Posted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
Part I and II of this story were originally published in 2015 by NMO Stories, presented by The Guthy-Jackson Foundation and the Connor B. Judge Foundation. It was shared again on November 14th, 2019 in In Their Own Words by SRNA (Siegel Rare Neuroimmune Association).
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 movements 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 on August 25th, 2013. I was put on a high course of steroids for seven days and sent home. The symptoms eventually came back but 10 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 8 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, 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 the 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 realized I hadn’t fully accepted what had 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 realized 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 was once 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 loved 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. 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 16 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 8-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 (rheumatoid 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 aesthetic 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 14th 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! Rituxan 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. 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 aesthetics 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).
Here I am again! Writing part three of my story. It is almost 10 years since my diagnosis; I cannot believe it! I have thought about writing part three multiple times since writing part two and that was I believe in 2017/18. It has been quite the ride since then, it is now 2022.
I think the biggest challenges since part two have been accepting my “new” self and continuing to live a life with two autoimmune diseases; rheumatoid arthritis and neuromyelitis optica along with anxiety and depression.
Since my last story of where I was at in my life, I no longer work a part time job for somebody…I am now my own boss! And I couldn’t be happier about it. Why is that? I create my own hours to how I am feeling both mentally and physically. I book clients around my personal schedule. What does this mean? This means I have to put myself first and if I don’t do that, that means stress and not being capable of handling a full day of appointments and/or just life itself.
A week in my life almost always has one doctor appointment, one counselling appointment, 3-5 physical workouts and my down time. After all this comes my business. If I don’t put myself first, I am not capable of performing my work or even maintaining a social life. Since I’m writing this during the pandemic, there is not much of a social life right now anyway. However, when I see my clients not during a lockdown (because I am here in Ontario, Canada), I have created individual relationships with each and every one of them. That to me is great socialization for someone who is such an introvert/extrovert.
Creating a business where I go to my clients to do waxing and/or nails I found that in the beginning it was going to be a challenge. This would definitely contribute to the fatigue associated with NMO. But if anything, it changed my whole life. It inspired me in so many different ways. All my clients are women. We all face different challenges. I think I needed to be put in front of these women to remind myself that I am not alone. Not alone in the sense that I’m not the only one with a physical illness, mental illness, challenges that women face on the regular that you can relate to. I think for the longest time, having a rare neurological autoimmune condition, you feel alone, because even when you describe your illness, you feel the need to compare it to a common illness. Until this day, I continue to do that. I continue to tell people that NMO is similar to MS but deserves a different treatment; not a scientific explanation – that’s for sure!
So in terms of work, I found what works best for me: I create my own schedule and I learned to balance that with working on my physical and mental health. With that being said, there are moments when I still feel overwhelmed or I feel I can’t handle everything but ironically, I can’t stress enough about how important it is to have a routine and limit the stress in life. Unfortunately with NMO, we have to stay away from stress because stress will affect us physically. Looking back on the year I got sick and was diagnosed, I had so much stress I don’t even know how I was living that way that year leading up to falling ill.
One thing I learned even more about myself with this line of work is that I have been an empath my whole life! I care so much about people, their lives, their concerns, their problems that I hold on to that deeply. This in turn, I learned being an empath is not a bad thing or negative; it means I am a good person! However, holding on to other peoples’ problems on top of my own life and health issues is too overwhelming sometimes. That is not good for my physical health. I have been working on this for the last six months in counselling on how to separate work from home and work from myself. This is hard but it is and was much needed.
Accepting my “new” self is what I continue to say until this day since 2013. As a young female, I have the hardest time of letting go of who I was pre-NMO and who I am now. More in the sense of my physical appearance. I have certainly come a long way since 2013, however I still have a lot of work to do. Mentally, I feel I should still be that 135lbs girl I was before NMO (I blame NMO and all the medications for my weight gain). It was not something I asked for nor did I deserve it. However, I don’t sit in this misery or depressed state more than a few hours or no longer than one day.
It’s okay to cry and feel it, but not all day every day. I won’t allow myself to go there anymore. The year 2015 was an eye opener when I was letting NMO defeat me and put me in the darkest place I had ever been. I know sitting in that pain, I wont succeed in life, in my work, or in my personal relationships. So what do I do about it? I fight back CONSTANTLY.
Weight gain from steroids and/or metabolism slowing down because of long-term use of steroids and antidepressants seem to be a common topic in the NMO Facebook groups. When I read other patients’ posts about the weight gain struggle (mostly women), I understand what they’re saying 100%. I find that when I discuss my weight issues with someone who doesn’t have NMO, they don’t understand me. I am so thankful for NMO Facebook groups and the NMO world growing everyday because it helps me realize and feel like I’m not alone.
When I was hospitalized from August-December 2013, I realized that food was something that gave me comfort in the hospital. Everyday, I was being poked, tested and in pain. I actually have no recollection of September 2013 which is scary for me because I know to an extent, it was due to the trauma of all the physical neurological pain ( I would cry and scream). What I do remember most is I looked forward to the people who visited, called, talked to me, sent gifts and continued to be there for me until this day – new friends and clients included.
