Photo by Stephanie Susie Photography
Misunderstood. Isolation. Unpredictable. Imprisonment. Exhaustion. Debilitating.
This is how my life felt from 2000–2006. I was sick. I was in pain. I wanted answers but no one had them. I was continually told the pain in my arms and joints were from too much tumbling and cheerleading. I never agreed. Through high school and college I had been misdiagnosed, and it wasn’t until 2006 when I found out I had mono. While doing bloodwork with mono, they found some levels to be very off. I still remember the doctor telling me to go home and pray that it was MS and not lupus. I was shocked that he would say something like that, but also shocked that he would instill that fear in me. Once asked if I had any history of lupus in our family, it all started to make sense. Yes. We have a history of lupus throughout my father’s side of the family. Finally some answers that I wanted.
After all tests came back positive, they confirmed I had active Systemic Lupus Erythematosus. This affects many internal organs in the body. SLE most often harms the heart, joints, skin, lungs, blood vessels, liver, kidneys, and nervous system. You would think I would have been devastated at the news, but like many others I was just thankful to finally have answers. Before this I always felt like people thought I was crazy or a hypochondriac—when in fact, I was too busy hiding and playing down my symptoms because I kept thinking it couldn’t really be happening to me. I looked fine on the outside, but it felt like my body was killing me from the inside out.
After trying many medications of methotrexate, imuran, plaquenil, benlysta, steroids, multiple pain meds, and every holistic method—vegan, vegetarian, paleo—you can try, I am still trying to understand the mysteries of lupus. We are still working to find a combination of the drugs that will hopefully slow down the disease and manage the chronic daily pain. Currently I go every four weeks to get an infusion, which I get through a power port placed in my chest, and I do chemo weekly. It has saved so much time since my veins finally quit participating. Each day I take a mixture of pills and vitamins along with a gluten-free diet. It is time-consuming and very humbling, but I am still alive and I still have a chance to show my family and friends that I won’t give up this fight.
Because of lupus and its many complications, I have experienced a corneal transplant, a hysterectomy, kidney infections, pleurisy, major brain fog, breathing problems, heart issues, extremely dry eyes-skin-mouth, loss of hair because of the disease and meds, rashes on my face and arms, and sensitivity to sunlight, along with many other fun adventures. I also experience complications of other autoimmune disorders that like to attach themselves to you when you have lupus. I have been diagnosed with several—such as Sjogren’s, celiac disease, rheumatoid arthritis (symptoms/not deterioration), Raynaud’s, anemia, vitamin B and D deficient, alopecia, along with chronic fatigue. With having so many things go wrong at any given time, I have learned what it means to be patient, how to simplify my life, how to build my faith, and how to appreciate the time that is given to me. I know I can only handle a certain amount of tasks each day and I am finally learning the limits of what that means. I am so thankful to have family and friends that understand this now and encourage me throughout this challenge.
I am hoping to share with others the beauty and the positive things this disease has taught me and many others. Lupus is devastating, but it has also taught me not to take things for granted—to enjoy the little things each day and to be thankful for the parts of my body that are working that particular day. I love that my son has learned about compassion and what it means to pray for those when they are sick. I love that I am able to share my peace with others and where my inner strength comes from. I am trying to look at lupus as an opportunity. It is an opportunity for me to share my story in a positive light rather than a negative one. I am a mother, a wife, and an artist. The Lord has blessed me with the ability to share my art by photographing weddings and senior portraits (Esther Bloom Photography). I am so thankful that I am able to have a job with hours I create and am able to provide for my family.
My aunt shared this with me recently before passing:
My Lord knows the way through the wilderness,
All I have to do is follow, strength for today is mine always
And all that I need for tomorrow.
My Lord knows the way through the wilderness
All I have to do is follow. (by Sidney E. Cox)
I know that no matter what happens in this journey with lupus, I will not be alone. God’s character has proved time and time again that He is in control. All I have to do is trust in Him. I am thankful for these experiences because through them I have learned what it means to trust in Him. I have learned how blessed I truly am. You can have a family, you can have a career, and you can have a life which is pleasing to the Lord. It may not be anything like you once planned, but it is still beautiful—because He has made EVERYTHING beautiful in His time.
I have made you and I will carry you; I will sustain you and I will rescue you. Isaiah 46:4
A Million God Stories is a Christ-centered ministry which offers a platform for Christians from all streams of Christian faith to give praise for how God has worked in their lives. Christ heals in infinitely creative ways and we acknowledge that His way of helping may differ from person to person.
