Preparing For Summer On The Road With A Lupus Diagnosis

It should come as no surprise that since my “official” diagnosis a few weeks ago, I’ve read two books, countless articles, and listened to several podcasts about lupus. After tons of research I’m finally at peace with the diagnosis and believe it is accurate. (I’m actually surprised my first doctor didn’t diagnose me earlier.) When I consider all my symptoms in the context of a lupus diagnosis, it all seems so obvious. 

Now that the mystery has been solved, I’ve shifted my focus to preventing future flare ups. From everything I’ve learned so far it seems the consensus is that it is essential to keep stress to a minimum, get lots of sleep, eat well and consistently exercise. So of course it’s only fitting that I’m hitting the road with my family for seven weeks to drive around the country to play over 30 metal shows!

Touring involves hours of driving, late nights, sleeping in parking lots, less access to fresh, healthy food (thanks to a tiny refrigerator in the RV), figuring things out (like where we are sleeping) on the fly, and difficulty finding safe places to run. On the surface it certainly looks like touring would be a terrible idea. But why settle for that conclusion? 

To be perfectly honest, I’m really looking forward to all of the above. Obviously staying healthy has to be a priority. It might take more planning, preparation and patience, but I’ve been busy figuring out how to make it work. After all I toured last summer with the same issues and managed to keep the pericarditis under control. A diagnosis doesn’t change anything. But it points me in the right direction for prevention. So I’m actually better off now than last tour. 

For the last two weeks, I’ve been making lists and getting things ready, not just for myself, but for the whole crew. It’s been a challenge trying to figure out everything we’ll need for seven weeks, while taking care of the loose ends at home with appointments, prescriptions, bills, campground reservations, as well as everyday responsibilities (plus a weekend trip to a festival 11 hours away). The logistics of it all can be overwhelming but I’m determined to make it all work, and thankfully there are lots of things I can do on the road to help ensure a successful adventure.

The most stressful part of the journey is right before we actually leave. It’s the planning and preparation that drives me crazy. On the road I feel at home. The concept of living day to day, one day at a time is essential. So even though there’s a lot more to be stressed out about, for whatever reason I handle it much better when we travel.

During our campground stays I’m going to take advantage of having a place to run. Viewing each new place we’re in as an invitation to explore is extremely motivating. Over the past few years I’ve really learned to appreciate getting to know new places on foot. I try to remember that it’s a privilege for me to be able to witness God’s handiwork in so many incredible places.

I also bought heavy resistance bands, so I have no excuse not to keep up strength training. We designated a compartment just for workout equipment like bands, yoga mats, weights, foam rollers, basketballs, frisbees, etc. Days off are for fresh air, fitness, and relaxation.

Fresh food can be tricky because our refrigerator is so small. The key is stocking bags of frozen fruit and lots of sliced veggies in Ziploc bags to snack on. That’s one good thing about sleeping in a Walmart parking lot — being able to stock up frequently. Thankfully, our Nutribullet doesn’t take up much room so I hope to make a smoothie whenever possible as well.

Sleep? Who knows. I never sleep well anyway.

One concern I have is the sun. Too much time in the sun typically gives me a headache, and the heat makes me nauseous. Knowing that the sun can trigger a flare and a flare could trigger a host of symptoms,  means I’m going to have to be diligent. We have several days off scheduled at beaches, but I came prepared with an umbrella and that’s where I’m going to have to remain.

Having a grateful heart is going to be key. As a family, we are viewing the tour as a mission trip to connect with people and offer encouragement and hope. We vowed to do our best to keep our hearts and minds focused on others and I firmly believe that when we do that, things tend to work out.

This whole tour is extra special for me and Paul because not only do we get to spend seven weeks with our grown kids, we get to see them living their dream every night as well. Lupus doesn’t scare me. God‘s got my back. I believe He has big plans for us this summer. I know I’m where I’m supposed to be and I trust it will all work out.

– Joyce Meyer — “One of the most powerful things you can do when you’re having trouble is to be a blessing to somebody else.”