I think I feel my best when I get to spend time with my family. I got to spend a nice break with my grandfather, parents, siblings, uncles, aunt, and my dog. We relaxed, laughed, and had a boat parade for the 4th of July. My family is always watching to see if I am feeling ok, and they are always thinking ahead to keep me out of the sun or to make sure we aren’t doing something that would make me feel worse. It is nice to have such a supportive family. When do you feel your best?
I also got to go with my mom to the White House where she won an award for being a Champion of Change for Precision Medicine. It was so great to see her get such an honor, and I am so proud of her! Here is her blog post, and here is a link to the video (she starts at 2:22 in).
One of the biggest struggles i have had with Juvenile Myositis is around chronic pain. I have pain daily, and sometimes it really affects my quality of life. I have developed a pretty high tolerance, and I have many tips and tricks that I try to help me get through the day.
One of my biggest frustrations is that I get asked to “describe” my pain in a scale of 1 to 10, and then the “is it stabbing, throbbing, aching, dull, sharp?” question comes. I think doctors and nurses should ask more questions about how the pain is affecting your life instead of these very narrow questions. If you ask how it affects my life, then you will get a much better understanding of the impact.
For example, here are some questions that I shared on a post for drgreene.com that can be found here. It has a lot more details in it. 🙂
Could you ride your horse with this much pain?
Could you walk up a flight of stairs?
Could you walk down the hall?
Could you sit at a desk and type on a computer for 30 minutes?
Could you sit at a table and eat a meal with other people?
Is there any position where you can get comfortable for 5 minutes?
Could you sit comfortably long enough to watch a 30 minute TV program?
Do you put off eating a meal or taking medication because the thought of going to get it is too painful?
Does the pain cause you to miss activities or turn down invitations for social events?
Could you play a game for 20 minutes?
If you were exhausted, could you sleep?
Please leave me comments. I love hearing your thoughts as well.