Blog (13 wpm)
…turning thoughts into print 13 words per minute
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 positive. The theory was Greg’s adult son had brought it back on a flight four days earlier and passed it on to Greg. I had hoped our cases...
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. As of today, I am doing very well… But before it all, I wanted to write about the daily joy of my life: my dogs. Wyatt and Ki make...
Disabled, not Disposable
It’s been two years of caution, two years of celebrating my birthday on Zoom, and two years of not going to trivia night at my local brewery. I want to go out, but I can’t because mask mandates are gone. Not having to wear a mask may be a small thing to many, but it’s huge to the sixty-one million Americans living with a disability and me. I was seventeen in 1990 when I was diagnosed with...
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 yet to get Covid, and being vaccinated has given me a false sense of security. Sunday, I went to a book signing for my friend’s...
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 dogs for a walk, procrastinate, complain about my boyfriend, watch the hot show on Netflix, etc. Yes, the way I do things is...
Happy Valentine’s Day
When I was 21, four years after my diagnosis, I worried FA had been a major reason I was perpetually single. Who would want to be with someone who would eventually use a wheelchair and/or die by their mid-20s? I didn’t randomly tell people, “I have a disease that will make walking tough and might kill me at 25.” But it would eventually come out. (By the way, I’m 48 now—that prediction obviously...
A matter of weight
In no way, shape, or form, am I using this platform to promote weight loss. Nor do I want to body-shame anyone. This is my own story and perspective. “Why do you need to lose weight?” My cousin Paula said to me over the phone. “You’ve been a...
Accessible food?
"It all makes sense now," I interrupted the blonde nutritionist across from me at the gym I went to. She had been explaining how eating more salad would help me lose weight since taking a traditional exercise class wasn't going to work for me. I stared into the cloud of particles of dust in the air that were highlighted by the beam of light in her office. "What? Am I not explaining…?" She looked...
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 still didn’t understand. “It’s rare.” I wanted, (but not really), to make her feel better for not knowing about the disease I had...
Welcome!
Welcome to my website and my first blog post! First let me tell you a bit about me I grew up in the an ‘80s—I couldn’t get enough of Molly Ringwald or Duran Duran. I’m originally from Wisconsin and love cheese and the Packers. When I was 17, I was diagnosed with a genetic, progressive disability called Friedreich’s Ataxia, (FA). What is FA? It took me a while to understand and I am still...
