I didn’t always have this autoimmune disease, I didn’t always follow a strict diet, and I didn’t always have to bend and stretch my life to accommodate this disease and lifestyle. I hate to say “I used to be average” because it implies that now I am either less than or greater, but that is not the case. Let me make the distinction, when I say that I am ‘not average,’ it does not mean that I am special, it simply means that, at times, I cannot blend into society anymore by eating ramen noodles and being a carefree college student like so many of my peers.
This distinction comes with the pain and embarrassment of having to explain why I have separate housing, not being able to easily eat out or make travel plans or day trips, having to live in my own personal bubble filled with anti-bacterial and anti-viral wipes and masks, having to schedule numerous doctor’s appointments yearly, and having infusions four times a year that make me feel achy and exhausted. The pain and embarrassment are not always there but when they are, it’s like a punch in the gut in contrast to the normalcy I can sometimes feel.
I know what life was like before the doctors and medications and I have tasted fresh Italian bread with butter before I started AIP (more on that in later posts). When I got sick, I was forced to give up and grow up in ways that I didn’t expect and not many can understand.
Now, enough about the negative! Looking back on my experience, I am so thankful for it, as odd as that sounds. It brought me closer to my family than ever, taught me to appreciate my body and life, and brought so many new people and adventures to my doorstep. This diagnosis has pushed me to be a better, more kinder, thoughtful, body-positive person than I have ever been. I started the AIP diet which has made me a clean eater and I am super conscious of getting enough sleep.
Because of my restrictions, many people in my life, family, friends, and acquaintances, know of my disease but often they do not know the true and full story of my diagnosis. When I returned from the hospital I took the time and wrote down experiences I had leading up to my hospitalization and I am glad that I did because since I wrote it down last October, many of these memories have been faded by time or deleted from memory as an emotional shield. Today, I am sharing some of those memories with you.
Neuromyelitis Optica is an orphan disease, which means that it affects fewer than 200,000 people. Also, it has no cure, just treatment methods. Now please, don’t make the same mistake that I did and google the disease, because the results are grim and simply outdated. People are not just living but thriving with NMO all over the world unlike search results will say. Thanks to the many wonderful doctors and research being done, patients like me are living normal lives.
Because of how rare this disease is, I’d like to share my experience with it, my diagnosis, my symptoms, and my journey towards remission with you, especially if one day you experience these symptoms or if you yourself have NMO or an autoimmune disease. When I first was diagnosed, all I wanted was to know and hear someone else’s experience with the disease, so hopefully I can provide that and more. My goal for this blog is to help at least one person feel better through clean eating or illness prevention.
My story of living with Neuromyelitis Optica begins in August of my freshman year of college. I arrived at school, so excited to spread my wings and soar into a new identity. I made friends with my roommate and other people on my floor. The month that I was there was honestly one of the best months of my life and I wouldn’t trade it for the world. Perhaps it seems like the best month because it was adjacent to the worst month of my life. Looking back, it is so fascinating to me that during that time, when I thought I just had bad combo of strep throat and PMS, that my body was slowly and systematically shutting down.
Symptoms started with a throat infection that campus doctors repeatedly treated. When I showered, the water felt like acid was being poured onto my legs, which I passed off as my skin being sensitive to water pressure or the new laundry detergent. When my throat finally felt better, I was diagnosed twice with a urinary tract infection due to a burning sensation. The grand finale of all my aches and pains came when I got so frustrated with the coughing and pain in my lower back that I went to stand up out of bed to walk to student health services, but could not feel my legs so I fell flat on my face. It was so sudden and scary. When I finally dragged myself to student health services, they suggested I go the hospital. I decided to go to Mount Sinai in New York City because that is where my mother works. I made a 2.5-hour trip alone using public transportation to get to the emergency room, all while not being able to feel my legs, not having peed in three days, and having no balance. From there, I was given an MRI and quickly admitted to the Kravis Children’s Center where I stayed for a week getting poked and prodded with needles until they could make this diagnosis. After I returned, I had many sleepless nights and decided to take my health into my own hands. I started the AIP diet and have felt great ever since. Proud to say that I am one year closer to remission.
Well, I think that that sums things up nicely? Now you know chapter one of my story to leading a healthier life, it is the basis for many more to come. I think that having this background is important to know when reading my future posts because I am not some health guru or fad crazed dieter, I’m a seemingly average college student living my best life despite the hand dealt to me.
Much love xo,
Lexi
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