Posted by: The Sumaira Foundation in NMO, Patient.e, TM, Voices of NMO
It all started when I was 20 years old – I went to urgent care because I was experiencing excruciating pain in my upper back to the point of tears. The urgent care team told me that I had a urinary tract infection and sent me home with a prescription for it. Two days later, my life changed forever.
On June 27, 2014 at 5 am, I woke up paralyzed from the chest down. It was one of the scariest moments I’ve ever experienced. I thought it was a nightmare. I couldn’t urinate or make a bowel movement on my own. I felt no sensation in my legs. It was nothing but dead weight. I remember it feeling like a rubber band was squeezing my waist really tight. It felt like the lower part of my body wasn’t there but I could clearly see that it was there. I told my mom that it felt like I had to use the bathroom but I felt weak. My mom tried to help me out of bed and that’s when I collapsed to the floor. I couldn’t move my legs at all let alone sit up by myself. My worried mom immediately called for an ambulance. The paramedics arrived, wrapped me in a blanket, and pulled me on to the stretcher.
I arrived at Northwest Hospital where doctors and nurses were running from all angles. They poked my legs with needles and safety pinks but I couldn’t feel anything – no sensations whatsoever. I knew they were poking me because I started bleeding. They inserted a catheter and filled two bags with urine. The doctor told my mom that he was worried. My mom walked out of the room crying and that’s when I realized it was bad.
The doctor told me that I’d likely never walk again and was declared paralyzed from my chest down. I couldn’t breathe. I cried believing that my life was ending. All I could think about was my newborn baby who I had just given birth to five months before who really needed me. Another doctor came in and told my mom that I could walk again but it depended on how my body would heal. All I knew was that I HAD to get better.
The next morning, I was transferred to Sinai Hospital of Baltimore LifeBridge Health Center. They continued to run a number of tests and started me on a very high dose of steroids. There were white bags placed on my legs to facilitate blood circulation. I was also receiving insulin to manage the high sugar levels and blood thinning injections in my stomach. A day later, I was diagnosed with transverse myelitis. A couple hours after being diagnosed with TM, I was re-diagnosed with neuromyelitis optica. We had never heard of this disease before. The doctors explained everything about the disease to us and what the next steps were. A port was implanted in my neck so that I could begin four plasmapheresis treatments beginning the next day. My legs felt like they were on fire with this horrible burning sensation. All I could do was cry because I was in so much pain.
I was in the hospital for two weeks before I was discharged and sent to rehabilitation center in Baltimore. I received occupational and physical therapy for one month. While in rehab, they taught me how to manage my new life in a wheelchair while caring for my baby. I was being very stubborn because I believed that I was not going to be confined in the wheelchair forever. I had faith and I am a child of GOD. I refused to learn anything related to living in that wheelchair.
I was discharged on August 25, 2014. Even though my family brought my little girl to the hospital every day, I was so happy to finally be home with my baby and family. I missed my baby’s first crawl, teeth coming in, and all the things that a mom would not want to miss.
My mother was never properly trained on how to care for me in a wheelchair upon discharge so we had to learn everything from scratch, together. I wanted so badly to be independent again. I would place my wheelchair against the kitchen sink and try to wash dishes. A couple of months later, I was able to stand up with my wheelchair in back of me to wash dishes. My mom would help me out of the wheelchair with my walker and we’d practice three times a day, every day. My mom and I had faith and we worked on this together. Soon after, I began walking without the walker while holding on to my mom’s arm. After a while, I started walking on my own.
I was finally able to stop taking prednisone and got started on Rituxan infusions. I’ve had my ups and downs with Rituxan. It’s great because I haven’t had any relapses but it’s also not great because it weakens your immune system making it very hard to fight off infections and colds. While on Rituxan, I’ve gotten pneumonia five times. The last time I had pneumonia, I was admitted in the hospital for a week, receiving medicine through an IV.
My neurologist believes that Rituxan is the best treatment for me at this time and I am so grateful to be receiving it. Initially, insurance did not approve the medication but thanks to my doctor advocating on my behalf, the treatment finally got approved and I now receive the infusion four times a year, every six months. I visited many of my doctors and people who helped me during the onset and they were shocked and pleasantly surprised to see that I was walking again.
Always believe in yourself and push yourself because you can do it. Always have faith with a positive mindset. Don’t ever give up and quit on yourself – you can do it. It’s August 2019 and I am walking, haven’t had any relapses since, and am doing great! Yes, I sometimes experience numbness but I can get through it. I do however, have really bad anxiety that I take medicine for. I never had anxiety until all this happened to me. I was always a “people person” but now, when I’m around a lot of people, I feel anxious. Honestly, sometimes it’s hard to get through the days without the anxiety medication.
I can walk again, have my own place, take care of my daughter, and trying to enjoy life. Sure, I wish this didn’t happen to me but I’m learning how to not let this take over my life. After five years, I’ve learned to accept NMO and am beginning to enjoy life again. The only residual NMOSD issue I have is related to the bladder – I frequently get UTIs but my urologist is trying to fix this problem via Botox.
NMOSD is heavy and comes with a lot of issues like numbness, tinging, fatigue, bladder/bowel incontinence, vision loss, and sometimes, paralysis. I do feel like my life was on pause when I got sick. I pray and hope for a cure every day. Someday, I’d love to grow my family but often second guess the idea for fear of complications and relapses. I have a beautiful daughter who I have to be there for and with. It has certainly been a journey and testimony. It’s a lot to deal with but I weather through the depression and difficult times because I am not giving up. I am doing okay and alive and well with my baby girl.
My name is Shantrice Martinez. I am 25 years old and live in Baltimore, Maryland. I have a five year-old daughter, Raegan. Thanks for reading my NMO journey.
