-Your Lupus Survival Guide-
Noun: an extended period of leisure and recreation, especially one spent away from home or in traveling.
Vacation with lupus (definition):
Noun+preposition+scary noun: an extended period away from the safe bubble of lupus comforts, with impending doom following you from one jaunt to the next, as you chase the shade and pray for a private bathroom, with no hope of getting a good night's rest because you left your good pillow and good meds at home.
Recently while on vacation with my family, I noticed instances where I made accommodations for my illness. These adjustments ranged from mild... “No wine, thank you,” to moderate... “I will be in my room resting.” This is nothing new; I have been crafting an aptitude of awareness over the last 30 years of living with lupus. My “SLE Spidey-Sense” triggers me to be mindful and reminds me to set myself up for success when I am in an unfamiliar environment. Subsequently, with every trip I try to keep a mental inventory of what works and what does not work while I’m away.
I decided to share these tips and tricks with you, because with a little prep and determination, I think you CAN travel with lupus and you SHOULD if that is something you enjoyed in your B.L. (before lupus) life. I know many of you have experienced the stress and physical toll traveling can take, especially with active lupus; however, I also know what joy exploring different destinations, cultures, and experiences can bring.
Is it worth it? That depends. If traveling is a passion of yours, then yes!
Is it survivable? It will be now.
Here is your More Than Lupus Travel Survival Guide, a step-by-step-manual designed to make traveling with lupus less stressful and more enjoyable!
Before You Travel:
If you will be traveling for an extended period of time, you may need to refill your prescriptions ahead of schedule. Allow a few extra days for this, because most pharmacies need an additional approval from your insurance to do so.
Regarding packing your medications, make sure to have them stored securely in a pill box that you are able to keep in a briefcase, purse or carry on. Never put your medications in a checked bag. Reason being, if your checked luggage gets delayed or lost, you won’t be in a major medical bind.
Write out on a card your in-case-of-an-emergency person, doctor(s) names and phone numbers, allergies, major health concerns, and medications (and dosing) you take. Keep it in a briefcase, purse or carry on. This is a precautionary tool in case you needed medical assistance and could not communicate or remember your medication schedule. If you have an allergy or medical condition, consider wearing a medical alert bracelet.
Ask your doctor if you are ready for a flu shot or need any vaccines before traveling. If you haven’t received your COVID-19 vaccine, it is highly recommended to do so.
Immune Boosting Supplements:
Most people take Airborne™ or other “immune boosting” supplements before traveling. However, you need to be careful about taking anything that “revs up” your immune system. Talk to your doctor about safe alternatives like vitamin D and zinc.
Research the area:
Before you leave on your trip, research what the nearest hospitals are that accept your insurance. I also like to find accommodation's that are near a drug store. It is also important to make sure your lodgings offer non-smoking rooms and convenient transportation pick up and drop off.
Walking through the hallways of an airport can be difficult if you have lupus related joint issues. Did you know you can request a wheelchair? You sure can! You can even talk to the airline attendant about boarding early.
I always prefer an aisle seat. Aisle seats are nice because they have more leg room, and it gives you the advantage of being able to get up more without feeling like you are inconveniencing the person next to you. Lastly, traveling with antibacterial wipes is a must. I always wipe down my tray table, arm rests and seat on an airplane!
When In The Air:
When you are on the plane, try and get up at least once when the seatbelt sign is off. Going to the restroom is a great way to stretch your legs, do a small back bend or twist, some wrist and shoulder circles and stretch your neck. For those who suffer from nose sores, ask your doctor if Vaseline is safe to use on the flight to prevent your nose from getting irritated from the dry recycled air. Also, ask the flight attendant for extra water. Keeping hydrated is important.
The Hotel Room:
If you are staying in a hotel, ask for a room that is close to the elevator and in a convenient location. Most hotels must meet ADA standards, which means they have wheelchair accessible rooms, with amenities like shower and toilet hand bars.
