Category Archives: Resilience

Like Loki

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An unfunny thing happened to me once I got home. I began to hurt.

While I was away those four weeks, my body settled into a rhythm of its own making. I’d expected that being in unfamiliar surroundings for that long would raise my stress level and thus make my disease rear its ugly head.  But, that didn’t happen. Instead, I found a calming, physical peace. A peace that I now miss almost as much as I miss holding my new grandchild in my arms.

Maybe it was sharing the first few weeks of her life that had me feeling so high pain could not intrude. There was no time and no room for it, no portal left open for it to enter.

Unknowingly or instinctively, I scheduled a buffer, a few relaxing days in Key West. A cushioning, so to speak, between There and Here. Between Away and Back. Between Dream and Reality.

I related all this to my rheumatologist, my confessor of all things physical. And he said the strangest thing. Sitting across from me at his desk, he stopped his note-taking and looked at me. “When I travel I feel fine, it’s when I come back that I start to hurt,” he said.

I could only nod mutely. I am always taken aback when someone understands and verbalizes exactly what I am trying to say. I’m more used to being misunderstood or ignored even.

And then I remembered; my confessor and I share the same disease. Of course he knows what Rheumatoid Arthritis feels like! How it can grab you and swing you around and slam you into the ground time and again, sort of like the Hulk did to Loki in the movie, The Avengers.

That was a funny scene, more so because it was quite unexpected. The audience couldn’t help but laugh out loud. Loki deserved to be treated that way, but as a god, puny though he might be, he was left unfazed and unhurt. All that was wounded was his pride. For the moment.

Unlike Loki, we are neither gods, nor descendent of frost giants. We are warm and human, and don’t deserve to be treated this way; no one’s laughing.  Yet like Loki, we stand defiant, sure that we can withstand anything, before we find ourselves flying through the air being swung by our feet, helpless.

And like Loki, we get up. We don’t stay down. We fight back. Once that look of surprise leaves our face.

My Lover, My Friend

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I’ve been trying to say goodbye to my friend called Prednisone. Or at least, so long. He’s a good buddy to have around at your beck and call, as long as he knows his place. His place in the medicine cabinet, that is. But, I think he loves me more than I love him, because he’s gotten a reprieve. Not only will our connection not be decreased, he will stay on board a bit longer.

I was all set to start our goodbye process, a process that can take weeks, even months. We’ve been intimately involved since March when my right hand suffered a blow, or rather a blow-up. It became so swollen and painful, it was basically rendered useless. My left hand jumped into the fray and compensated as best it could, but the only thing that tore at the devil called Pain was my bestest friend.

Candy, I used to call him, though he is a bitter pill to swallow, literally. Every morning he’s there, waiting patiently for me. I want him, but I don’t want him, even though he does make me feel good, spry, nimble, young again.  Like a lover, he gives me a good feeling all over, once that initial swallow of tea takes him down into my innermost.

We will have to continue our relationship through the rest of the year, I suppose. He has a new area to caress and concentrate on. My chest, right over my heart. How ironic is that?

Costochondritis, my doctor calls it. A fancy word for swelling of the cartilage that connects each rib to what is commonly called the breastbone. This pain is not as severe, but then I don’t use my chest like I do my hands. Though one thing it does have in common with the hand pain is that it’s there all the time. All the time.

So, when I leave for The Big Easy in a few days, my good buddy will be first and foremost on my list. I was going to take him along anyway, as insurance. Now, he will go with me as assurance.

Hugs

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The story goes that my sister used to cry on the way home from school because all her friends had a brother or sister except for her. She complained that all she had was Risas, the dog. My father named him that because he wore a perpetual smile as a result of an injury to his mouth.

Rosa had to wait nine long years before she had a living sibling. For during that interval, the tale goes, there was one other child, stillborn, miscarried or died young, I don’t know. But I know there was one. My mother told me.

What she didn’t say was whether it was a boy or a girl. Instinct tells me it must have been a boy. Or, at least, that my mother believed it was a boy. Thus when I appeared healthy and hearty, it must have been salt in the wound.

That is the only explanation I can come up with as to why growing up, I never knew a mother’s hug.

Logic tells me that she did indeed hold me. For one thing, she had to hold me to feed me.  They were not in any position to hire someone to do that job. And that does offer me a sort of comfort. But, as I don’t remember being weaned, I don’t remember being held.

Reading others’ words describing the feel of a mother’s loving arms when they were children fascinates me. I try to imagine and put myself in their place. To feel that warmth. To inhale her smell of fresh-baked bread. To feel the silk that is her hair as she leans her head against theirs. To know that the world can’t harm you while you are safe in her arms. And though I try, I can’t relate.

