Last time I wrote about my [neuromyelitis optica (NMO)] diagnosis I had returned to university in hopes of finishing my degree. Two months after writing part one of my story (Spring 2015) I was getting very stressed, overwhelmed with school, social life and trying to accept that my illness has become a part of my life at the age of 23. I relapsed and everything about my life took a turn again and I never returned back to university.
I never completed my second semester of my third year. I found myself sharing my story and the NMO illness in front of classmates one day and breaking down. I realised I hadn’t fully accepted what happened to me. Until this day I may never accept being diagnosed with such a rare disease, I continue explaining to people how it is similar to multiple sclerosis (MS) but deserves a different diagnosis so they understand. But what I realised was moving away to school got me away from hospitals and the painful memories of where I was diagnosed. I ran away from what happened to me. I never fully coped. I dropped my courses, moved home and fell into a deep depression as well as relapsed and put on a high course of steroids.
With NMO staying away from stress is number 1. It is impossible to live a life, stress-free. It is, however, possible to live and have coping ways for stress. I was negative about everything in my life. This included my weight due to the Azathioprine (immunosupressant) and steroids, not being able to carry a full course load at school, not being able to drink with other university friends, finding out what friends were really there for me through the pain and heartache of the diagnosis and fatigue took a toll on me. Basically, I missed and longed for the person I was before my diagnosis. I think being young and having an illness become a part of your life… it is easy to just want life to return to the way it once was and have things go back to “normal.”
What once was my “normal” never was again. When I fell into my depression I became the most negative person on earth! I took out my frustration and anger on those who love me the most. My mother, brother, and father hearing it from me in different ways, my relationships were greatly affected. I decided I had to take action, I was sinking into a dark place of unhappiness and how could I get better if I didn’t do anything about it?
I decided the first step was to go to my family doctor, let her know that I needed major help. She referred me to a psychiatrist at the hospital. He saw me immediately, prescribed me on an anti-depressant which I knew I did not want to take long term but if I could help myself out of this dark hole then I went for it! I did group therapy with other anonymous patients who were dealing with anxiety, depression. I was referred to psychology in the hospital, psychologists who deal with the mental state of patients who were diagnosed with a psychical illness and along with 16 sessions of counseling.
That being said, months of working on my mental health and physical at the gym I learned that this illness is not me. Just because you are struggling doesn’t mean you are failing. This illness will never define me. This illness is a part of my life and not my whole life. I learned to stop labeling myself as “I am sick” or “I am limited..” I have limitations, yes. I have an illness, yes. But these things will never label me. I learned and I am still learning ways to know what I can and cannot handle within a full day or week.
It was time for me to pick a path for my future. Would I return to school? Get a job? What would be something I could handle physically and mentally? I signed up for a waxing course (hair removal) and then I would follow that course with a manicure / pedicure course to do nails. These were eight-week courses. One thing at a time I thought!
Out of nowhere, NMO had to jump in there again! As I do suffer from eye pain, body pain, joint pain (arthritis) or weakness in areas of numbness some days more than others. I relapsed. This relapse was so bad I walked into emergency wearing dark sunglasses, and they were ready to admit me. I was sad and couldn’t believe it. My mother walked away from the room at one point and I didn’t understand why. She broke down and thought “my daughter is sick again.” The neuro in emergency contacted my neurologist and she gave them the doses of steroids I required. My worst enemy, steroids. They don’t only affect weight, but your mood. Anger, sadness, and numb emotions took a toll on me and I had to work on my mental health again. I will not blame the steroids for all the mood changes because I was truly upset about this other relapse especially when ready to start my esthetic courses. This relapse, unlike my first diagnosis and other relapse, I lost so much hair. I had to get hair extensions and start up my vitamin intake. Since this relapse, I continuously take vitamins that support my immune system not boost my immune system because we don’t want my body attacking itself again!
The steroids worked right away and I was ready to start my courses the following week but being on steroids I left school as soon as my class was done and went to sleep but the steroids slowly taper off and I didn’t feel as hyper or fatigued.
A few weeks later I saw my neurologist after maybe my fourteenth MRI within 2 ½ years. It was time for her to try a new treatment option. Now, in Canada, we are limited to what is approved by the government. Azathioprine is out of the picture with too many relapses, steroids are for my relapses, and plasma exchanges are if I am basically paralyzed again so that leaves us with two options! Rituxin was not approved, so Apo-Mychophenolic Acid also known as Cellcept was my winner. This is the version of Mycophenolate Mofetil available to me in Canada. This has been my working treatment since January 2016, and I could not be happier.
I finished my courses with certificates at the end of July 2016, along with my counseling sessions and continued psychology sessions into the fall. I had decided to move at the end of August (2016) to a bigger city (Mississauga, Ontario) close to my grandpa and mom since she moved as well. This time moving away from the city where I grew up and was diagnosed I did not feel I was running away. It was simply me letting go and moving forward. I kept my neurologist in London, Ontario. I will continue to follow up with her since she knows my case best and I have grown an attachment to such a great doctor.
I have not relapsed (knock on wood) in almost two years since it is fall of 2017. My last MRI showed that my spinal and brain stem lesions are almost not visible but are still there. The only downfall of this treatment has been my skin and healing process is very slow. The body weight is a little more controllable on this medication but not 100%. One cold and I am out of it for two weeks. My skin is sensitive to temperatures especially hot and heat flashes when you are in your twenties is ridiculous! This immunosuppressant is known for causing skin cancer and I have encountered other issues such as pre-cancerous cells of the cervix and had one accessory breast tissue surgery winter of 2016.
I am working a part-time job in what I learned in my esthetics courses and recently got another certification in my field! I love it! I know my limitations in a week or day. I go to the gym to keep active and for my mental health. One thing that I will never stop working on is me. My health is number one, physical and mental. In order to live happy even when dealt with a shitty situation, you have to work at the other aspects of your life and never give up. Some days harder than others, I won’t sugar coat and say that everything is fine and dandy all the time. My joints are just about done typing this up and some days I wake up and dread taking 720mg of cellcept (1440 mg a day). So I try and remind myself it is just something I do in the morning and at night and to not over think it. With that being said, my favourite quote to end part 2 of My NMO diagnosis in Canada… “Often it is the deepest pain which empowers you to grow into your highest self” (Salmansohn, Karen).
