One of the worst parts of pain/POTS/EDS/ or really anything that causes discomfort for a long period of time is something that most people don't think of. It is how we treat our loved ones. We begin to become short and snippy with them because we are hurting, and since they love us they let it go. I didn't even notice that I had become really mean to my family while I was hurting until my brother mentioned it to me. Speaking from my own personal experience, I try my hardest to show my family my appreciation for them when I am doing well, but I forgot to try when I am not. Thank goodness Ben told me that I was being harsh to with everyone! Now I am going to work harder on being nice, even through my worst times. Because they deserve that after everything they have been through.
Someone very important to me taught me that there is a secret to happiness. Even in the saddest of times there is a way to not be sad all the time, it might not be easy but it is better the wallowing all day. If you set aside five to ten minutes a day to feel sad and when the time is up it is time to move on to doing your daily activities. At first this was hard for me, but after I learned that during my time It was helpful if I did some self expression in artwork or photography. Taking pictures is my favorite way. I love to be able to capture a moment and be able to tangible have it with me forever.
( I was feeling artsy today when I was taking my pictures)
I am grateful
- for the clean air I can breath unassisted
- that I can wiggle my toes
- for being able to smell the flowers
- for being able to feel the softness and warmth of a cat
- for the ability to talk and express myself unassisted
These things are simple but easily forgotten. Thinking about all the wonderful things in life makes me smile. It also helps me to remember that no matter what happens not everything is going wrong, there is always something, no matter how small, going right.
Today was my first day back driving in months! My dad agreed to let me drive to my infusion and he would drive back. The farther we got away from the house the harder the rain poured. By the time we were almost on the highway the lightning was so close, it seemed like it was right next to the highway! The water was so deep that the car was hydroplaning on a lot of spots on the road. By the time we finally got there, we my blood pressure was 165/83.
Infusions, for me, last about two hours. That is one hour per bag. During infusion today I kept myself entertained by playing minesweeper and listening to music. While I was listening to music I got to talk to my half brother Mason which so great! I got to talk to him about himself and about our dad, by the way I am adopted. I found out that he is turning 16 this year! Sadly, he does have some health problems too. But I am praying that he will grow out of them. After I got home from my infusion, he and I were still texting because we have a lot of time to catch up on!
(picture at infusion)
On Sunday my brother turns 15 years old! For his birthday he went to the movies with four friends yesterday and tomorrow night we are going to a nice restaurant and to a comedy, Esther's Follies. He went with a group of guys in february and ever since he has returned home he has been begging us to take us there! I hope it will be just as good as he remembers!
Forever Flexible,
Hallie Rose
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