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.
November 6, 2022
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.
October 30, 2022
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 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.
June 28, 2022