‘I felt the right side of my face go numb. ‘I’m sorry, we found some lesions on your brain.’ At just 20 years old, I was in shock.’: Young woman with multiple sclerosis says ‘I have lots of life left to live’

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“I was 13 and in junior high school when I developed my first symptoms. I had a headache, I was shaky, and a little lethargic. I texted my mom in between classes to let her know how I was feeling. That night we decided to test my blood sugar to see if there was any chance I was hypoglycemic. We wanted to rule out type one diabetes, as my older sister was diagnosed as a type one diabetic two years prior. My blood sugar levels were normal, so we didn’t have diabetes to worry about. My entire family felt relieved. We couldn’t imagine having more than one diabetic in the house, so we felt very fortunate.

Since we still didn’t have any answers, we visited the doctor the next day. They did some blood work on me to see if there was anything detectable affecting me. We found out I had mononucleosis. We finally had an answer. One day after school, my mom told me, ‘You’re going to want to clean whatever you touch. Including computers, door handles, and your locker. Do you remember what you touched before you started not feeling well?’ I said, ‘I was using a computer for an assignment.’ She explained that’s probably where I had contracted the mono, and she also mentioned it’s called ‘the kissing disease.’ As a young teenage girl, this freaked me out a little. My mom knew how to make sure I took care of myself. I brought Clorox wipes with me to school to wipe down the computers, door handles, desks, and any objects I used just to be safe. I washed my hands more than normal. I didn’t tell anybody I had mono; I didn’t want anyone to think of me differently. I was a sensitive person, so even though I was introverted, I still cared about what other people thought of me.

Courtesy of Catherine Belnap

After some time spent living with mono, I didn’t feel the effects of it. It had gone into a dormant stage. I knew there was a chance I still had it within my system, so I didn’t tell anyone well into high school. I don’t think I told anybody until I started dating my future husband during my junior year.

I think everybody struggles during high school. This was when things started to get a little messy. I still had only a few friends. We were all luckily in the same agriculture class. So was my future husband. Dating him created conflict with one of my friends. I don’t do well with conflict. I never have. So when I got caught in between my boyfriend and my best friend and was given ultimatums, I was stressed out and didn’t know what to do. This drama carried into the next year, 2017. The only way for me to get away from drama was through my horseback riding, a passion I developed over the previous year. I loved it; during my riding lessons I could just forget everything and let go of the things bothering me.

Courtesy of Catherine Belnap

At the end of January, I woke up one day and felt very dizzy with no appetite. My mom and I waited a couple of days before we visited my doctor. We wanted to see if it would go away on its own. It didn’t, and we realized something was wrong. The doctor had me lay down then sit up fast while looking to one side. I repeated the exercise while looking to my other side. ‘Yeah this is definitely vertigo, I’ll write you a prescription for a motion sickness medication you can take that should help with the dizziness. If you’re still feeling the vertigo after a couple weeks, come back in and we can rule anything else out.’

I felt terrible, but I have a great family and good friends. They checked on me daily to make sure I was alright. There was one day I remember in particular. I received a phone call from my boyfriend and my friends while they were at school. They called me to let me know they had missed me as I was out for almost a week at this point. I had a good relationship with my teacher, and he joined the call. He said, ‘It’s probably nothing, but it might be mono.’ I replied, ‘I’ve already had mono and there’s a difference between what I felt then and what I feel now. I’m struggling just to get down the hallway from my room to the stairs. And I’m still not hungry.’

I did try to go to school once during this time. I wasn’t usually one to miss more than a couple days a year unless my family had planned a vacation. I don’t think I lasted more than an hour the day I went. I was pretty sick. Vertigo took a lot out of me.

On Super Bowl Sunday, I went to a family party with my boyfriend. I started out feeling okay, but it didn’t last too long and I went downhill fairly quickly. But after Sunday, I don’t remember being sick for too long. That day was the last time I had severe vertigo symptoms. My relationships with my friends were stronger too; life was good again.

