Sarcoidosis: My Mystery Revealed

"What's wrong, Mommy?" my son asked, concern clouding his large brown eyes.

"Probably nothing," I said a little too cheerfully, my hand reaching for the nape of my neck. My son's six year-old eyes locked onto my kneading fingers. "I think I might have pulled a muscle during swim class from all the flailing around."

"Yeah," he chuckled. "You were funny!"

"I know," I confessed. "But you were great in the pool!" We had just finished the first lesson of a beginner's swimming class. Whereas my son had taken to the water like a fish, I was still trying to get past putting my face in it. The incident at the pool foreshadowed the years I would struggle to keep my head above water. Unknowingly, I had entered the mysterious world of sarcoidosis. It would be four years before I knew what to call it.

Sarcoidosis (http://www.blueflamingo.net/sarcoid) is an inflammatory disease, affecting any organ or tissue in the body. The lungs, lymph, skin, and eyes are the most commonly affected systems. The cause of the disease is unknown, although most experts agree that an abnormal immune system response occurs with the condition. Environmental and genetic factors have also been strongly implicated. The onset may be acute or insidious. For some individuals, the disease is asymptomatic and self-limiting, clearing up within three years. Treatments vary depending on the locations of the lesions and severity of the condition. Severe cases are treated primarily by corticosteroids.

Shortly after the onset of the neck pain in 1980, I began to feel a general malaise. The neck pain deepened and radiated down my back and shoulder. Chest discomfort that I experienced several weeks later was attributed to bronchitis. I had only enough energy to drag myself to work and home again. I felt wrung-out, like a limp dishtowel. I used my knowledge and skills as an occupational therapist to manage my energy and the demands of work as effectively as I could. Chores and playtime with my son were held to a minimum. Even so, many nights the best I could do was to lie on the couch. Boxes from a recent move sat stoically in their places, testaments to my incompetence to manage my life. Depression flitted around the edges of my waking hours.

At thirty, I simply refused to accept that I could have a serious medical condition. Foolishly, I took over-the-counter pain medicine, and delayed seeking medical attention. In spite of my bullheaded resistance and denial, I continued to lose ground to pain and fatigue. My wake-up call came one night, several weeks after the neck pain at the swimming pool. I was literally brought to my knees by a mildly aching hip that suddenly became hot and swollen.

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