written Oct 12, 2012)

Winning Hands

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It’s official. I am image 475 out of 1,073 images, as of this moment, on http://www.showusyourhands.org/interactive-collage/. It is humbling to see all those hands, a testament to what inflammatory disease cannot do to us. It cannot stop us completely, though it can and does give it its best effort. Together we are more powerful than it.

The images that touch me the most are the hands that are ace-wrapped or braced. I can feel the pain through the computer screen, a telepathy of sorts. I know intimately how that feels, and how difficult it is to do the wrap yourself, one-handed, and sometimes with the wrong hand, the non-dominant hand. On really bad days, one must needs wrap or brace both hands.

For the longest time, I was reticent to ask for help. Afraid to telegraph how ill I felt or how much agony I was in. I feared that would make me look weak. Maybe I didn’t want anyone’s pity or having them think less of me. But thinking back, I can see the pity in my staff nurses’ eyes as they opened a bottle of lemonade for me. I could not do it; I could not twist the cap off. Not only did I not have the strength to grip it, but the pain screamed at me if I deemed to even try. But even so, RA did not prevent me from running a department, and I can tell you, being a Nurse Manager is not for sissies.

As RA did its insidious work, it was the little things that affected me most, the little things that affected the big things. I had to give up my work at the bedside and the twelve-hour shifts, that turned into fourteen-hours at the whim of the wind. My feet burned after all those miles, my head hurt after all those hours, my belly grumbled having to make do with a liquid lunch on given days. Those parts of my body notwithstanding, I could take it and performed both as caregiver and resource. It was my hands that did me in.

When I first started out in my career, I worked in a surgical intensive care unit. Part of my uniform was the hemostat that I clipped onto my green scrubs, as were my stethoscope, scissors and surgical tape. You never knew when you were going to need those tools and could not waste time running to get them. Along with a pocketful of band-aids and alcohol wipes, we were good to go, ready for anything. At that time, the hemostat hanging from my scrub top in plain view did not bother me.

Fast forward about twenty years and I find myself reliant on that hemostat to perform various functions, like separating IV lines to change them. Even gripping their connecting ports with gloved hands gave me no leverage; my hands were gradually losing their strength and dexterity. That hemostat multiplied by two, one for each hand. Where before I wore the one proudly, now the pair shamed me and stayed in my pocket until I needed them.

This was before my nemesis had a name. By this time, my hands had a secondary problem. After all those years of scrubbing-in with a scrub brush, constant hand washing or cleansing with an alcohol rinse, and the wearing of latex gloves, they could no longer withstand the assault. I knew I had to move on and felt a deep sense of loss as I drove home after my last shift.

I soon dusted myself off and went to work in an office environment where I worked with fax machines, telephones and computers. I still delivered nursing care but by remote. It was while working there that the primary problem with my hands was diagnosed. I would have no further need for hemostats. And anyway, they were useless to open my lemonade with, so I asked one of my staff to do it. And they did, kindly.

***Above is an image from Wikimedia Commons of a curved tip and straight tip hemostat.

Today I’m Broke

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Strawberry

Strawberry (Photo credit: Wikipedia)

Some days I’m flush and I forget. I forget I have an illness. An illness that never goes away. That can only be contained. I equate it to living on a high wire. One from which you can never climb down. You are always there, suspended. Make a sudden move and you’re tumbling. And the worst part is not the tumble or even the landing; it’s the struggle to get back up onto that high wire. Because that’s where you are safest, on that thin grey line.

What makes me rich is energy. Some days my cup is full. Or at least, half full.

“You look great,” my friend says. We are out, dinner and a movie. One of our favorite things to do. And I do feel great. I treat myself to a strawberry margarita. After all, strawberries are anti-inflammatory. I’ve been doing my research. Strawberries are “medicine,” as is chocolate. And what better way to have strawberries than in a tall, cold, rim-salted glass?

That was two days ago and now it’s time to make another deposit into that good old energy bank. So soon. Perhaps if I had slept more that night I wouldn’t have leaked out so much energy. But the writing bug bit and I stayed up till the wee hours. Writing is medicine, too. Or at least, therapy.

Words have to be my greatest ‘disease modifying drug.’ Reading them and writing them. Forget the chemo; forget the steroid. I take them regularly, my little crutches. Sometimes they make me feel like the women of Star Trek, who became beautiful after popping pieces of colored jelly. As it turned out, that’s all they were. Placebos. It was actually the belief in themselves that made them beautiful.

I know my chemical drugs are not placebos and I know they help me, but I cannot rely on pills to keep me up on that high wire. I don’t want to rely on pills. I prefer to think of them as garnish, a sprinkle here, a scatter there. I’d rather the main course be the things I do that make me happy, make me feel worthwhile. Being productive sends my energy level soaring, gives me the balance I need not to tumble or stumble.

