My Journey With NMO: Taking Back My Life
This will be the final part of this journey so far. A new treatment, fresh starts, a new purpose, and a glimmer of hope. New things started to happen to me, and life lessons. I can’t say it was all positive, but there are always ups and downs with NMO.
Life since my first NMO treatment
After my first Rituxan treatment, it was rocky. I felt the after-effects such as flu-like symptoms and increased heart rate. It put me down for about a week, but that was it. Pretty simple and extremely manageable. To this day, I receive this treatment every 6 months. Since the start, I have yet to have any flare-ups. My vision is what it is and hasn’t changed. I’m thankful to keep what I have left and will continue.
Traveling with NMO
I made a big move and went to North Carolina to live with a friend. It was scary and new, but I needed a change. I would love to be in both states and continue treatment in New York. But the most challenging part of moving was that I had no idea where I was and wasn’t familiar with it. Back home, I could blindly make my way around. In North Carolina, I had no clue. It was scary, but I tried. I made it a year ago, and my little man died from a liver issue. I felt like I har nothing left here. So I made my way back North.
Back at home and concert, I started a new job with an old friend. It was nice having structure again and working. It was a job that was easy enough for me, and I loved it. Things were going quite well, and my aunt surprised me with something I didn’t know I was ready for. I was blessed with my little girl, Gia. She was abandoned and had a rough start, and my aunt thought she would be an excellent fit for me. I was hesitant after losing Nathan, but it was love at first pet. She is literally like a child and has just as much anxiety as me. But she is my girl, and we take care of each other.
Things were great, and I started traveling. I want to see the world while I still can. Luckily I got to go on a great trip, and then that little thing called a pandemic started. Being a higher-risk person, my friend in North Carolina came and grabbed the cat and me and brought us down. My mom was still working with the public, so She figured it’d be best for me to be there. She works from home and understands me as being high risk.
Coping with life in pain
The pandemic was rough on everyone and still is—the fear of getting sick is worse with a compromised immune system. Side note, I got it. I started 2022 with it. I had it easy. I was shocked, but it was like the mild flu. So thankful it didn’t get worse: but that’s the price I paid for going to Universal Studios in Florida.
Being stuck in a house for so long with this pandemic opened my eyes and fears. I questioned life and what I was to do in life. But now I know; I am here telling my story and helping others with this nasty disease. I’m learning more every day and helping myself while helping others. Life is never easy and a pain. Life wouldn’t be life if it were an easy journey. NMO was the hand I was dealt, and I’ve been learning to embrace it. It’s not in my control, but I don’t need it to control me. I’m fighting back and not letting it get the best of me. Stay strong, my warriors!
Were you misdiagnosed, prior to being diagnosed with NMOSD?