Here are a few more tips to make your hotel stay more lupus friendly:
Don’t be a hero, ask for more pillows if you need them. Bring your own pillow if you know that will help you sleep better.
Bring a gel hot/cold pack and stick it in your mini-fridge. Use it at night on your sore muscles or joints.
CBD bath bombs or bath salts are amazing to bring on a trip. After a full day, it will help you relax and release any muscle or joint tension.
Bring a dry shampoo and USE IT! Taking the energy to wash, dry, and style your hair can be exhausting and time consuming. Here is my favorite dry shampoo from Dry Bar!
Ask your doctor about melatonin to help with sleep. Recent research has shown that it is safe for lupus patients and is a healthier alternative than sleeping pills.
Getting Around Town:
If you suffer from joint pain or immobility, many airports, museums and other public attractions offer wheelchairs and motorized scooters.
Take this opportunity to relax. Take a taxi, a carriage ride, a rikshaw. Don’t wear yourself out the first or second day!
Bring a small travel umbrella with you. You don’t want to get yourself in a situation where you are getting too much direct sun.
It is estimated that two-thirds of people with lupus have increased sensitivity to ultraviolet rays, either from sunlight or from artificial light. Each person with photosensitivity is different and the symptoms that present can be different too. For myself, since I am Hispanic and have darker skin, I don't feel the effects of too much UV exposure right away. It takes me a day to feel it. So I have to be careful not to overdue in the first couple days of a trip, or I will experience joint pain, headache, fatigue and rashes in the following days.
Protecting yourself from the sun can help prevent lupus flares, so it is important to use a broad spectrum SPF AND wear sun protective clothing. Most doctors would recommend using at least an SPF of 70 or above that blocks both UVA and UVB rays.
It is essential to apply a generous layer of sunscreen (shot glass full) every 60 minutes, especially if you are in and out of water. According to the American College of Dermatology, it takes approximately 15 minutes for your skin to absorb the applied sunscreen. So apply indoors and set a timer, because your skin will not be protected until absorbed and you can get burned. For more tips and product recommendations for staying safe from the sun, click here.
You are probably aware of what foods make you feel crummy by now. It is important to stay away from lupus flare trigger foods and be proactive about avoiding food allergies. If traveling to a different country, learn how to say “shellfish” or “egg” or whatever your allergy may be in that language. When in doubt, "NO" is a pretty universally understood word.
In general, you should try to eat a nutritious, well-balanced, and varied diet that contains plenty of fresh fruits and vegetables, whole grains and moderate amounts of meats, poultry, and fish - even on vacation.
If you want to cheat here are some guidelines:
Alcohol in moderation: Alcohol can lower the effectiveness of some medications, cause new problems, and/or can make existing problems worse. NSAIDs -- such as aspirin, ibuprofen (Motrin®), naproxen (Naprosyn®), and celecoxib (Celebrex®) -- can cause ulcers and bleeding in the stomach and intestines. Also, anticoagulant medicines such as warfarin (Coumadin®) and the chemotherapy drug, methotrexate, may not be as effective if you are drinking alcohol.
Limit high fat & high sodium foods: If you are taking steroids, or have kidney inflammation, you should limit the fat and salt in your diet as both can contribute to increased side effects and inflammation.
Avoid alfalfa: Alfalfa tablets and sprouts have been associated with reports of a lupus-like syndrome or lupus flares.
My last vacation reminded me that though lupus can be "life-changing" it doesn't mean these "life-changes" are so bad that you have to stop living your life. Simple alternations can allow you the opportunity to continue to make memories and experience great joy.
Kelli’s travel bag essentials:
Cetaphil SPF 50 moisturizing cream
BioFreeze roll on pain relief
Cepacol antibacterial/antiviral mouth rinse
Vaseline (for nose dryness/sores)
Beauty Counter tinted SPF sunscreen
WetOnes Antibacterial wipes
Interested in learning more about the fun and convenience of RV travel life? Read this blog by lupus patient, Amy!
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2021.