Traveling with Chronic Illness / RA, part 1 | Rheumatoid Arthritis Warrior

Traveling with Chronic Illness / RA, part 1

traveling with chronic illness bad hotel room

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

traveling with chronic illness bad hotel room 2I’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.

traveling with chronic illness bad hotel room 3

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…

Recommended reading:

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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11 thoughts on “Traveling with Chronic Illness / RA, part 1

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  • July 26, 2010 at 3:09 pm
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    I live in a college town in MS. We always offer students of anyone we even remotely know of our assistance with any emergency that might arise while they are away from home, even if that emergency is just a much needed home cooked meal or a quiet place to study or someone to pick up a prescription for them, or a ride home from the auto shop. I have RA, but doing pretty well, and have my high school senior son to assist with errands, etc. If needed. My son will be going away for college, so I understand having a lived one away from home.

    Reply
    • July 26, 2010 at 4:31 pm
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      Good luck PJ. My oldest is in her 3rd year of college now. It’s hard to be away from her. Do you have another child there to help you when he goes?

      Reply
  • July 27, 2010 at 1:18 am
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    I’m looking forward to the travel tips. Since my onset, I find it much harder and painful to travel.

    Reply
    • July 27, 2010 at 9:29 am
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      I do too, Amy. I don’t know if it will be easier w/ the tips but at least I think we could be more comfortable.

      Reply
  • July 27, 2010 at 9:20 pm
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    Dr. Dip Stick…………I am so tired of being told what is my RA and what my RA isn’t, I think I know RA pain by now, and I’m sure you do as well.

    “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.”
    You hit the nail on the head with this statement.

    Reply
    • July 27, 2010 at 9:23 pm
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      Yeah, another RA pt would know exactly what that means. Can walk as funny as I want to or whatever I need to do or not do…

      Reply
  • July 28, 2010 at 5:24 pm
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    I have a great friend who is a flight attendent, she has given me some great tips.
    1. Never use the airline pillows or blankets…unspeakable germs!
    2. Never ask for water from the flight attendent unless you know it is from a can or bottle. No water from their tank! It never gets cleaned!
    3. When making a reservation, ask to pre-board. It’s free and it helps you avoid a longer wait.

    Reply
  • August 16, 2010 at 10:03 am
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    We were fortunate enough to find a good used RV really cheap and that is what we use when we are traveling to a location where otherwise we would have to stay in a hotel. I put extra foam padding on my bed, have my own pillows, and it is so much more comfortable than any hotel room that I have been in since RA. It is nice to have a tiny kitchen, too, where we can prepare a simple meal instead of eating out at every meal. Eating healthy when traveling helps, too, and that is hard to do eating all meals out. I couldn’t do this by myself, but do recommend it to those who can afford it and who have a spouse or traveling companion who can do the hook-up, etc. My RA actually isn’t invisible, and I am slower than Christmas, but I decided that if that bothers other people, they can travel with someone else. So far, that has never happened, and even though we don’t do even half as much as we used to and some days nothing but relax, we always have a good time. Just knowing that we can get away now, even when it is only and hour away to spend a couple of days at the lake, has been a huge morale booster for me.

    Reply
    • August 16, 2010 at 7:09 pm
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      Hi Charlene,
      That’s so good to hear. Makes me want to do it too. “Slower than Christmas” – that’s takes me back! It sounds like it helps a lot to have folks that have their expectations at a good level.

      Reply
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