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.