My Lupus Story

The Beginning

It was our second summer in East Texas.  It didn’t take us long to fall in love with the lake life. I remember sitting at the front of the boat watching the kids get tossed around on the tube thinking to myself, I could do this. Though I longed to be back home at cook-outs with family and watching fireworks over the Ohio River, we were making new memories on that long Fourth of July weekend.

I tried to tough it out but left that night before the fireworks began. Me and the dog sacked out on the sectional while the rest of the family stayed back and lit up the sky. The next morning, I awoke and knew that this was not your ordinary, flu-like illness. Just two more days, I thought. Monday, I’m calling the doctor.

Because of my family and medical history, I was quickly referred to a rheumatologist.  I tested positive for the active parvo b19 virus, but something else was going on. Long after the virus should have been over, symptoms continued, and other problems began to surface.

Over a year of doctor visits, and what seemed like an endless number of blood test, I received a diagnosis.

Lupus.

Since that time, I’ve grieved, and God has been faithful through it all.

The Loss

It’s been four years since that hot summer day in July when I knew something was wrong.  I’ve officially gone through all the stages of grief. Sometimes I go through them over and over again. Denial, anger, bargaining, sadness, acceptance. I’m not sure I am ready to accept it yet.

Lupus is a life changer. Not only do you lose physical strength and stamina, you lose a sense of self. The things you used to do, and sometimes the friends you used to have are gone. The dreams you once dreamed seem further away than ever, replaced by the mundane madness of making sure you stay healthy enough to carry on basic daily activities.

I am not the only one that has said good-bye to what used to be.  In short, when I can’t…, sometimes they can’t either. Even though I know it’s not my fault, I feel like I’ve let my family down in some way. I see them worry and wonder if I am ok.

I am ok. We are ok. God has replaced much of the loss with new blessings.

Though I haven’t taken a long hike through the woods for four years, I have picked back up my paint brushes, and lupus is what got me writing. I’ve learned that a spotless house is overrated and that we can still have game night around a messy table. I watch binge-worthy dramas more than ever, but it has turned out to be “our thing.”  Instead of prepping for the hard work of home renovations, we look forward to snuggling up on the sofa.

Most of all I’ve learned to lean on God – for everything. He is the One that holds me up when I feel like I just can’t make it through the day. He is the One that provides, protects and promises a full and meaningful life, here and in eternity.

There is no cure for lupus. But there is a cure for the pain, the lonely days and unwanted life-changes.

His name is Jesus.

The Unseen

Michael, my super-hero husband, asks me all the time, “are you okay?”  He only needs to hear the pause in my voice to know the truth, even if I lie. He can usually see through my fake-it-til-you-make-it moments.

Most people have no idea. People with chronic illness hide their pain. We live in a culture where independence is a measure of success and self-worth. When we expose our weakness, we leave ourselves open to criticism and more loss.  After all, most people with lupus look healthy.

I know that there are others with lupus and with all sorts of hidden pains that are out there toughing it out. Not every pain is physical. Some are emotional. Either way, you are left feeling alone at times. But we are never alone.

God is with us.

“Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.” Joshua 1:9

I am certain that God knows my pain even when no one else does. His love for me doesn’t stop with his presence in my life. If I am paying attention, I can see that there are others just like me that need the strength of God and encouragement of others to carry on.

He works through the battle.

God sees you.

The Battle

Lupus is a disease that affects the immune system. There are a few different types of lupus. Mine is lupus SLE (systemic lupus erythematosus), affecting the skin, blood and organs.  The body cannot tell the difference between what is good and what is foreign, or bad. It mistakenly attacks your good cells, causing damage and pain.

People with lupus must keep in mind that part of staying healthy is eating right, getting needed rest and keeping stress to your body and mind at a minimum. Flares cause damage to your body and can take days or weeks to recover.

Overexertion, lack of sleep, trauma or illness, sun exposure and emotional stress are just a few of the triggers that can cause a lupus flare. For me, my skin, joints, blood, heart and lungs are affected.  I’ve learned to listen to my body. When I don’t, or push too hard, the battle can turn into an all-out war.

Lupus is so complex, I couldn’t begin to explain the details. Thankfully there are organizations like lupus.org working to inform, advocate and find a cure.

I’ve learned a lot about lab tests, disease processes, treatment plans and medical insurance. More than anything, I’ve learned about God’s love for me.  He is my go-to resource for all things, including questions surrounding decisions about my health.

“Great is our Lord, and abundant in power; his understanding is beyond measure.” Psalms 147:4-5

Even though there is a battle raging inside of my body, I know that God is at work. He understands the pain and the loss. Because he died for me, I am victorious. (Romans 5:1-11)

The Victory

While I’ve had to accept I can’t do some of the things I used to do, or do them with the same level of effort, I hang on to the truth that my life is still filled with meaning.

“And we know that for those who love God all things work together for good, for those who are called according to his purpose.” Romans 8:28

My life is fully dependent on him. Who better to trust than an all-knowing, ever-loving Father?

“Give all your worries and cares to God, for he cares about you.” 1 Peter 5:7

I’ve come to understand that we all share in the same kind of suffering. (1 Peter 5:9) Whether it is lupus or another struggle on the long list of human hardships, life is hard.

“For everyone who has been born of God overcomes the world. And this is the victory that has overcome the world – our faith. Who is it that overcomes the world except the one who believes that Jesus is the Son of God” 1 John 5:4-5

I may never be cured of lupus, but I am victorious over lupus. My faith in Jesus is what keeps me going. I look forward to what’s ahead, knowing that my future is in his hands.

The victory is in Jesus.