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