It’s been a week of firsts for me. It was an overwhelming week in many ways, although I did learn a few things along the way about myself and the importance of speaking up. It all started after a visit to my orthotist. My ankle-foot orthotics (AFOs) are causing pain…
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I cleaned the bathroom yesterday and it now shines and looks and smells great. The downside? I needed a nap after cleaning the tiny room. I am slowly finding that household chores are becoming more and more tiring. I have Charcot-Marie-Tooth, and the disease is slowly progressing. Although I…
One person has stood by my side through it all. This person supports me in everything I do, even if she doesn’t agree with my decisions. She is there for me at any time of the day or night, even when I call her in tears at 3 a.m. She…
I did not realize physical therapy could be such an adventure. WOW. Not only was it informative but it was also a workout! Boy, my muscles ached after the first session. I had an evaluation done a few weeks ago, but the other day was the first session. The…
“Can you repeat that?” “I am sorry, but I cannot hear you, please speak louder.” I am saying these things more often than I used to. It is worse when there is background noise, like an air conditioner or a running projector. This is particularly problematic in the classroom. I…
“To tell or not to tell people about my disability?” That is always the question. When I meet someone, how do I know how they will react to my disease? How can I be sure they will not laugh or turn away? It is not easy to tell people you’ve…
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What I Am and What I Am Not
Today, I sat in a cultural proficiency teacher training designed to raise awareness of cultural differences and stereotypes. The class did an exercise in which we filled in the sentence: “I am_____ and I am not ____.” This got me thinking about how people see others who…
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Shoes Are Not Always My Friend
Shoes. Most women have a closet full of them. Most women love to go shoe shopping and get the latest, cutest trend. Not me. I truly hate shoe shopping and always have. It always has been a struggle to find comfortable, cute, wide shoes with enough support for my unstable…
I have been told by many that stress can exacerbate the symptoms of Charcot-Marie-Tooth, and when I am stressed, anxious, or feeling overwhelmed, my symptoms are worse. So, I’m working hard to add balance to my life. Each…
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‘To Travel Is to Live’
I love to travel. Traveling is tough enough to begin with, and adding in physical conditions like Charcot-Marie-Tooth doesn’t exactly make things easier. But this past summer, I took the risk and embarked on a tour of the United Kingdom with my son, through a CIE coach tour. I have…
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