The Life of a Twenty-Something Living with NMO

December 2004- I was a typical 22 year old college student, getting ready for final exams and anticipating heading home for the holiday season to spend time with my family and friends. I was feeling a bit under the weather, typical flu like symptoms and therefore I didn’t put too much mind to my illness. I took some over the counter medication to try to relieve my cough, dizziness, nausea, and headaches but nothing worked.

January 1, 2005- After 4 days of continuously vomiting and never ending vertigo, I collapsed to the floor. I couldn’t stand or walk and the room did not stop spinning counter clockwise. I was rushed to the ER and told that it was dehydration, I was quickly released and headed back home. The next day the symptoms continued, and the third and forth day where not any different. I went back to the ER where the doctors and nurses insisted that I go home and rest because it was nothing serious. When I explained my symptoms the first thing they asked was “are you sure you are not pregnant?” and of course my mother’s face turns pale white. I insist “no, im not pregnant, this is not normal, and something is seriously wrong’. I was so weak but I had no choice but to go home and for the forth time I was discharged.

January 5, 2005- I faint again, and my parents rush me to the hospital, I am placed under observation. Doctors are running test to figure out what could possibly be wrong but within hours my lungs collapse and within seconds I have a tube down my throat and I’m placed on a ventilator. I was very fortunate that I was already in the hospital when my lungs collapsed. Had I been at home, I probably wouldn’t have made it.

June 2005- I have now spent 6 months of my life in the ICU fighting to stay alive. After suffering from multiple organ failure, paralysis, and numerous complications doctors still can’t determine what is wrong with me. I had a strange pattern of paralysis, first my legs, next my arms even my face and tongue. I had to accept that from that point on I could not walk, I had to learn to adapt to a life in a wheelchair and taking a cocktail of medications on a daily basis. I could no longer take care of myself and needed assistance with every simple task in my life. I would cry myself to sleep and throw myself on the floor with a feeling of helplessness, fear, and anger. What had happened to my life— I missed being a college student, living on my own, without any reason my life was flipped upside down and I was paralyzes and living back at home being take care off by my parents as if I were an infant. I had an endless array of MRI, spinal taps, and every other thing under the sun. They suspected Gullian- Barre, transverse myelitis, lupus, MS, etc. No clear definitive diagnosis was ever given. I had to re-learn how to eat, bathe, and get around in a wheelchair.

August 2005- I transfer to a local university and return to college to finish my bachelor’s degree; going to school in a wheelchair was a challenge. Everyone looked at me strange but at least I encountered kind classmates that would hold the door and wheel me to the car. I was fitted for braces in my feet and I started to take baby steps with the use of a walker and eventually two canes. I had intense physical therapy and acupuncture. I attribute these two things to my rapid recovery.

June 2006- I finished my BA degree and I was walking with only one cane. On graduation day I told myself that I would let go of the canes and I managed to start walking by myself. I looked silly, like a mummy but that didn’t bother me. I taught myself to drive even against my parent’s wishes and regained some independence. I fell so much that hitting the floor became my norm, not a day would pass without me falling, I had very little balance and at that point I still had no sensation in my feet.

July 2006- I wake up one morning and suddenly I can’t see from my left eye. I wear contact lenses so I thought that perhaps I had injured my eyes or rubbed my eyes to much. I wait a few hours before saying anything to my mom who panics over every little thing. The next day I visit my optometrist who informs me that she can’t see anything wrong with my eyes but refers me to an ophthalmologist to better determine what might be wrong. I call for an appointment and because of my medical history they suggest I see a neuro-ophthalmologist. He reviews my case, checks my eyes and informs me that he might have a suspicion of what could possibly be wrong with me. He requests I have a blood serum exam for NMO IgG. Later that month I receive his call. I remember the conversation vividly. “I have some good news and bad news Maria”, good news is the results are back from the blood serum exam, the bad news are that as I predicted you tested positive for NMO.

