The Elusive Diagnosis: When Doctors Just Shrug

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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12 Compelling Reasons I’m Talking About CMT This September

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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The Ask: Fundraising Tips!

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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CMT, Carrots and Cones- Rare Diseases to Care About

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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9 Surefire Ways to Feel More Positive

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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Home For the Holidays – The Story of a True Life Adoption

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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Technology Rant: #1

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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Chronic Pain Can Make You Crazy

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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Yep. Feels Just Like Home

              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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My Name is Not Grace

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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Crotches and Belt Buckles: Cocktail Party Blues

The pizza had just arrived.  Before I could take my first bite, the subject of my husband’s company cocktail party surfaces. “Thanks, but no thanks. I don’t want to go,” I say with steadfast determination.  “I’ve already made sure that chairs will be available,” he counters, attempting to make the event seem easy, cozy, attractive even. […]

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Wheelchair Horror Stories – #1

Ever had to use a wheelchair to get from here to there? Now, I’m not talking about temporarily using a hospital wheelchair to nurse a broken toe or to be wheeled out of the maternity ward after having a baby. I’m talking about relying on a wheelchair to get around for an indefinite amount of time […]

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