Travel with Lupus and Sjogrens

There is a cost to travel with autoimmune diseases. After my recent trips to Paris and Oman, I've been recovering. I thought to share part of the experience to maybe inform others on the eve of their own jaunt.

Armed with cane, compression socks, scarves, meds, eye drops, eye patch, and goggles, I set out hopeful. On vacation, I take prescription strength NSAIDs which I don't daily take at home. This reduces rheumatoid arthritis joint and lupus tendon inflammation enough to function with more consistency. However, immediately, the airplane flared my Sjogrens, which dried my eyes, despite my safety goggles.

After landing in Paris and acclimating, we were off to tour the city. Hat and scarf and sunglasses were enough to protect me from the sun and wind.  

Eventually, I needed my sun-blocking umbrella, as well.

By the fifth day, my eyes were too dry to function, and my family led me through Montmartre. Apparently, there was graffiti in Sacre Coeur and little quiet dogs in the town. How interesting to listen to the sounds of Paris. 

Thankfully, though, on day six, I had a reprieve and was able to see the Louvre, albeit with my goggles. You do what you have to do.

The next leg of my journey was to Sohar, Oman, where I thought my eyes would recover in the humid desert. They did through the day but dried by night. Thankfully, we found drops at the pharmacy as I couldn't pack enough with the liquid airplane constraint.

I toted my umbrella, swam covered wrist to ankle (there was no chlorine in the pool), and rested on the understanding patience of family and friends.

On my last leg flying home alone, I hoped to be able to see to negotiate the airport. In my goggles, I peeped my way through the Bahrain airport and found I did look like a minion.

I made my way back to Paris and Seattle, but the flight caused a lupus rash on my legs. Thigh high compression socks are now recommended by the doc to fly.

Home again, I'm waiting through the fatigue and lupus flu symptoms, the rash is fading, and I have appointments for my eyes. I'm not able to drive a greater distance, not knowing if I will be able to see when I need to return home. I'm still in goggles and cancelling appointments. There is one new possibility I hope to pursue, which is a scleral contact with refillable chambers. More info here. This will be life changing if I am a candidate.

So that's the physical cost of my last adventure. But I filled my soul and that's true treasure. Here's to your next journey. Prepare, pack, endure the cost, but see what you can when you can. Otherwise, listen. Bon voyage!