The catch-22 is, of course, that I must spend energy to make energy. Sort of like, you must spend money to make money. The trick is to deposit more than you plan to withdraw or you end up with a negative balance and no overdraft protection.

Which is definitely my case today. So when the question, “What do you want to do tonight?” arose, my answer was, “Rest.” I have learned my limits and more importantly, my limitations. I try to observe them and live within those confines. I have learned after all these years with RA to be faithful to me.

Therefore I will rest and refill my coffers; I have a long list of projects and deadlines requiring my attention. And I have no doubt that tomorrow will find me feeling like a million dollars again. For you know what else they say.

Tomorrow is another day.

And maybe next time I’m out, I will try a chocolate margarita.

Why not?

Life Is a Carousel

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Horse on Carousel, Princes Street Gardens, Edi...

Horse on Carousel, Princes Street Gardens, Edinburgh (Photo credit: Wikipedia)

Funny how life takes you around in a circle. If you’re not careful, it will do it to you time and time again, making you dizzy. And not a good kind of dizzy like you get from swinging your grand-daughter around. Her peals of laughter making your pulse rise, making your heart feel like it’s beating through your chest; your lungs expanding as the world whirls by, faster and faster keeping pace with your breathing. And when you stop, you find you cannot move, for up and down has been displaced.

But, you find you have each other to cling to. You have each other to laugh with. And slowly the kitchen stops rolling by and all settles back into its rightful place. The stove, still and squat, sits black and glum; the fridge looms over you in its stolid silvery stance. The granite countertop, mottled in black, silver and gray, no longer appears as though numerous nickels and dimes have been lodged within it.

You know it’s not really there, but you have caught yourself countless times reaching over to pick up that coin. Laughing at yourself, you swear it’d been blinking and twinkling at you. And like a mirage, it evaporated the minute you tried to touch it. It was nothing more than a silvery spot reflecting the brightness of the overhead lighting. The countertop plays tricks on your eyes, just like the twirling plays tricks on your brain.

Just like life plays tricks on your psyche. You think up is one way and it turns out, no; it’s down. Left is right and right is wrong. And no matter how you twist and twirl, you can’t make it go right side up. Or is it downside up?

Life is a carousel. A merry-go-round that is sometimes not so merry. If you’re lucky, you get a bench seat and a relaxing ride. But if you draw a bucking pony, you must needs hang on tight as the world whizzes by. Round and round it goes and where it stops, nobody knows.

Summit

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I’d forgotten the exhilaration. The heart pounding, the sweat pouring, the lungs breathing oh, so deeply.  The oh, so alive feeling. The crescendo, up and up and up, to that mountain peak, that climax so delicious when reached. My legs working at maximum expenditure, my arms reaching, my hands grabbing on so very tightly, holding on to that life-giving force.

No, I’m not talking about sex, though that does have its virtues. Especially with someone you love. I’m talking about exercise. It used to be my almost daily routine, more so than not. I looked forward to it. I longed for it. My stationary bike called to me, come, come, come.

And I would come. And then stay, for a long while, an hour, an hour and a half. I pushed and pushed, faster and faster, to find the limits of my endurance. I wanted to know how far I could I go, how many miles on my bike that went nowhere. It would keep track for me, if I so requested. Sometimes I didn’t want to know distance; just time and it would comply. I wanted to know how long it would take to hit my summit.

But, I never reached that climax, that peak. I found I could go on and on and on.  The only thing stopping me was will. How long I wanted to ride. It was a race against myself that I could not lose. No matter how hard I tried.

Until I stopped. I don’t even remember the exact reason. Some emotional upheaval. Some physical flare-up. Something I let beat me, suspend me, interrupt me. And that led to a very real flare, a flare we all know only too well, those of us who can claim RA as an unwanted companion. It took my hand, my right hand. Tried to claim it for its very own.

I gave in to the pain. For a little bit.

I let myself be led into a big dark hole. For a little bit.

And then, I fought back. And I will continue fighting back. Forever.

I’m back in the saddle and wondering about a little nugget I picked up during my daily reading.

What’s this about women reaching orgasm during exercise? Interesting. . .

Sleep-Inducing Figs

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With the help of steroids, I can hold and wield my pen. It is miraculous. Pen and paper are my friends. Friends that do not abandon me. Friends that do not betray me. Friends that do not grow tired of me. I carry them wherever I go. I write whenever I can.

I do not hesitate to write all over the white space of the latest book I’m reading. It is a book on writing creative nonfiction and the juices stir. Not even the margins are safe from my flying pen. While I wait during the interval between the Physician’s Assistant and the Rheumatologist, I scribble.

I scribble with my new pen; it feels right in my hand. It is where it belongs, the purple ink flowing resplendent among the fine black text. I’ve been reading an essay about artistic space. How you should carve it out of nothing if you must. How you must value it and not let anything take it from you. How you must snatch it from the very jaws of life.

