Riding the Roller Coaster of Illness

Riding the Roller Coaster of Illness

I’ve never liked roller coasters. Ever. I just don’t get the point. Zooming through open air, way beyond heights that are safe, and then dropping so fast that you prepare to throw up. Not to mention slinging around corkscrew turns so hard that it triggers muscle spasms in your neck. And why in the world would any sane person enjoy risking flying off a track that probably hasn’t actually been inspected by someone truly concerned about safety? Really.

But that’s what we’re riding right now.

At least it feels that way. An extremely long, terribly bumpy, roller coaster. One that often takes my breath away, makes me nauseous, and shakes me so hard I feel it’s taking me right off the track. We began the month of April by making another trip to Dallas and I’m finally giving you a bit of an update.

We’re now twenty months beyond LeRoy’s almost three-week hospital stay at UT Southwestern, but a lifetime beyond where we were two years ago. Back then, our daily schedule centered around ministry opportunities. Now, our daily schedule is set by LeRoy’s disease. The neurology team has been treating him for Neurosarcoidosis (although they admit they still don’t have definitive proof of that as a diagnosis).

Twenty months ago, my husband lost his ability to walk, was not quite completely paralyzed from the waist down, and had “impressive” (the doctor’s words) lesions up and down his spinal cord that caused significant nerve damage and pain. They put him on a ten-month Remicade infusion treatment plan that ended November 2018.

Last Monday’s MRI showed the remaining scar tissue on his spinal cord (from the lesions that were originally there), but thankfully there are no new lesions. I’m praising the Lord for that. The remaining scar tissue could be what is causing his pain that just does not diminish.

But, there could be another reason for such excruciating and constant pain. We had three different appointments, and one doctor (that is new to LeRoy’s case) told us that LeRoy has several indicators consistent with “CRPS” formerly known as “RSD”.  

That tells you a lot, right? Acutally, I didn’t have a clue, either. I’d never heard of this stuff.

CPRS stands for: Complex Regional Pain Syndrome. It is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain with CPRS is constant, extremely intense, and out of proportion to the original injury. LeRoy’s pain level, skin changes, and the fact that his left leg is purple much of the time, are just a few of the indicators that caused the doctors to determine that he has this disease. And, yes, it’s another rare one.

CRPS is is ranked as the most painful form of chronic pain that exists today by the McGill Pain Index. If he’s got this, no wonder he’s felt so bad.

On top of the news about CPRS, the doctor told us there’s no cure for it, but pain blocking injections can sometimes help . . . which gave us a little hope until she added the news that the pain block injection works best if administered in the first six months. It sounds like we’re about a year and a half too late for that. His physical therapist suggested we check into the possibility of clinical trials at Mayo Clinic.

Incredibly, LeRoy’s attitude remains the same steadfast and unwavering position of trusting the Father’s care and purposes. He’s trying to learn how to live with such excruciating pain. Which is unfathomable to comprehend really.

But, I don’t want to leave you with bad news, because incredibly, LeRoy is pressing on.

The doctor told him that, other than nerve block injections, the most hopeful treatment option he has right now is aggressive and intensive physical therapy. He must start moving more—even with the excruciating pain—if he is going to have any chance of slowing this disease’s progression.

It’s easy to tell someone to move when you’re not the one whose breath is cut off when a muscle spasm hits that would take the strongest man to the ground. But, pressing on, pushing through, and tackling new territory in the battle with pain is what he must do. And I’ve seen this man push through much.

He grabs onto the grace that God provides, takes his stand, and presses into the day with joy and determination.

Neither of us enjoy roller coasters. Neither of us ever dreamed this would be how we’d be spending these years. But, thankfully, we know Who’s at the helm—and as long as He’s on the controls of this ride, we know it’s going to be okay.

Just this morning, LeRoy read aloud this passage to me, and I want to share it with you as well, so you’ll hear where his heart is. He’s concurring with the Apostle Paul and throwing out this question for us to consider today:

What then shall we say to these things? If God is for us, who can be against us? He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things? Who shall bring any charge against God’s elect? It is God who justifies. Who is to condemn? Christ Jesus is the one who died—more than that, who was raised—who is at the right hand of God, who indeed is interceding for us. Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword?

