I have a shagreen patch due to TSC. This is a strangely shapped and bumpy lump of tissue on my lower back. It is a classic sign of TSC. I have lived with the shagreen patch my whole life. It doesn’t bother me. it is another thing that is just curious to me.
One of the doctors knew that I had TSC because of the shagreen patch on my back because they checked me over to see what was going on. The doctors discovered that I have TSC. I don’t understand why it is called the shagreen patch. I also don’t understand why the shagreen patch feels bumpy when I touch it or feels bumpy on my back.
July 26, 2022
I was young when I had walking delays. I was three years old or so when I started walking. Now I can walk to places.
When I was able to start walking my mom and dad were very happy because they weren’t sure if I would. So my mom and dad helped me until I was able to walk.
Now I walk everywhere in L.A. I love to walk in places that are walkable. It makes me happy. Walking improves my mental health. I love walking and enjoy walking.
July 19, 2022
I was young when I had speaking delays due to my dreadful disease. The doctors said I may not be able to speak because of TSC. I guess a lot of children with it don’t. But I proved the doctors wrong because now I can talk to people. I was three years old or so when I started speaking.
When I was able to start speaking my mom and dad were very happy because they weren’t sure if I would because of what the doctors said to my parents. So my mom and dad helped me until I was able to speak.
Now I try my best to communicate to people and tell them what I want or what I need but sometimes communication isn’t easy though because sometimes miscommunication can happen to us.
I love to have conversations with people.
July 12, 2022
Because of the brain surgery I had when I was a baby, my brain has trouble remembering that I have a right hand. This was worse when I was younger. But I think it is improving. I remember to use it more. So I try to use my right hand. But particularly on my bad days where it is not easy to remember things I sometimes don’t use it.
I am left handed but I use my right hand when heavy lifting things or carry things. When I carry groceries from the store to the apartment. I use it also when on the computer. I try to do it when I am blogging and when I do Duolingo and when I type on the computer. I try to remember this with anything I do.
I use it also when I do chores and errands; it is not easy to remember these things sometimes. It is another challenge I have also. My left hand is stronger and my right hand is weaker than the left is. But my brain is getting better at remember I have a right hand.