I loved Malaga because it was a beach place. It reminded me of L.A. The weather in Malaga is like L.A weather. Malaga is also walkable just like L.A. It was fun to explore Malaga. We enjoyed our time there so much it was hard to go back home at first. Malaga resonated with us so much that it was hard to leave. We were torn from Malaga Spain.
This summer my Mom and I went to Portugal. I liked Portugal. One thing that I liked at Portugal was the Portuguese villages. It was cool to go to the Portuguese villages. They are bright and sunshiny. Lisbon was a cool city. One downside about Lisbon is having to walk like a mountain goat. I liked being on coast by or near the Atlantic ocean instead of the river. My mom and I liked Portugal. I liked Spain better but Portugal I liked though.
This summer my mom and I went to Spain. I love Spain because people are friendly. You can enjoy evenings and relax without getting interrupted when out to dinner. We ate dinner late every night. There is not any pressure when cooking dinner. The price is not so pricey for getting groceries. It gets dark late at night. I like that we don’t need to rush on things in Spain. i love good beautiful weather in a lot of the places we went to in Spain. I think Spain is a beautiful country that Mom and I both loved when we went to Spain.
I get blood draws due to my TSC disease. The doctor checks my medicine levels and other things, like electrolytes, to make sure I am staying healthy. It does not take long but they can be scary. Blood draws have never been my favorite and they are still not my favorite these days either but I know it has to get done for the doctor, so she can look at the results then tell me either everything looks good or something is off. If something is off, the doctor comes up with a solution and we go with the solution and she tells us if the solution is working or not. Sometimes that means a lot of blood draws in order to check.
- I usually have the person doing the blood draw count to three before they poke the needle. So I know when it is coming. That helps me be prepared.
- If you don’t like the 1-2-3 countdown (it makes people nervous sometimes), try looking to look away from the needle. Sometimes it is watching the needle go in that makes people feel scared.
- It is good to have someone with you. You can look at them instead of the needle. I look at Jennifer my mom if I need to.
My MRI experiences are good although they weren’t always good. It lasts 60 minutes every time I do an MRI. I have them every year because they check my brain and my spine. I have to stay still for 60 minutes at each MRI. That is the hard part. When I was younger I had to be sedated because I couldn’t hold still.
My mom and I practiced meditation so that I could learn to keep still and wouldn’t have to be sedated. I hate being sedated. We had a friend who would do guided meditations with us and that was how I learned to keep calm and quiet even if I wasn’t sleeping. If you have trouble holding still, you might try practicing meditation or guided meditation.
Tips for going through MRIs:
- Stick ear plugs in your ears because it is very loud.
- Make sure you have a blanket on you also because you can get cold while staying still.
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.