The Tin Man from the “Wizard of Oz,” may somehow be my lost soul mate. I can sympathize with his lumbering straight leg strut and bent frozen arms because at times I strut around the house the same way. Just hand me my oil can. My body’s turned from an elastic human Gumby to a rusty Tin Woman. Rheumatoid Arthritis has taken a liking to attacking my joints but emotionally I still have heart, just like the Tin Man.
Being married at the young age of nineteen I found myself soaring on cloud nine when I gave birth to my first child at twenty-three years old. Nothing could ever go wrong because I was just so thrilled to be able to take a break from work to be a stay at home mother. My daughter was a content three-month-old baby as I proudly paraded her around in her stroller through the neighborhood, the parks and the shopping malls. I carried her in a front papoose carrier while I danced and sang around the house, even while I did housework. My daughter loved the closeness and music was such a joy for me. I enjoyed moving my lithe body and couldn’t bear to sit still for long, always bouncing off chairs to dance around. Having the gift of a singing voice you could always catch me singing or humming throughout the day.
One morning I felt feverish, slightly sluggish, but managed to push myself through the day. After putting my daughter to sleep I surprised my husband when I informed him I was going to go to sleep early. This was indeed a rare statement from me because I enjoyed staying up late, but that night I wanted to rest and knock out any cold virus before it knocked me out.
The next morning I opened blurry eyes to hear my baby girl crying. Usually I sprung right out of bed to race and pick her up, but that morning my body completely failed me. All the joints in my body were hot, swollen and throbbed with pain. On a pain scale from one to ten, with one being the least, I bit my tongue because I was experiencing a ten plus jolt. My stiff knees wouldn’t bend as I struggled to maneuver out of bed without waking up my husband. I performed my first, Tin Woman strut, slow painful strides, each one exhausting me as if I’d run a marathon race. My baby needed me and suddenly I felt a wave of terror wash over me, believing I had the bubonic plague or the worst case of the June flu. I stopped dead in my tracks realizing I couldn’t inflict it on my young baby, so I woke up my snoring husband.
“I can’t move, I’m sick, you’ll have to get up and get her.” I said, and painfully eased myself back into bed. I didn’t really care for doctors but the next day I had no choice but to go see one because it felt unbearable to even lift my head off the pillow. I was superwoman and green kryptonite attacked me and left me weakened. My baby needed me and I was failing her, not-the-less failing myself.
My doctor entered the examining room, asked a few questions and silently examined me. He gently manipulated my extremities as I clenched my teeth. Afterwards he offered a possible diagnosis of postpartum infection even though it was three months since I gave birth. He sent me home with antibiotics, steroids, and an order of complete bed rest after I took a slew of blood tests at the lab. The next two days I forced myself to try not to care about anything going on in the house and fight my infection, willing myself to get well quickly. Thankfully my husband was off for the week-end and took over caring for my daughter, only interrupting my rest with multiple baby care questions.
Suffice it to say my test results were returned in two days and I received a solemn phone call from my doctor informing me to come in immediately. You know when doctors ask you to come in their office the results have to be serious, so I made another painful trip to my doctor. Still I felt somewhat at ease because he didn’t order me to go straight to the hospital, like I thought he would if it turned out I had a severe infection.
This time my doctor didn’t take the time to physically examine me. He told me to sit down and spurted out, “I’m so sorry to tell you this but the test results show you have, Rheumatoid Arthritis.” My rheumatoid positive factor and sedimentation rate were extremely elevated, practically off the scale.
“Rheumatoid Arthritis!” I groaned. He had to be kidding, arthritis was for old folks. I was young, too young, just starting to live and raise my baby girl. There wasn’t any way I was going to live with an old age disease and be confined to 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 an invalid until death do us part, he’d leave me. Then the thought also crossed my mind that I wouldn’t be able to run or dance ever again and I felt myself shatter inside. It sounded brutal, an unfair diagnosis, and I was traumatized beyond belief.
Rheumatoid Arthritis was a death sentence, just nail my coffin shut, I thought. No way was I going to live knowing my body would grow decrepit, swollen and stiffen up like a Tin Woman. I spent the next few weeks acting in denial, confined to bed as I sobbed, cursed and ranted while swallowing an assortment of choking medication, enough to gag a horse, all in an attempt to ease the massive attack of my body’s immune system. I had worst than old age arthritis and I vented my frustration and rage out on my husband and mother who were only trying to assist me every way they could, but I didn’t care about their feelings at the moment. I was an independent woman, didn’t want to depend on anyone else to care for me. I’m the one with the caregiver personality.
