Traveling with Chronic Illness / RA, part 1
Traveling for fun, goodbyes, and answers about RA
Last summer, I set out in my truck to do something that felt impossible to me. My girls and I filled my Suburban to capacity, picked up our best girlfriends, and took off for Mississippi. My daughter was returning to college and I was determined to find a doctor who knew how to perform ultrasounds for Rheumatoid Arthritis.
I took the blog with me and some of you may remember the photos of Destin I posted on our Warrior Facebook page. The trip was fun because we spent time with special people, but there were some unpleasant tales behind the scenes. There was the awful hotel room with the hazardous air conditioner. There was my heartbreak from saying goodbye to my firstborn. And there was a doctor who seemed to know as much about Rheumatoid Arthritis as my five year old Roo.
Rheumatoid Arthritis (RA) changed the way I travel
When it comes to travel, I’ve been doing it all my life. I started out in a plastic baby seat on the floor of a Thunderbird. Through my childhood, there were 13 hour drives to my grandparents. My dad would always say he needed a sandwich to make his foot press on the accelerator. Later, I took many field trips to historical destinations with my homeschooled children. I would fill the cooler with picnic food and fill my bag with little presents to hand out along the way.
Those trips are some of the best memories I have. But I travel differently now. Rheumatoid Arthritis makes it impossible for me to shop all year long like I used to for little trip surprises for my kids. There’s no way I can spend days on my feet preparing food and packing suitcases. Instead we do what we can together, lower our expectations, and eat a lot more hamburgers.
The thing that makes travel most difficult for me is the same thing RA’ers talk about all the time – the invisible nature of the disease. It can be difficult to get either relatives or hotels to make necessary adjustments because you “don’t look sick.” Actually, I spend most of my time in my house so that I can be as comfortable as possible and I don’t have to explain myself. Sometimes, I wonder whether that’s why we don’t “see” a lot of severe RA – because people who are limited by RA don’t spend a lot of time traveling around in public places.
What I learned about RA while traveling
I’m not sure I’ll make that trip to Mississippi this time since my RA is still worse, I’m starting a new treatment, and there are other complications. I do not need to see that doctor again who claimed that Rheumatoid Arthritis cannot affect DIP (distal interphalangeal) joints; that ESR & CRP reliably measure disease activity; that RA must always affect hands first; and that he knows how to properly administer ultrasound for RA – and a few other things I don’t want to talk about yet.
If I can make the trip, the blog will go with me. And so will my laptop. It sure came in handy last year in a dark hotel room at midnight. When everyone else finally went to sleep, I Googled “Rheumatoid Arthritis DIP joint.” I sat on the bed reading case studies and journal articles that proved Doctor Dip wrong, scratching my head wondering why this highly qualified man would say something so easily proven untrue. A quick search on Google was all it took for a blogger with no MD to find the facts. Well, that and a long ride to Mississippi.
More on Traveling with Rheumatoid Arthritis!
Please stay tuned tomorrow for a discussion of specific tips for traveling with Rheumatoid Arthritis or other chronic illness. I have a few ideas to share and I really hope I can get some more from you! Here’s the link: Traveling with Chronic Illness/RA Part 2: 20 Helpful Tips
This post is my July entry in the Health Activist Blog Carnival. If you’re interested in participating too, you can read all about here.
Now that you’ve met Dr. Dip, maybe you’ll want to meet…
- Dr Laptop: It’s Ok to Laugh if You Have Rheumatoid Arthritis
- Dr Heater: Rheumatoid Arthritis Doctors’ Interviews
- Dr Dolittle: Dr. Dolittle and the Rheumatoid Arthritis Specialist
- Ultrasound for Rheumatoid Arthritis, Part 1, first in a series of 3 posts
- Blood Tests for Rheumatoid Arthritis, part 2
- What Is the List of Rheumatoid Arthritis Joints?
NOTE: Your comments are an important resource for future readers of this post in the months to come. Please find the comment link below each post.Kelly Young. All rights reserved.