Rheumatoid Arthritis, My Temporary Body Snatcher

The body snatchers arrived when I was twenty-three. Now at fifty-two years young the body they left me with requires a new trade-in pod. I'll gladly drift asleep early if this was at all possible.

At twenty-three years old I was a young wife, a mother of a three month old baby girl, deliriously enthralled with my life. I was a trim size seven, with long dancer's legs and a lyrical voice. My life was consumed by my passion for music, and I sang and dance around every possible opportunity. A passion for stardom was foolishly placed aside because of a young innocent belief in the romantic notion of love, but at this point in my life everything seemed to be right on key.

One morning after a fitful night's sleep I got up and tried to bounce out of bed as usual, only to collapse back against the mattress with agony. Every joint in my body throbbed and flames were scorching my flesh. The mere moment of one finger was excruciating. I felt like I was dragging a five hundred pound weight as I slowly inched over to the side of the bed. I had a determined personality and a motherly instinct, and this forced me to get up, stand, and attend to my crying infant.

I dragged myself painfully around the entire day, wondering if I was suffering from some twenty-four hour flu bug. I avoided breathing on my daughter, basically managing to get through the day by laying down every moment she settled down for her naps. When my husband arrived home he found me curled up fetal style in bed, profusely perspiring and moaning in my sleep. He agreed with me, believing I had some kind of bug and just needed to rest. It was a week-end thankfully, because he was able to take over the majority of our daughter's care while I turtle dragged myself back and forth between the bed and bathroom.

Sunday night arrived and I felt no better so I decided I'd call my physician the next morning. On Monday my husband woke me up and I attempted to sit up. After three agonizing attempts I realized there wasn't any possible way I could manage to do it on my own. Totally frustrated, panic set in, and I had no other choice but to allow him to physically carry me to the bathroom, assist with dressing and getting our daughter ready. He contacted the doctor, carried me out to the car, raced back for our daughter and picked up my mother before driving to the doctor. I was sobbing hysterically, wondering why my body suddenly failed me.

Thoughts that I was dying because of some foreign muscle sapping disorder raced through my mind. I just had a baby, what was going to happen to her? I'd never get to see her grow up, marry, or have my grandchildren.

My doctor entered the examining room, asked me a few questions and examined me silently, gently moving my joints as I clenched my teeth in pain. He rendered a possible diagnosis of, "severe viral postpartum infection," even though it was three months post my giving birth. He ordered antibiotics and complete bed rest, along with a slew of blood tests to be performed immediately. Suffice it to say my test result's returned in two days and I received a solemn phone call from my doctor, informing me he needed to see me immediately.

This time he didn't examine me. He sat me down and said, "I'm sorry to tell you this, but the tests show you have rheumatoid arthritis." My rheumatoid factor and sedimentation rate were extremely elevated, practically off the scale.

"Rheumatoid Arthritis!" I screamed. He had to be kidding, arthritis was for old folks. I was young, too young. I just had a baby girl. There wasn't any way I was going to have this disease and be crippled and thrown in a wheelchair. Who was going to take care of my daughter when I couldn't even hold her, rock her, feed her? My husband wasn't going to want to take care of a young invalid until death do we part, he'd leave me. The thought crossed my mind that I might never dance again and I shattered inside. Disturbing wild thoughts surged around in my head as I faced a brutal diagnosis, and I felt traumatized beyond belief.

RA was a death sentence to me, so just nail my coffin shut. I didn't want to go on living knowing my body was going to deteriorate, swell with joint fluids, and prevent me from living my life walking around on my own two feet. I spent the next few weeks confined to bed, sobbing, cursing, ranting, denying my diagnosis, and all the while swallowing an assortment of enormous choking pills to attempt to ease the massive attack on my joints. I vented my frustration and rage out on my husband and mother who were attempting to assist me every way they could, but I didn't care, I didn't want their help.

I wanted to take care of myself and not be an invalid, but my joints refused to cooperate. At times I couldn't even make it to the bathroom and had to resort to using disgusting incontinence equipment, wearing adult diapers. I couldn't hold a fork without dropping it so I switched to finger foods, because my fingers cramped and curled into lobster claws.

