Monthly Archives: August 2012

Winning Hands

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.

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Because There’s So Much More To Life

Earlier this year when RA claimed my hand for a few months. I got it back!

I was indulging in wishful thinking a few days ago, wishing there was a way to make the day longer than twenty-four hours. The main reason I felt this way is because RA can be so selfish and unpredictable and voracious that you never know when it’s going to eat up a big chunk of your precious hours. As Alice commented on my previous post, you have to plan activities around your RA. If you don’t give it the attention it feels it is due, it hits back, robbing you of even more time.

I set up this blog to help me cope with this disease. Maybe subconsciously I thought that if I gave it some special attention it would ease off on me. And for a year my sporadic writings pretty much focused on the disease. And then a few days ago, I had an epiphany. This blog should not be about RA and its effects on me. It should be about me and my effects on it.

What partly triggered this change of focus was my visit to www.rheumatoidarthritisguy.com. I was looking for kindred spirits and I found pictures of so many. Pictures of their hands, hands doing all sorts of things: resting, gardening, playing musical instruments, typing. Hands not deterred by their particular inflammatory process. It made a profound impression on me and as more pictures were being requested, I submitted the one above to www.showusyourhands.org. I tagged it “a quilter’s hand,” but I could easily have called it a writer’s hand.

So this is a sort of sendoff to RA. I’m pushing it into the background. It may frame my life and I know it will creep into what I write, but it’s not my life. I’m busy. Busy with my quilting, busy with my writing, busy with an intense self-study on writing fiction. I have five books to study and tonight I’m cuddling up with On Writing, a book by one of my favorite authors, Stephen King.

And kudos to RA Guy, a true super hero!

Today I’m Broke

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?

What Empty Nest Syndrome?

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.