The Guardian Angel Cathedral, Las Vegas, NV My Husband and I Were Married Here Photo by Carol M. Highsmith Public Domain
It was about twenty years ago when I first traveled with lupus. I was in medical limbo at the time: the symptoms of lupus were evident but the disease had not yet been diagnosed. My husband and I were vacationing in Las Vegas, his favorite destination. We had been married in that gambling oasis and returned to the city every year, if circumstances permitted.
Las Vegas is Disney World for adults; real-world problems, like money and bad news, are remote and don’t seem to matter. As we walked around the city we knew so well, changes were evident. Old standbys, like the Dunes hotel, which had been our honeymoon retreat, were gone. In the place of these old Vegas institutions were more magnificent, resort-oriented complexes.
There were other, less obvious, but nonetheless pervasive changes that intruded into our trip.
We were walking along Las Vegas Boulevard–the Strip–one afternoon. As was our habit, we eschewed the use of taxis and buses. I struggled during our stroll to match my husband’s energy and my own pre-lupus standards. It has always been my inclination to keep personal battles private, but there was no hiding the fact on this outing that I was lagging.
Finally, my husband turned to me, and said, with his inimitable economy of expression, “It’s like you’re half a person.”
We’d already been in Las Vegas for a couple of days when this insight hit him. It had taken that long for him to realize that, much like his beloved Las Vegas, I had changed. Our vacation was the first time since I had become ill that we had been thrown together so much. Back home, in our every-day lives, we both had jobs outside the home–his entailed a lot of overtime. While he knew before the trip that I was experiencing health issues, the intrusive nature of those issues had not been obvious. But now they were unavoidable.
As we explored our Vegas haunts and sought to build upon memories from the past, my husband understood that the past was gone. He was confronted with a new reality: a new version of Vegas and a modified version of his wife.
It’s spring now and we are planning a trip to Vegas. Our annual pilgrimage was canceled once or twice in prior years because of health issues, but this year we’re ready. The World Series of Poker puts on its main event in late spring and early summer; my husband likes to be in Vegas for this tournament.
Lupus is background noise; it’s something I deal with as I go about my life. The trick is to keep this nuisance in the background and not let it derail my plans. There are certain actions I take to try to insure this will be the case.
The preparations I make for my trip may not be appropriate for other people with lupus, but I think many of these pre-trip measures may serve the needs of some who are living with lupus.
Some of the things I do to get ready for traveling are:
- Buy comfortable shoes and plan to wear them, no matter how they might look with my clothes. Break in the shoes before the trip. Even if old shoes look O.K., often the cushioning in the sole is not as good as it once was. I plan to do a lot of walking and I need to have joint support.
- Get extra medication and pack it in at least two places: my carry-on and my suitcase.
- Start my medication (low-dose prednisone) before I leave, so a stress-induced flare is less likely.
- Chill out, as much as possible, to relieve the inevitable stress of preparing for a trip. In my case, this means going to my reliable psychologist/hypnotherapist over the next couple of months for sessions. The therapist will give me post-hypnotic suggestions and help me to practice relaxation techniques, such as meditation and breathing exercises. I use the services of this very skilled and sensitive professional the way some people use medication: he’s an effective intervention and, unlike drugs, doesn’t have associated side effects. I’ve posted some links below to websites which describe the very real, therapeutic benefits of hypnosis–whether the goal is to reduce stress or alleviate pain.
- Locate a doctor in the Las Vegas area who will be available should I get sick while I am on vacation. This is the first year I am doing this. I’ve been sick in Vegas and this is a kind of scary thing to go through on my own. Having a recommended physician on hand will give me greater confidence.
- Pay extra $ to sit in airplane seats that have more leg room. Seems like an indulgence, but this really helps with joint and muscle problems. Airlines may assign free bulkhead seats to passengers with medical issues. However, the last time I flew and took the bulkhead seat I was not comfortable. Though I could stretch my legs I could not move the seat back. When neck, joint, and back pain are present, seat flexibility is important. I usually bring a small pillow to support my neck. It’s a five hour flight from New York (where I live) to Las Vegas. Added on to that time is surface transportation before and after the flight. With all of this, getting to a destination can be so arduous that by the time I arrive I am already in bad shape. So investing in comfortable seats ends up being more a necessity than a luxury.
- Stay hydrated. Blood clots are a risk for anyone on a long flight. Most people with lupus and those who are on steroids face an increased risk. Dehydration increases the chance of developing a clot and so does immobility. I try to get up frequently and stretch my legs. The longer the flight, the more important these measures become.
- Bring some good quality surgical masks (OSHA rating N95) in case someone around me on the plane is sneezing and coughing.
- Bring non-latex examination gloves and my own soap to protect super-allergic skin. The gloves are not likely to be used but the soap–and my own shampoo/conditioner–are essential travel accessories.
- Carry a letter from my doctor which indicates to airline screeners that I have a restricted diet and must carry special food on the plane. Then pack that food in my carry-on case.
- Bring a variety of hats for cover up just in case a restaurant/airline terminal has bright fluorescent overhead lighting. A good, broad-rimmed hat also comes in handy for protection from the Las Vegas sun–although this is a lupus antagonist I have learned to avoid.
- Make sure the hotel has a small refrigerator reserved. I usually buy a few supplies on my first day in town so that I don’t get into trouble by eating foods that I shouldn’t. Hotels will usually provide a refrigerator free of charge if there is a medical need.
My pre-trip activities obviously are geared toward my specific needs. There are travelers who may have more of an issue with blood clots or immune suppression than I do. There are people who really do have to stay out of crowds and who have more problems with mobility. Careful planning and a conversation with the doctor are always in order.
In preparing to write this brief essay on travel, I looked up a few websites which address the challenge of traveling with lupus. Some of these sites have practical, useful advice. I’ve listed three that I found interesting.
- Vacation Inspiration, in Lupus Now Magazine
- Traveling on the Lupus Foundation website
- Traveling Smart with Lupus, from the S.L.E. website
Several sites describe travel adventures which amaze me. One, Wherever with you, is authored by “Kate”, who has lupus. Her article, Traveling with Lupus, describes a journey into the Australian heartland. Kate understands that some people might think she’s crazy to embark on her adventurous vacations, but she explains that she makes accommodations to keep lupus flares at bay. Although I can’t imagine ever emulating her activities, I do admire her spunk and courage. http://whereverwithyou.com/2013/01/23/traveling-with-lupus/
Below are links to two of many websites which cite studies on hypno-therapy. The studies described below show demonstrated benefits when hypnotherapy was compared to control groups that had no therapy and to groups that had an alternate non-pharmaceutical intervention, like meditation. Of course, your doctor should always be consulted when you are considering introducing any treatment modality. Also, the doctor is probably the best place to get a referral. Word-of-mouth and advertisements are not reliable sources.
Two sites which discuss hypnotherapy are:
- Hypnosis as an intervention in pain management: A brief review from the International Journal of Psychiatry in Clinical Practice