Category Archives: Coping

My Hands, My Hands

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.

Thy Name is Fickle, Thy Way is Stealth

I keep forgetting I am ill. I forget it for days at a time. I run around at a speed reminiscent of my 30’s. I feel twenty years younger, which is a nice change of pace. I used to feel ancient, ready for death. Not anymore.

My illness brings me up short. Literally. It stops me cold and won’t let me forget for long. It is selfish and narcissistic.  It likes to be front and center; it doesn’t appreciate being shoved aside. It derives its satisfaction from reminding me of my limitations.

I give in to it. I have no choice.  It is not from defeat, but rather from strategy. I know how to beat it. It does not know how to beat me, for after a few days of rest, I arise from my bed ready to face life head on once more.

Rheumatoid Arthritis is a fickle disease. You never know from day to day how you will feel, how it will affect you. You don’t look sick. There are no outward signs of your illness, unless your joints are permanently twisted by it. The most obvious being your hands. It likes to attack your hands.

Time was when my hands were so stiff and swollen; I could not bend my fingers to grip the steering wheel of my car. Driving my daughter to school was agony. I would shake my hands at each stop light, as if that would shake off the pain. Or at the very least loosen them up, but it didn’t work. I drove with my palms.

I worry about my hands; I’ve always liked my hands. As I said to my first rheumatologist, when he told me I had a “good case of arthritis” in my hands, “I need my hands.” His curt reply was, “Everybody does.”

I know everybody does; I was merely reaching out for help. It wasn’t forthcoming. He almost let me die. He left me untreated long enough for fluid to collect around my heart and lungs, compressing them. I should bill him for my hospital stay.

That’s another thing about RA. It assaults your whole body. The “arthritis” in its name is misleading. It doesn’t differentiate between joints and organs.  Any site will do for its malevolence.

You are supposed to be wary, not invite it in. You walk a high wire, making sure you don’t overdo in order to maintain your balance, your equilibrium. And when there is no choice, when you know you will be stressed, you need to block some time off to rest and recoup. And that is not just hearsay!

I am reminded of that time and again. The resulting lethargy is a weight that inundates you, making it hard to think, hard to move, hard to breathe. You are surrounded by a fog of pain. Putting a simple meal together tests your limits. The FATIGUE is so pervasive and overwhelming you think of it in capital letters.

Tai Chi helps me combat my illness. My present rheumatologist wants me to practice it every day. In an ironic twist, it is Tai Chi that made my illness lunge forward and knock me down this time. For I became so involved with our Branch and the preparations for our 20th anniversary celebration this past Saturday, that I wore myself down to a confrontation with RA.

And RA always wins.

For the moment.

RA can stop me forever, but while I still live it can’t stop me completely. It can’t stop me from writing or composing my article for our Tai Chi newsletter. Tapping on the keyboard is a great exercise for my hands. It keeps my fingers strong and supple. I have my grip back and I mean to keep it. I need it to seize RA by the neck. And never let go.

The Game of Life

I’ve never been a gamer, in the current sense of the word. I’ve been around for five decades making me BC, Before Computers. My kids are gamers, some more serious than others. We’ve had a plethora of gaming systems.

My eldest son had Atari. Does anyone even remember that? It was cutting edge once upon a time. Then we had Nintendo, Nintendo 64, Game Cube, PlayStation, both console and handheld. Then, of course, came Xbox.

I admit I do own an Xbox 360; my sons gave it to me this past Christmas. I wanted its peripheral, Kinect, for its dance program. I use it as part of my workout regimen. The sensor recognizes your motions and gestures and can tell if you’re following your avatar dancing on the TV screen correctly, letting you know if you are “Flawless” or if you need work. I get my share of “Flawless,” though I definitely need work.

But, that is a total body workout that helps keep me supple and mobile. It doesn’t really work my hands and RA loves to attack your hands. A couple of months ago, I noticed that the base knuckle of my right thumb was very painful. It had swollen to twice its size. I cursed; it made me so angry. I’m right handed; I kind of need that thumb. And besides my hair, my hands are the part of me I like best.