We were poor, but hugs were free. Yet, I grew up without that essential basic need. That nurturing sensory input.  It’s been a hole in my life that I dared not confront. Best not to look back. But now I realize, I’ve been searching for that safety zone all my life.

***Risas means “laughs” in Spanish.

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.

What Empty Nest Syndrome?

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General Electric's "foot candle" adv...

General Electric’s “foot candle” advertising novelty (Photo credit: Wikipedia)

The quiet is palpable. Especially of a morning as the sun peeks in through half-opened blinds above my head, one footcandle at a time. They are rarely fully closed, those blinds, no one else peeks in. I sense the light before I see it.

My eyes remain closed as slumber releases my senses, one by one. The fabric of the pillow case rests smooth and silky beneath my cheek. I snuggle further into the pillow relishing the give, as well as the comfort of being held within that cottony bowl.

A coolness grazes my naked arm; the sheet has been kicked aside during the night. The whir of the air conditioner buzzes in my ears. I shiver and pull at the sheet; it’s all I need between me and the blast of air flowing towards me. The warm sheet and the cold white noise envelop me.

When the AC stops, I listen. Some days I can hear the birds chirping, bringing in the new day. But most days not; the thick impact-resistant window panes muffle my outside world. I doze in the silence. A silence so powerful I can smell it. A silence that is both foreign and familiar. For I dreamed of it often, this silence.

The sun inevitably forces its way inside; full daylight teases my eyelids, nudging them to open. And when they do, I see the silence first. It is bright and shiny, reflecting off the mirror. It is dark and somber, ingrained within the furniture.

The door is open; the hallway empty. The silence calls to me, Come, there’s no one here. I feel inherently drawn to it, but I know there are someones there, not here, but there. I grab the gadget that connects me to them and check for messages, none. Good. All is well. The silence glows.

I rise to meet its radiance. It accompanies me during my morning routine, a muted sentinel guarding my every move. It then follows me into the hallway stillness; nothing else is moving, not even sound. My bare feet glide over the cool slick tiles as I pass by other open doors.  Doors that lead into silent static voids lying in wait.

I hurry on into the glorious brightness that bathes my kitchen, sunlight streaming in unabated through the clear French doors. The sunshine visits me often, but this silence is now my constant companion. Today, as well as yesterday. And I suppose, into tomorrow.  I stop transfixed and take a deep breath, inhaling it; its aroma is intoxicating.

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.

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.

The Crook of a Crooked Finger

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So, Rheumatoid Arthritis rears its ugly head again. I knew it, deep down inside. I can feel when it’s stalking me. And it has been for weeks now. My right hand has been basically useless. I can type with nine fingers, but holding a pen in that hand, Aaiiyyy!

My rheumatologist says, “It’s incredible the disability RA can cause. You can have several joints affected with Osteoarthritis and still function, but RA can knock you down with only one joint being affected.”

Oh, so very true.

Still my heart sank at the thought of it being RA. I’d been doing so well.

“You sure it’s RA?” I asked. “Even if it’s unilateral?” RA usually attacks both sides of the body equally. It is its well-known calling card.

He laughed and said, “Just wait.”

I laughed with him and said, “I don’t want to.”

“What we need to do is start Prednisone,” he said.

“Yes,” I said, looking up at him as I lay on the exam table. “That’s what I want. Some of that candy.”

He laughed again as he examined my joints, bending my arms and legs every which way. No problem there, yet.

I’d first been seen by the Physician’s Assistant, as is the usual routine for my rheumatology visits.  He and the rheumatologist are like an extension of my family by now. He tried to examine my hand, but I held it out of his reach. I was afraid to let him, or anyone, touch it.

“It might be the tendon that’s inflamed,” the PA said. Trigger Finger, he called it. “He might give you a shot,” he went on.

With that, I placed my hand in his and he very gently manipulated my index finger. It could bend at the second joint, but not at the third, which joins the finger to the hand. He turned my hand over and pressed on my palm. I tensed up, but there was no pain.

“When you make a fist, does it hurt?” he asked, making a fist of his own hand.

“I can’t make a fist,” I told him and flexed my fingers, minus one.

“You might get a shot,” he repeated.

“And what will that do?” I snapped. “Give me 48 hours of relief?”

He shrugged and left me with the dreaded vision of a needle in my hand. I tried to relax and read while I waited for the doctor. I made up my mind I would do what I had to do to stop this pain. I couldn’t bear it anymore and there are so many things I need to do, like finish the quilts I have pending.

