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We pulled up chairs so that we could sit closer to each other. She pointed at her shoe, to a place about an inch from the tip. “See, my toes only come up to about here,” she said. “But you know we buy shoes more for the width than the…

Someone asked me what I miss the most since being diagnosed with Charcot-Marie-Tooth disease (CMT). I had to think hard about it, as I’ve had CMT for as long as I can remember. Has it always been this bad? No, it has definitely progressed more than I…

In grade school, I used to launch my ankle-foot orthoses (AFOs) from my foot and into the air by twisting my toes as I kicked as high and as hard as I could. I would watch my AFOs spin in the sky before they fell to the ground. The…

I recently realized that I have had no lower back pain for a few weeks. Wow! I am almost afraid to say anything, in fear I might jinx it. I typically suffer from pain in my sacroiliac (SI) joint, lower back, and hip. Some days I can…

Recently, my father sent me a copy of doctor’s notes he received in 1989. Those familiar with Charcot-Marie-Tooth disease (CMT) would recognize many of the phrases scattered throughout: “chronic weakness in lower extremities” and “increasing grip weakness,” to name a couple. It was when he first learned he had CMT,…

The other day, I went to a class to learn about using essential oils. I know that these plant substances have health benefits and I was curious to see if they could help with some of my symptoms of Charcot-Marie-Tooth (CMT). I wanted to explore a…

I saw something about invisible disabilities the other day. To me, that means a chronic illness that has flare-ups or any type of disorder that you cannot really see. I have heard people say that Charcot-Marie-Tooth is an invisible disability. I have Charcot-Marie-Tooth type 1A, and…

Over a year ago, my dear friend told me that she planned to get married on the beach. I must admit, I was a little concerned about going to her wedding. Then, she told me it would include a three-night cruise. Yikes, how will I manage…

Snow. It sure looks pretty unless you have a disability. I love to watch the snow fall; add a hot drink and a good book, and I am happy until I need to venture outside. Winter is not my favorite season. I dread most things about winter in…

The past year was packed with ups and downs that taught me numerous lessons about how to navigate my journey with Charcot-Marie-Tooth (CMT). I learned much about myself, this crazy disease, and how it affects my life. In the past year, I visited the podiatrist, orthopedist, and orthotist…