Peaks and Valleys

My illness can be mapped in parts—moments of exacerbation and stabilization, a kind of new normalcy. There is the beginning of the illness that I barely noticed so subtle was it. Pain here, pain there—a strange neurological blip of physical unsteadiness. There were the slips of the fingers on the piano during songs I knew well. Then there were periods of silence, where these subtle changes slid into the background as if they hadn’t been there at all. Everything was inconsistent and separated by gaps in time. Things were so subtle, persisting that I assumed everyone felt as I did. To me, the idea of illness never entered my consciousness. I was certain what was happening happened to everyone, after all I could still run, work, hike, and engage in normal activities. Things just intermittently went wrong—like a barely perceptible distortion in a painting. A happy image marred by one figure frowning. Had I been less ignorant about what illness looks like, I might have picked up on that twisted grimace in the painting. But during this period of time, I was living with a new normal. Normal being the operative word.

Then there was the time after pneumonia. My personal life had become inordinately stressful and I ended up with pneumonia. This, too, seemed normal and just one more horrible stressor I had to cope with. But people develop pneumonia all the time. I was just fortunate not to end up in the hospital. But something shifted after pneumonia. Suddenly the intermittent blips became persistent. Neurological symptoms and severe spinal pain all started to worsen. I no longer could write them off as normal, as suddenly I was no longer able to get out of bed, my spine was froze stiff and any movement caused severe, unrelenting pain. That was the period of time when symptoms seemed most visibly a rheumatological disorder. It took four years and 6 doctors to get one diagnosis of Ankylosing Spondylitis.

But things didn’t stop there. By 2006, my illness went into the next stage of development. I started to infarct in my organs. First my brain with a stroke and three TIAs in one week beginning October 7, eleven years ago to the day I write this. I would go on to have two more TIAs after the first three, a bowel infarction and two kidney infarctions. But there was still no clear diagnosis—or at least no one wanted to make the diagnosis that would ultimately lead me to lifelong Coumadin use. That wouldn’t come for another seven more years despite bloodwork that determined the cause. However, in 2009 I was diagnosed with Systemic Lupus and by 2010 with Sjogrens. I was also diagnosed tentatively with something called MELAS. I consider this the third part of my illness as by 2010 medications were helping and I hadn’t had a stroke on the blood thinner I was on. Things seemed to be looking up.

Then Hurricane Sandy happened and what had been a remission began to turn into downward slide. My rheumatological symptoms began to break through the medications. My doctor scrambled adding different medications, but nothing was working. And soon the infarctions started again, this time in my eye. This finally prompted doctors to make the official diagnosis of Antiphospholipid Syndrome and put me on Coumadin. With the addition of a TNF-blocker called Cimzia, a chemo medication called Methotrexate and Coumadin, it was believed that my body would settle down. And it did for a short period of time. Then 2016 came around and the therapeutic level of Coumadin bottomed out and I started stroking. I’m in this stage now where my illnesses have progressed, while stable in a new normal they have worsened.

This is the flow of chronic disease. It is full of peaks and valleys.