The doctor came in happy and upbeat as usual. He didn’t even try to touch my hand, one look sufficed, and there was no talk of needles. After reviewing his notes from my last visit and my lab values, he bade me step up on the exam table.

“We need to go up on your Methotrexate,” he said, once I was back sitting across from him. “It’s trial and error, you know.”

“I know,” I said. I’d been so happy to go down to one 2.5 milligram weekly pill and looking forward to one day taking none. Now I could kiss that dream goodbye.

“We’ll go to 10 mg and then we’ll work back down to 5 mg. You were doing fine with 5 mg.”

And I had been. It was a valiant effort to try to get off that drug, but I must face facts. There is no end to this disease and no end to the vigilance required.

“Now I will write you a prescription for that candy,” he said with a smile. “You need to have this on hand always.”

I smiled back. You can bet your bottom dollar I will keep that handy. No more three consecutive weeks of suffering for me. I’ve got things to do!!!

My Hands, My Hands

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You are stealthy,
You stalk me,
My nemesis, you
I fear no one,
But, I fear you
I am helpless
I cry before you
Against my will
You have no pity
With your attack
Binding my hands,
With your presence
My hands, my hands

I wrote this poem back in July of 2011. In October, I took a picture of my hand. My left hand, as I am right handed; they looked the same at the time. My goal was to collect evidence once a year and keep a visual record of their appearance. This way, I could keep track of my RA. Not that I want to claim or own RA, but that is a choice I was not given.

I had a pretty good rest of the year. I felt better overall. More limber. I became more involved with my Tai Chi organization. Attending several classes a week and volunteering to write for and edit their newsletter. It offered me an outlet and a chance to make more friends.

In November, I saw my rheumatologist and almost fell off my chair when it was revealed that my CRP was three. Three! This main measure of inflammation, which is the bane of RA, was normal. I could not believe it. My blood levels had not been normal since 2004, when I was first diagnosed with RA.

There is no way to describe how I felt. I’d been given a gift. A gift from above. I drove home in a daze, the sun seemed brighter, the sky bluer, the palm trees more beautiful. Even the heavy Miami traffic seemed lighter and I was driving at rush hour. Traveling at 10 miles an hour, when I could move, just helped prolong my jubilation. I could not wait to tell the people who mattered to me, who cared about me.

When I saw the doctor next in January, I noticed he had not included a CRP level in my usual labs. I’d been looking forward to seeing if my numbers had held steady. But, I was feeling great. I’d thrown myself into quilting, having made three quilts in less than three months. My hands could handle all those fine motor skills. Yes, my fingers could be a little stiff in the morning, but it was not every morning. I marveled at that. It gave me hope.

The doctor asked how I felt about decreasing my Methotrexate dose once again; this is a chemotherapy drug used to combat Rheumatoid Arthritis. He smiled at me as I almost danced to the checkout desk. That meant I’d be going down to one pill a week. One! Down from the maximum dose of ten pills or 25 milligrams, which I’d been started on seven long years before. Now, I was looking at the next step, none. I would be left solely on vitamins and a daily anti-inflammatory. I could not contain my exhilaration at my near victory over this scourge.

And then came February. I was busy working on my fourth quilt. My dragon quilt for our Tai Chi Chinese New Year’s party had been a hit. It was raffled and won by a member of the Branch Council. She decided to donate it for display at the center. I brought it home to add a sleeve to the back of it for hanging. This was something that required handwork.

I put it aside for a bit. I wanted a break from it. A week, I told myself, and then I’ll do it. I concentrated on the next quilt, to be named Aloha Sunrise, for a sister-in-law who loves Hawaii and went to school there. I’d special ordered the fabrics from Hawaii itself.

I machine quilted half of it and the next day my right hand was hurting, I blamed it on wrestling with the quilt as I maneuvered it through the machine. I gave my hand a day of rest and then resolutely finished the rest of it. After that, my hand really complained. I hung up the quilt and decided to give it a good long rest,

That was over two weeks ago; my hand is still angry with me. It is quite swollen and painful. I am limited as to what I can do with it. Thinking it was overuse, I not only stopped quilting, I stopped doing pretty much everything except writing. Yesterday, my left hand decided to join the bandwagon. And that is a unique sign of RA. You get the double whammy, bilateral pain, insult to injury.

I’m hoping that it is coincidence. That my lucky numbers of one and three do not add up to thirteen. A number symbolic of bad luck. I see my doctor again in nine days and we shall see not only what transpires in those nine days I must wait, but what my numbers will be like then. Meanwhile, I probably should consider buying stock in the pharmaceutical company that manufactures my over the counter pain pills.