From the Archives: Summer 2007 Lupus Now magazine
Vacation Inspiration by Phyllis McIntosh
Fifteen-year-old Gloriana DeCandia of Ventura, Calif., has had lupus for half her life. The joint pain and fatigue make her unwilling to go on overnight outings with friends or school groups, because she doesn’t want to burden other parents or chaperones if she should get sick.
Gloriana's sister, Anissa, 13, has paroxysmal dyskinesias, a movement disorder that causes mini-seizures and tightening of the muscles on one side of her body.
To reduce the stress of dealing with chronic illness, the DeCandia family takes frequent mini-vacations. They enjoy tent camping at nearby state parks or beaches, or spending weekends at baseball games, usually watching Gloriana’s beloved Yankees play the California Angels.
Such simple getaways allow the family to cancel plans easily if the girls' health flags.
"Being at home in the same routine, Gloriana's spirits easily become subdued," says her mother, Irma, "but even staying in a hotel on baseball weekends is relaxing for her and cuts down on stress levels."
David, the girls' father, adds that simply putting upcoming trips on the calendar gives his daughters something to look forward to. "It's a source of strength for them."
Because lupus is aggravated by stress, "it's especially important to get away to a pleasurable spot where you can relax and let go," says Mark Gourley, M.D., a rheumatologist at the National Institutes of Health. While no one kind of vacation is right for everyone, "The key thing is to make sure you do something you enjoy," says Gourley.
While some people want the luxuries of a spa or resort, others are rejuvenated by visiting an exciting city or spending time outdoors. If visiting family is an ordeal, that's probably not the best way to de-stress on vacation. But if Mom still likes to pamper you and cook your favorite comfort foods, a visit home may be just the ticket.
If people with lupus recognize their limitations, plan accordingly, and listen to their bodies, there’s virtually nowhere they can't go, declares Debra Briscoe Kerper, 57, veteran traveler and owner of Easy Access Travel in Riverside, Calif. Despite having battled lupus since 1970 and losing a leg to a bone infection in 1979 (unrelated to her lupus), Kerper has journeyed to some 25 countries and traveled more than 100,000 miles last year alone.
The first step in planning a trip is to decide where you want to go. Kerper says that 90 percent of her clients, disabled or not, end up going on a cruise -- an ideal choice for individuals, couples, and families.
"A cruise ship is a real safe environment," she says. "Your room is always there, and for people who get a little apprehensive about traveling with an illness, medical care is available on board. And there are so many activities for everyone from toddlers to people in their 80s, which allows people to do what they want."
Do keep an open mind about travel options and try not to limit your horizons, however.
Katherine Milts, 51, who lives in Seattle, loves to walk and, after living with lupus for a decade, felt well enough to sign on for small group hiking tours. She began with a relatively easy trek in Nova Scotia and has since hiked in New Mexico, Quebec, and France. “This past fall I spent three weeks in Spain, including eight days on a hiking tour in the Pyrenees, hiking six to eight miles up and down mountains every day,” she says. “I took ibuprofen around the clock while on vacation and was still in pain every day. But I made it to the top of the mountain and back down again, and that was worth all the pain. I sure enjoy pushing the limits for a couple of weeks a year.” Upcoming trips include a visit to Italy, where she plans to do some “urban hiking” in Rome and Florence, and a fall excursion to the Grand Canyon.
And Gloriana DeCandia recently accompanied her dad, a tea buyer by profession, on a business trip to Japan.
“We no sooner got there than she said, ‘I can’t make it,’” David recalls, “but the next day she was a little better and decided she’d tough it out. For the next five days we traveled the tea fields of Japan, and it turned out she had a great experience.”
Make the most of your getaway
Take advantage of the good days, advises David DeCandia. Get away when you can, even if for just a day, he says. The DeCandias maintain a membership at the nearby Santa Barbara Zoo, a favorite day trip destination. “If we can’t make it one day, we can always go another,” he says.
Roxanne Perez, 34, of San Antonio, who moved in with her parents several years ago after being diagnosed with lupus and suffering a massive heart attack, enjoys short, spur-of-the-moment jaunts in her dad’s comfortable RV.
Do your homework when planning a longer vacation, especially if it will be a group setting. Study any tour itineraries carefully and choose those that include free time for you to rest while your travel companions sightsee or shop on their own. Consider the weather at your destination and, if you have the flexibility, plan your trip for cooler seasons of the year to avoid heat exhaustion that can cause lupus fatigue to worsen.
Definitely opt for convenience. “It may cost a bit more to stay at a hotel in the middle of town, but being close to everything you want to see will be worth it in the long run,” says Kerper.
Even if you're able to do plenty of walking, you may want to consider using a wheelchair or scooter at the airport, a theme park, a large museum, or any destination with vast expanses to cover.
When Anita Emery, 52, of Granite Falls, Wash., and her husband went on a family reunion cruise in the Caribbean, they booked a stateroom with a balcony. “During the day, I could sit in the room and enjoy the scenery from inside,” she says. “In the evenings, when it was cool, I could sit outside on the balcony.”
Consulting a travel agent is another way to get exactly what you want. While an agency that specializes in planning vacations for people with disabilities might best understand your needs, any good agent can run interference with cruise lines and tour organizations. Anita Emery and her husband booked their Caribbean cruise through AAA, which explained to cruise officials that Emery would not be able to participate in lifeboat drills or stand in long lines in the sun.
