Tuesday, January 24, 2012

Diagnosis is just the beginning

I saw Dr. Valerie Ball on a Tuesday afternoon almost two years ago. I brought a calendar showing the progression of symptoms and she took a look at my very painful glands. And then she asked if I had dry eyes.

When I think about that moment, I still get a little emotional. It was a turning point in my life. The dots were getting connected and someone was actually listening. She sent me for blood work immediately to test my ANA response. In one week, I was at four different hospitals and went through a CT scan and a fine-needle biopsy (to rule out lymphoma or other cancers). My ANA and sed rates cam back off the charts. I also went on antibiotics for over a month and started on steroids - the infection couldn't get out of the glands because they were so inflamed. My next stop was a rheumatologist and 14 more vials of blood for testing.

In September, I had my definitive answer - I have Sjogrens Syndrome. Compared to many of the autoimmunes, Sjogrens is fairly mild. It's not generally life-threatening and more annoying than anything. I did have to start chemotherapy though. I take five pills each Saturday night. I can't drink alcohol on the weekends because the chemo can overtax liver. I have to rest much of the day on Sundays or I will start to feel ill by Tuesday. But I'm not puking my guts out or losing my hair (much). It keeps my inflammation at a managable level. I haven't had parotitis since July 2010. But I won't be considered in remission for another couple years.

In a little over one year, I had my thyroid start malfunctioning, three separate viral infections throughout my body became active and in a six-month period I had three separate biopsies and surgical procedures. They all link back to my immune system going all bat-shit crazy on me. Diagnosis was the end of one road and the beginning of another.

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