As it is written,

“For your sake we are being killed all the day long;
we are regarded as sheep to be slaughtered.”

No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord. (Romans 8:31–39)

We want you to know that we’re so grateful for your prayers. Truly your intercession is such a tangible blessing. We know we’re being upheld by faithful prayer warriors. Thank you.

Photo credit: Lindsey Landrum Photography



  1. Posted by Barbara Stewart

    Oh, sweet Kimberly, you will never know how encouraging your words are. Not just for the progress in your situation, but they are healing words for my own situation with our precious son!
    My prayer each day is for me to see and hear my Heaven Father. I hear Him speak through your words.
    God bless you and Bro. Leroy, and may each step you take draw you closer to Him.


  2. Posted by Susan Praught

    So hard to imagine. I’m constantly amazed at what a Christ like spirit he has through all of this. Love and prayers for you both!!!


  3. Posted by Kathryn

    Kimberly. Thank you for the update. Praying now for you and Leroy and will continue to pray daily. May God’s great grace and overwhelming love continue to strengthen your hearts and minds and may healing come. May God strengthen the feeble arms and legs. He is able. Amen and Amen.


  4. Posted by Terry / Joy Bell

    We will continue praying for you both. We do believe God is in control. And he has Much much good things coming for the both of you than we can understand. In Gods love.Terry / Joy Bell.


  5. Posted by Julie

    Praying every morning for Leroy.


  6. Posted by Carol Bailey Gaither

    Leroy, I am so sorry you are having to go through this. Yes we do know the great healer and pray to him for your comfort and healing. I read your story and thought of Job. You remind me of him. ITs my favorite book in the Bible. He never lost his faith. I will continue to pray for you and your family. many prayers my friend. 🙏🙏


  7. Posted by Rebecca Einwechter

    Kim, Thanks for this update! I cannot imagine the depth of pain and difficulty that you and LeRoy have been experiencing. May God’s help, blessing, and healing be with you both. Sending prayers!


  8. Posted by Glenda Mclearen

    God bless you both ! Your testimony strengthens those that are weak and struggling too. I pray for healing and for discernment. And that by faith you persevere and continue to abide in our Lord Jesus. Many are praying. May God be glorified ! ❤️


  9. Posted by Miluska Hakkel

    Hello Dear sister, thank you for sharing this with us. I understand you. My husband was diagnosed with AS, but in his case, he is not a believer and things are very difficult. Even when he is dealing with pain, he still rejects God. Sometimes I find myself feeling so scary about this, then I remember who is my God and who is my savior. He’s on control. Your family will be on my prayers. God bless you!


  10. Posted by Mary Ann Wagner

    Leroy and Kim love you very much praying everyday for pain relief Love to you David & Mary Ann


  11. Posted by Bonnie Lang

    You both have been a true testimony of the love and grace of God throughout this ordeal. Love you for your consistent witness throughout.


  12. Posted by Tammy

    Today God put your testimony in my path. In many ways our marriage mirrors that of yours. I am encouraged by the victory you have in Christ and now I too have hope of a GREAT marriage. As I have combed the internet tonight,searching for more nuggets you may have to share, I hated to discover the details of LeRoys illness.
    My dad suffered for 3 years with ALS. My dad has been a sold old servant for Christ his entire adult life. Led to the Lord by a pastor on door-to-door visitation; dad testified, “I stood after kneeling in my living room to pray and I’ve never been the same.” Paul’s message in Romans that LeRoy read for you was a go to when others questioned him about the circumstances. This past October the 7th at 7:07 pm my 77 yr old daddy stepped into glory; and what a sweet passing it was. Full of wisdom/understanding my daddy showed me how to face illness and/or death…”just like you live. “
    Others may think they can go through this broken world without suffering; they are in for a shock. Suffering is for all of us in one degree or another.
    I pray that God would resolve LeRoys pain and his spirit would be unchanged as Christ servant and clear diagnosis provided with a proper treatment plan. Kimberly, I pray for you, as you are wearing “many different hat”, that you will be strengthen and supported by those that love you both.


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