Tingling, numbness, and sleepiness…
On June 30, 2013 I was admitted to Northside Hospital in Atlanta, GA with increasing weakness, paresthesia, and bilateral paralysis. When the on-call physician used a reflex hammer to tap my kneecaps, they did not jerk forward as they should. I had no reflexes or nerve response so the symptomology led concern about Central Nervous System process.
There was a belief for the possibility of Guillain-Barre Syndrome or some sort of autoimmune response so I began 5 days of experimental immunotherapy each averaging 3-4 hours. Intravenous immunoglobulin (IVIG) treatment contains healthy antibodies that fuse with the “bad” autoantibodies that were destroying healthy host tissues, in order to neutralize their response.
I received a Lumbar Puncture to access cerebrospinal fluid, which showed elevated white blood cells. Inflammatory cells were attacking my nerve cells in the brain and spinal cord. The worst feeling was being collected in a wheelchair for the spinal tap but I am so grateful that Caroline and Emily were there to distract me from the procedure and for my dad’s company afterwards when I had to lie for 6 hours without moving. This was also my first bedpan experience… After a clean MRI (no brain tumor) we still could not determine a cause but knew my additional lab work and spinal tap results were “Not normal.
The prescribed three-pronged attack was IVIG, steroids, and plasmapheresis. Fortunately, I did not make it to plasma exchange! When I developed Bell’s Palsy and lost all muscle response to the left side of my face, I began three days of intravenous pulse steroids (1000 mg) in hopes of surpressing the increasing inflammation in my brain and spinal cord. I would later switch to 60 mg of prednisone for months to follow. I can thank the roids for a puffy moon face, cellulite on my stomach, abnormal hair growth and the list continues… You become unrecognizable to yourself.
I was finally recommended to a Rhematologist and after more labs received the Systemic Lupus Erythematosus (Neurolupus) diagnosis. Lupus is a connective tissue disease, but it was the biggest relief to finally have answers and a treatment plan! I went to live at my grandmothers since the main level of her home is handicap accessible for about 3 weeks for rehabilitation- completely dependent on my mom and dad to shower, get dressed, used the restroom, etc. I was completely reliant on a walker for stability and was out of work on medical leave for almost 5 months.
Although I will never be in remission like a cancer patient, I pray for no future flare-ups and recurrences! Treatment is to continue to decrease inflammation with a handful of colorful pills daily and lab work to monitory markers. We oftentimes take our health for granted but when you are faced with difficult moments, you have so much gratitude for the endless support, prayers, kind words and company of devoted family and friends.
But you don't look sick... From an outward appearance, no one would notice my daily struggles. I feel healthy again but I do have to consider the affect of all of my daily decisions.
I have had to force myself to slow down a lot, which has not been easy for someone so stubborn. My biggest daily challenge is extreme fatigue. I am running to raise awareness, educate, and find a cure for those affected by this mysterious and unpredictable disease.
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