I doubted it was my Rheumatoid Arthritis, as my left thumb was fine. With RA you get mirror images of inflammation. Twin effects, so to speak. It had to be Osteoarthritis. OA is a result of wear and tear; it happens to the best of us. After 20 plus years in the Nursing trenches, my fingers have a touch of OA. On my next visit, my rheumatologist confirmed my right thumb affliction was definitely OA.

I cursed some more. For one thing, it hurt like hell, especially in the mornings. It reminded me of the years I would cry myself awake as I worked all my stiffened, swollen and painful fingers back to life, with those very same stiffened, swollen and painful fingers. I thought I had put that pain behind me. But, at least it was only one knuckle, albeit a very essential one.

The other thing that bothered me was its appearance; it looked grotesque. I didn’t like that one bit. No old lady hands for me. Oh, no! Up with that I will not put!

One night when I couldn’t sleep, I discovered my Smart Phone has a game called BrickBreaker. It’s a cross between tennis and racquetball. You manipulate and control a small silver ball with a paddle round the “court” using the trackpad. The object is to hit and break the bricks lined up in various formations in the different levels. Each level, of course, is more intricate and difficult than the one before.

Being right handed required I use my right thumb to slide that trackpad back and forth. It hurt, but it was fun as well. I remembered what my old coach told me about playing tennis, hug center court, that way you can easily move left or right.

I was quite slow at it at first. I had to watch that little ball, anticipate where it would land so I could bounce it back up again with the paddle. It would gather speed and ricochet like crazy around the screen making me miss it by a mile. There were many “try agains” and “game overs.”

But for me, the game is never over so I kept at it. It gave me a lot of satisfaction to bust those bricks. I saw RA and OA written all over them. Take that! You evil-doers!

I got good; I’m up to level six, though I’m having trouble beating my own high score of 2,550 points. But, I will. From all that exercise, my thumb knuckle is practically back to its normal size and appearance, not much different from my left. And best of all, it hardly hurts, to move it or to look at it.

Now I mainly play the game for fun, in the middle of the night when I can’t sleep, when worry over my daughter keeps me awake. I get lost in the challenge of that little silver ball and revel in blowing those bricks away. Over and over again. I suppose you could say I’m a “gamer” now. But of one thing I’m sure, I have always been a player.

Bon Voyage

Taj Mahal, Agra, India.

Image via Wikipedia

It’s five o’clock in the morning and I’ve been awake for hours. Thinking, thinking, thinking. And there is a lot to think about. There is always a lot to think about, isn’t there? And the more you think, the more stressed you feel.

Stress is an aggravator, especially to someone with a chronic condition like RA. Over the years, I have noticed that stress exacerbates my symptoms. Of course, I blame stress for triggering my disease in the first place. Maybe I was predisposed to develop this, but I tend to feel the stress I lived under brought it on so early in my life.

I have come to terms with the fact that I have this cross to bear. It has become lighter in the past few years and for that I am grateful. Realizing that others have it so much worse, makes me feel like giving thanks every hour on the hour. And I do give thanks, for my wellness.

This morning it is not my RA that has me in knots, but my child. My child is going away. She is going around the world. And it scares the living daylights out of me. She chose as her study abroad to actually go abroad, a round the world cruise.

I tell myself it is the opportunity of a lifetime. I would have jumped at this chance myself. But, I would have been the one enjoying it, not the one left behind to worry. Big difference!

I will try not to worry, easier said than done. For now my days will be filled with getting her ready to go. There are supplies to be bought, packing to do, flight to book, and excursions to plan. She is excited and I am terrified.

I know that every day my stress will increase a notch, till it reaches its peak on the day she flies away to another country to board the ship. Part of me hoped her financial aid would not come through, though she would have been devastated and in truth, I would have been as well, for her.

But, the fates have aligned. She wants to be a travel writer and this trip will fill her bucket list, as far as fodder for writing material for years to come. I am happy for her, I am.

She will keep a journal of her adventures and I will keep a journal of my days waiting for her return. While she is seeing the Great Wall and the Taj Mahal, I will be envisioning her joy. But, while she is riding camels in the desert and shark cage diving in the deep, I will be home biting my nails.

My various writing projects will keep me busy; Tai Chi and exercise will help me ablate the stress, but there’s no getting around it. It’s gonna be a long four months.