True Stories about Living with Charcot-Marie-Tooth (CMT) And Other Relevant, but Unrelated Tales
I was flagged by Sister Helena in 5th grade; she sent me down the hallway to a dark room, where I sat until a woman instructed me, “Read the eye chart.” I started at the top row and slowly made my way down to the third row, “E, F, P, no, Ummm B, F? no, […]
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Flipping through my expired French passport, Gilles made a loud gasping noise, “You haven’t been back to France in 18 years!” “C’mon. It can’t be that long,” I countered. Squinting to see the faded passport stamp, I made out 15/06/2003. “Yikes! Where have I been? What have I done? Where’d the time go?” I wondered. […]
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Rip Van Winkle. Ring a bell? He’s the fellow who wandered about in the Catskill Mountains only to meet up with a group of ornately-dressed bearded men who uttered not a word. They may not have been a chatty bunch, but the liquor they shared was laden with a sleeping potion that stole 20 years […]
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Top Twelve Reasons I’m Talking About CMT during Awareness Month 12) Confused Faces-When I tell people my son has Charcot-Marie-Tooth disease, I get looks like this: Let’s stop the nonsense. I’m looking for reactions of recognition, like Dr. House’s below: 11) Dentures? Besides having had too many cavities, crowns, and pulled teeth, there is […]
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Idling outside a business in Charlotte, VT, I glance at my brother who is skimming his notes, “Owner’s first name is Phil. Started the company in 1984. My friend, Tina knows Phil’s wife, Patty because their kids ride horses. Got it. ” Then turning to me, with a smirk, he reminds me of my role, […]
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February 28 was Rare Disease Day!! Whoop-Dee-Doo! Is that what you are thinking? Hold on. Before you get all judgmental on me, let me explain why I believe Rare Disease Day to be a noteworthy event. Rare Diseases- The Backstory Passed by Congress in 1983, the Orphan Disease Act defined a rare disease as […]
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Everyone gets down from time to time. When I am not in a good place, I try to think about something positive and uplifting. Sometimes, well okay, often, my mind brings me to unusual places, which make me laugh. Let me share 9 of my thoughts with you. Do any resonate? You are all winners. […]
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Her parents passed all the tests with flying colors and were deemed to be fit and loving. The arrival date was only 2 weeks away – just 2 weeks! So little time to prepare for the new little one – and right before the holidays, too – the best Christmas present ever! I melted when […]
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As new technologies evolve and advance, I find myself yearning for a simpler, less complicated life, where the pressure to keep up with modern advances slows so we can all just take a minute. WE ALL NEED TO TAKE A MINUTE! Overwhelmed by continual noise – texts beeping, phones ringing, watches vibrating…I’m leaning toward Neo-Ludditism, […]
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Oxycodone, Hydrocodone, Mexiletine, Neurontin, Cymbalta, Lamictal, Lyrica, Percocet……. were just a few of the medications I had tried to get rid of my chronic foot pain. The lists of potential side effects were miles long, which totally freaked me out. Anxious people typically do not like to take medication because they are too worried about the […]
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I just spent a week in in Burlington, VT, the town where I was born and raised. The flight seemed longer than usual, which is often the case when I’m excited about returning “home.” The second leg of the journey is always made in the tiniest of aircraft’s, […]
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Dedicated to all my friends who have a love/hate relationship with shoes. “I love those shoes….OMG – they are sooooo cute!” enthusiastically commented an unknown, young, attractive, athletically built woman. I looked around, certain that she was addressing someone behind me or outside my range of vision. Mouth hanging open, I stood stunned, realizing she […]
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