Saturday, March 20, 2010

Living with Lupus, Seeking Well-Endowed Healthcare (Part 1 of 2)

With a topic as broad as “medicine,” I had difficulties pinpointing a specific topic to write an article on. An obvious choice was the current healthcare bill being pushed, but there was another topic lurking in every corner of my life that I hadn’t considered: living with lupus.

Lupus is an autoimmune disease that manifests itself in a variety of ways, including: arthritis, fatigue, sensitivity to sunlight, and kidney failure. Most sufferers of the disease are young women in their early thirties. I was diagnosed with lupus about a year and a half ago at age twenty-nine.

Mild arthritic symptoms began meekly presenting themselves about a year before I was diagnosed, in the form of stiff shoulders, neck, and elbows. As a part-time teacher, I didn’t have health insurance, so I dismissed my stiffness as part of getting older and tried to go on with my life. Over the course of a couple of weeks, however, my symptoms quickly progressed to my wrists, fingers, hips, knees, ankles, and then toes. One November morning, I found myself unable to sit up in bed.

My husband drove me to the emergency room. The doctor heard my complaints and forebodingly said that I needed to get health insurance. He didn’t say what he suspected was wrong with me, stating that I wouldn’t be able to get health insurance if I had a preexisting condition. He ordered blood tests, and while I waited for the results, the medical bills for my emergency room visit and lab work arrived. The hospital’s charitable program for low-income patients covered some of it. I had to come up with $700.

I picked up my indecipherable lab results and went to a doctor at a private practice to have them translated. This was a feat in itself since many doctors are loathe to see cash patients—those without insurance who are willing to pay upfront with cash. The doctor reviewed my lab results and heard my complaints. It was either rheumatoid arthritis (RA) or lupus. If it was RA, there was medication I could take to diminish the symptoms. If it was lupus, I could be dead in three months from inflammation of the brain.

I knew that the doctor was giving me the worst-case scenario for lupus, but to hear the doctor say those words—“dead in three months”—filled me with indescribable fear. He failed to mention that lupus affects the major organs of only a very small percentage of people. Most people live long, relatively healthy lives.

After the doctor’s brusque diagnosis, he stated that I needed to get health insurance immediately no matter how much money it cost (implying that I hadn’t had insurance because I chose to use that money for frivolous things). In the meantime, he said, Take 800 mg of Motrin every four hours. He walked out the door without saying another word.

I left the office with a friend who had been in the waiting room, and we walked to my car. I broke down and sobbed, telling her what the doctor had told me. My friend tried to comfort me while I tried to understand what was happening to my body.

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