Tips for Being Prepared When Lupus Follows You on Vacation

Tips for Being Prepared When Lupus Follows You on Vacation

If you are living with lupus, you know all too well that we never get a break from the disease. I sometimes tell my husband that I wish I could go a few days without even hearing the “L” word. Although I feel (after 17 years) that I have a pretty decent hold on things, there are still those tiny specks, those moments of grief or bitterness because of the things lupus has taken away.

For a long time, lupus took away much of my independence. For the first 10 years after diagnosis, I was bound to my home or within the boundaries of my city. There was a long spell when I was in a wheelchair, and I had over 30 hospitalizations.

I felt safe at home or within a few miles of my home because I knew my medicine and my medical equipment were there. I also felt safe being in the confines of my town, Fort Lauderdale at that time because I knew where all the best hospitals and doctors were, should anything happen.

Image of Ketchikan Alaska
Ketchikan, Alaska. (Photo by Marisa Zeppieri)

And while I felt “safe,” I was also restless because I’d always been on the move before my diagnosis. In my 20s, I had traveled all over the place, alone, without a care in the world. Lupus took that from me, but I was determined to get it back. I began with one-night sleepovers with my husband at a destination located somewhere within a few hours of our home.

As I became more comfortable, we took longer road trips; I brought my medical equipment and my medicine with me. And then, as my disease activity stabilized in some respects and I felt a little more in control, air travel was added and I began to enjoy traveling once again.

So, 17 years after my diagnosis, I recently went on one of my greatest trips ever. My husband and I traveled from New York to Alaska and northern British Columbia for our 10-year wedding anniversary. Honestly, I was terrified.

Being 4,000 miles away from home and in a country I wasn’t familiar with had my head spinning. However, although I was worried, I was also excited. My physicians felt I was in a good place to travel, and so off we went.

Alaska and British Columbia were stunning, as you can see from the pictures. There were, however, a lot of speed bumps. I learned a few things on vacation that I want to share with you:

  • Carry several days’ worth of medicine in your purse or carry-on. While I usually carry 24 to 48 hours of medicine in my purse, this last trip taught me a lesson. The airline lost all of our checked bags, so when we landed in Vancouver, I didn’t have my extra medicine. They didn’t find the luggage for four days. And because I was in a different country, I couldn’t pop into a Walgreens or CVS to get a refill. I did learn that if the airline loses your baggage, and you tell them your medical conditions and that meds are in your bags, they will flag the tag numbers as a high priority.
  • Plan a rest day every day or two (this can be tweaked depending on how your body reacts to physical stress). I really pushed myself on this vacation because I wanted to see as much as possible, and I paid for it. Considering I give myself rest days throughout the week at home, I should have made it a priority while away. Before you go make a list of the places high on your “must-see” list and schedule in rest periods/days.
  • Scout medical care, hospitals, walk-in clinics, and pharmacies before you go. Consider travel insurance in case you wind up sick or in hospital in another country that will not take your medical insurance.

Even though our bags were lost, my debit card was hacked, and we both got a cold while on our trip, we made the best of it. And while we can’t seem to get a day “off” with this disease, we can put some protections in place so we can continue to enjoy life’s treasures.

Do you have travel tips you would like to share? Tell us in the comments below!

Image of Ketchikan Alaska
(Photo by Marisa Zeppieri)
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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.

3 comments

  1. O.C. O says:

    Hey Kin Lupus Warriors!
    Here are my sound bites:
    1. Partner Up! If you are traveling to a geography that stretches you, have a pre-trip consult with your M.D. It’s great to help set expectations, get traveling doses of meds you may need (ex.antibiotics).
    2. Remember, the glass is half full! When I changed my attitude from the notion that resting was interfering, to the idea that resting is what allows me to create memorable experiences, it was a game-changer for my relationship with my diseases.
    3. Prepare for the unexpected! Get trip insurance. Carry the big necessities with you–meds, money, ID, credit card, passport, change of clothes, emergency phone numbers for your medical providers.
    4. Back Up Your Data! Take cell photos of your luggage, its tag, your passport, your itinerary and contact numbers. Picture are worth a thousand words, esp when you don’t speak the language.
    5. Redundancy! Redundancy. Pack several copies of your medication list (with dosing info and carry one with you, give one to a traveling companion and keep one in your luggage. It’s much easier and safer to be treated in an emergency if providers know what meds & supplements you take.
    6. Stress Less! Pack whatever floats your boat–a favorite calming meditation, breathing exercises,music, stress ball, yoga mat, etc.
    7. Keep on Trekking! Whether it’s 5 or 5,000 miles from home, if traveling is life-giving for you, find ways to keep exploring new horizons.

  2. Susan White says:

    My problem when traveling is I get sick when exposed to UV rays for too long. I’ve dined el fresco, under and awing; then shortly after I get painfully sick. My daughter also a Lupie breaks out in big sores on her face and chest. As a result I have developed UV sensitive wearables that color when in UV rays. They have helped us greatly because we know it’s time to get inside. I want to share these with others. I have an Etsy store UVAwear. Even people who don’t have Lupus but are concerned about their skin or their children’s health have found these helpful.

  3. Alwina S says:

    Other than carrying my medicine in the carry-on, nothing else pops into my mind right now. I managed to carry medicine for an entire month when I was on a scolarship in Barcelona last year.
    I have to say I am lucky having a milder version of the disease and being a doctor myself (Internal Medicine), but I can perfectly understand many of the struggles that come with this 1000 faced condition. I wish you all the best and many more beautiful trips. Big hug

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