traveling with lupus.
I remember the day like it was yesterday. I was at a concert in Chicago with a group of friends, I was a freshman in high school. Two songs in...I fainted. A healthy, 15 year old girl should not faint at a concert unless it’s because she saw her heart throb on stage for the first time. Just a few days later, I remember losing feeling in my legs and hands. A few more days passed and I was covered in boils. Trips to the ER, and a couple of surgeries later, I was diagnosed with Methicillin-resistant Staphylococcus Aureus, MRSA for short. MRSA, put simply, is responsible for difficult-to-treat (due to drug resistance) recurring infections. Again, why would a seemingly healthy 15 year old be diagnosed with something like MRSA? The doctors were stumped and thought there was something else causing all of this.
After trips to national children’s hospitals, Northwestern University, UCLA, and finally Mayo Clinic, I was diagnosed with Lupus. The journey of finding answers and a diagnosis took over three years. I went through light treatments, 18 months of high steroidal treatments (major weight gain and crazy dreams - not fun!), surgeries, exploratory colonoscopies (gross) and endoscopies, so many biopsies I lost track, limiting diets (no tomatoes and no nickel, who has ever heard of such a diet?!), oral chemotherapy, anti-malaria medicine (crazy, right?!), disease modifying drugs, depression treatment, and more all while trying to balance high school, work, and later, college. My case was so rare that I signed away photos of my skin to be published in Northwestern University medical books as well as Mayo Clinic research publications. Lupus, my friends, is not fun and it should not be taken lightly.
What is Lupus you may ask? Lupus is complicated as it affects everyone differently. Lupus is an inflammatory autoimmune disease (your body is the victim and the hero...essentially your body fights itself). Lupus most commonly affects your skin, kidneys, joints, and blood. Treatments for Lupus include oral medication and in rare cases, blood transfusions and kidney transplants. Lupus can lie dormant a.k.a., you can be in remission from Lupus. Certain environments may make your Lupus flare up more than others. For me, it’s stress. There is still no known cause or cure for Lupus but Lupus is thought to be genetic. The disease affects many more women than it does men.
While fighting Lupus, I was also in nursing school. Unfortunately, due to my physical and mental health, I had to take a step back and stop nursing school. This was one of the most difficult decisions I’ve ever had to make. Nursing was something I was passionate about and actually, really good at. I struggled with this for a long time. Dropping out of school due to my health, really messed with my mental health along with physical health. Shortly after dropping out, I found myself in the hospital due to increased mental health concerns and I knew I had to make some changes.
Living with Lupus isn’t easy. One of the hardest parts about Lupus is that I don’t look sick! Unless of course, I am covered in sores but thankfully, those days are now few and far between. Lupus affects everyone differently, this is one of the reasons it can be very hard to diagnose. For me, I develop crazy looking rashes, lose feeling in my arms and feet (think constant tingling), and suffer from extreme fatigue. Not to mention a low immune system causing me to be prone to other illnesses.
Lupus attacks your kidneys. Fun fact, your adrenal glands live on top of your kidneys and produce your body’s natural cortisol (shout-out nursing school!!). My Lupus has attacked my adrenal glands so much so, my body doesn’t produce natural cortisol anymore. Insert endless cups of coffee and naps in my car during lunch break! I don’t look sick but man, somedays I feel so sick I can barely walk across the office to fill up my water cup. I often get the, “you don’t look sick,” comment but oh boy, little does that person know the daily fight that my body goes through.
About a year ago, I was at a check up with my rheumatologist. Unfortunately, my blood test results (how they monitor Lupus), came back pretty bad. My Lupus levels were high and my doctor told me that my results showed warning signs of Neonatal Lupus and Anti-Lipid Phosphorus syndrome. These are fancy words for, it’s going to be really hard to get pregnant and stay pregnant and if a tiny miracle happens, most likely, that miracle will also have Lupus. Talk about about a face palm kind of speed bump. Obviously this is not amazing news and both my husband and I have dealt with this in our own ways. But, I am choosing to believe that a single blood test cannot determine my future. I am believing in joy and in God’s plan for my life. Can I say it again? Lupus, sucks.
Living with lupus has not been easy but I have learned to cope and choose joy no matter my circumstance. I am proud to say I am no longer being treated in the form of a pill, but rather, I have changed my lifestyle.
Several doctors told me to move south of the Mason Dixon line (anyone remember this from 7th grade geography?! I had to do a Google search to refresh my memory). A big reason Logan and I moved to California was for the weather. Some Lupus patients get worse in the sun but I get better. The sun helps my sores go away and sometimes, the sores are the worst part! I have also chosen to eat a plant based, gluten-free diet. Yes, I cheat. I love donuts and sometimes, it’s hard to say no. But, it’s more hard to feel sick and break out in an inflammatory rash. Being mindful of what I am putting in my body has helped tremendously. If you have a Lamborghini, are you going to put unleaded gas in it? I don’t think so. You my friend, are better than a Lambo.
I still drink a lot of coffee, but I have limited myself to two cups a day. On top of my coffee addiction, I strive to drink my body weight in ounces of water every. day. Remember when I said I could barely walk across the office? Well now, I can walk to and from the bathroom all day long with no trouble!
