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 idiopathic scoliosis and in October of 2002 I underwent a full spinal fusion and thoracotomy to straighten my deformed spine.
My surgeon left my last few lumbar vertebrae unfused to increase my mobility and decrease the chance of complications. The surgery was successful and I had no problems until high school.
I began experiencing chronic migraines my sophomore year of high school, but was told I needed to deal with the stress that was supposedly causing them. Kidney stones, constant fatigue and seemingly benign “viruses” soon plagued me. I developed severe symptoms of Irritable Bowel Syndrome and Endometriosis, but was told I was simply unlucky. Countless tests for mono and thyroid issues were ordered after complaints of a sore throat and swollen glands, but no tests ever yielded results, and there was always that big elephant looming in every exam room— the suspicion of me being a hypochondriac. I pressed on.
In September of 2009, severe back pain struck out of nowhere. I was 17, taking 5 AP courses and working 25 hours a week. Within a month I would quit my job and start relying on pain medication to function. After a year of MRI’s, CT Myelograms, and other diagnostic tests, it was determined that I would need the rods in my spine 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. There was no visible reason for my acute pain and surgery was a 50/50 shot at being successful.
I entered college in August of 2010 at the Florida State University. A pre-med biology and chemistry major with big plans, I was unprepared for the journey to come.
In November of 2010 I came down with a raging sinus infection that developed into severe, unrelenting bronchitis. By Christmas break my lungs had cleared up thanks to steroids, but I never recovered. Joint and muscle pain set it. My hands swelled and ached. I was too weak to brush my hair.
By March of 2011, I could no longer function. What started as aching hands turned into constant infections, rashes, hair thinning and loss, chest pain, extreme fatigue, constant fever, weakness, and pain in nearly every muscle and joint, not to mention the chronic back pain I had already been battling.
I took a medical withdrawal four weeks before spring finals, moved 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. I was diagnosed with seronegative “Rheumatoid Arthritis vs. Still’s Disease.”
I had a diagnostic laparoscopy and colonoscopy in May 2011 to find and remove any endometrial adhesions. Unfortunately, results were inconclusive. My symptoms have since worsened and I am still without answers and currently hunting for a better doctor.
In September of 2011, I had a spinal fusion revision surgery and rod removal. The surgery was a success; my entire spine was inflamed and the rods were aggravating my ribs, joints, and were close to puncturing my diaphragm. I have since made a full recovery and am about 98% back-pain free.
Surgery came with a price: the trauma to my body intensified my Still’s Disease into a flare I have not come back from. In February of 2012, I spent a week at the Mayo Clinic undergoing tests to figure out how many autoimmune issues I was dealing with. I was diagnosed with secondary Fibromyalgia— a consequence of spending so many years in constant chronic pain.
A round of genetic tests came back abnormal and I was also diagnosed with a never-before-seen auto-inflammatory disease. It has been identified as either Tumor Necrosis Factor Receptor Associated Periodic Syndrome (TRAPS) or PAPA Syndrome (PAPAS), both of which are incredibly rare with less than 100 documented cases worldwide. I am currently seeking help from the National Institutes of Health.
If all of that wasn’t enough already, I am being evaluated for two endocrine diseases: Cushing’s Disease and Polycystic Ovarian Syndrome. Doctors have also been trying to determine whether or not Lupus or Mixed Connective Tissue Disease is a part of my puzzle.
My Still’s Disease has continued to progress. My health has declined significantly since I was first diagnosed at 18 and slowly I have become more and more disabled. I have gone through medication after medication with no success, but have recently started a new treatment called Kineret— an Interleukin-1 receptor antagonist— which my doctors believe will give me the best shot at remission or improved quality of life.
My journey is a long one. It is complicated and often confusing, painful and frequently exhausting but I will continue to fight. It is through suffering that I have learned how to live, love, hold onto hope even when that hope changes, and stop to smell even the smallest of roses.
Please join me in my fight against my immune system and help me help others. I would love to have you on board.