Raw Edges

Maybe you’ve had an inner wound. I’m currently nursing one. Only the salve of God’s Word and His nearness heals raw edges and reopened emotional scars. I’m putting together the formerly misunderstood pieces of my past and mourning what was lost. When I became sick in 2013 with mono (EPV), I had no idea that I already had a chronic illness. My immune system had been attacking my own body for twenty-eight years! 

As I was raising my children, symptom after symptom piled on. The inconveniences of weird physical problems were bothersome but felt insignificant. I didn’t know I was sick, and I had more important work to do. I was raising the six most incredible children on the planet. My attention was on scheduling challenges, a house full of very different personalities, individual lesson plans, each one’s needs, and all our family interactions. Plus, life often threw disasters, injuries, and relocations at us. 

Not that my physical issues didn’t affect me. They did! The stress of our calamity-filled lives caused my unrecognized illness to slowly worsen. My symptoms were often debilitating as I grew slowly and increasingly housebound over the decades. But I didn’t ever realize that I was actually sick. It never even occurred to me.

I’m now contemplating the fact that most of my mothering was done as an increasingly ill woman. How did that affect my fulfillment of the most important job of my life? And, more importantly, how did it affect my children? I’m answering previously unasked questions. Until this year I didn’t know I’d been sick for so long.

• How did we live just a few hours from Yellowstone and never go?
• Why haven’t we been to the beautiful northern part of our current state?
• Why did we quit taking long car trips and vacations?
• How did I quit being a fun mom?

I could go on. The answer to all of these is: I was sick. All of this opens a wound. As I dealt with my weird health issues, I tried to keep going through embarrassing and inconvenient trials. But I couldn’t see how this illness slowly stole more and more of me from my family. I didn’t know anything about autoimmune disorders. And for decades no doctor put all the pieces of the puzzle together either. Then mono jumpstarted it, and I’ve been largely bedridden or housebound since.

After six weeks of mono, I finally broke down and headed to the doctor’s office (I thought I had burnout). My doctor was convinced I was “only” depressed, so took over a year to order any lab work while I continued to worsen, rather than to improve. When the test results came back, she immediately referred me to a rheumatologist. I thought this would solve everything.

However, it turns out that rheumatologists nationwide are booked beyond their abilities. Apparently, I wasn’t the only woman experiencing a weird illness without a clue. The National Institutes of Health has classified the autoimmune epidemic as a Major Women’s Health Issue. Something is seriously wrong! (Click both of those embedded links.)

The best rheumatologists are already full-up with patients. This puts an enormous pressure on young and inexperienced doctors who must solve a difficult-to-diagnose puzzle that even the patient doesn’t recognize.

There are protocols that tell doctors how to test when autoimmune symptoms are present and how to follow up on those first tests. This initial response can make all the difference in a patient’s life, but it rarely happens. This is why it usually takes years for autoimmune sufferers to get a diagnosis.

simpleinsomnia via Compfight

After seeing my young and inexperienced rheumatologist for over a year and receiving no diagnosis, I began a sharp decline. Each month I felt worse than the previous month. Then the Lord led me to Dr. Abid Khan, the diagnostic specialist at the only autoimmune triage clinic in the country. Visiting him has been a life changer.

Prepping for my appointment included writing down a timeline of symptoms I hadn’t previously ever considered as part of one illness. This has helped me to look back at my life with clarity. He diagnosed me with systemic sclerosis, also known as CREST syndrome or Limited Scleroderma, a body-wide attack that has no cure.

This is all new information, and I’m still processing. I’m now mourning the effects this had during the foundational years of our family. I keep reminding myself of God’s goodness. During those years, He used the circumstances of my illness to work some of my most needed spiritual and personal growth. That definitely benefited all of us.

Isaiah 45:6b-7 says, “I am the Lord, and there is no other, The One forming light and creating darkness, Causing well-being and creating calamity; I am the Lord who does all these.”

God has promised to orchestrate for good these health calamities and their results. I’m learning that this is true, and learning to let go of what I wish had been. I’m also learning to trust that God knew what was best for my children in giving them a mother who has been growing sicker for most or all of their lives. By faith I believe He will use it for their good as well. Without this hope, my heart would be broken.

simpleinsomnia via Compfight

Dr. Khan referred me to a Scleroderma specialist for treatment. The medical industry is trying to keep up! Still, it took over six weeks and the intervention of the Almighty (no kidding!) simply to get onto the specialist’s schedule.

I want to be treated and cured, and I want it to happen now! But instead, I’m learning to rely on the Lord. He’s had me in this school for a long time. I’m addicted to relying on “experts” and myself first, rather than on Him, so I’m grateful that He is patiently teaching me. I’m learning how much I need the Great Physician. I’m learning about the goodness of God in suffering. I never wanted to learn any of these lessons.

What about you? Are you also in the school of suffering?

Our God loves broken people and He uses our brokenness to show His love and His transformative power within us. Because we are His, the sovereign God of the universe will one day restore our health and grant us glorious bodies like Christ’s! These promises encourage me everyday! 

Until that day, I do all I can to spread the Good News. I’m giving away ten Kindle ebooks of my story about the beginning, how we got into this mess of illness and suffering, and how God planned all along to fix it. The Good News in the form of a novel makes our human story accessible to all. Enter to win a copy of Fallen by April 15 at midnight.