"What matters most is how well you walk through the fire" -- Charles Bukowski

Monday, June 20, 2011

Long overdue; a long story short

My journey with autoimmune illness began my senior year of high school, though looking back I can see signs that were present much earlier. This is my story…

As a child, I was unable to run. I was perpetually sick and complained of knee pain constantly, but was told it was growing pains. In August of 2002, I was diagnosed with severe scoliosis and that October I underwent a full spinal fusion and thoracotomy (three rods and a bone graph) to straighten my deformed spine. My surgeon left my last few lumbar vertebrae unfused to increase my mobility and decrease the chance of complications (a choice I would later regret). The surgery was successful and I had no problems until high school. I began experiencing chronic migraines my sophomore year, but was told I needed to deal with the stress that was supposedly causing them. Kidney stones soon plagued me, and I developed severe symptoms of IBS and endometriosis, but was told I was simply unlucky and again "just stressed." In September of 2009, back pain struck out of nowhere. After a year of MRI’s and tests,  it was determined that I would need the rods removed the summer after my first year of college, and another surgery to fuse what was left of my lumbar spine the summer after my second year of college.

Off to Florida State I went, a pre-med biology and chemistry major with big plans, not knowing the journey that lay ahead of me…

I became incredibly sick in November of 2010, with a sinus infection that raged into the beginnings of pneumonia. My lungs cleared up, but my sinus infection lasted (along with fatigue and weakness) until Christmas. Home for break, I saw a new physician who put me on medication to clear up the infection. It worked, but my skin burned, my legs ached, and then the joint pain started. A typical (though not always) feature of RA: my hands swelled and ached horribly. I was unable to make the seven hour drive back to school on my own. The doctor told me it was side effects of medication and it could take a month or so to go away. It didn’t. By March of 2011, I could no longer function. What started as aching hands turned into constant infections, hair thinning and loss, chest pain, extreme fatigue, constant fever, and pain in nearly every muscle and joint, not to mention the chronic back pain I had already been battling. My grades plummeted and my energy ran out.

I took a medical withdrawal four weeks before spring finals, drove home, and got aggressive with my health. I sought out a diagnosis, found an incredible rheumatologist who I absolutely treasure, and have begun the fight to regain a sense of normalcy in my life. My physician determined that the issues and fatigue I experienced throughout high school and childhood were early signs of rheumatoid arthritis. I am seronegative (which is why no one figured out what was wrong sooner), meaning my bloodwork consistently produces a false-negative result. Though rheumatoid arthritis is a definite, lupus has not been definitively diagnosed as it often takes years to come to a concrete diagnosis based off of primarily symptoms, so for now I battle the RA. I currently await my third spine surgery, as well as Methotrexate injections after I heal from the procedure.

In the meantime, I wait in pain, eager to find an outlet and a positive productive use of my down time. This is a small window into my own journey, with hopes of helping other young adults coping with debilitating autoimmune diseases, just starting their adult lives.

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