The nature of lupus is unpredictable. I'm so SO thankful at the moment that I am in remission...but I am still terrified that a flare could strike up at any minute. It happened to me in 2013: I was not taking prednisone at all, and my labs were going pretty good. Then after my Europe trip in July 2013, I got some lab work done, and BAM, the protein in my kidney went up again, to the point where I needed a biopsy and to stay at the hospital overnight (to be fair, I wasn't taking my meds properly the way I do now). My mom was in the Philippines at the time when I had my biopsy: my grandma had a stroke, so my mom had to rush over there and booked the flight within 3 days. I was in the first semester of my graphic design program at university. And 2013 was the year my dad passed away. So there, you get an idea how much of a whirlwind 2013 was (in good and bad ways).
I've had moments of wondering where God was throughout all of it. I doubted. I would wonder, why did He put me in this situation? Why did my dad have to go? Why do I have to be put on this prednisone crap? Why do I have to get seizures in the middle of university, therefore not driving, and therefore not having transportation to get my dream job or internship? (my brother in law was already dropping me off and picking me up on his way to work, and thankfully my school and his work are on the same freeway). Why do my sisters and niece have to suffer? (My older sister, Trixie, has severe lupus, pulmonary hypertension, and scleroderma; my younger sister Sarah and niece Abigail have autism and intellectual disability). I wondered why I had to be taken to church with all of the hyper rock music and and bright-colored lights that were supposed to create a joyful, Hillsong-esque vibe when deep inside I wasn't feeling okay at all, and I had to go with the flow with feeling like I had to be joyful. I would Google on my phone will God heal me?, will God help me through college?, or Bible verses about healing.
Even though I have doubted my faith, I know deep down (even though I certainly didn't feel like it at the time) that God hasn't let me down or abandoned me. Even when I felt so desperate and depressed about my situation. I'm not the preaching type, and evangelicalism certainly isn't my spiritual gift. But I do know that He has helped me through the refiner's fire, and He can help you too. Of course, life isn't easy and the bad times and good are always cyclical; it's not linear where you struggle for a bit, then you get better/stronger and period. Life is a whole lot more complicated than that.
So, how do I cope spiritually and emotionally while getting bitten by the wolf that is lupus?
1. Pray regularly.
After my mom and sister's trip to the Philippines in 2013, they started praying during meals. As a Christian family, we never really did that except for Thanksgiving, Christmas, Easter and for safekeeping before big trips. I then realized when I went to the Philippines in 2014 that it was my preacher uncle who would always pray before meals, and he prayed over my anxiety before going home (after all, I did have a seizure when I was there). I was taken aback at first, honestly. But it's a powerful weapon against what evil is thrown at you. My sister, dad, and I were showered with prayer among our family and friends during our hospital stays, flareups, and lab tests. When you pray, even (or especially) if you don't feel like it, you are shaking mountains with your faith. You don't have to say any eloquent words either, it's just talking to God normally. If you're Episcopalian, you can also follow the Book of Common Prayer which has beautiful psalms and more structured and liturgical prayers, where you read a particular Bible story on a particular day. One app I love is Forward Day by Day, which is a daily devotional app from the Episcopal Church. It models after the Book of Common Prayer: it has a daily meditation with a verse and reflections (shown below), daily prayer for the morning and evening, and a specific Bible story that corresponds to the day you're supposed to read it according to the Book of Common Prayer.
2. Find a church community.
I honestly was struggling with this because I had a bad experience at my old church (I've gone to mostly Assemblies of God churches) because of me dating Cecilio...they did not approve of him. He wasn't a Christian at the time, and I felt so horrible. He is a Christian, but not in the sense where he is outwardly preaching or posting Bible verses on Facebook. He also grew up in a devout Catholic family, which is totally antithesis to my evangelical background. It did cause some tension in our relationship at first, especially because I rediscovered my love for God after my last ex broke up with me. So, we are meeting in the middle by regularly going to an Episcopal church: Trinity Cathedral in Sacramento, CA to be exact. That is the church where we will be getting married in! The Episcopal/Anglican Church is known as the "middle-way" between Catholic and Protestant: It has the Catholic rituals (singing with a hymn book rather than rockstar worship music, citing the Nicene and Apostle Creeds, practicing the Eucharist) with Protestant theology. We love it because they are so rich in their faith but are also extremely intellectual and educational, and they love and care for the ones that those in evangelical churches look down upon (women, the LGBT community, and people of different faiths), eating with them the way Jesus ate with the ones who were marginalized by the religious society in His day.
