Nowadays, my brain seems to separate my life into two categories: 1) my “old” life (pre-diagnosis) and 2) my “new” life (post-diagnosis). The “old” Alexis tramped through airport security with the rest of humanity, lugging loaded bags and trying to endure fatigue. The “old” Alexis packed too much stuff, struggling to manage it all through baggage claims, taxis, and dodgy staircases. The “old” Alexis declined help, feeling too awkward to accept assistance. This was all before I knew I suffered from SLE; before all the pieces of my medical puzzle fell together to reveal the reasons for years of unexplained exhaustion, rashes and chronic pain.

From a very young age, I became a travel junkie. I was extremely fortunate that my family could provide these experiences for me; the memories I will treasure for years to come. But along with the exhilaration of adventure came the reality that something was not quite right. It seemed like every time we traveled during the summer, I would develop swollen hands; an itchy, burning irritation that made me wish I could rip my skin off. We had no idea this was the SLE sun rash, instead chalking it up to allergies. Other strange medical symptoms began to emerge as I grew into adolescence, including extreme fatigue and an ache that my childhood self could only describe as “feeling hollow”. In my mid-20s, I traveled with friends who always marveled that I required so much rest and teased me for always retiring early. I was known as a party-pooper, always begging off and collapsing into bed.

On one trip I had to hole up in a family member’s guest room; after a seven-day sun-drenched trek, I had developed strange mouth sores and swollen glands. I had no explanation for why I had a sore throat, yet no head cold. My cousin took me to a doctor as we were totally mystified. Although that particular clinic visit did not pinpoint the SLE, I was lucky to have someone help me obtain at least mild relief from some of my symptoms.

Then there was the tropical island getaway when my ankles swelled so much, I had to wear flip flops for a week. The sun rash erupted on my forehead, scalp and chest. I was baffled and just tried to cope as best as I could. Little did I know that my continuing to enjoy the Caribbean sunshine made my symptoms worse, not better.

These are just a few examples of how I traveled as the “old” me. I pushed ahead, trying to enjoy my vacations as best as I could despite my peculiar physical ailments. If I picture a timeline of my travels over the years, I see a downward trajectory of energy; like an Energizer Bunny who starts off lively and enthusiastic, but gradually slows down until its pathetic finish. But I have developed new strategies for handling travel in a more realistic way. My hope is to share my tips with fellow Loopies, so that they may continue to enjoy travel despite their physical and mental challenges.

Loopie Travel Tips:

• Acknowledge that travel will likely make symptoms worse. Talk to your travel companions ahead of time and educate them about:
  • What you may require
  • Likelihood of exacerbated symptoms
  • Where they can find emergency contact information for any doctors or other medical professionals overseeing your patient care

• Plan in advance to minimize anxiety.
  • Make a list of all medications and make sure you have ordered enough to get you through your trip.
  • If you are going to be separated from your luggage at any point (such as checking a bag on a flight), plan to take all medications with you; once I had a horrid “lost suitcase” incident that deprived me of my sun rash cream. I never made that mistake again!
  • Plan to leave lots of time to get from Point A to Point B; more time means less stress, and less stress hopefully means less pain.

• Don’t take too much
  • Ration yourself to ONE carry-on bag if you are flying, etc.
  • The more you take, the more you have to carry; invest in a bag that you can comfortably tote around (you’ll thank me later).
  • Pack comfortable, versatile clothing that can function for varied situations.
  • DO take snacks – you’ll need them to keep your energy up!!!

• Use all Disabled access opportunities
  • Airlines will arrange a wheelchair for you if you contact them in advance.
  • If you identify yourself as Disabled to flight attendants, etc, they can offer you special perks such as boarding early.
  • If you encounter an elevator as an alternative to a ramp, for example, USE it; cutting corners with all physical maneuvering will help reserve your mojo.

Most importantly, try to keep calm. Especially during busy travel seasons, such as the December holidays, fellow travelers’ stress can spill over into YOUR trip. I try to count my blessings and remain grateful that I can travel at all, given my limitations.  Taking deep breaths and repeating peaceful mantras to myself usually prevent me from losing my cool. Being well-prepared allows me to relax and enjoy the journey. Have pharmacy, will travel. That’s the way it is now. I can do it. YOU can, too!!!!

By Alexis P. Markowitz