Living with Multiple Sclerosis: A Rollercoaster Journey

Managing Relapsing-Remitting Multiple Sclerosis A Guide to Everyday Life

Living with RRMS

By Samantha Payne Smith, as told to Keri Wiginton

Picture this: you wake up one day, ready to take on the world, only to find that your feet are completely numb. No, it’s not a scene from a horror movie. It was my reality a few months after my wedding in 2014. But hey, at least the feeling came back once I finished brushing my teeth. Talk about a weird wake-up call!

But the surprises didn’t end there. I soon found myself dealing with a persistent pain in my neck that made it difficult to turn my head. If I wasn’t walking around the office with an ice pack, my arm felt like it was being weighed down by an invisible force. It was like carrying a dumbbell without the muscles to justify it.

Naturally, I sought answers for my problems. At first, I thought it was just a muscular issue or maybe even migraines. I tried muscle relaxers, physical therapy, and even visited a chiropractor on my own. But no matter what I did, the pain persisted. It was like playing a never-ending game of whack-a-mole with my symptoms.

Finally, after what felt like forever, I was diagnosed with relapsing-remitting multiple sclerosis (RRMS) in May 2021 when I was 39. Now, I don’t blame my doctor for the delay. She listened to me and genuinely cared, but my fluctuating pain levels made it challenging to pinpoint the cause. It was like trying to find a needle in a haystack, blindfolded, with one hand tied behind your back. Okay, maybe not that dramatic, but you get the idea.

The Coast is Clear: Seeking Answers and Finding Hope

Determined to crack this mystery, I marched right back to my doctor. I let her know that the pain was still relentless, tormenting me day in and day out. It had been a mind-boggling two years, and we needed to uncover the truth. She ordered an X-ray but didn’t find anything fishy. That’s when she decided to take things up a notch and ordered an MRI of my neck and shoulders, almost by accident. And guess what? They found lesions on my brain and spinal cord, like hidden treasure buried deep within me.

I’ll never forget the look on my doctor’s face as she read the report. The way she tensed up, it was clear that something was seriously amiss. In that moment, we couldn’t help but connect the dots between my chronic urinary tract infections and my newfound diagnosis. It was a eureka moment mixed with a tinge of “How did we miss this?” vibes.

To validate the diagnosis, I was sent to a neurologist. Now, I’ve got to be honest, his bedside manner wasn’t exactly award-winning. In fact, he seemed more interested in his computer screen than in me. But, credit where it’s due, he did follow up with the necessary tests. A thorough brain MRI and a spinal tap later, and voilà, RRMS was confirmed.

Doctor, Doctor, Give Me the News: The Pursuit of the Right Specialist

Turns out, the first neurologist wasn’t my knight in shining armor. His communication skills were about as warm as an iceberg in Antarctica. I mean, I get it, breaking the news about RRMS is never easy, but hey doc, a little empathy goes a long way. And don’t even get me started on the fact that he didn’t bother asking if I had any questions. Needless to say, a second opinion was in order.

I set out on a quest to find a neurologist who could truly understand and connect with me. Ideally, I wanted someone who looked like me, a fellow Black woman. Unfortunately, that proved to be quite the challenge. So, I turned to my trusted regular doctor for guidance. Although he wasn’t a Black female, he was a breath of fresh air. He listened attentively, asked thoughtful questions, and made me feel seen. And let me tell you, our visits were so long, I could have brought a sleeping bag and pitched a tent. The man truly took the time to hear my story.

Battling the Beast with Medication

Now, let’s talk treatment. Wrapping my head around the complexities of this disease felt like trying to solve a Rubik’s Cube blindfolded. It hit me hard when I realized there is no cure for MS. So, I took matters into my own hands and opted for lifestyle changes. I delved into a new diet, embraced regular exercise, and even started meditating. I was determined to help myself through holistic means.

But alas, life had other plans. Around six or seven months after my diagnosis, a monstrous pain gripped me, leaving me unable to move my neck. Desperate for relief, I turned to my neurologist once again. This time, he emphasized the importance of early treatment. He warned me that medication wouldn’t perform miracles, but it could help slow down the progression of the disease.

Here’s the thing: my doctor encounters countless patients who have lost their vision or feeling due to MS. Thankfully, my symptoms were manageable, and I was determined to maintain a sense of normalcy. Aggressive treatment seemed like the best way to preserve the life I loved. So I took the leap and started a disease-modifying treatment (DMT) in April 2022. Now, I administer a monthly shot to myself, and while it was initially tear-inducing, it’s become a routine I’m grateful for.

On a lighthearted note, I’m still trying to persuade my husband to shower me with gifts every time I give myself a shot. A little bribery never hurt anyone, right? We’ll see if my persuasion skills are as effective as my aim with the needle.

Together We Stand: The Power of Support

No warrior faces their battles alone, and I am no exception. The support I receive from my friends and family is truly heartwarming. However, I’ve also found solace in seeking out like-minded individuals who truly understand the challenges of living with MS. Online support groups for Black women, such as “Women of Color with MS” and “We Are Illmatic,” have become my virtual havens. These communities are filled with powerhouse women who uplift, empathize, and celebrate one another.

Within these online sanctuaries, we share our triumphs and vent about tough days. It’s a safe space to acknowledge the struggles we face, particularly when those around us may not fully comprehend our experiences. But amidst the camaraderie, it’s crucial to remember that everyone’s journey with MS is unique. I had to learn the hard way that absorbing everyone else’s worries and symptoms only hindered my own progress. MS may be the common ground we stand on, but it should never limit us from embracing our full potential.

Life Illuminated: Embracing the Journey

Living with multiple sclerosis has transformed my perspective on life. While I never asked for this rollercoaster ride, it has forced me to truly appreciate every aspect of my existence. It’s like having a glaring light constantly reminding me to make the most of my time on this earth. To seize every opportunity and leave no stone unturned. A little MS can’t dampen my spirit, especially when I have so much left to accomplish.

Since my diagnosis, I’ve taken the reins and started my own business. Rather than wallowing in uncertainty, I seized the moment when the salon I worked at closed down. The next week, I opened the doors to my very own space. If this had happened two years ago, who knows how long I would’ve spent twiddling my thumbs, stumbling upon my next move by sheer accident?

We all know that life is unpredictable, but for me, living with RRMS is like a neon sign screaming, “Carpe diem!” It’s a constant reminder that we have unfinished business to attend to, dreams waiting to be realized. We owe it to ourselves to live our best lives, embracing every opportunity that comes our way. And hey, who knows, maybe we’ll receive a gift or two along the journey.

Samantha Payne Smith, 41, a multiple sclerosis advocate and owner of Samantha CurlHaus in Chicago, finds support and strength from her loving husband, children, family, and an incredible network of friends.

Now, I’d love to hear from you! Have you faced any unexpected hurdles in life that forced you to embrace a new perspective? Share your stories in the comments below! Let’s support and uplift one another on this wild journey called life.