A new year brings new challenges with NMOSD
Even after a painful attack of my disease, I'm remaining positive
Having to deal with my sixth major neuromyelitis optica spectrum disorder (NMOSD) attack is not how I wanted to end 2024 or start the new year. Unfortunately, it’s just my reality.
What’s considered an attack? It’s when your symptoms hit a high point. For NMOSD patients, that may include optic neuritis — inflammation of the optic nerve that can cause vision loss — and paralysis brought on by spinal inflammation, also known as transverse myelitis (TM).
I can’t say I’m surprised. The first few days of the new year were Wednesday, Thursday, and Friday, which I interpreted as “WTF?”
Last year was exciting for me, but it was also like a roller coaster. I landed my dream job working in training and development for an airline, and I’m thrilled with the new team I get to work with. Being an entrepreneur for almost 12 years before had taught me a lot, but I missed being part of the corporate environment.
My health had seemed stable following the introduction of a new NMOSD treatment to my regimen, but then it nosedived several times. On many nights, I’d lie awake wondering if I was tough enough to handle the uncertainty that comes with NMOSD. The answer is a resounding yes, because I can’t and won’t give up. This is my life, and I want to be a strong role model for my daughter.
Navigating new challenges
That said, having six major attacks back-to-back is a lot for anyone to handle. As I stood in my new office wrapping my brain around the projects I wanted to focus on in 2025, I started to feel that terrifying sensation creep up my legs and into my spine. I could move my extremities, but they felt foreign, numb, and even unattached. Then the pins and needles started, almost as if a spirit were taking over my body. If that spirit had a voice, it would’ve whispered, “You should be scared, because this is going to hurt bad, and you know it.”
I sat down at my desk, hoping it was just a figment of my imagination. The last time I felt my spine get inflamed like this was 15 years ago, when I was diagnosed with NMOSD after a TM attack. How could this be happening again, especially when I’m on some of the best NMOSD drugs on the market? I regretted the decision to sit down, as a major spasm took over my body and quickly turned into an excruciating burning sensation, as if someone were pouring boiling water over my body for 20 seconds.
I had a decision to make: Should I come clean and tell my management team that I have an autoimmune disorder and require immediate medical attention, or should I try to cover it up, push through the last few hours of the day, and head to the emergency room when the workday was over?
Had it been any other team, I probably would’ve tried to hide my NMOSD. But the new folks I get to work with have gained my trust, and the right thing to do was to be honest with them. One of the greatest lessons NMOSD has taught me is how to evaluate how supportive others will be when I need them the most.
As I packed my things to go to the emergency room, which is conveniently one block from my new office, I ran into three of my new colleagues. Not wanting to scare them, I simply said I was feeling under the weather. Later, I sent them a note with the truth, because they also deserve that honesty.
So here I am, starting 2025 with new lesions on my spine and brain. My neurology team plans to switch me to yet another medication because my current treatment obviously isn’t working. Somehow, I’m remaining positive. NMOSD is painful, heartbreaking, and difficult to explain even on the best day, but there’s so much life I want to continue living, so I’m focused on that.
Among the things I want to do are visiting some of my NMOSD sisters and hugging them in person. I also want to take my mom on a family trip we’ve been talking about for decades. I want to achieve great things at work and earn recognition for leading a great team of professionals. And finally, I want to prove to myself that NMOSD won’t win — at least not this year.
Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.
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