My poor baby daughter had to be content just laying next to me on the bed. It destroyed me not to be able to hold her, rock her, or feed her. Simple pats and kisses were all I could muster because any other caresses hurt my throbbing hands.

When I visited the rheumatologist for the first time I sat in the waiting room and looked around, finding myself surrounded by elderly people dragging walkers, leaning on crutches or sprawled over in wheelchairs. Here I was dressed in a youthful tee shirt and shorts, walking as if I was one of their peers, taking painful halting steps. I was doing the two step, old age shuffle. I couldn't stand staring at them so I stared at the television playing medical info tapes on RA. This couldn't be my life now. I felt like I was living in a virtual nightmare. I pleaded, promising God anything, if I could just wake up and be healed.

When I stepped into his office I informed the doctor in adamant terms how I felt about being diagnosed with RA. "I hate this and I don't want to live if my life's going to be a cripple!"

He stared my blazing eyes down and calmly responded, "I see you're a real spit fighter, and you're going to need that spirit to deal with RA." He doled out honest facts about my disorder, explaining available treatments and management, and telling me what I would and wouldn't expect with symptoms.

I realized when he finished speaking that he was probably right. I was a fighter, and my family, my baby girl, needed me. No-one could possibly raise her the way I wanted to, not even my husband. I had to face my diagnosis and live with it, try to beat it with every excruciating joint in my body. I found out rather quickly there wasn't a cure for RA to erase it from my body, but it can be managed, especially with the new treatments being discovered every day. I returned home with pamphlets and samples of more horse pills.

My trim physique drastically altered. This was a hard issue to face when I looked at myself in the mirror. When I was younger I suffered from anorexia. Soon years of consuming mass amounts of prednisone (the treatment at the time that best relieved flare-ups) turned my face into a, "moon face." I developed flaring cystic acne, suffered hair loss and was prone to extreme mood swings. RA didn't skip over one joint in my body, leaving some of them moderately contracted, and others contracted so seriously they twist inwardly. No longer could I wear elegant high heels, dance shoes I once loved. Now my favorite comfortable shoe was a pair of flat, boxed shaped sneakers, with molded orthotics, extremely unstylish but pain free. Comfort was more important to me now.

I went through years of physical and occupational therapy, to maintain and strengthen my muscles in order to support my joints, and learn adaptive methods for daily living. Over the years I became disgusted seeing my weight gain and the extreme difficulty I had with losing even a pound. It made me despise exercise and I was someone who never enjoyed sitting, preferring to dance around and be active. Now I was perfectly fine sitting down in a firm comfortable seat for hours, forcing myself to perform daily exercises to battle further joint damage.

I went through three more pregnancies and realized immediately when I conceived, because practically overnight pain and RA symptoms dissipated. During my pregnancies I felt energetic, but after my children's birth symptoms crept back, sometimes in a matter of a few weeks, other times months later. It was impossible, rather impractical to remain pregnant to keep painful RA symptoms at bay, even though I'd thought about it several times.

Raising my family I altered my lifestyle, using any adaptation to get by. My sense of humor helped me climb over a few difficult hurdles, and eased me through rough spots when I wanted to give up. The loss of ability to dance was probably the one thing I missed the most, being able to soar and jump freely across the floor. Now I managed to do the stiff two step, dance around in my chair, and watch others soar with abandon as I felt a sense of remorse. Today as a writer I create characters that enjoy the passion of music and dance.

RA's affected my vocal chords, and the joy of singing took on a new meaning with altered tones and diminished range, still I continued to hum and sing through my waking hours. In my dreams I soar freely, create beautiful arias, having a perfect dancing physique and lyrical voice restored to entertain an audience.

I'm thankful I still have the ability to walk on my own, though it's halting at times. I perform my own personal self care and have managed to assume my role as mother to take care of my family.

Today I'm still living with and managing RA, and have done remarkably well considering the initial fierceness with which it attacked my body. Not to say I haven't experienced periods of depression over the years or episodes when I was confined to bed because of exacerbations, but I continue living. After 30 years I'm still here, slightly disfigured but still having a fighting spirit and a love for life. With new treatments and medications, I know you can live with RA and live a full life, because I'm a prime example.

The End