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…
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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…
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Is My CMT ‘Invisible’?
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…
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The Things We Do for Family
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…
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The Lessons I Learned in 2018
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…
A crazy idea came to me early one morning when I couldn’t sleep: Find or start a support group for women with disabilities. While there are many online communities, there are few in-person support groups for women with disabilities. I have Charcot-Marie-Tooth disease (CMT) type 1A, and…
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How I Handle the Holiday Stress
Holidays and stress seem to go hand in hand! The shopping, cooking, and travel can lead to pressure at this time of year. I love the holidays and spending time with family and friends. However, I do not enjoy all of the chaos and running around. I love…
I was telling a new doctor that I have Charcot-Marie-Tooth (CMT) disease, and he gave me a funny look. He asked me to repeat the name. I did and gave him a very brief explanation. Then he gave a little laugh and said he was confused because…
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