Only the lonely - my journey

I was just diagnosed with NMSOD a year ago.
It took 3 years going from hospital to hospital and numerous tests - still going on to check if the treatment keeps my system stable.

First Symptoms of NMOSD

It all started with pain in the arc of my feet. I had to use a cane to walk properly. Went to a doctor that diagnosed PLATAR FACILITIS. The medication did not work. That same night I lost my hair. Taking shower saw my galling going thro the drain shower….😱

A week later, because I just turned 50, I had to have the SHINGLES vaccine. The doctor said I was not a candidate, too young. A couple of days later, my left eye had a pain so bad I could not go to work. My face got swollen and painful. Scabbs started to show up, no drainage. Thought because I cane back from a manufacturing audit, thought I got something over there. Not possible. Got my vaccination updated.

Went to the ER - to a specialist that confirmed I had SHINGLES. They forwarded me to an eye specialist. Went home. That was the last I recall. I opened my eyes in a hospital bed. No recollection of what happened in between. Was told I had a mild stroke. Couldn’t walk… Had to learn how to walk. Had to learn how to eat. I had a feeding tube, could not swallow. Even now and then I had that issue I’m still chewing on pills I can’t swallow normally.

Emotional toll of NMOSD

Realized I have lost my left eye vision. As a graphic designer, felt my world ended. My motivation, my life was just wasted. My wings cut without reason. Anxiety, frustration, disappointment. My world came crumbling down.

Found refuge on writing, but still the results of this illness haunts me, as a disabled person I’m useless. The pandemic made it worse: No social life. No talking.

The problem of this illness is that no one knows I have it, unless I talk about it, therefore they think I lie. Being a writer, they think I lie. I just found a way to keep myself at peace by writing and contributing to the awareness of the existence of of NMSOD. If you have also being diagnosed, you will know what I mean.

Thank you🫶