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I have AFO woes … again. I am becoming very frustrated with my ankle-foot orthoses. They may be better for my ankles, but what good are they if they are uncomfortable? Yes, I shared that with my orthotist many times. But each time she adjusted one area,…

I used too many spoons today. I will pay for it tomorrow. According to the “spoon theory,” I have a limited number of spoons to use each day. Spoons represent energy expended when doing everyday chores and activities. Different tasks require different amounts of spoons: Loading the…

This week, I really did not like this disease. I have Charcot-Marie-Tooth disease type 1A, and for some reason this week was a rough one. I fell twice. Thankfully, I did not get hurt, although one day I woke up with random bruises and a strange cut…

Two months ago, I had an interesting conversation with my eye doctor while she looked at photos of my eyes. “Do you have joint pain?” Yes, I have chronic hip and ankle pain due to Charcot-Marie-Tooth, I told her. “Do you have trouble sleeping?” Yes, all the…

Mom guilt will always get you. Why do I feel guilty when I cannot do something or be somewhere for my son? It’s probably because society has this ideal for moms. We are expected to be everywhere and do everything. Social media sites like Pinterest can add…

I constantly say sorry by instinct and without reason. I’ve even been apologizing for my disability. No more apologies! I have Charcot-Marie-Tooth disease Type 1A and I wear ankle-foot orthoses (AFOs) to help with stability and walking. At times I use a cane if I’m walking or standing…

The other day, I watched a video about the late Claire Wineland. In it, she said many people believe that if someone is sick or disabled, they must be unhappy. When someone who is sick or disabled receives that type of message over and over, they may…

“Fair does not mean equal.” I always start the school year by teaching my class that concept. I start by giving each student a paper with the name of an injury or illness written on it. Then, they visit the “nurse,” and I give each of them a…

I was released from physical therapy, finally! Don’t get me wrong, I liked my physical therapist, even though he made me work hard during our 45 minutes together each week. So, what did I gain from physical therapy? I feel like I gained…

How do you know you are important to people? What is a sign that you are not only loved but really important to them? The other day, my dearest friend told me she was getting a tattoo. I thought, “OK, that is great, I’m…