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Fight rare neuro-immune disorders. Together.
March 2006 was the last time I had any sort of preconceived definition of normalcy in my life. I was a seventeen-year-old junior in high school vacationing with my family in Gatlinburg, TN when I fell ill. A few days into our vacation I stared feeling sick with high fever, shakes, aches, nausea and vomiting. I was upset that I didn’t feel well because it disrupted the only activity I wanted to do, which was to ride the Gatlinburg Sky Lift with my dad. I was upset, but any sadness I had quickly disappeared when I fell asleep. I slept the entire day (20 something odd hours) and woke up the following morning as if nothing ever happened.
Three days after we returned back home to Jacksonville, FL I noticed that my toes were numb. I couldn’t describe the lack of feeling I was experiencing and my mom and I did a Dr. Google search and came to the conclusion that it was poor circulation. I have always had ice cold feet (like a vampire!) so I just went along with it. Two days later the numbness progressed to my feet. I couldn’t explain it and I assumed it was just really, really poor circulation. Months later and my symptoms hadn’t resolved so I saw my PCP.
One day while in Spanish class I got up from my desk and my left side completely froze. I called my mom and knew something wasn’t right. She called a neurologist and I was seen in a few hours. He ordered some bloodwork and an MRI. I was able to get an MRI appointment that same day and was told by the nurse that my neurologist would have my results the following day. That afternoon my mom got a phone call from the neurologist instructing us to head to the hospital immediately for IV- solumedrol. It was there that I was diagnosed with Acute Transverse Myelitis (ATM). My mother found the Transverse Myelitis Association through a bit of research and reached out to Sandy Siegel. He was very informative, inspirational, and calming when giving us info about ATM. After a lumbar puncture and 5 days of 1,000 MG of IV- solumedrol, I was released back home with orders of physical and occupational therapy. A few weeks passed and I was improving, but then, I lost feeling in my fingers, hands, and arms. At the time, ATM was thought to be monophasic and my neurologist referred me into the care of another neurologist who worked with Multiple Sclerosis (MS) patients.
Almost three months after my last exacerbation, I thought I was in the clear, then my vision began to go blurry at times. I passed it off as being fatigued and didn’t pay much attention to it. Until the following month, September 2006, when I had double vision. I called my neurologist and he ordered me to head to the ER (he was at a conference in Spain) to receive more IV- solumedrol. Finally, on September 23rd, 2006 I was diagnosed with Neuromyelitis Optica and I was NMO IgG positive.
Between September 2006 and December 2011, I was in and out of the hospital for various treatments like IV-solumedrol, plasmapheresis, and chemotherapy. So many medical treatments, doctor appointments, and hospitalizations happened between those years that it would bore you.
Living with Neuromyelitis Optica (NMO) hasn’t been easy. It’s been 10 years this year since my diagnosis and I still live with daily reminders that I am sick. I can’t stand very long without feeling like my legs will collapse under me, I’ve lost all the vision in my right eye after a nasty attack of Optic Neuritis (ON), and I battle fatigue and chronic pain daily… but I refuse to give up my fight. There’s a song called “Swim” by the band Jack’s Mannequin that has stuck with me since 2009. One of the lines in the songs he sings, “I swim for brighter days. Despite the absence of sun”. After I’ve had a rough day, I remind myself of that lyric and all of the positivity and happiness I’ve witnessed because of it.
I could’ve given up hope and thrown in the towel, but then I wouldn’t have experienced life. Life isn’t perfect, and it never will be, but your attitude contributes to everything around you! I chose happiness over sadness, and I chose to rise when my body was pulling me down.
I want YOU to know that there will be days, weeks, and even months where you’ll want to give up. I want you to know that your life will change and it will never go back to the way it was before your diagnosis, but YOU have the power to make new goals for yourself to see each and every day.
My name is Elizabeth Velez. I have Neuromyelitis Optica, but Neuromyelitis Optica does not have me.
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