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Izabela’s NMO Story – A Lust For Life

Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO

May 15, 2021 – a date I’ll never forget, but I didn’t know then that it would change my life in such a drastic way…

I woke up feeling nauseous, but to be honest, I thought I was just hungover from the one too many beers I had the night before. Unfortunately, I started vomiting and the skin on my shoulders and head was itching like crazy without having any rash. That continued for days, and intractable hiccups were added to my symptoms. I was also extremely dizzy.

At first, we thought it was a stomach issue and dehydration from the unstoppable puking. But since nothing irregular was found in my stomach and my hand became super stiff, it became clear this was a neurological problem. By the time I got to the hospital, my speech had become slurred too.

After an MRI and lumbar puncture, I was given the diagnosis of multiple sclerosis (MS). I didn’t start treatment for it because I was advised by a doctor in France to wait and see the results of my examination by a neurologist in Paris. A couple of months after the appointment with the French neurologist, it turned out that…

I have double seronegative NMOSD.

Fortunately, I was stable and fully recovered from my first attack. Unfortunately, no doctor in Bulgaria agreed that that was the right diagnosis.

After a COVID-19 infection at the beginning of May, I started having one relapse after another. Everyone then agreed that I had neuromyelitis optica and I started a treatment called Rituximab. The Rituximab was ineffective and I had two much more severe relapses than before. My symptoms were loss of pretty much all sensitivity of my right hand and severe paresis of my right leg. Then we changed my therapy to Tocilizumab, and it’s all been well since then.

Today, overall, I have recovered pretty well – I can walk over 8 kilometers without getting too tired. I can jump, dance, even run a little, all the things we love doing with our legs. My hand is still somewhat numb – I can’t really feel warm water; it has to be pretty hot to sense the temperature. But now, I am able to do almost everything that requires fine motor skills, even writing with a pen. I continue rehabilitation, and I am physically active every day.

How I felt emotionally is an even more complicated story...

I was for a very long time in denial – I was trying to convince myself that something like this couldn’t happen to me. Then, I felt paralyzing fear and wasn’t able to think clearly. After that, I started feeling extremely sorry for myself and blaming myself for getting sick. At one point, I was even thinking that my life was pretty much over since the doctors couldn’t stop the relapses and I had huge lesions on my spinal cord.

I don’t know when I began to accept it, but I felt calm and started feeling hope again. It wasn’t a sudden feeling, though; it grew gradually. Truth is, I never lost faith, but it was dormant for a long time. It finally awoke, and I started feeling myself again. But better – wiser and more confident about my abilities. I have cleared out all the unnecessary bullshit (and people) from my life. I have welcomed new experiences, people, and visions about the world. I was extremely stressed out and burned out months before I had my onset, so somehow, this crazy disease helped me see the big picture and taught me how to preserve my soul and my body, for that matter. I now listen to it carefully, and I hear what it needs.

I am not saying I’m not in pain – physically or emotionally.

I am, but I’ve learnt how not to turn it into suffering.

I haven’t done it by myself, of course. I have the unconditional support and love of my parents and sister, friends, relatives, and therapists of all kinds. It isn’t easy, and I have to make an effort every day. It requires a lot of patience and a lot of lust for life. But I do believe it’s worth it. I have learnt so much about myself and about the strength and resilience that I carry.

It is a very unpredictable disease, and it can make life feel really dark and uncertain. But I believe we can all find a way to transform the darkness and uncertainty into something beautiful.

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