I decided this week it was time that I shared something more personal. Recently my posts have centered on the theme of warrior, conquering, overcoming, strength etc etc etc….
So I sit here, pen in hand, heart overflowing with a longing to share the more intimate details of me, wounds and all. I want to bear my scars and show you how my strength has been as far from me as you have felt it. That words, are easy to speak but fail so many times in action. Like you, I too have been on this winding journey of faith. Sometimes, or let’s be honest, many times I feel weary, burdened, and unsure. I have faced my fair share of storms that have threatened to capsize my very fragile boat of hope.
Three years ago, Andre and I set out on a journey of a lifetime. The journey to beat all journeys, the journey that would take us to the shores of broken souls. A place where we can serve God’s people right on the beach, right in the water, a place where we can reach the people who don’t get to church and who don’t get to hear the beautiful name of Jesus in their situation. That journey took a different turn. A year after we started our journey, I found out I had Lupus. Andre and I spent everything we had on tests, treatment, and more treatment. I found out what flare-ups meant, and I found out I was suddenly allergic to the sun. A beautiful start turned into a war zone.
Being sick since the age of 20 nothing prepared me for the repercussions of lupus. Lupus is like a storm that rages within your body, not seen by the naked eye people in your circle struggle to understand its danger. Let me guide you through its intricate brushstrokes, revealing both its shadows and its glimmers of light.
- What Is Lupus?
- Lupus is an autoimmune disease. Imagine your immune system as a vigilant guardian, protecting you from invaders. But in lupus, this guardian turns rogue, mistaking your own tissues and organs for enemies.
- Instead of merely battling foreign foes, it launches an assault on your joints, skin, heart, blood vessels, brain, kidneys, bones, and lungs.
- There are different forms of lupus, each with its unique triggers and symptoms. Yet, they all share this common thread: an orchestra of immune cells playing discordant notes.
- Your Skin: Integumentary System
- Skin—our outermost layer, our protective shield. In lupus, it becomes a storyteller, revealing tales of struggle.
- Butterfly rash: A crimson brushstroke across your face, like a delicate butterfly alighting on your cheeks. It whispers, “I am here.”
- Sun sensitivity: Your skin craves shade, recoiling from sunlight’s touch. Ring-shaped marks may bloom, red and scaly, as if the sun itself etched them.
- Ulcers and sores: These tender wounds, like secret messages, form in your mouth, nose, scalp, or elsewhere. They speak of inflammation, of battles fought within.
- The Hidden Glands: Endocrine System
- Deep within, the pancreas orchestrates digestion and sugar regulation. But in lupus, it stumbles, its harmony disrupted.
- Pancreatitis: Inflammation engulfs this vital gland. Medications wielded against lupus may also play a part.
- The dance of hormones falters, and you teeter on the edge—toward infection, digestive woes, or even diabetes.
- The Rivers of Life: Circulatory System
- Your heart and blood vessels bear the weight of lupus. They know its secrets.
- Systemic lupus erythematosus (SLE)—a whispered risk of heart disease.
- Clots may form, blocking life’s flow. A stroke looms, a burst vessel threatens. Headaches, fibromyalgia, and cognitive fog join the symphony.
- The Unseen Struggle: Living with Lupus
- Each day, you navigate this labyrinth. Fatigue tugs at your sleeves, pain hums in your bones, and uncertainty weaves its threads.
- Yet, you persist. You adapt. You find beauty in resilience.
- Life expectancy: It varies, some sail through storms, while others seek refuge in quiet harbors.
Your lupus could be divorce, cancer, rape or death or anything that brings you pain… It doesn’t matter when it hits or where you are when it does. It hurts just the same, it cripples you and leaves you in the fetal position not knowing what just happened. Your marriage, your finances, your children, and your quality of life are impacted. All of a sudden, the hurt in your chest is so painful you can’t breathe, your tears burn like acid and the more you try not to cry the more the tears flow like rivers.
I can honestly tell you that were it not for God I would not make it. I would not manage to get out of bed every day. My skin bleeds from scratching, my eyelids have burnt crusts on them from UV light that shines through the parts of my windows Andre has not been able to close. 3 or 4 hours on the computer has me crying for hours from pain that no medication can take away. I clutch my chest because it feels like my heart wants to burst, and my brain wants to explode. A day out of the boat leaves me in a flare-up that can put me in bed for weeks. Praying for people sometimes happens through tears and agonizing pain. I fight the battle in my mind every day, that still small voice that says to give up…
But I can’t give up, because nothing I could ever face can compare to what Jesus did for me, the sacrifice He made so that I may live in Him. That I may be set free, that I may be a new creation, loved and forgiven. Jesus said that this world is corrupt, and life will be hard, but a time will come when He returns to take us home. That day, I will have no pain. Heartbreak will be over, we will walk with the lions and sleep in meadows of green grass and beautiful flowers.
I have realized in my life that our bodies can be weak, and we can suffer physical ailments, heartache, and loss. But when our spirits are in the word of God and our minds are focused on God we are able to rise above every situation because our victory is not ours. It belongs to God.
Fear not, for you are not alone.
Imagine, if you will, a vast ocean stretching out before you. Its waves rise and fall, sometimes gentle, sometimes fierce. You stand on the shore, toes sinking into the cool sand, eyes fixed on the horizon. And there, in the midst of it all, stands your Father—the King of Kings, the Creator of galaxies, the One who breathed life into your very being.
Daughter, do not fear.
He knows your heartaches, your dreams, your deepest longings. He sees the tears you shed when no one else is watching. He hears your whispered prayers in the stillness of the night. And oh, how He loves you! His love is not a distant, abstract concept—it’s a warm embrace, a shelter from life’s tempests, a lighthouse guiding you home.
Rest, my dear one.
The world may clamor for your attention, demanding your energy, your time, and your very soul. But here, in this sacred space, let go of the noise. Breathe. Inhale grace, exhale worry. Lay your burdens at His feet. He invites you to rest—not just physically, but soul-deep rest. The kind that seeps into your bones, whispers peace to your restless spirit, and says, “You are enough.”
Lean into His promises.
Remember the ancient words penned by the psalmist: “Why are you cast down, O my soul, and why are you in turmoil within me? Hope in God; for I shall again praise Him, my salvation and my God” (Psalm 42:5). These words echo across time, reaching into your present. They remind you that hope is not a fleeting emotion; it’s an anchor—a lifeline that tethers you to eternity.
The Anchor of Hope.
When life’s storms threaten to engulf you, fix your gaze on the One who calms the winds and stills the waves. His promises are unshakable, His love unwavering. Even when circumstances scream otherwise, choose hope. Choose trust. Choose to believe that He who began a good work in you will carry it to completion (Philippians 1:6).
And so, my sister, rest.
Rest in the assurance that you are cherished, seen, and held. Rest in the knowledge that your father’s arms are strong enough to carry your burdens, gentle enough to wipe away your tears. Rest in the truth that you are not alone—He is right here, beside you, whispering, “Fear not, my precious one.”
For hope is the anchor of our souls.
And as you navigate life’s tides, remember this: You are not adrift; you are anchored. Anchored in hope. Anchored in love. Anchored in the One who calls you His own.
With love and grace,
