Last week, I was interviewed by Pat Rullo for the Those Radio Kids show. Pat and I met at the Cleveland Clinic Patient Experience Summit, and she previously interviewed me for her Speak Up and Stay Alive radio show. She does great work, so I was excited to speak with her again. She is doing a great show to help kids and teens who have chronic health issues. We spoke a little about my journey, things I have found effective, and advice that I would have for other kids and teens with chronic disease. She is also interested in talking to other young people with chronic disease so let me know if you are interested! Otherwise, don’t be shy. Let me know what you think of the interview and share any tips you might have for others as well.
Here is a picture of Pat and I two years ago at the Cleveland Clinic.
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.
I was honored to speak at the Dignity Health workshop in Longbeach, California in June. I continue to be so very impressed by Dignity Health and their dedication to improving the patient experience. They put every single employee through some training, and they use my video as one of their tools. They also have a leadership summit about patient experience every year, and now they are doing regional workshops like the one I went to in June.
Their whole organization is centered around their vision for patient experience, and I admire that. I am planning to write a blog this week with my thoughts specifically on that. In the meantime, thank you to Dignity Health for having me, and keep up the good work!
Here are some other fun pictures from our trip We had to go to Hollywood and Beverly Hills too!
Me looking at the Hollywood sign (it seems so little in real life!0
My Hollywood dress purchase from the store where Anna works – Polka Dots and Moonbeams
Better shot of the Hollywood sign
The best steak dinner at Musso and Frank’s
My Cure JM BFF Anna
The Beverly Hills sign (had to do it)
Living the Beverly Hill Life
The hotel made me this for graduating!
Best invention EVER! A machine that dispenses yummy cupcakes 24 hours a day. Thanks Andrew for taking us there!
You might recognize this from Pretty Woman. It is the elevator in the hotel where Julia Roberts said, “Well color me happy, there’s a sofa in here for two!”
I was honored to be invited as a guest blogger on DrGreene.com. I met Dr. Greene and his wife Cheryl in February this year, and they really are big believers in patients! I love that Dr. Greene spoke so much about shared decision making and really trying to understand the pain that patients report. I will be writing two more blogs for them in the next few weeks.
This blog entry was meant to provide some perspective on what it is like to be a teenager with a chronic disease. I try to be as “normal” as possible, but it is really challenging to try to deal with all of the medical issues while still in high school. I hope that this blog can provide some perspective to those who see patients and can help other patients know that they aren’t the only ones who are struggling.
The blog post can be found here.
Being a Teenager with a Chronic Disease – DrGreene.com
I look forward to hearing other perspectives.
I have had a really rough few months. My year started off pretty well, and I was excited about my last semester of high school. Then, my mom broke her leg, and I was helping her get around. Then, I fell and split my elbow open and needed stitches. I have also been having a lot of back problems for a long time that the doctors haven’t been able to figure out, and I have been having testing often. Then, my grandmother died in March, and she was my favorite person in the whole world. And now, I had an ovarian cyst rupture. I seriously hope that I can have some good luck soon as it sounds like a lot more fun.
I have so many things to write about when I have time, but I am still recovering and I have a LOT of school to make up before graduation.
Just some quick thoughts and I will write posts on these later.
1. We don’t make it very easy on patients to get tests and results. Schedules are very rigid and if you need to reschedule, say for a funeral, then it can be weeks before you get the new appointment.
2. Directions need to be clear. Even something as simple as stitches had us a little confused on what to do.
3. Doctors should not get a pass for being rude just because they are a doctor. I am tired of hearing excuses that they are great diagnosticians but they just aren’t good at communicating.
4. Hospitalists are like substitute teachers. They are just subbing in for the actual doctor and often don’t have enough information or ability to make a change.
5. Some of healthcare is just actually understanding that the patient is having a really hard time and acknowledging that there isn’t much that can be done to make it easier. This is a hard process.
6. Nurses can make a huge difference in peoples lives as I found out when my grandmother was dying.
I will try to write some here and there, but I wanted to say hi and explain where i have been lately. I have some speaking engagements coming up, and I am always looking for new ones, especially after May when I graduate! Please let me know how you are doing and thoughts you have on the above. I love hearing from you.
Tonight, I had dinner with a friend that I hadn’t really talked to in a long time. We had a great time catching up at dinner. She is in the CNA program at our school, but when asked whether she wanted to be a nurse, she said absolutely not because the blood makes her pass out. She started telling stories about getting blood drawn, and her stories were pretty funny. However, what wasn’t funny is that almost every story she referenced how the nurse or person drawing her blood didn’t understand that she can’t help passing out or vomiting. It is something that just happens to her. She has tried to work through it, but regardless, she either gets sick or passes out each time.
I also found it interesting that she is thinking about a career as a child life specialist so that she can help kids not be scared. When I was first diagnosed, I was terrified at having blood drawn. It literally made me anxious and sick. Now, I am pretty sure I could start my own IV and take my own blood. 🙂 However, I think it is important to remember that these things are not routine to everyone. Their fear and symptoms can be very real to them. At the very least, we should acknowledge them when they tell us and see what we can do to ease the fears.