Fitness · Guest Posts · Travel Fitness

Traveling With Rheumatoid Arthritis And Sjogren’s Syndrome

Hi Friends!  Today I’m privileged to share a guest post from Elisa Comer about how to travel successfully with chronic conditions.  She is the founder of Chronic Praise which offers support for those struggling with all types of chronic illness.  I’ve learned so much through reading about her struggles and successes as someone who has been dealing with chronic auto-immune disorders for many years, yet still continues to thrive and go on countless adventures!  I love her positive outlook and the way she is an advocate for others in her position.  I hope her heart for helping others through prayer and education blesses you as much as it has blessed me!  Be sure to check out her full Bio at the end of the post and follow her on Facebook to get connected!

Planking with the wolves!
Day trips to the park. Overnight RV excursions. Afternoon hikes to beautiful waterfalls. And so many other adventures! These trips are fun for most anyone – who doesn’t love getting outdoors? It’s as easy as finding an open day, hopping in the car with some hiking sticks and a snack, and heading to one of our favorite spots – or even trying some place new, right?
Well… not exactly. Not if you live with the pain of Rheumatoid Arthritis. RA will make its way into every nook and cranny of your life, even the things you enjoy. Perhaps especially the things you enjoy, like simply getting outdoors and enjoying a good walk. But while RA definitely requires that we plan a bit differently, a chronic path doesn’t have to shut down all opportunities to get outdoors and enjoy nature. It just means that for us, traveling has to look a bit different – sometimes significantly different –  and we’ll have to work a little harder for it. Which means maybe it’s a little sweeter when it happens, and that feels so, so good.
landscape photography of white mountain
My name is Elisa Comer, and I’ve lived with Rheumatoid Arthritis, Sjogren’s and a few other auto-immune illnesses for over 10 years now. Long ago, one of my physicians told me to find somewhere that makes me happy and then go there. Often. For me, it’s the outdoors. Traveling. Getting out.of.this.house. My husband and I just celebrated 25 years, and we’ve been campers from day one. We LOVE to travel. Our RV is an older Windsport, affectionately known as “Windy,” and she’s been in the family for years. We even lived in our camper for almost a year when we relocated from the big city to the Appalachian Mountains. We had to learn our way around and though we bought a house near our church and a good school district, we wondered why in the world we even bought that house. We were so happy in our RV, it was the best 9 months we ever spent as a family. I joke with my friends and tell them my real house has wheels, seriously! Nothing is as relaxing nor elevates my mood more than being outdoors, hiking, and traveling in Windy. Especially traveling in Windy.
Through the years, RA and Sjogren’s have definitely changed our excursions, but we still have fun and travel every chance we get. Planning ahead is the key and over time, the changes we had to implement have just become the norm. Here are a few ways our traveling has had to change, and how we accommodated the changes so that we can still enjoy fun excursions and making memories. Hopefully these will help you, too!

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Wear A Medic Alert

This is a non-negotiable.  I don’t even have words to describe how important this is. While I can perhaps compromise on many things of my RA journey, this can’t be one of them. A prominent medic alert is a quick communication to others, like EMS teams, and they will appreciate this approach, I promise. Keeping an info card in my wallet or purse is an okay idea, but no one will know it’s there, and precious time will be spent trying to dig it out. If I’m in a park or on a day trip and unexpectedly need help, the EMS folks need quick information about my health situation, and I want them to have it quickly, right? Wear a medic alert. Let’s be honest, some of them are ugly. But many are not so bad. One suggestion: Be sure it looks like a medic alert and not a fancy piece of jewelry, or no one will recognize it and it won’t help.

health medical medicine diet

“First Aid” Pouch

Most first aid supplies are things like bandages, tape, allergy items, and the like. We carry these things, but there are some RA-specific items I keep on my person, mostly special meds for real problems. I even made emergency bags, one to keep in the car, and one to keep around my waist for emergencies. An EpiPen and rescue inhaler, benadryl, special BP meds, eye drops, and gum or mints with xylitol all live in my pouch. Using a pouch around my waist keeps my hands free to use my hiking sticks too, so this setup is quite handy. Also, there are a few places that won’t allow pouches or meds with syringes, like some concert or sports venues and sometimes movie theaters, so be sure to check policies if your travel day includes these kinds of places. Just add it to the list of things you have to do when traveling. Doesn’t take long, but it sure is a valuable piece of information when planning excursions.

