By Iliana Barahona
Part I of this story was originally published in 2015 by NMO Stories, presented by The Guthy Jackson Foundation and the Connor B. Judge Foundation, which you can view here. Part II of this story was published in 2017, which you can view here.
Sometimes I think I could write a book about my story with NMO.
I was 21 years old at the time, and it was the end of summer before I was ready to start my third year of university. I woke up one day and noticed that I was dragging my left leg around. It was numb and tingling, a feeling I had never felt before. Eventually the symptoms got worse – I couldn’t keep my food down, I lost control of my bowel and bladder and it took multiple emergency room visits before they actually took me seriously and admitted me into the hospital. I was admitted into the hospital for the first time August 25th, 2013. I was put on a high course of steroids for seven days and sent home. The symptoms eventually came back but ten times worse! My mother and I went back to the emergency room and told them we weren’t leaving until they got this all figured out. From that night on I was in the hospital for four months, and the last month I spent at a rehabilitation centre learning to walk, run and even shower on my own.
The first month of my hospital stay remains a blur; it was the worst time, and I don’t remember much to this day. The memories of living with neurological pain, not being able to walk, eye pain, not being able to shower on my own or even have any control of my bowel or bladder were a nightmare. The doctors were doing multiple tests to figure out what the heck was wrong with me! Tests included: multiple X-Rays, ultrasounds, two lumbar punctures, a skin biopsy, barium swallow exam, multiple blood tests, a gallium scan, CAT scans, and a total of eight MRIs. The doctors were thinking that I might have multiple sclerosis or even lymphoma, which required them to do a surgical biopsy of the cone of my spine. Just a few days after that surgery, all bad things like lymphoma were ruled out and I tested a weak positive for neuromyelitis optica (NMO). The doctors here wanted to make sure that this was my diagnosis and sent my blood off to Oxford, England. When the doctors heard back from them, then it was time to start treatment.
I had my laptop in the hospital, and all I did was research. I learned that this orphan disease deserved a different treatment than multiple sclerosis, that basically your own body is attacking the healthy cells, and last but not least, that most of the research for this disease is done in the United States, which could be a contributing factor to why my diagnosis took so long.
I had plasma exchange treatment for five days and unfortunately, from having so many IVs in both arms for the time I was there, the tissue in both arms was so bruised up and damaged that they had to put a central line in to conduct the treatment (a tube inserted into the neck). Immediately after, I started steroids and was eventually sent to rehabilitation.
Today I am on Imuran (Azathioprine), which was the one drug that the government of Canada approved me to take. But I am currently living with depression and inflammatory arthritis. I returned to school, and I am walking. Do I still feel like I am battling and overcoming what happened to me in 2013? Of course! But my way of thinking is that this is not a disease that will overcome anyone that has been diagnosed with it. It is only a minor setback; positive thinking, living a healthy and active lifestyle is important…what defines us is how well we rise after falling.
The 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 was put on a high dose course of steroids.
With NMO, staying away from stress is number one. It is impossible to live a life stress-free. It is, however, possible to live and cope with stress. I was negative about everything in my life. This included my weight due to the Azathioprine (an immunosuppressant) and steroids, not being able to carry a full course load at school, not being able to drink with other university friends, and 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 were hearing it from me in different ways, and 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 to let her know that I needed major help. She referred me to a psychiatrist at the hospital. He saw me immediately, prescribed me 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 would go for it! I did group therapy with other anonymous patients who were dealing with anxiety and depression. I was referred to the psychology unit in the hospital, and I worked with psychologists who deal with the mental state of patients who were diagnosed with a physical illness and received sixteen sessions of counseling.
That being said, months of working on my mental and physical health 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 “sick” or “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 (hair removal) course, and then I followed 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! 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 the emergency room 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 neurologist in the emergency room 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. During 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 I don’t want my body attacking itself again!
The steroids worked right away, and I was ready to start my courses the following week. Being on steroids, I left school as soon as my class was done and went to sleep, but the steroids slowly tapered off, and I didn’t feel as hyper or fatigued.
A few weeks later, I saw my neurologist after maybe my fourteenth MRI within two and a half 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 exchange is if I am basically paralyzed again, so that left 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 again (knock on wood). My last MRI showed that my spinal cord 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, and when you are in your twenties, this 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 in 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 happily even when dealt with a crappy situation, you have to work at the other aspects of your life and never give up. Some days are 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 overthink it. With that being said, my favourite quote to end part two of My NMO diagnosis in Canada… “Often it is the deepest pain which empowers you to grow into your highest self” (Salmansohn, Karen).