After being diagnosed with lupus, I used to joke that I am a 20 year old trapped in a 50 year old body.  This year, I officially turned 50 and thank goodness I don’t feel like how I felt when I was 20. The joint pain, severe fatigue, difficulty breathing, fever, anxiety, depression, feeling trapped, isolation,... are all the senses that I do not want to relive.  Instead, I want to feel alive, free, peaceful, happy, loved, supported and in control.  There is no better way to feel these senses than to do activities that we enjoy with people who we like.

My husband and I decided to hike the last 128km of the Camino de Santiago in Spain this year.  While it’s not a technically difficult hike, it is much longer than anything we’ve done previously.  Pilgrimage hikes like these have always attracted my interest.  Two years ago we hiked the Kumano Kodo, a sister hike to the Camino. What I find appealing about these hikes is that they give me an opportunity to let go of all the distractions.  I find hiking meditative and it allows me to self reflect.  It also satisfies my love of nature and beautiful scenery.  Because these hikes often involve traveling to other countries and staying in small towns along the way, it is also a great way to experience the culture.  

I must admit, there's always this weird mix of excitement and nervousness when I try to take on a new challenge.  Despite managing my lupus well, extended sun exposure and strenuous physical activity could potentially trigger a flare.  Although we meticulously planned and intended to train before the hike, unforeseen circumstances disrupted our plans.  During a training hike, I developed Achilles tendonitis, abruptly halting my training progress.  Moreover, a day before my trip, a minor car accident occurred while I was stopped at a red light, further exacerbating my already tense neck and shoulders. To compound matters, during my connecting flight, I discovered that the airline had mistakenly failed to register my boarding for my initial flight, resulting in the deletion of my entire itinerary, including my return flights.

Reflecting on the 40 hours leading up to our arrival in Lisbon, I feel fortunate for the positive outcome. The car accident set my mind racing, forcing me to make quick decisions and take more risks than usual. Due to my achilles tendonitis, I had access to a muscle relaxant. I determined that if the relaxant, massage, and rest didn't alleviate my symptoms, I would seek medical attention. With over three decades of experience managing health issues, I can usually discern when something requires professional assistance. Fortunately, my first stop was Lisbon, a city with reliable healthcare. If I had been traveling to a region with limited healthcare access, my decisions might have differed. Understandably, stress levels were elevated during this time. However, I made a conscious effort to remain composed and address each issue systematically. While unforeseen events can arise, we must accept them and focus on finding solutions.

Despite the setbacks and unexpected twists, the Camino de Santiago proved to be a transformative experience. The physical challenges, though present, were manageable, and the emotional and spiritual rewards were immeasurable. I was also deeply inspired by all the people we met along the way, ages ranging from a few months to 80 yr old. The determination to reach Santiago was not hindered by any blisters, knee, or ankle pain.  We even saw someone on crutches. It's a reminder that even with a chronic illness like lupus, life can be full of adventure, beauty, and personal growth. It's about listening to your body, respecting its limits, and celebrating its resilience. And, as always, it's about finding joy in the journey, wherever it may lead. 

I've been raising awareness for lupus for the past 18 years.  I hope you find this a worthy cause to support!

Did you know?

• Lupus is a mysterious and misunderstood autoimmune disease. It strikes without warning, affects each person differently, and has no known causes or cure.
• Lupus symptoms can be severe and highly unpredictable and can damage any organ or tissue, from the skin or joints to the heart or kidneys.
• While lupus can strike anyone at any time, 90% of people living with lupus are women. Women of color are at especially high risk.