Courtesy of Catherine Belnap

I graduated high school in the spring of 2018. In winter, I got engaged to my high school sweetheart. 2019 was a good year. I sold my first horse. I was working full time, going to rodeos, all while planning a wedding. I also found out I had an older half-sister I didn’t know about. We met for the first time in early August. It was an awesome experience and a blessing to have a new sibling. Our family was now complete. It was the perfect time to have a wedding. We got married later that month.

Courtesy of Megan Snell Photography
Courtesy of Megan Snell Photography

The year 2020 started well for my husband and me. We both had good jobs. I was working for a small local furniture chalk paint company, and my husband was working as a car lubrication technician at a car dealership. We found out one of my sisters was expecting a baby in May. We were so excited! This was the first grandchild for my parents and my first niece. I wanted to help them out. I had a gift giving advantage through my work. My parents had an old crib, and my grandparents had my grandfather’s toy chest he made when he was young. These pieces of furniture needed a desperate makeover but would make perfect gifts.

It wasn’t necessarily the most stressful period of my life, but I had a lot going on during the end of March and the beginning of April. My niece was coming soon; I was also working on a project for my in-laws. The deadlines were around the same time. Then my niece made a surprise arrival by coming six weeks early! I thought I had about two months to get the crib and toy chest done. I was able to finish them but it wasn’t until after she came into the world. I was also able to finish the project for my in-laws as well. But only a few short weeks later, I started to feel bad again.

I was at work when I developed a migraine. I also had a small case of vertigo. I didn’t go to work the next day because I still wasn’t feeling well. I contacted my primary care physician and got an appointment with him. I wanted to make sure it was just vertigo and I needed to get medicine so I could get back to work as soon as possible. I had two jobs and wanted to make sure I was doing my part both as an employee and as a wife.

Courtesy of Brian Peck

I received the medication for vertigo, but I didn’t feel like it was doing much for me. A day later, I felt the right side of my face start going numb, from the bottom of my eye down to my upper lip and the roof of my mouth. I made another call to my primary care physician. They asked me if it felt like I had had a stroke, I told them I hadn’t. They were able to get me in for another appointment. My doctor asked me if I had any double vision or change in vision. I hadn’t yet.

Everything else just kind of stumped him. He said, ‘I’m not sure what this is. Can we order a brain scan? I want to make sure there isn’t anything too serious going on here.’ I told him he could. I received the brain scan the next day. I had asked my husband how bad it was beforehand, as he had an MRI before. He said it wasn’t too bad and he was able to listen to music. I, unfortunately, didn’t get that luxury. It wasn’t as bad as I had anticipated though and I received the results a couple of days later. I knew something was wrong, but I didn’t expect the result I received when my doctor called. ‘I’m sorry but we found some lesions on your brain. We suspect it’s Multiple Sclerosis. I’ll refer you to a neurologist.’

I was in shock. I thanked him for calling me. I don’t know what I was expecting from my MRI but it wasn’t this. I immediately called my husband to let him know what I had just been told. By the time he was able to get home, I had my father, my mother, three of my sisters, my younger brother, and one of my brother-in-laws at my house to tell them the news. They were all shocked as well and sorry for me, but at least we had answers for what was going on. My parents said, ‘Well, now we know what to read up on. We’ll be figuring this out with you so we can know how to best help you.’

Later the next day, I called the office for the neurologist he referred me too and got an appointment with him. Since the COVID-19 pandemic had started, it was a telehealth appointment. He had me do a few tests for him to show him how my condition was. He told me it was pretty serious. He started me on an oral steroid prescription to help my body recover from this attack. They worked, but it took a couple of weeks before I felt any type of relief.

A couple of weeks later I had an in-person appointment with my neurologist. Even though I was doing better, he still wanted a spinal tap, also known as a lumbar puncture, to verify the diagnosis. I received the tap a few weeks later. It wasn’t a procedure I would ever want again. But the doctor and nurses who did the tap were wonderful, they checked in with me and made sure I was comfortable.

