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.

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!

(Photo by Marisa Zeppieri)