Planes, Trains and Automobiles
Consider alternate modes of transportation to get to your destination. Nicole Forney, 23, who suffers from lupus, rheumatoid arthritis, Reynaud’s syndrome, which causes circulatory problems, and ITP, a platelet disorder that causes bleeding and bruising. After a flight to Las Vegas from her home in Roseburg, Oregon, she became so ill that she was able to enjoy only the last few hours of the entire vacation. Now Nicole and her husband, looking forward to a trip to Disneyland with their three-year-old son, plan to travel by car. “It’s a 12-hour drive, but we can stop whenever we want to allow me and my son time to relax and move around,” Nicole says. As a precaution, they are booking a hotel just a few minutes from a hospital.
For another upcoming trip to Texas, the Forneys plan to travel by rail on Amtrak. “I can move around, and I’ll have my own bed,” she says. “It will be a little more expensive than a plane, but when it comes to your health, that really doesn’t matter.”
Take good care
Listen to your body -- it's probably telling you to pace yourself. If possible, build some extra time into your trip. When she travels to Lupus Foundation of America meetings, Perez, vice president of LFA, South Central Texas chapter, arrives a day early, spends the night after her meetings conclude, and leaves rested the next day. “I also try to make sure nothing is scheduled a couple days prior to and after a trip, because it does take a lot out of me,” she says.
“The hardest part is listening to myself and knowing when not to go out, because I want so much to do everything,” says Milts, who has learned that she must forgo hikes in exposed areas on warm, sunny days. In a warm climate, try to plan activities in the morning or evening when it’s cooler. And save your energy for the things you most want to do. On a cruise or tour, don’t book excursions ahead of time, Emery advises, “so you won’t feel bad about money that has been spent if you can’t go.”
Protecting yourself from the sun is anoher must when you have lupus. Sunscreen, a wide-brimmed hat, and sun-protective clothing are essential gear on any vacation. But also think beyond the obvious. Forney got a medical prescription for tinted glass on the side windows of the family car to protect her from the sun on the long drive to Disneyland. She also found a tent with UV protection for camping trips to the Oregon coast.
With careful planning, you can enjoy activities that at first glance might seem off-limits to people with lupus.
“I even went snorkeling,” Emery reports proudly. “It was my first time in the water and the sun since I was diagnosed with lupus four years ago. I got a bathing suit that looks like a sports outfit and covers me from my neck to my wrists and all the way down to my feet. I sunscreened everything else with SPF 45 or 50 before and after I went in the water. I had never been snorkeling, and it was heavenly to be in the water!”
But no matter how much fun you're having, this is no time to skimp on sleep. Fatigue can really cramp your style on vacation, so take naps when you feel the need and keep a regular bedtime. “On the cruise, I pretty much gave up late nights when the rest of the family went dancing and did things I would have enjoyed,” Emery says. “My husband is very supportive, which really helps.”
Plan for the down times by accepting that there will be days when you simply must lie low. The DeCandias have learned to allocate a day or two during any week-long trip for the girls, especially Gloriana, to recuperate and catch up. Emery always takes a book or knitting along to occupy herself when she feels like staying in her room. Avoid potential guilt trips or companions' hard feelings by explaining ahead of time that you may not be able to join them in all activities.
Don't forget to enjoy yourself
Look forward to your vacation, expect to enjoy yourself, and treasure moments with friends and family. Such experiences are especially precious to Forney, who nearly died giving birth to her only child, Osten. “We only live once, and we need to enjoy our vacations with our family and our children,” she says. “Make those memories happen as much as possible.”
- Skip the 800 number and book a room directly with the facility where you want to stay. You can ask questions about the layout and make special requests, such as a room near the elevator or a portable refrigerator to store medications that must be kept cool.
- Get to the airport early and allow extra time for layovers so you don’t have to rush. Pack light and use wheeled luggage.
- Call your cell phone company to make sure your phone will work at your destination. Many phones are now equipped to work in other countries. If yours is not, you can rent one for your trip.
- Consider travel insurance. “You already have a chronic illness,” says veteran traveler Debra Kerper. “If you have to fly home in an emergency, you don’t want to pay for medical evacuation.”
- Take copies of all your prescriptions and the generic names of all medications you take, advises Mark Gourley, a rheumatologist at the National Institutes of Health, because some drugs are known by different names in other countries.
- Ask your doctor for the name, address, and phone number of a physician at your destination. A letter from your doctor explaining your condition and treatment you require can be helpful in case you need medical care while traveling, Gourley says.
- Carry medications with you, not in checked luggage. Some travelers place meds in two separate places in case one bag or purse is lost or stolen.
- At airport security checkpoints, the rule limiting liquids to three-ounce containers carried in a quart-size clear plastic zip-top bag does not apply to liquid prescription medications. They are allowed in greater quantities but do not place them in the zip-top bag with toiletries. Keep all medications in original containers with the prescription label.
- Canes, walkers, wheelchairs, scooters, and other disability-related equipment are permitted through security checkpoints after screening.
- Passengers with disabilities or medical conditions do not have to remove their shoes, but footwear may be screened while still on their feet.
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