Road Tripping with Lupus

Ines Martins, PhD avatar

by Ines Martins, PhD |

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Lupus Road Trip

My Mountain, My Lupus column

It all started 2 months ago …

Lupus Sabbatical

5,000 mile road trip 

… before my epic road trip and literally while I was sitting at my doctor’s office. Not only was my body achy but just like every other day, I felt like I had been hit by a truck. All things considered,  I wasn’t doing too bad. When you have lupus, you get used to the daily myriad of painful symptoms. And so just like with every other visit, I sat down for blood work and testing and medication refills …

On the whole, I’ve learned to be careful how I live my life. By the same token, I am sure I could live and eat healthier but … It gets so … damn … old. Being told you can’t do this or you can’t do that … Ordinarily, I might just roll over and go back to bed. I mean, after all, I have Lupus and that means my life is already pretty much over, right? Three months ago, I might have said yes to that question. But two months ago, I had a plan.

 

I realized I had lost my passion and zest for life. Lupus had wounded me. It was time to get out of my shell and find what I had lost.

My Dr. was mumbling something about my recent weight loss (I have massive stomach issues that make eating damn near impossible) when I decided to drop my Bridge-Bomb. I casually mentioned that I was interested in going on a pilgrimage, a road trip, some kind of a sabbatical. No reaction. “In fact, one day I see myself walking the Camino de Santiago in Europe.” I felt the intake of his breath rather than heard it. It was almost comical watching him struggle with the right words that were equal part optimism and equal part get-the-f*-out-of-here.

“Bridge, the Camino de Santiago is not for someone with Lupus. You can barely walk!” he exclaimed. “A road trip, by all means. Head up to Tahoe for the day. Hiking over a thousand miles though? … I just don’t think its a good idea.” Now don’t get me wrong, I totally get what he’s saying. But I needed to get out of my comfort zone. Maybe two weeks hiking Camino de Santiago was a bit of a stretch. But what about a two-week road trip? I could have a blow up mattress in the car and keep myself comfortable by not overdoing it. If I drove a few hours, then that’s how far I got. I enlisted the help of a friend who loved road trips and driving, and it was time to take off.

The Road Trip Begins.

Road Trip Begins

Packing for the Road Trip

We loaded the truck up with food, camping supplies, a blow up mattress, five pillows, eight blankets, clothes for any weather, my two dogs, my Best Friend Rich, and headed on a 5,000-mile road trip to Rich Hill, MO. Home of the Fourth of July.  It’s a place that has a main street and a creek with a bike trail for the kids. In fact, Fourth of July is the biggest affair of the year for miles around.

The Rich Hill parade has horses and tractors and a local marching band composed of churchgoers. Local pageantry boasts its winners in candy throwing convertibles and, yes, I am actually related to a lot of people in the parade. Where the volunteer firefighters throw out Popsicles and hot dogs. Sitting back under the trees … watching the potentially elected commissioners and sheriffs and treasurers handing out pamphlets, kissing babies, and giving fans out to the old ladies. Old ladies like my grandma and her sisters and my aunts and cousins and, one day ,our children. All in all, it is hands down my favorite holiday.

Lupus Road Trip

#PushThroughLupus

Over the next two weeks we traveled over 5,ooo miles. If Rich wanted to see the Grand Canyon, then dammit, we were seeing the Grand Canyon. As a matter of fact, we created a three-page scavenger hunt that included such items as:

  • See a Worlds Largest Something (x)
  • See a wedding ( )
  • See a parade (x)
  • Dance in the rain (x)

Our motto the entire trip was “We can do this. We can push through. I can push through Lupus.” As a child we moved quite often, but the one constant was that little town in Missouri where most of our family lived. As I got older it simply came to represent home. They say home is where the heart is, and I have to agree. When two months ago I felt like I couldn’t leave my own backyard, my home now is everywhere my feet have touched.

Seeing my footprints in a hot sandy California desert. Floating down a not-so-lazy river in a rapidly deflating inner tube in Colorado and laughing the whole damn way. My ribs and lungs hurting for days afterward. The glint of neon lights as we drove through Las Vegas as quickly as possible in an effort to escape the blistering sun. The purple flower-dotted mountains of Utah that made me scream out the window every single word to “God Bless America,” twice. The miles and miles of pink and teal canyons so similar yet so far apart in Wyoming and Arizona. Throughout it all I realized, I hadn’t lost my passion or my love of life after all … I had simply  forgotten what the earth itself had given to me. Every flower, every road, every moment … was a gift of home, of strength and, equally, of love from the earth.

Now, we didn’t get to cross off everything from our list, but we crossed off the ones that mattered most.

1.) Go on a Road Trip (x)

2.) Learn to love life with Lupus (x)

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