August 2006- I decided I wouldn’t let NMO determine the rest of my life. I met the most incredible neurologist and he made sure to take very good care of me. He quickly explained what NMO was and what I had to do next to get better. I was immediately placed on Rituxin two rounds every six months. I asked “when does it stop”? He answered, “indefinitely”. I was given steroid and my vision returned 100 percent. I also took Lyrica to help with the pain in my legs. I enrolled in graduate school to pursue a degree in epidemiology. NMO cant stop me! I lost all of my hair and decided to get a wig.

2007- Balancing life with NMO and graduate school was no walk in the park. Living in Miami which has 80+ degree weather year round didn’t help either. I was constantly tired, hot and irritable. Those steroids really took a toll on me. I was tapered off corticoid steroids and I slowly stared to feel like myself again. My hair was growing back and I felt better.

2008-I felt like myself again, life had normalcy, I knew when not to push myself too hard and I learned to put close attention to my body. I maintained a healthy lifestyle continued to live life in a positive and happy mindset. As a researcher I couldn’t stop myself from reading all the latest NMO literature, every time I saw my neurologist I would bombard him with hundreds of questions. He advised me to not let NMO take over my life and he strictly enforced that I read no more than two NMO related articles a month.I received a Masters Degree in Epidemiology which only makes it worst because I have complete understanding of NMO data and become overly involved in NMO research.

2009- I move to Texas to pursue a PhD meanwhile flying back to Miami every six months to get Rituxin. Rituxin was not my friend, I had very bad reactions to it. Each infusion would last 48 hours because it was at the lowest possible rate. I would be cold, hot, itchy, uncomfortable, tired, sleepy— you name it, I experienced it!

2010- On January 2010 I decided I was ready to stop taking Rituxin. It was a personal choice that I made against my doctor’s wishes. He asked me if I had a death wish, I said, no. I want a long life and a chance to live a healthy life. I decided to get off all medication because I felt it was the right thing for me. I had not experience any flare ups and everything seemed right. I honestly wanted a break from the endless array of doctors, nurses, and hospitals. I’m a very stubborn woman, for better or for worst I wasn’t on any medications anymore. For over 3 ½ years I had been on Rituxin and I am grateful to it because it gave me my life back. On April 2010, I married my lovely husband.

2011- I am pleased to report I had no flare ups, my health was better than ever. Staying busy always helps, I continued to work on my PhD. I check in with my primary physician every once in a while just to make sure everything is okay.

January 2012-My scars are a constant reminder that my struggles were real, that I live with a disease that has the potential to suddenly take my life. I am grateful for the diagnosis because at least now I know what I have and I can better prepare for the future Sometimes I think its just a matter of time before the next attack and I feel as if it is a ticking time bomb. But I don’t let it get me down. I have moved forward with my life, I’ve been in remission for nearly 5 years. If you saw me walking down the street, you would never thing I have NMO. Once in a while someone will ask me about the tracheotomy scar and I smile. I have not suffered any relapses but I still can’t feel my toes. The downside to not feeling my toes is not being able to slip back into my pretty shoes. I’ve had to forgo high-heels but that’s ok because I have two amazing sisters who wear the most fabulous, stylish, sexy stilettos and I live vicariously my shoe addiction through them.

Future plans- As of today I am 29 years old, living life the way I always dreamed of, happily married and working towards completing my dissertation for a PhD in Public Health Science. I live in Chicago with my husband and our three dogs. Our next goal is to start a family in 2013 god-willing. I talked to numerous doctors about the possibility of conceiving and every single one of them has recommended against it. I respect their opinions but I learned a very long time ago only God knows what he plans for us. I have been off all medication/treatment since January 2010. In a way, NMO has shaped who I’ve become. I am kinder, more tolerant and more grateful for the simple things in life. I thank god for keeping me alive, for giving me back my sight and the ability to walk again. I am grateful for my family and friends. Now I eat healthy, rarely any meat, and work out regularly. Stretching is a must, if I don’t do it daily the pain in my legs would be unbearable. I live a fairly healthy life; I do it for me in order to be healthy and to live life with NMO without it dictating my every move. I hope to done with my PhD December 2012 and look forward starting the next chapter in my life. One last thing—the heat flashes have never gone away!I hope my story gives you encouragement to continue living your life.

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