For those of you playing along elsewhere, y’all can just skim away.
In October of 2006, I was living my dream, enjoying sunny California, working as a contractor for the Air Force and working on finishing up my degree. Until the day I snapped the end of my ulna off. The first doctor that I saw said the best he could do was fuse my elbow at a 90 degree angle, but there was this guy doing amazing things at USC and it wouldn’t hurt to go see what he had to say. Dr. Itamura was able to work magic and give me back most of my range of motion. I have screws and plates in there, no cartilage, and rearranged nerves and other bits, but I could use my arm. It took 6 months of physical therapy before I could drive, let alone return to work. I was told that I could expect to need an elbow replacement in about 10 years or so.
Two years later, I was living in Texas and recovering from the second surgery on my arm. I started noticing some problems seeing things at night. Soon after, one morning I woke up not being able to see anything with my right eye. The doctors moved fast and ran what seemed like a thousand tests. I was treated with steroids and did regain my vision. The neurologist said that he thought I had MS and we started treatment.
In August of 2009, blindness struck again. I went through two rounds of IV steroids with no improvement. My neurologist at the time said he didn’t think I had MS and he didn’t know what else to do. He referred me to UTSW in Dallas to see a doctor that had just come from Johns Hopkins. This is where I heard about Neuromyelitis Optica for the first time. I heard that statistics said that within five years, I would be blind, paralyzed, or dead. I heard that there was hope if we found the right drugs to stop the attacks, that it could have a better outcome than a diagnosis of MS. I learned that I had lesions in my spine, brain stem and optic nerves.
I still didn’t have my vision back, but Dr. Greenberg’s nurse, Maureen Mealy, advocated to have me give plasmapheresis a try even though I was outside the treatment parameters. I spent 10 days in the hospital having my plasma (and all the bad stuff that was attacking me) taken out and I was able to regain most of my eyesight again. I’ve had a couple episodes since then and I was lucky to be treated quickly and appropriately. For treatment, I now have Rituxan infusions twice a year to kill the B cells that attack the myelin covering of my nerves.
I had the one – two punch of the arm and then a diagnosis with a rare disease and I had resigned myself to a certain perception of what my life was going to be like. Years of drugs like steroids, immune suppressants, and Lyrica, and me giving up left me overweight. I checked out and didn’t even realize it.
Two months ago, after joining a gym, being bored out of my mind, and feeling ready to give up again, my husband brought up the idea of taking some type of martial arts class. We signed up with Travis Lutter MMA and I thought I’ll just play along and see what happens. I found out that I liked Jiu Jitsu. My coach, Bobby Alexander works with my limitations and helps modify things when needed. He and my teammates challenge and encourage me to get past what I think I can’t do, even if they don’t realize they’re doing it.
I had thought that I was being positive and doing well coping with everything. Until I started training in Jiu Jitsu, I didn’t realize how much I had just given up. I didn’t realize how much I thought I couldn’t do because of my arm or this disease. I didn’t realize how I had limited my life. And I didn’t realize how much I still had inside of me.
I recently competed in a Jiu Jitsu tournament and I was so happy just to be there and go out on the mat, let alone win a match. In two months, I have lost 25 pounds and come off of insulin. I feel better, I have more confidence, I am finding myself, I am reinventing myself. I still have my spunk and competitive spirit and this is just the beginning of my journey.