My MS Story
March is a significant month for me for several reasons but this year, the fact that it is MS Awareness month is so key.
If you’ve been following me for a while, you may remember that in 2014 I was diagnosed with multiple sclerosis. It’s been an uphill battle since then but last year, I had the worst flare that I had and it opened my eyes to the fact that there are so many people in my life that have no idea what MS is.
What is multiple sclerosis?
Multiple sclerosis (MS) is an unpredictable disease of the central nervous system that disrupts the flow of information within the brain and between the brain and body. There is no cure, and anyone can present it.
MY STORY
I was diagnosed after I lost 90% of my vision in just one day. I’ve been blessed to not have many complications after starting disease-modifying therapy shortly after that first episode, but it’s been quite the ride from then until now.
2014
I ended a confusing day in my apartment surrounded by boxes and still planning to move from Atlanta back to Raleigh, NC that weekend. I finally found the designer job at an architectural firm that I was so excited about and couldn’t wait to get there. I knew that something with my vision wasn’t right, and after visiting my optometrist that day, I knew that the problem wasn’t with my eyes. By the time I was returning from sushi dinner with my friend Kelli, I could barely see at all and thought I just needed rest.
So…in my state of denial, I thought, I’ll just go the bed and make an appointment in the morning. Soon after, my dad called to see how the packing was going.
I said, “Fine, but I’m having this weird thing going on with my eyes….” , as I explained my optometrist’s appointment and what his findings were.
My dad said, “Niki, if you go to sleep tonight without knowing what’s going on with your brain, you may not wake up.”
Well, that scared me enough to have my friend Kelli take me to the emergency room.
That night began the journey to my multiple sclerosis diagnosis and changed my life forever. I wrote about it in detail here, but that was truly only the beginning.
My parents and I after recovering from an episode
After my initial diagnosis, I chose a disease-modifying therapy and continued on with life as I knew it. My vision mostly came back, and I kind of tucked my diagnosis into the back of my mind. The rest of my life was moving so fast, I didn’t really deal with the diagnosis because I didn’t have to.
Until I did.
2019
Fast forward to the end of the decade… Still floating on cloud 9 after our engagement, I woke up on Sunday to get some work done on our One Room Challenge makeover. I laid out all the wallpaper strips, turned on some worship music, and went to town cutting. The next thing I remember is Troy coming into the room and realizing I had been asleep for an hour.
I continued throughout the afternoon in the glow of love but noticed my balance was a bit off. I woke up the next morning and realized I felt even more off. I made a quick phone call to my neurologist’s office to speak with a nurse about my symptoms. After speaking with my doctor, he recommended I come in for a visit. I walked out of my short appointment with a plan to give myself at-home steroid injections until I could start a new infusion therapy the following week.
I gave myself injections in my stomach for 5 days. Instead of feeling better, I got worse. I was so fatigued when I did move around the house, I had to brace myself because my balance was so off.
“Just checking in on you, how are you feeling?”, my doctor asked when he called on Thursday. When I told him that I felt worse as the days went by (although I was doing the treatment at home) he had his nurse schedule an MRI exam the next day.
I remember getting home after the MRI and thinking about what I would eat for dinner, and before I could even get out of the car, my phone rang. My doctor read the MRI results and my brain lesions had multiplied so much that he recommended I be admitted to the hospital for a 10-day minimum stay immediately.
Shocked. Devastated. Confused. Scared.
I didn’t even know what to think but given the tone of my neurologist, I knew this was going to be the fight of my life.
Confused and exhausted in my hospital bed in 2019
Over the next 2 months, I spent two weeks in and out of the hospital getting intensive steroid treatments, plasmapheresis and eventually chemotherapy.
Although I was not well, I was so concerned about design projects that were underway, my social media posts, my One Room Challenge in progress, but those who loved me were just concerned about me. I struggled to be present at the moment and focus solely on my healing.
My neurology team was concerned that the flare was so exacerbated that if they didn’t take the most extreme measures, I may have permanent brain damage.
I cannot express how grateful I am for having a doctor who listened to me when I expressed my concerns, having access to care, family, and friends that advocate for me. There are SO many people who do not get diagnosed or even have the provisions needed to live with this disease.
It took me months to fully heal from my last flare and today, I’m finally adjusted to my new normal. I’m still able to run my company and serve my clients. I’m still able to write this blog. And my prognosis is that under my new DMT, I should have very few flares for the rest of my life.
Hello, World!
Why am I sharing this?
Well, after all I went through last year, I realized this disease was not something I could push into the back of my mind as if I wasn’t living with it daily. I also realized there are so many people out there who do not know someone living with MS and I have a platform to share my MS story. My hope is that putting a face to the disease will take away some of the stigmas that may be associated with it. When I mentioned multiple sclerosis in my IG stories earlier this month, I promised I would share more about it after many responded they wanted to learn more.
My prayer is that if you’re reading this blog, my story will inspire you that you can still live the life of your dreams WITH multiple sclerosis. I hope 5 years from now I have even more victory to share and I appreciate each and every person that lives with and those who support someone living with a chronic disease.
How can we support a loved one with MS?
I can only speak from my point of view, but these five tips apply to anyone battling with this disease.
Consider accessibility - MS patients have varying symptoms but many have mobility challenges that impact their daily lives.
Be patient & apply understanding - Sometimes it takes time for them to be able to articulate what they need.
Don’t assume you know how they feel - You can’t know how they are until you ask.
Do not minimize their pain - Never estimate how much pain someone is in based on what you see.
Seek out information from credible sources - There are so many wonderful resources online to educate yourself. I’ve had to study for myself!
Click here to learn more from the National Multiple Slerosis Society
I’d love to know.
Do you have anyone close to you in your life living with an autoimmune disease? How has it impacted your life? If you’d like, we can continue this conversation. Shoot me an email! I look forward to hearing from you.
