A New Way Of Life

Hi Everyone,

My name is Maureen Smith and I am 33 years old. My story begins back in Late January early February. My symptoms began with vomiting and hiccups and not a little bit of either it was ALOT. Within 3 weeks I had lost about 25 lbs and was throwing up about 15-20 times a day and had hiccups consistently. My DR sent me for every test they could think of and nothing, no answers. Finally on April 5th I went to urgent care because I was at work and lost the vision in my right eye and was so dizzy. The PA there told me I had a rare stigmatism and that I needed to get an MRI so I should follow up with my Dr. The following day I went to see my DR who then sent me for an emergency MRI and I told her that I had some numbness in the tops of my legs. She said she would call me in a little bit and we would go from there. I no sooner came out of the MRI when my DR called me and told me to go straight to the Emergency Room, so I did. I got to the emergency room and the DR had remembered me from back in February and quickly realized something else was wrong. I told him I had just had an MRI and he asked for the disk of my images so I gave it to him, within 10 minutes he came back and said an ambulance was on the way to get me and that I needed to be transferred to another hospital because I was having a stroke. At this point, I was scared and so was my mom. I went to the hospital and was sent directly to their Neurology ER(they have their ER’s broken into specialties). I was admitted within a few hours for a “stroke” and was greeted by an incredible Neurologist named Dr. Silvestri. He told me it looked as though I was having a stroke but he wasn’t sure that was what was going on and wanted to complete further testing. He said he wanted to complete a spinal tap and a spinal MRI, I have had Lupus my entire life and have already had a spinal tap so my answer to that was no. The next morning at 2:30 am I was brought down to have a spinal MRI as this Neurologist was waiting on my results. As soon as the results came back he came to my room (it was about 7:30am at this point) and let me know I had a rare disease called NMO. They started treatment of steroids and IVIG right away. I was given an eye patch(my right eye had moved all the way over to the right side and I had no vision) and taught to move the eye patch every 2 hours to help gain that muscle back. By the time I left the hospital a week later I had some of the muscle back but was being sent for OT and PT when I got out. I was still pretty dizzy but they gave me meds for it and I went to PT. I did great for about a week and a half when all of a sudden I lost my mobility. I woke up one morning to use the bathroom and hit a wall because I couldn’t move my legs, so I went to PT that morning and they told my mom to take me back to the hospital. Back to the hospital I went more scared this time than the last only to find out I was still having an “attack”. By this time the tops of my legs were numb and it was slowly moving downward. I was immediately started on IVIG and steroids before the Neurologists even came to my room because of course I was admitted again. Once all my tests confirmed what they had suspected, my neurologists were already setting up the treatment and told me i’d spend at least 2 weeks in the hospital for treatment. I was DEVASTATED and my family was terrified. We were all still very new to this diagnosis and didn’t really know what this was going to do. While still in the hospital is when I started to get the banding as well. I was then treated with plasma pharesis, ivig, steroids, and finally rituxan, this was not an enjoyable stay in the hospital either. I fell twice, the day nurses were awful to me and no one but neurology knew what this disease was. I was seen by 3 different neurologists, I was having issues being able to urinate, and I had AWFUL roommates. I was stressed, exhausted, in pain, my sons birthday was quickly approaching, and I was having in house pt shoved down my throat. I left there on my sons Birthday in a wheelchair with in home PT already scheduled and although I was grateful I couldn’t help but feel horrible and alone. No one could understand what I was going through and no one could understand my frustration. My mom has been my angel as well as my dad and my son has stepped up to the plate and said the best birthday gift he got was me coming home. Here I am home from the hospital almost 2 months later and I am able to walk a little bit and do things on my own but more so I’ve learned how to slow life down. When my son talks I take a huge interest even if it’s something I don’t care for, I take more time to ensure he knows he’s loved unconditionally, I spend more time with my parents than I ever have and I’ve learned whose not really there for me. I’ve had some really heartbreaking moments because I can’t do what I used to do(run twice a day and lift weights, hike, etc. ) but I’ve learned to not take for granted the every day things we normally can do like showering, cooking, walking, getting outside. This disease has been the worst and best thing that has ever happened to me but I refuse to allow it to consume my life. I will keep fighting, but I will also continue to remember to be grateful for our everyday moments.

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