Tag Archives: Rheumatology

A Funny Thing Happened on the Way to My Grave

It was 2004 and calamity struck. In stages. It started the previous Christmas Eve. My doctor called me. Doctors don’t call you on Christmas Eve just to say hello. My daughter needed a biopsy, ASAP, he said. She was subsequently diagnosed with invasive thyroid cancer. Something we didn’t know until the second pathology report, and that necessitated two surgeries. Two weeks apart. The surgeon had tried to leave a smidgen of thyroid, so she wouldn’t be dependent on medication for the rest of her life. She was nineteen.

By April, we’d made it through radiation treatments, and then came May. I severed the tip of one finger trying to pry the stopper off the drainage hole of a large plastic planter, with a knife. My plants always bring me a sense of peace, working with them, or just communing with them. I felt the knife go through my finger as blood spurted. I grabbed a paper towel and jammed the finger end back on. It had already gone as white as the paper towel. The ER attending had been a plastic surgeon back in India. My finger survived intact, though for many years it was excruciatingly sensitive to touch. Nerves have a long memory.

Meanwhile, I was feeling weak, having generalized pain, along with localized pain to my joints. My stamina was decreasing rapidly, making me glad for my office job. I knew that my ICU days were a thing of the past; my body could no longer sustain the hectic pace. The rheumatologist treated me for arthritis, and though he did mention the possibility of RA, he did nothing to diagnose it or treat it. In July, while leaving his office after my final visit to him, my sister called. My father, who’d been in the hospital, had died.

I dreaded the three-hour trip back home. The necessity to change flights in Houston. The need to run from one terminal to another, carrying heavy luggage along with my heavy heart. I felt I was short-changing my father, thinking about myself instead of him. But, oh the pain! In my body, and in my soul.

Upon my return, I had my PCP refer me to another rheumatologist. “This man is going to kill me,” I said. The soonest I could get an appointment was for mid-October. I hoped to make it till then.

October 3rd found me lying on an ER bed, in a scene straight from TV. I watched it all from above. Or maybe I only imagined seeing it, as I had been on the other side of that bed countless times.

It turned out not to be anything as obvious as the hammer-fall of a heart attack. No, it was something more insidious. Something that slithers toward you, with its own intrinsic ebb and flow. Something that can be innocuous or deadly. The bane of RA sufferers. Fluid.

With the passage of time, fluid had been collecting not only in my joints, but also around my heart and lungs. Till one day, I could no longer stand for the few minutes it took to shower, nor could I speak well enough to make myself understood.

The new rheumatologist’s first words, after hearing my history, made my eyes fill with even more fluid. “Don’t worry,” he said, placing his hand on my arm, “We’re going to find out what it is.”

“IT” turned out to be RA, and though he started to attack it aggressively, I continued to worsen. It had been allowed to grab a stranglehold on me, and it didn’t seem to want to let go.

I resigned my management position of the busy telephone triage department; I couldn’t keep up with all its intricacies. I remained part-time, but that did not help matters. Being tied to a desk made my hips ache so. Holding the phone to my ear while typing on a computer keyboard made my wrists and elbows scream with pain by the time my six-hour evening shift ended.

At night, I longed for the pain to subside just enough to let me sleep a little. And fearing that death was on the horizon, I retired. I had to conserve my dwindling physical and mental energies for my youngest child. It would be two more years before she went away to college. She needed me, and I needed to give her my last days.

But then, a funny thing happened on the way to my grave.

I began to get better.

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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.

A Fog of Pain

I thought I was just tired. Raising three kids and managing a nursing unit can make anybody tired. But, then it became fatigue, lethargy. A fog settled around me. A fog of pain. It persisted; I would find myself at a stoplight and wonder how I got there. I told my teenager, I cannot drive your friends anymore. I was afraid, afraid of an accident. It became harder to function, I felt I was swimming, my fog had become a swamp.

I was seeing a doctor, a rheumatologist. Or so he called himself. He never deigned to touch me, I realized. How to examine my joints if he never touched me? I was sicker every time I saw him, yet he didn’t see it. “I am not a pill pusher,” he said to me in the open office area. I had no idea why he’d said that, I had not said anything and we had not talked about pills. I find that amazing. I am a registered nurse, yet in the initial darkness of my illness, I didn’t question.

One day my left hand was so swollen, I could not touch my thumb to any of my fingers. I could not close my hand. He took one look and ordered a cortisone shot be given to me. I could not unbutton the cuff of my sleeve. I could not grasp the button. The nurse did it for me and injected my arm. The next morning I bounded out of bed like it was twenty years in the past. It was a heady feeling, mobility. I could move! I could get out of bed without first planning how to minimize the pain of moving. It was wonderful! I became drunk on painless motion.

Of course, that only lasted a few days, the euphoria of pain-free motion slowly wore off as the pain and swelling returned. I went back to the doctor. He had x-rays taken of my hands and feet. “You have a pretty good case of arthritis in your hands,” he said. I thought about my sewing and quilting, my work as a nurse.

“I need my hands,” I said.

“Everybody does,” was his impatient response.

He recommended an over the counter anti-inflammatory and hand soaks. He said, “You have osteoarthritis and you might have Rheumatoid Arthritis, a double whammy.” Yet, he basically did nothing.

I went to see my primary physician. I requested a referral to a different rheumatologist. “He’s going to kill me,” I told him.

I had to wait two months to see the new rheumatologist. My condition deteriorated slowly. Two weeks before my appointment, I woke up feeling sick to my stomach. I had no energy, sitting up in bed was an effort. Something felt very wrong. I rested in the morning; I had to work that evening. Finally after lunchtime, I got up to shower, thinking that might make me feel better. I ran out of breath in the shower. The room spun around me. I gasped for air.

I managed to call my unit, I managed to form the words.”I can’t come in, I’m sick.” My chest felt in a vise; there was no room for oxygen, the harder I tried to breathe, the less air I got.  At the ER, they whisked me into the back. Within seconds there was an army of people around me, sticking needles into me, sticking Nitroglycerin under my tongue, sticking EKG leads onto my body, sticking a nasal cannula in my nose.

I watched it all as if it was happening to someone else. How was it possible that it was me on that gurney? I was used to being the one rendering care, not the one receiving it. There was silence amidst the cacophony. I had crossed to the other side.