COVID, part I

I am breaking this post about my COVID/ER experience into two…Be safe!!!!!! Was I going to die? I stared at the word “positive” on the computer screen—the results of my COVID test. My boyfriend Greg, who had started coughing a few days before me, was also...

Canine therapy

Well, it happened. One week ago today, I tested positive for COVID-19. After two years plus of caution, I, along with at least three of my other friends, who had been equally vigilant, tested positive this past week. I will post more details about my experience soon....

Risky Business

Not only do I have Friedreich’s Ataxia, but I also have Multiple Sclerosis (MS). The medication I take for the MS compromises my immunity. According to my neurologist, the drug has not been linked to higher instances of  Covid-19. Maybe that knowledge, the fact I have...

Happy Rare Disease Day

Having Friedreich’s ataxia makes me unique, and I am one of 20,000 people in the world living with FA. Despite the extraordinary context of my life, I dare to call it ordinary. I am crabby in the morning until my first cup of coffee; I shower, get dressed, take my...

What is FA?

“Fred’s tax, what?” The nurse stood over me as I sat in the exam room. I giggled and rolled my eyes. Time to educate another medical professional. I drew up my breath to be sure my voice was clear. “Friedreich’s Ataxia.” The mouse-like woman’s face was blank like she...

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