The first few years after being diagnosed with Lupus, I didn’t take care of myself. I sunk into the depressed victim card. I wasn’t proud of who I was because I didn’t have the energy to be who I thought I was entitled to be. I have since learned that taking care of our bodies can drastically change your lifestyle, Lupus or not.
A few years back, I signed up to run a 5K. My Lupus was bad and I was in a pretty negative mental state. Guess what happened? I was so weak, I couldn’t even walk the 5K. My mom’s friend picked me up in her mini van and drove me close to the finish line so I could at least walk across the finish line. Guess what else happened? A few days later when the results came back, I won the category for women my age! Ooops! Sorry other runners! I totally cheated. Point being, I was so sick and so weak, I couldn’t even walk the entire course. Just last week, I ran for the first time since I attempted that race. I successfully ran four miles without stopping. Do you know what happens when you choose joy and take the time to take care of yourself? You finish the race with your head held high. Choosing joy in all circumstances, that’s a game changer.
By now you are probably thinking, why do you travel so much if you have so many health concerns? How are you able to hike if you can’t walk across the office? I can’t say it enough, traveling brings me joy. And joy trumps sickness.
Some tips for traveling with Lupus, or any other auto-immune disease:
Don’t lose sleep! Can you sleep on planes? If so, fly through the night! If you struggle sleeping, avoid red-eyes. Don’t sacrifice sleep for adventure. If you do, you won’t fully enjoy your experience.
Pack a trusty water bottle with you! My Hydroflask goes everywhere with me!
Always pack snacks, whether driving or flying (you can spare the extra pound or two in your suitcase!). Healthy travel snacks will be the fuel that you need, don’t sacrifice your health for fast food.
Exercise! Travel is no excuse to stop. Exercise doesn’t have to take place at a gym, go for a walk, hike, or swim!
Plan the trip in detail. I know not everyone is a planner but I have found that if I know what my schedule will be while traveling, I will know how to save my energy. For example, if Monday is a pool day, and Tuesday we are going to Disneyworld, and Wednesday a hike, I will probably want to relax all day Monday and go to bed early on Tuesday. Sometimes, traveling with Lupus means skipping out on some things so you can fully enjoy others. Trust me, it’s worth it. No one wants to travel with a zombie, spend your energy wisely.
Do the hard things first! For example, when we go to National Parks, we try to do the hard hikes first. On Monday, we will hike to the top of Yosemite Falls and on Tuesday, we will do an easier hike. Point being, I can use my energy on Monday and enjoy my hike, rather than doing a short hike Monday and stressing about Tuesday and whether or not, I will have enough energy to do the hard hike. Make sense?
Stress is a huge contributor to my flare ups. I try to plan my trip well in advance as well as predict the stressful moments of the trip. Are we driving through LA during rush hour? Are we traveling to Iceland? Have I done my research on the currency exchange process? Figure out what will be stressful and do your best to prepare for and eliminate those moments. Less stress = less flare-ups.
I love big cities! BUT, I have learned that clean air, helps me feel best. I encourage you to plan one excursion during every trip that will allow you to breath clean air. Are you traveling to Chicago? Go to the beach and breath the lake air or go for a walk in one of the many nature preserves. Traveling to LA? Drive to Orange County for a day and breath the clean, ocean air. For me, the mountains help but I know for others, altitude sickness may occur. Choose wisely but allow yourself to breath freely.
Spend your energy in a positive way. Traveling can get stressful and busy. If you are doing this for leisure rather than work, make sure it’s something you actually want to do! It’s okay to say no to trips that may sound stressful or not up your alley. Will going to Vegas fill up your joy tank? Yes? Then go! But if it will just make you hungover, regretful, and tired, maybe it’s not the best trip to take. Spending energy in a positive way rather than spending energy stressing and worrying, will allow you to sleep better and feel better during the day.
My best advice? Don’t be a victim of Lupus. Don’t let Lupus take away your drive for adventure and your passion for travel. Choose your trips wisely but boldly. Step out of your comfort zone but have a plan. Be aware of your limitations but do not be stuck. Dream big and don’t just dream, buy the plane ticket.
Why do I tell you this? Do I want pity? Do I play victim to the gift of life? No, not at all. But I used too. I have wanted to write about my journey with Lupus for a long time but I knew it was not responsible of me to share my story until I was through the dark and had fully processed what my new normal would be. And on a side note, quarantine life and COVID-19, is NOT a new normal, rather, it’s a season of life that will make us grateful for NORMAL life and everyday things that we have taken for granted. Living with an autoimmune disease, now that’s a new normal. Okay, rant over.
If you are still in the exploratory stage, or if doctors simply can’t help you, I understand. It’s not easy. I still have hard days. I am not perfect and have negative emotions and really struggle. On occasion, I still take naps in my car (shout out to quarantine for letting me take naps in bed instead!). My Lupus is not cured and I don’t know if it ever will be. I’m pretty sure, this will be something I live with the rest of my life. Hard days come but the good days last longer. For me, travel helps me not think about the pain. It’s almost a way for me to tell Lupus to suck it. Lupus can’t control what I do or where I go. I choose joy and I choose travel. Choose the right perspective and then go choose your next adventure. I’ll be the first to shout it from the rooftops, Lupus sucks. But you my friend, do not.