Never, Ever Alone

Nowadays this probably goes without saying for safety purposes, but it’s worth mentioning because when symptoms bottom out unexpectedly, being alone and perhaps in an area where my cell phone has no reception is a terrible, terrible thing. Always, always, travel with someone, and make sure they know of your conditions. Doesn’t have to be the topic of the day, but be good to your friend, and don’t surprise them with RA, or diabetes, or some other major health information. We don’t have to scare them to death, but at least let them know you’re wearing a medic alert, have meds if you need them, your basic diagnoses, any allergies, etc. For example, all my friends know I have a pacemaker. They know that sometimes it races during exercise and I may need to take a short breath-break along the way. You know what… I’ve never, ever gone with friends or family who had a problem with me telling them this. They’d rather know, and they are happy to help, should the need arise. Many times we don’t want folks to know there’s something “wrong” with us, but this isn’t a healthy approach, for us or our friends.

Bays Mountain Park

Scheduling Can Be Challenging!

Being totally spontaneous is especially challenging with RA, mostly due to medication schedules, injections, infusions, etc. The RA meds have lots of side effects and have to be taken on a set schedule. Sometimes I end up a bit nauseous or with a slight fever for a day or two, but sometimes not, and of course, I never know what it’s going to be each week, right? Besides medication regimens, there are numerous doctor appointments, followups, etc, that take up a lot of time. A LOT of time. Being sick really is a part-time job by itself, oh my word! To accommodate this stuff, I have to be intentional with calendar planning. My husband and I are still spontaneous with walking, hiking, and getting outdoors, but we try to think an extra day or two ahead. We haven’t always done this, but we learned that intentionality here really helps us on the traveling thing. With some heads’ up, I can adjust my medication schedule a bit, or re-arrange MD appointments, etc. While RA doesn’t totally kill spontaneity and travel, it sure requires that I work hard for it. Which I’m willing to do, and the payoff is so worth it!

Will We Be Gone Long???

Duration is another detail I have to keep in mind. There is “prep” work to be done medication-wise and energy-wise, so it’s important to know whether the travel will be an overnight trip or a day trip. Will it last the whole weekend? Are we going for a full week? Sjogren’s has a dysautonomia component, which keeps my blood pressure really, really low, and the more I do, the more it falls because my neuro pathways cannot accommodate the fight or flight response. But thankfully, I can hit things preventively with diet, a few med changes, an extra rest day, etc. If we’re going to be gone a few days, or maybe hiking back-to-back days, I must be sure to on-board some extra BP meds and prop up that silly BP.
I made the mistake one time of pridefully skipping this prep step on the BP meds. I mean, who wants to take meds if they don’t have to, right? And sure enough, on the side of a mountain hiking to the top, the BP completely bottomed out. My poor husband looked at me and asked if I’d taken medicine or had it with me on the trail.  Ummmm…. no, no I didn’t and no, I don’t. The look on his face revealed the brute force of the fear that either something would happen to his wife, or he’d have to carry me all the way down off that mountain. It was awful, and for his sake, I’ve never let that happen again. I now just add this thought process to my “packing” and preparation. It’s as normal for us as making sure we have clean socks. For travel, prep is key, and the duration of our trip is definitely something I have to consider.

Are We Walking, Riding, Flying, Sailing…???

