How I Survived My First Summer With Lupus

For as long as I can remember, I’ve always worshiped the sun. Growing up on a lake, I spent endless hours every summer swimming, sailing, running, and challenging my friends to see who could get the darkest tan by summer’s end. I didn’t think twice about baking in the sun all day, often soliciting a competitive edge from a bottle of baby oil I’d slather all over my body. So when I started researching how to prevent lupus flares (because my doctor told me absolutely nothing) and found “avoid sun exposure“ on every list, I was worried about how I’d fare all summer on the road, in the south, and at the beach.

Our plans had been solidified well before I received a lupus diagnosis, and looking forward to our family adventure was a major motivation for me to keep pressing on all winter. There was no way lupus was going to stop me! 

I knew that the key to preventing flares would be healthy eating, keeping active, and limiting my exposure to the sun and heat. Obviously, I would need to compromise at times and pay closer attention to my daily routine, but I was definitely up for the challenge.

A month prior to leaving I had discontinued Plaquenil because my rheumatologist told me my tests were fine, and I had nothing rheumatological going on (but then proceeded to diagnose me with Lupus without informing me- read previous blogs). Knowing I’d be far from home for seven weeks though, I figured it would be prudent to continue the med in order to be extra cautious. So throughout the summer, I remained on medication just in case. I didn’t know whether the med actually helped, but I wasn’t going to risk it while I was gone.

For the most part I tried to eat healthy, although by the end of seven weeks I was definitely craving giant, fresh salads and veggies. We were diligent about buying as many bagged salads and veggies from Walmart that would fit in our tiny fridge, and that was a step in the right direction. But nothing beats a freshly made salad! Several times a week we’d build wraps consisting of veggies and hummus, and made an occasional stir fry with frozen vegetables.

I tried to limit my intake of chips and Tofurkey and cheese sandwiches, but I ended up defaulting to those pretty often, especially toward the end when we were tired and moving constantly from venue to venue. The more tired we got, the more convenience foods we ate which of course are not the healthiest.

Our Nutribullet definitely came in handy and got a workout! My kids love to make smoothie bowls with granola, so at least 4 to 5 times a week we all took turns blending frozen fruit, almond milk, and protein powder for breakfast — especially delicious after a hot run. It was a great way to start the day, especially when it was well over 100°. Adding granola or cereal as a topping really took the taste over the top.

There were definitely some challenges when it came to remaining active. In the beginning we had more campground stays, so getting 20 to 30 weekly miles in wasn’t much of an issue. The oppressive heat of the south really put a cramp in my style though. I tried to run, but it took too much out of me and triggered aches and pains and the lingering feeling that my insides were on fire so I opted to forgo the runs when I couldn’t find shade or the temperature was over 85. I finally accepted the fact that it is much wiser to take precautions so that I could remain in the game for the long-haul, instead of worrying about racking up the miles and running every single day.

We bought a set of heavy resistance bands that got lots of use. Even when it was super hot, as long as we were at a campground with shade near our site, I was able to do resistance exercises to keep up the strength I had built beforehand.

We also made it a point to take lots of walks, especially at night in our campgrounds. Having the dog really made that easy. Even though we had lots of long hours on the road several times a week (which stiffened my joints and made my muscles ache) we were still able to move our bodies a lot thanks to walks to the showers and bathrooms (sometimes annoyingly far away from our site) plenty of dog walks, and killing time before each show when we explored the town around each venue. Staying in motion definitely helped my joints feel better.

When we had the opportunity to go to the pool or a beach I wore a big hat and sun shirt (thanks to my family having them shipped to a campground for my birthday), and parked myself under an umbrella as much as possible. I’m sure I was out in the sun more than I should’ve been, but being a summer person who lives for the outdoors made it difficult to completely change. I still swam and went in the ocean but wore sunglasses and swim shirts. I found that keeping my body cool was a bigger factor than staying out of the sun completely. I still have a lot to learn though.

All in all I’d say I handled this shift pretty successfully. There were times when, if I spent too much time thinking about it, the lupus diagnosis truly bummed me out. But truthfully, it never lasted long because I realized how lucky I was to be able to do all of these things. Sure, I had to be more thoughtful about my day and I had to make compromises. But with research and planning I was able to live on the road and tour the country with my family while going to metal shows several nights a week and I didn’t really miss a beat.

The key for me was to focus on everything I COULD do, and find ways to make it happen. I tried my best not to complain or focus on any discomfort I was experiencing. What’s the point in dwelling on it? And if something just wasn’t in the cards on any given day due to location, heat, or any other factor, I learned to remind myself that the circumstances would eventually change, so if I wanted to feel good when that happened and not be completely sidelined, I had to be OK with taking a break or changing my routine. I even learned to appreciate those rest days and not feel consumed with guilt. That took time though!

Of course I’m still learning what is helpful and what my triggers are. But I’m encouraged because I also know that having a lupus diagnosis doesn’t mean my life is drastically different. When I find myself annoyed or frustrated I try to remind myself that there are lots of things I can do to avoid a flare and if one happens then there are still many things I can do to make it better. The key is taking each day and each instance one at a time and realizing this is a learning process. I’m definitely up for the challenge!