Back on the food part: food was something I looked forward to during my day as well. This created a problem for me after the hospital. I gained comfort with food, emotional eating and some binge eating. It wasn’t until 2017 when I realized that I went to food for comfort. I gained the mentality that “I’m fat anyway, I’ll just eat this” or “I workout but nothing happens so I will treat myself to something.” Once I realized that I had this issue that developed in the hospital in 2013, I told my counselor and worked on where it was stemming from. This has really helped me in the physical exercise department as well.
In 2019, I thank one of my friends every day for introducing me to a gym in my community called Onyx Fitness (Milton, Ontario, Canada). This is a personally-owned gym, not one of those gyms you go in with headphones and ride an elliptical for 15 minutes and do some free weights. That worked for me pre-NMO (I have been working out in a gym since I was 14 thanks to having such a fit family). But this method did not work for me so much after the diagnosis.
Onyx Fitness is like a boot camp – something that shocks your body and kicks your butt. Going into this gym, I wondered if it was good for my arthritis and NMO? Was it good for my foot that has numbness? What if I fall and break something? But this gym changed my world. This gym and the community (family) there made me realize I can do this. What exactly did this gym do for me? Trainers at this gym helped me modify movements, because of that numbness in my left foot (outer calf) caused by permanent nerve damage from 2013. I managed to lose weight not from just changing medications, but from trying different exercises I had never done before. I also made changes in the way I ate. I couldn’t believe the food habits I had before I started working with a nutritionist at this gym or tips/tools from the owner and trainers. This helped my comfort eating issues. All these new things really helped my depression too. I started feeling good about my “new” self. When I joined this gym, I could barely tell people about my NMO. I still hesitate saying neuromyelitis optica because people always follow up what, “what the heck is that?” But I started opening up to people about my immunocompromised body and that I have limits, challenges, and appointments often. The more you talk about it, you start accepting or maybe not even accepting, but allowing yourself to accept that NMO is a part of your life and that it is not your whole life.
Not everyone with NMO can see or walk again. I was certainly blessed with having plasma exchange in 2013. Even though I hate prednisone so much, these are the things that got me on my feet and out of a paralysis state. I can tell people I was paralyzed from the waist down, but not until you’ve been in my shoes or the shoes of someone with NMO; it would be hard to understand. I have accepted that not everyone will understand. I believe those of us who live with NMO will or have already found what works for us. For me, I have to keep moving otherwise my rheumatoid arthritis will stiffen up, or the weight gain will creep back, or the depression will steep in and all these things with having NMO just lead to relapse.
I know I have talked about a lot of the positives that have been happening in my life thus far. However, there have been a lot of obstacles along the way since writing part two. This includes:
As of December 2021, I have had about 25 MRIs. Every winter when it hits -10 degrees Celsius or colder, the pain in my bones is HORRIBLE. Those are the days when I don’t want to get out of bed and working out feels harder because my joints are SO stiff. Having NMO is like accepting the fact you have inflammation absolutely everywhere; not just the spinal cord and brain stem. I can feel neurological electric shocks in my feet after a busy day. I wear compressions stockings because it turns out I have lymphedema. Brain fog is seriously a thing; memory problems being the biggest symptom for me. The list just goes on. The reason I mentioned the positives first is because that is what I am learning to do with my life. I cannot let the negatives take over.
With that being said, one more addition to my part three. I dedicate this part to not only myself because I have come such a long way but to my best friend, now angel, Colleen. Colleen would be so proud of how far I have come. I can feel her telling me to laugh and smile after allowing myself to cry, eat a bowl of soup or drink ginger, turmeric tea and get frustrated. She would send me anti-inflammatory information all the time, lay in bed and cry beside me because I had a relapse, or the next test or MRI or doctors appointment. She even wanted NMO and my name tattooed on her body. She was my soul sister and she always said I was her angel on earth. But now, she is my angel. When Colleen passed in June 2021, I almost had a relapse and found myself in bed, in the dark, with eye pain. Next thing you know, I was in the emergency room. Doctors mentioned steroids. I cried. They mentioned inflammation of the optic nerve. I couldn’t believe that the stress of the sudden death of my friend would cause such physical trauma to my body. This shows you how fragile my body is with NMO. I got through it and turns out, it was a severe chronic migraine that lasted more than 72 hours. After I recovered from this, it was constant counseling sessions, down time, work time and working out helped me the most.
I will continue to manage my NMO and mental health as best I can. I can’t wait to see where I’m at in a couple years. Change is hard, life changes all the time, and when you’re not prepared for a change, it can create fear, especially with me. I’m not allowing the fear of health issues that arise to consume my life anymore. Harder said than done. But I will continue to work like I have been and fight whatever gets thrown at me next. You can choose to go back toward “safety” or forward towards “growth”.