I got the results 2 weeks later. I hoped they’d be different and prove it wasn’t MS. Unfortunately, they weren’t. We talked about medication and how we wanted to attack this disease. My neurologist suggested Ocrevus. It is one of the most aggressive drugs out there for Multiple Sclerosis. I agreed, as I had been doing as much research as I could with my parents so we could prepare for anything. About a month later I received my first injection of Ocrevus. I sat in a chair for five hours receiving a medication I knew could potentially help me. It gave me a little bit of hope.

Courtesy of Catherine Belnap

Until one day in July.

I woke up to use the restroom. I tried to get up using my right arm but I couldn’t. At first, I thought my arm was tired, as it was early and I was groggy. Then I tried to stand up. I couldn’t put any weight on my right leg. Panic started to set in. I was scared and confused and I wasn’t sure what to do. My husband woke up to my panic and sobbing, asking ‘Catherine, what’s wrong?’ I couldn’t get any words out. ‘Catherine, what’s wrong?’ He said it a little more firmly this time. I finally said, ‘I can’t move my right side,’ in between sobs. He called in late to work so he could help me. This day changed my life, as I could no longer do anything on my own. I’ve always been an independent person, but now I had to ask for help with every little thing.

I called my neurologist to let them know what was going on. They got me in later that day. He gave me a prescription for steroids and told me to fill it if I felt like I needed to; they also had me go in for another MRI. I wasn’t getting any better a couple of days later but I was due to get my second half of Ocrevus the next week. I received my infusion but I seemed to be getting worse now, so I also took the steroids too. I just wanted to get better. I was missing more work than I wanted to. I met with my neurologist again. He told me, ‘We saw more lesions on your brain and on your brain stem. I would suggest you see an MS specialist as there’s not much more I can do with how your condition is now.’

Lucky for me—I had already made an appointment two months earlier to meet with one. I saw my new neurologist a couple of weeks after the appointment with my previous neurologist. I received a lot of information from her about Multiple Sclerosis. It was almost as if I had received the news all over again. Fortunately for me, my neurologist agreed with our medication decision. It was a good choice for how severe my condition is.

It’s been two months and I am still recovering from my last attack. It’s been hard on my body and my mental state. It’s not easy having a disease that can completely debilitate you. I’m learning how to live positively though, and every day comes with differences. I may still be suffering from this disease but I will be living with this my whole life. I’m only twenty years old; I have a lot of life left to live. I want to start a family and have adventures with my husband. I don’t want to throw away my life because it’s changed in more ways than one. I don’t see a point in blaming God or letting this disease defeat me. We all have too much to fight for, no matter what age we get diagnosed.

Courtesy of Brian Peck

Chronic illness shouldn’t be something defeating us. Even though it’s an obstacle we will be battling for our whole lives, we can also let it strengthen us. Yes, defeat is easier, but if you fight, you prove so much more to yourself than you could ever imagine. Hold on to whatever hope you can muster. Hold on to the people who have given you support from the very beginning. It takes a lot of strength to stay positive and to keep that mindset. I still struggle with this. It’s okay to have down days; you have to let yourself feel your emotions. Multiple Sclerosis has inconvenienced a lot of things within my life, but I wouldn’t change a thing. I have a wonderful husband who supports me and loves me unconditionally.

I’ve heard it gets even better, but I’m only at the beginning of the ride.”

Courtesy of Megan Snell Photography

This story was submitted to Love What Matters by Catherine Belnap. You can follow her journey on Instagram. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more about chronic illness:

‘If things don’t improve, we will let you go. They get a choice whether to believe me. My illness isn’t visible.’: Woman describes being ‘dehumanized’ after being fired for being disabled

‘Ma’am, have a seat.’ I wanted to scream, ‘Look at the scar down my chest, I’m not making this up!’ but it was too late. They didn’t believe me.’: Woman finally diagnosed with invisible illness Myasthenia Gravis after 6-year battle

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