3. Find and remember verses about healing and comforting.
I had a skin cancer scare in 2007 (the year I graduated high school): I had an mole near my left breast that was large, irregularly shaped, raised, and had different colors, which were all of the classic signs of melanoma. I've had it for years, but it hit me that I needed to do something about it. I was terrified though of the thought of having cancer and my life being cut short. I wrote a letter to my parents because I was scared to tell them in person, and they agreed to take me to the doctor to have it removed. Before we left the house for the incision, my dad quietly rehearsed Psalm 23 to me. The incision was quick and painless (because I got numbed beforehand) and I was left with a stitch that had to stay on for a few weeks because I had to go back and have it removed. I was so thankful when I got a call from the doctor and she said that the mole was benign.
Psalm 23 is the go-to for a source of strength, positivity and comfort through the tough times. But other verses I like are:
"Do not fear, for I am with you, do not be afraid, for I am your God; I will strengthen you, I will help you, I will uphold you with my victorious right hand." (Isiah 41:10 NRSV)
"Do not worry about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus." (Philippians 4:6–7 NRSV)
"but he said to me, 'My grace is sufficient for you, for power is made perfect in weakness.' So, I will boast all the more gladly of my weaknesses, so that the power of Christ may dwell in me." (2 Corinthians 12:9)
4. Practice gratitude, always.
I do have a tendency to be cynical and pessimistic (though I really try to put positive vibes on this blog), but I am really stopping myself. I can't help how I feel at times when I compare myself to others and wonder why I don't have this and other people my age do, or why they have accomplished more than I ever have. I have God, my family, friends, a wonderful fiancé I get to spend my life with, 3 adorable dogs, a means to buy all this makeup (haha), awesome travel experiences, and a pretty kickass job right now (though it's seasonal, I am really really happy right now). I try to put things in perspective too: Though I didn't get the internship I wanted at the design studio I interviewed with, I am thankful that they considered my portfolio good enough for a 2nd interview (out of the 12 people who applied, I was one of 4 who got that 2nd interview!). And if I did get the internship, I wouldn't have gotten my dogs, because I wouldn't have had the time to take care of them on top of finishing school. And my dogs have helped me emotionally, and my mom believes that they are one of the main factors in me healing and being a more positive person. There have been numerous studies regarding pets and how they reduce blood pressure, cholesterol and depression!
5. Immerse in nature.
I am so lucky to be living in California where nature abounds, and we have different terrain: the majestic mountains of Lake Tahoe, the crashing waves by the coasts, the below-elevation desert that is Death Valley, and gorgeous species of trees. I also live in Sacramento, which nestles between San Francisco and Tahoe, so of course we have gorgeous scenery! Cecilio and I always say we want to go hiking, but we never get around to it. (hint hint) There's just something about looking up at the mountains that makes you in awe of the universe, that there is something bigger than yourself...and that you are but a speck among hundreds of thousands of galaxies. Being immersed in nature makes you forget about your mundane day-to-day problems for a while too. Cecilio's sister recently moved to Tahoe, so we have been visiting a lot and have been taking in the mountains and the trees.
6. Take care of yourself.
My mom always tells me that health is wealth: You could have all of the riches in the world, but if your health suffers, it means nothing. I always need to recharge my batteries, especially as an introvert. One app that has helped me is called Health Storylines, which is created by Self Care Catalysts. They are amazing in which they try to educate and advocate for patients actively becoming more involved with their medical condition, keep patients at the core of their values, and promoting the fact that managing your disease permeates in all aspects of your life, not just in the hospital or clinic. The Health Storylines app helps you manage your disease by tracking your appointments with a calendar, punching in reminders to take your medications, tracking seizures (if you have epilepsy), and tracking your exercise routine. But more relevant to this post is that they have sections called "Healthy Doses" where you are given different sections: Gratitude, Optimism, Love, Funny, and Mindfulness. For each section you press, you get an encouraging quote or a lovely photo of nature that warms your heart. And even though I talk about my faith in this post, it does not mean I limit myself to Bible verses or Christian quotes!