Welcome to This Is RRMS, a series spotlighting members of the Bezzy MS community. There’s nothing like hearing and learning from others who’ve walked in your shoes.
On March 17, 2009, St. Patrick’s Day, MS took me down… literally. I was on a run, and my legs seemingly just gave out. I thought I pulled a disk. But alas, that was not the case.
Prior to this day, I had also been tripping a lot just walking my son to the bus stop. I made light of it when it happened, but it was happening frequently.
I got nervous and called my internist. She saw me immediately and gave me an exam. When she had me close my eyes and asked me to tell her which toe she was touching, I felt nothing. I knew right then there was a problem.
She looked at me and could see the fear in my face. I distinctly remember that moment. She said, “Don’t panic. I’ll let you know when it’s time to panic.”
She called her colleague, a neurologist, and he saw me right away. She walked me down to his office for nerve conductivity tests.
At first, he thought it was Guillain-Barré syndrome (GBS). But after the blood work came back normal, he knew it was something else. That led to a battery of tests, including an MRI and a lumbar puncture. By the end of the week, my body had become completely numb, and I was admitted to the hospital to begin high dose steroids.
Ironically, this was the same hospital I worked for at the time. It was so odd to be the patient instead of the employee.
I was in complete denial that anything could be wrong. When my internist came to check on me the next day, I asked her, “Is it time to panic?” The look on her face said it all.
After my diagnosis in 2009, I continued to work as a contractor in marketing and PR for the hospital. I was blessed that my manager didn’t push me to get right back to work. He gave me time and space to come to terms with it all and to grieve.
Grieving is a necessary step to moving forward. You’re grieving the life you once had and the uncertainty of the future. It was a lot.
I continued to work until 2017, although the stress took its toll. I lost my contracting gig when the hospital merged with another. Now that I no longer work, my life looks and feels very different.
My job gave me purpose, and I truly loved what I did. Now, my focus has changed to keeping my mobility and staying healthy.
Yes, it’s boring at times and sometimes unfulfilling. But I enjoy my time exercising at this wonderful place called the NeuroBalance Center. The center helps people contend with conditions that affect their mobility, balance, strength, gait, coordination, and speech.
It serves people living with chronic, progressive disorders that impact movement, including MS, Parkinson’s disease, and various neuromuscular and autoimmune diseases.
We share struggles, and it truly provides a sense of community. Not to mention, it helps keep my legs strong through the myriad of classes, physical therapy, and one-on-one personal training sessions they offer.
I am very fortunate, and I believe luck has a lot to do with it. I am still doing rather well 14 years after my diagnosis. Although my neurologist believes I have had MS since college. So, in reality, it’s been 34 years.
Fatigue is usually my biggest issue. I am still capable of doing mundane errands like food shopping and laundry, as well as going out with friends to dinner and concerts. I just have to avoid overdoing it and space things out.
Walking can be a challenge. I can’t go long distances, as one leg is far weaker than the other. Sometimes, I panic a bit if we’re going somewhere that will require a lot of walking. In some instances, I won’t go. Otherwise, I plan accordingly, and there’s always an Uber!
I’m also extremely lucky to have a wonderful husband who picks up the slack when I cannot. If I’m having a bad day or week, he’ll get dinner or do the food shopping or even the laundry. He has been my partner in all of this. I could not imagine doing this life without him.
After my diagnosis, my neurologist suggested I see an MS specialist. My symptoms were fast and furious, and he did not have that much experience treating MS. He referred me to an MS Center at a prominent hospital in downtown Chicago.
I remember getting off the elevator and seeing wheelchairs lined up in front of the waiting room. I had a complete breakdown in front of everyone.
How did I go from running 3 miles a day to the prospect of a wheelchair? It was all so overwhelming. I thought I had been handed a death sentence. I now know that was not the case, but I wish I’d known that back then. It would have saved me a lot of heartache.
This is a tough one. My first year living with this disease was the hardest. I was in what seemed to be a year-long relapse. The medications were hard on my body. Many doctors regard disease-modifying therapies (DMTs) as a one-size-fits-all approach. I could never understand how a small, petite woman like me at 96 pounds should be taking the same dose of medication as a 225-pound man!
Why isn’t the dose of the medication titrated based on size? After many issues with three different DMTs, I stopped everything and went completely holistic. No drugs, lots of supplements, chiropractic care, healthy eating, and exercise. And for me, it is working.
Now, this approach is not for everyone, and some doctors completely dismissed me. I found one who supported my decision. We have parameters around it, like yearly MRIs, to make sure there are no new lesions. For the most part, I have been doing well, and my neurologist has been very supportive.
I own my choice to stop the meds, though it’s not for everyone. I will never look back and say I should have, would have, or could have done this or that. I stand steadfast in my belief that I am doing better without them.
You don’t get it until you get it. And that is the basic fundamental issue with any chronic invisible illness.
I wish people would understand that fatigue is real. That cog fog is real. That MS is real!
When I tell my friends about my symptoms, no one seems to understand. There are times I cancel or just say no to plans. It could be because of fatigue or because it’s so hot outside that I know my legs won’t work. Or because they’re doing something that involves a lot of walking, and I can’t keep up.
People look at me and say, “You look fine.” I think they believe I made it up, which I find very hurtful. So, my circle has gotten much smaller.
My truest friends are there for me, but this disease can be very isolating at times. I am a private person, and I just don’t feel the need to share with people that I have MS. So, I only told a select few. I thought that if people knew I was sick, they’d pity me … and I am not a pity person. Don’t feel sorry for me.
Now, 14 years later, I am finally starting to open up and feel more comfortable talking about it. It certainly helps to have friends with MS who understand the ups and downs of this disease. But those who don’t battle a health issue truly do not understand the struggle.
The most challenging part of living with MS is the uncertainty. I never know what I’m going to wake up to. Will it be a good day? Will my legs be functioning? Will I have cog fog or energy to do anything? The unpredictability of this disease is probably one of the biggest challenges.
I’m a planner (some would say control freak). But with MS, it’s hard to plan because I don’t know on any given day how I’m going to feel.
I used to stress about it. Now, if I can’t do it, I don’t. I’ll feel bad about canceling or saying no, but I’m not going to beat myself up about it anymore. I just do what I can.
Bezzy has been a great resource to stay informed! It’s also great to have a community of people who understand and support what you are going through.
Some of the posts I read break my heart. Everyone’s journey is so different.
There is a lot of sharing of information: what works and what doesn’t. It’s a safe space to vent and just give the middle finger to MS! Also, I have made some friendships on the app, and we check in on each other, even though we’re states apart.
Shout out to RZ1984. He often checks in on me and vice versa. When we’re having a bad day, we can vent to one another. It’s a very welcoming and supportive community.
Fact checked on October 26, 2023
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