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.
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.
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.
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.
I have white parts on my skin due to tuberous sclerosis (TSC), called hypopigmentation. It is a malformation that my body created due to TSC. It doesn’t bother me. It is just curious to me, though. I was born with them.
The syrinx is a hole in my spine. I had two surgeries done to fix it. In the first one, they used a piece of plastic to keep my brain from blocking my spinal cord. But the plastic created scar tissue. So for the second surgery, they grabbed some skin from my leg to replace it.
A big issue that I have due to the syrinx is not being able to feel sensation, like is the water too cold or too hot or just right. The feeling for water temperature has diminished
Another big issue is describing the pain is when I feel pain. It is difficult to describe what is happening in my body because I can’t always tell. It is not easy dealing with these two issues.
I use a bath thermometer because I can’t feel water temperature due to one of my many challenges. Because of my brain disease, I have a syrinx, which is a hole in my spinal cord. Because of that, I can’t sense temperature changes very well.
So I got a bath thermometer because I don’t want to freeze or scald while in the shower. I am much happier with the thermometer because I am not nervous or anxious about the water temperature like I used to be, before having the thermometer in my life. I am not so concerned about my body in the water as much as I used to.
The thermometer tells what temperature it is in Fahrenheit. If it gets too hot then a little red light flashes and I make the water cooler. If the water is too cold, a blue light flashes and I make the water warmer.
The bath thermometer is a useful tool to use. You can get one on Amazon.
When I walk I have to be really careful because If I am not careful I could fall down. I have a visual impairment, which I talked about here.
I love to do my walks but not if it rains. If it rains outside then I usually skip it until the next day.
I like to be in the beautiful weather like sunny and blue skies (this is why I like living in Los Angeles). I love 70 F’s and 80 F’s best for walking outside.
Walking keeps my mental health in check and helps me not feel off balance. I feel happier after my walk. When I miss my daily walk because it is raining or too cold or I have doctor appointments, I can always tell. I get grumpy.
I love being outside when it is sunny and blue skies.
I wear slip-on shoes. I prefer slip-ons because I struggle tying my shoes. So if you struggle with tying shoes then my advice to you is to stop struggling and just get slip-on shoes because they are easy to get on and off.
My favorite pair shoes is the Bob’s dog shoes that I have. I love them because they are slip-on, plus they have dogs and colors on them. I adore them and I wear them when I take my walks. The dog shoes give me joy.
I find choosing shoes can be hard because I got to remember when choosing shoes is think about size, comfort (see if they fit), then style.