The type of travel is a detail that must be considered. When I plan our park and nature trips, whether for the day or overnight, I make sure there are alternatives to walking. For example, one of my favorite parks, the Great Smoky Mountains National Park, has “hikes” that are done in your car. So if we head to the Smokies to hike on foot, and the BP falls, we have a back-up plan and can ride in the car for a while, getting out now and then to see the different sites. It’s painful to sit for long periods in the car, so having options of alternating walking and riding is a great mix and helps keep pain levels down.
Here’s a link to the car-ride trails in the Great Smoky Mountains National Park. We LOVE the Cataloochee ride, watching the elk and having a picnic are amazing things to do! When our kids were little, we always went in warm weather and let them wade/swim in the crystal-clear mountain creeks. Their freezing toes and chattering teeth have made for some pretty awesome family memories!

Cades Cove

Road Conditions

Besides how we’ll travel, I must also pay attention to the condition of the walking trails … are they level? Is the incline steep? Gravel…paved…clear of weeds and debris – ??? That’s important because I carry walking assistance in case I need it, like hiking sticks, my cane, or even my walker, all of which we have in the trunk of our car. I make a different choice of what to take with us based upon what kind of trail it is and what condition it’s in. Chris and I take very few trips where flying is required, because I have zero immunity and it’s such close quarters. Cruises are very infrequent also, and the physicians are pretty set in finding other ways to travel. This is great for us since we love the RV lifestyle, but we do have to take trail details into consideration when choosing travel methods.

Rest Days Are Essential

We chronic illness patients often do very well to schedule in a rest day after the festivities are over. We may not need it, but keeping it on the schedule isn’t going to hurt, and “activity hangovers” are well-known within the RA community. For those who can still work, if they take a week’s vacation, then the actual vacation time must be 5-6 days with a day completely for rest and recuperation. Ordinarily not a huge deal, but does impact our trip, knowing that we must save a day. Life is easier when we bookend our travel with prep days and rest days, so it’s just something we do. If we can’t catch everything we wanted in one trip, then we schedule a second trip to finish up. This is actually pretty great for shorter weekend trips, because we head out another weekend and get more time in Windy. That, my friends, is always a good thing!
There are numerous other ways RA and chronic illness impact traveling. It’s important to note that sometimes RA wins and I just have to postpone a day trip or weekend’s getaway. It’s okay if this happens. Thankfully, so far it doesn’t happen too often for us, but I’ve learned not to sweat it when it does. I keep putting one foot in front of the other, and with a few accommodations that have just become my norm over time, we can enjoy traveling in spite of my illnesses. I’ve even come to crave time outdoors, whether just for the day, or weekend, or an extended time away from the daily grind. Given that I have to work hard to make travel and getaways a reality, they sure are sweet and I’m intentional about enjoying every single second.
Much joy in your travels, my fellow RA, Sjogren’s and other AI Chronies. Would love to hear your travel stories and see pictures of where you’ve been!
Elisa Info Pic

Author Bio

Elisa enjoys farm life in the Appalachian Mountains of NE Tennessee with her husband, college-aged children, an adorable Brittany dog named Tucker, and the cutest goats ever. She enjoys being outdoors and serving in worship at local churches. After 25+ years in patient care and healthcare administration, Elisa went through her own health crisis, being diagnosed with severe rheumatoid arthritis and later, Sjogren’s Syndrome. Elisa is a fearless advocate for those with auto-immune disorders, particularly on the admin side of being sick, and uses her website to educate, encourage and empower others to win at chronic and find joy in their journey. You can find her at elisacomer.com OR chronicpraise.com
beach woman sunrise silhouette
Emily again!  I hope you enjoyed reading about Elisa’s journey.  Be sure to head over to her website to learn more!  Have you or anyone else in your life struggled with similar things?  I hope you’ll be able use this as both an inspiration to finding more joy in your struggles and a resource to help!

3 thoughts on “Traveling With Rheumatoid Arthritis And Sjogren’s Syndrome

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