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Life With RA: Pain & Other Challenges When Traveling

Article #2

By Lu Sobredo
Thinking about winter or summer travel... The process of preparing for a vacation abroad, and the forethought required are akin to searching for the strongest version of myself, one with a padded soul that could absorb unexpected jolt and dilemma unique to the disabled. The following is an excerpt from a very personal essay about taking an extended summer vacation abroad three years after a diagnosis of a crippling disease called Rheumatoid Arthritis (RA). My present goal is to experience a vacation abroad in the  cold of winter, no less. An experiment of sorts to see how this RA stricken body could take it. ~ Lu Sobredo

As a person with RA, I face debilitating physical symptoms; complex issues surrounding treatment and medications, and a vulnerability towards feelings of dejection. These three areas of challenges surrounding my illness have compelled me to explore for a set of solutions that works. Doing so reduced anxiety about traveling when disabled.

Travel with my Trusted Walking Cane. ©Lu Sobredo

(1) What Are My Physical Symptoms? 

Symptoms might include decreased mobility or mobility disorders due to inflammation, stiffness and pain in the joints. For me, these symptoms are mainly in my knees, ankles, hands and wrists. When these symptoms persist for any length of time during the day, they not only impede mobility, they also cause my stamina to suddenly drop. There are days when I definitely get brain fog or what feels like brain fog. Some of you might be familiar with the feeling of disorientation and forgetfulness. Luckily this past year, these instances have been less frequent. My health journey has progressed for the better as I have been able to move around without a wheelchair. Starting autumn of 2015, I managed to walk about with only a walking cane. My goal was to be more functional and I welcomed any device that aids movement. I have seen others use elastic knee brace, wrist brace, walkers, crutches, wheelchair and foldable walking cane. Whatever works for you.

Practical Solutions That Help With Physical Limitations

  • Select an ambulatory assistive device that fits one’s needs
  • Call the Airline company a few days before departure to arrange for a wheelchair at the airport and pre-boarding privilege.  
  • Travel with a family member or close friend. My husband who made the travel arrangement, also arranged for a companion to travel with me knowing he couldn’t be with me at all times. So my most treasured assistance came from my college-age son Adrian who became my travel companion. He helped me transcend and rise above difficulties encountered during our travel. 

(2) What is the Regimen of Treatment and Medications? 

These may be as complex as the disease depending on one’s ailment or physical condition. I will consider discussion on alternative treatment options for RA in another blog. Personally, I take medications to reduce the debilitating symptoms and to inhibit further potential damage to the body. At least one medication requires refrigeration. Some of the dreaded scenarios I considered were: What if I lose any of my prescription drugs while in transit? How do I access ice or a refrigeration? How do I ensure I take the prescription on time?

Practical Solutions For Medication Challenges

  • Remember to take a hard copy of the doctor’s prescription in the event you lose or misplace your supply. Pharmacies abroad are not hard to find. My RA specialist assured me that in Europe, research for my medical condition is much more robust and treatment more advanced than in most countries including mine.
  • Take a carry-on suitcase in the airplane that can hold an insulated bag with ice packs for medications that must be kept cool. When traveling, I made sure the medications were accessible in my carry-on so I could take them as scheduled. Yes, there are risks to not taking the medications as scheduled. The highest risk is an increased likelihood that the worst of the symptoms could flare up. I also carry up to eight resealable plastic bags of various sizes for ice cubes. I used ice cubes to cool my tired or pained knees or other joints while in the airplane. Flight attendants were helpful in this regard. Just ask nicely. Double up the plastic bag with a barf aka vomit bag as it is designed to lessen leakage, most important once the ice has melted. Most hotels, hostels or albergues have a refrigerator and will freeze the ice pack overnight for no fee. A frozen ice pack while in transit will keep medications cool as required.
  • Keep a daily reminder to take medications on time, and be aware of the difference in time zones. I set my phone calendar and alarm clock to help me stay on track. The adverse consequence, if I didn’t, was enough incentive to stay on schedule.

(3) Why The Vulnerability to Feelings of Dejection? 

This feeling of dejection could come and go like a nightmare. It is common among people afflicted with a chronic and debilitating disease. The nagging pain and feeling of helplessness are enough to lower stamina. Invariably, a lowered stamina and a compromised immune system are just two of the many potential side effects of the prescription drugs. If I had internalized what the first consulting physician said to me three years before, my life might have been doomed forever. If at any point in my health journey, I had chosen to stay under bedcovers in an unlit room with curtains drawn closed, sleep in or mope about at home, my mental outlook would be totally different today. It is so easy to see only the darkest clouds over the brightness of day with this disease.

Practical Solutions That Help Me Cope

  • Expand knowledge about the disease. Recognize that any increased mobility serves as signal that it’s okay to get up and get out of the house, even just to go in your backyard or the other side of the front door. I did so with doctor’s approval.
  • See a Mental Health Specialist as needed.
  • Consume healthy drinks and meals. I was diligent in making fruit and vegetable smoothies about one year before my summer travel abroad. I limited consumption of meat and rich foods. My go-to meals usually included wild fish and organic chicken or turkey, spinach, broccoli and yellow squash.
  • Read travel magazines and blogs with photos to conjure up beautiful locales to visit. 
  • Sign up with a gym for chair yoga, aqua aerobics, stationary bike or whatever the doctor may have ordered for physical therapy or activity.
  • Seek out and socialize with closest family and friends. Dine out, listen to jazz or other music of your choice, or attend a rally for social justice with your significant-other. Engage in whatever moves you. I subscribe to all these activities and more. Although each step towards increasing human interaction or taking up an activity or cause might be daunting at first, I gave myself permission to push one day at a time at a pace of my own choosing. Lo and behold, a rhythm to a redefined life routine eventually took form. The possibility for a renewed vigor or a new normal can invariably transform a chronic illness into a manageable one. It takes time, but worth the effort. Take deep cleansing breaths if possible. One never knows, I might just see you at the Prado Museum in Madrid or at an outdoor cafe in Barcelona or Porto. 

Closing With Much Hope

One valuable lesson that clearly stands out in my journey to a new state of healthy: being disabled, that is, having a disability doesn’t mean one is unable. My new normal for now no longer requires a wheelchair, thankfully. Sometimes, I might opt to request a wheelchair at airports. I am happy to be walking with the aid of a cane. More than ever, I am happy to accompany my husband at some of his travels, conferences, special dinners, photography shoots, and research trips. I am no longer paralyzed by the thought that I might have to use stairs occasionally when old buildings in Europe are not equipped with escalators or elevators. I might need some help navigating, but I now ask for and welcome the help. How often I engage in demanding adventures is highly influenced by the degree of pain and discomfort the body is willing to manage and what type of challenge the soul hungers. The good news? That the soul still hungers.

Listening & Dancing to Jazz New Year 2015 While Disabled. ©James Sobredo

© Essay: Lu Sobredo, Writer/Editor


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