Last in a series. Read part one. People often are sympathetic when they discover I had back surgery at age 13 to have a Harrington rod placed as a treatment for idiopathic scoliosis. They seem stunned when I show them pictures of me in a full-body cast after…
Friday, Sept. 18 is National Concussion Awareness Day. To raise more awareness of how dangerous concussions can be, I’m sharing the most difficult experience of my life. This is the first in a two-part series. *** OK, I will admit it. I was wrong. I’ve probably never…
Music has always been my escape. One Christmas after I had back surgery as a teenager due to severe scoliosis, the only gift I asked for was a Walkman. The ability to have music surround me, thanks to my headphones and a small, portable radio, seemed like the only…
Second in a two-part series. Read part one. Pain management with cannabis takes conscientious planning when using the inhaled product. I learned quickly how little it took to relieve my breath-stopping pain. But while a few puffs relieved the pain, a few too many relieved me of all responsibilities…
First in a two-part series. I am certain my children never thought they would see the day their mother would use cannabis, let alone share my experience about its benefits with the rest of the world. If anyone asked them about their mother’s stance on weed while they were growing…
Every year since my Lambert-Eaton myasthenic syndrome (LEMS) diagnosis in 2016 has brought unexpected experiences. In the past year, my eyes have been opened to the amazing resilience of the mothers of rare disease patients. One mother I am blessed to have become friends with is Lori Dunham, also…
When I was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) in 2016, I quickly learned that I would need to educate everyone else about my ultra-rare disease. The need to educate people about LEMS is why I started writing. Last month, I fell and suffered a concussion. Looking back, I…
It seems that one can’t turn on the news, scroll through Twitter, or read Facebook these days without seeing a reference to the antimalarial drug hydroxychloroquine and what it might do for patients with COVID-19. So, it’s important for me to share the story of how hydroxychloroquine changed my…
The cold surface felt good on my cheek. I turned my head to the other side, looking for fresh coolness for my other cheek. Slowly, I realized the cool feeling wasn’t coming from a soft, fresh pillowcase. I was facedown on the hardwood floor. “Why am I sleeping on my…
I’ve never struggled more with writing a column. How does one write a column for Lambert-Eaton myasthenic syndrome patients who are part of the high-risk category during the COVID-19 pandemic? My normal writing schedule was useless last week. If I had written my first draft and let it sit before…
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