Because life will attempt to take it from you, snaking out tendrils of despair to coil around your creativity, thereby starngling it. If you allow  it, if you succumb, it is akin to eating “sleep-inducing figs.” Partaking of this poison dish allows you to go through life somnolent, numb to the call. Under the influence of a narcotic that makes you quiescent.

The author’s words resonate with me. I recognize myself. I hear her; she is writing about me. About what has been me, so far. There has always been something else to do, someone else to do for. Compulsively, I would begin pieces, stories, journals, only to abandon them before finishing. Later, I would tell myself, I will write later.

Sitting in my doctor’s office, I realize later is now. Later must be now. I block out the sounds of both hesitant and purposeful footsteps along the hallway. I ignore the office staff’s susurrus voices and the other patients’ nervous responses, and I write. I write furiously and needfully, dreading the moment I will have to stop, my brain a flurry of words, thoughts and feelings.

I marvel at how I can grip my pen so easily, without pain. I feel grateful for this simple gift. I am nothing without a pen in my hand anymore. I jealously guard these moments while the margins of my book disappear in a sea of purple. Every few minutes, I glance toward the open doorway; I am like a starving man guarding his food. Words are my sustenance.

Eventually, my doctor walks in and, reluctantly, I close my book. We talk, we plan, we concur. I’m to stay on steroids to control the pain. I’m to see a pulmonologist to evaluate the persistent productive cough. He reaches for his phone and immediately contacts that office for me. They will call you shortly to verify the appointment, he says.

I gather my things and stand up. He smiles and shakes my hand, holding it gently, always so gently. I walk out of the hospital in which I worked for eighteen years. In the parking garage, I decide to walk up to my car. My body feels light as I climb the sunny open stairwell. When the door to the fourth level slams shut behind me, I realize the only sign of my exertion is a fire in my chest. And that fire makes me feel strangely alive. Acutely awake.

Hunting and Gathering

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I’m gleaning, in search of a diet. There’s got to be a way to beat this thing. Or at least, beat it down for a while. Just a little while. I find that Rheumatoid Arthritis can reduce your life span. I’m OK with that. I’m not out for more years. I just want the years I got left to count. To count for something.

I would rather be productive than just take up space. I don’t want to be a burden, on anyone. I would prefer pain to that. I know that is not my choice to make, but I can at least make my wishes known. And I have.

So, I sped read a book today, all about using diet to fight autoimmune diseases, one of which is RA. That is an ironic word, autoimmune. A fight against yourself. Even if you win, you lose.

It was good reading and led me to a list of my favorite foods. How lucky is that? I crave fruit and that is tops on the list. I could live on fruits and vegetables for the rest of my life. However long that may be.

Tomorrow I will shop with a new shopping list in hand. Into the cart will go apples, apricots and cherries, which I love. I can have all citrus and sugar, maybe I’ll start drinking fresh lemonade along with orange juice. I can still have my tea, though; can’t face my day without my tea.

Peaches, pears and plums, oh my! And lo and behold, alcohol is allowed. Won’t have to give up my occasional glass of Frangelico. It’s something to look forward to; I hide the bottle in my office. It’s sweet and tempting.

Turkey and beef are included, along with various fish. My vegetables, on the other hand, are reduced to carrots, celery and lettuce. Oh well, I will make do.

It is a three tiered diet. Chocolate, what I call my medicine, is on the second tier. I have to wait till I feel better before I move on to the second tier foods. So I cheated, had my last piece of chocolate as I write this.

I will say goodbye to chocolate as long as I can say goodbye to this hacking cough. Let go of my lungs, RA! You can’t have them.

Not yet.

Transition

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It’s amazing what a difference a few days can make. Sometimes you are lucky enough to reach a point in your life where you think things will always be the way they are. And if they are not, it is only because they got better. You become complacent and accepting. You allow yourself to get comfortable with what is your now. You throw caution to the winds and laugh in the face of your existence.

And then, you are brought up short.

You have made no plans for things to get worse. You have no reserves to face the negative and you are left breathless as you face that painful awakening. When you realize that something you grew to take for granted is gone from you. When you discover that warmth was fleeting, like the bloom of a flower and no longer there. You are thrown into a tumult. Such are the true colors of this thing called life.

I find that RA mimics my life. The roller coaster that is my life. The upswings are short but thrilling. The downhills long and arduous. When you are on the way up, you can’t look down. Maybe that’s what makes them seem like they will last forever. The downside is out of sight, and worse, you refuse to even consider it. You choose instead to revel in the moment.

I suppose that is how life is meant to be lived. Otherwise, how could we face the sun each morning if we knew it would only bring sorrow and darkness. But, the light is merciful, if we let it.

After four days of steroids, my hand is almost back to normal. Almost. I call upon it and it is there for me. It is not what robs me of sleep this night. I give thanks for that, while I wish there was a magic candy for what truly ails me.

Alas, there is not.