I fought being an invalid even though my Tin Woman joints refused to cooperate. At times I couldn’t even make it to the bathroom and resorted to using adult diapers. Of course I felt embarrassed, my daughter and I both in diapers, but I had no other choice. I couldn’t hold a fork without dropping it and switched to finger foods as my fingers cramped, my hands curling up into some kind of lobster claws.
My poor baby daughter had to be content just laying next to me on the bed for most of the day. It hurt not to be able to hold her, rock her or feed her like I wanted to. Simple pats and kisses were all I could muster because any other caresses hurt my throbbing joints.
When I visited my rheumatologist for the first time I sat in the waiting room looking around, finding myself surrounded by elderly people dragging their walkers, leaning on crutches or sprawled over in wheelchairs. Here I was twenty-three, sexy and slim, dressed in a youthful tee shirt and shorts, walking as if I was one of their peers, taking halting Tin Woman steps, doing the old age shuffle dance. I couldn’t bear watching them so I stared at a television playing medical info tapes on RA, all the while pleading and promising God I’ll do anything if I could only wake up from this horrific nightmare and bounce out of bed again.
When I stepped into the rheumatologist’s office I immediately informed him in adamant terms how I felt towards being diagnosed with RA. “I hate it and I’m not going to live my life being an old lady.” My mother always said I wasn’t the shy one.
My rheumatologist stared straight into my blazing eyes and calmly responded, “I see you’re a real spit fighter. You’re going to need that spirit to deal with RA.” He doled out honest facts about Rheumatoid Arthritis, explained available treatments and management, and informed me what I could expect with symptomatic relief and harsh medicine side effects. When I was initially diagnosed RA treatments were considered to be extremely harsh and caustic on the body.
I realized when my rheumatologist finished speaking that he was indeed right. I had always been considered a fighter, a survivor, and my family needed me to stay strong. I had to face my diagnosis and live with it, try to fight it with every excruciating joint in my body. There wasn’t a cure for RA but it could be managed, so I returned home with my assortment of pamphlets and more samples of horse pills to swallow. My rheumatologist quickly became a friend over the years, always taking the time to answer any of my endless questions and put up with my insanity when I screamed as he administered cortisone injections in inflamed joints. And yes, I did ask for stickers and a lollipop afterwards.
My trim physique drastically altered itself. This turned out to be an even harder issue to face as I looked at myself in the mirror, having suffered from an eating disorder when I was younger. Soon massive amounts of prednisone, (the preferred treatment at the time to relieve acute flare-ups,) turned my face into a “moon face.” I developed flaring cystic acne, hair loss, and was prone to extreme mood swings. Rheumatoid Arthritis didn’t skip one bilateral joint in my body, leaving some of them moderately contracted and others seriously permanently contracted, turning into the center of my body. No longer could I wear elegant high heels or dance shoes I once loved. Now my favorite comfortable shoes were a pair of flat boxed wide sneakers with molded orthotics, extremely unstylish but pain free on my feet. Comfort turned out to be more important than style in decreasing pain levels.
Today Rheumatoid Arthritis is an auto-immune disorder I manage daily, not allowing it to totally control my life. I even managed to go to school and become a licensed nurse. Many people are unaware of the extent of my physical damage because I don’t complain and manage to hide it. When someone happens to notice my distorted joints or limp, I explain about RA and how it struck me at a young age. I’m thankful I still have the ability to walk on my two legs almost every day even though it may be a halting RA Tin Woman strut. I recovered from several surgeries due to RA, and I’m proud to say I managed to raise my three children to adulthood.
I’m living with RA today and feel I do remarkably well considering the initial fierceness of attacks on my body. Not to say I haven’t experienced periods of depression, and times when I’m forced to be confined to bed due to RA exacerbations but I’ve learned to really appreciate the simple joys in life. This RA immune disorder may attack my organs and joints but I’m considering myself a winner with the assistance of more effective medications and treatments.
Thirty-two years after initially being diagnosed with Rheumatoid Arthritis I may have physical deformities but I also have a big heart, a fighting spirit and a daily appreciation for life. I’m the perfect example of someone living and loving life with RA as a Tin Woman. I just remember to always keep my oil can filled and use it, just like the Tin Man in the magical world of Oz as we strut along the golden path of life.
