Our First Steps Into Uncharted Territory

We’re home. Eighteen days after entering through the Emergency Room, after an emergency exit from the conference on Prince Edward Isle in Canada, we packed up the room that had been our medical home for almost three weeks. We said good-bye to new friends, doctors, nurses, and caring providers. Dr. Peter had a huge smile on his face as he watched LeRoy “walk” away. He arrived in a wheelchair, but walked out with a cane.

We’re home, but we’re not in familiar territory.

We’re entering the biggest life change we’ve ever experienced. We’ve got a new rhythm to learn. New challenges to face. Time is spent filling massive pill minders, scheduling meds with meals, applying medicinal creams and Lidocaine patches, and watching LeRoy push himself.

Short summary: It’s really hard right now.

Watching LeRoy suffer with shooting nerve pain is almost more than my heart can bear. He’s on tons of medications right now. I spent about half an hour (or more) this morning filling up his mega size pill minder for the week, and even with all the medication he’s taking, he’s still suffering in pain. He might be out of pain if he’d load up on Hydrocodone, but that knocks him out and he doesn’t want that. He wants to be able to function.

We left the hospital with more questions than answers and that’s hard. When we asked if his mobility and pain should improve, the doctor said, “It might, but it also may get worse, it’s something we really don’t know at this point.”

I’m also preaching to myself A LOT because I know I need to guard my heart against fear of the future, loss of hope, and being overwhelmed with the changes this new territory brings. (It didn’t help pulling into town to pick up his first round of meds and being hit with a $500 drug bill. For people who’ve never been on any medications, and who live pretty much pay check to pay check, that kind of bill can feel a tad overwhelming.)

I’m reminding myself of the truth that God so clearly taught me back in the summer/fall season of 2015:

If I am truly committed to God’s glory—no matter what—then I will fully embrace every affliction He appoints for me. 

Remember when I blogged about that? The Lord has taken me back to that season quite a bit lately, and He’s let me know that was a season of preparation for what we’re walking through now. He was good to prepare me, and I’m so grateful for His kindness in all that He has done to lay a foundation for walking in this new territory.

We’re scheduled to return to Dallas in a few weeks to meet with a specialist. We won’t know much about what the future will look like medically until more tests return and hopefully we can get some answers. But there may not be answers they can give. The very detailed (three hour) MRI showed lesions and inflammation all up and down his spinal cord, and the spinal fluid showed irregularities that no one has explained to us yet. We keep hearing words like: rare, highly unusual, small percentage, A-typical, and many mentions of Mayo. All of this is strange, new territory.

A dear friend who is more familiar with this type of disease sent me this information that was helpful:

“The physicians unfortunately don’t know and can’t predict what kind of course this type of disease will take. NMO is similar to MS and the two are often confused . . . I hope that it’s monophasic NMO—which means one severe episode followed by some recovery (and sometimes dramatic recovery) and not the recurrent type . . . with bouts of exacerbation/remission and increasing debilitation.

The nerve pain is severe because the nerves are demylenated—stripped, as it were—of their outer sheath.”

Her explanation helped me get a better grasp of what is happening in LeRoy’s body right now.

Our prayer is for supernatural healing, for strength and the ability for LeRoy to return to fruitful ministry and a somewhat “normal” life. Please join us in that? But we’re also asking, if the healing doesn’t come, for God to give us the empowering grace to walk this road of suffering in a way that glorifies Him. For grace to minister to others while on the road of suffering.

My precious friend, Mary, ended her informative text with this salutation:

“I don’t even know what to say . . . except that I understand the severity and gravity of this situation, and that I weep with you and love you. I carry you both in my heart and prayers.”

And in saying that, she ministered deeply to my heart.

We are truly so grateful for the many kind notes you all have sent, and the comments you’ve left for us (and that I read to LeRoy as a way to encourage him when the pain grows excruciating). We are touched by you and are so grateful that you are walking with us on this journey into the unknown.


  • Laurel

    If you need a source for phosphate supplements (phospholipids are the basis for the myelin sheath) please let me know.

  • Marsha Bunnell

    God loves you both so much! Look for Him everyday. Rest on your knowledge of Him and the sweet relationship that you have with our Lord! Praying for you as you give care to your groom. Praying for healing for Leroy and blessings from this journey. Love to you both!

  • Sandra Diehl

    Our hearts and prayers are with you both. I know you know God will help you step by step day by day. You are both amazing and your love and faith overwhelms me. May God shine His light , His way, His answers on you. Big hugs.

  • Anita Bautista

    Praying, crying out, and sharing your journey with compassion and great love! You are ministering to my life every day as you walk to so much pain. To God be the Glory for what He is doing and will
    do in both of you. His grace will be sufficient for every situation! You are not alone!!

  • Ana Estrada

    Yes Kimberly and LeRoy, we are walking with you on this journey into the unknown, praying for you!
    Love from Panamá City

  • Carrie Lever

    Just wanted to say thank you for sharing this. Will be praying for you both. Especially you during this time as you go through this change in your life. Thank you so much for your ministry and sharing about the fierce woman. It has been a help to me with my relationship with my husband. May God bless and keep you and make his face to shine upon you. In Christ, Carrie
    P.S. Music is a big part of my life. My way of trying to encourage others is to share songs that have been a blessing to me and my family. There are 2 songs that have ministered to my heart lately: It’s Quite A Valley sung by the gospel group Brian Free and Assurance and the song But God sung by Legacy Five. Sounds like you will stay pretty busy but
    I share music and other things of encouragement on my Facebook page. Carrie Crosswhite Lever

  • Rachel

    Praying for you both as you continue this journey at home! Praying for the pain to decrease, meds to work and His supernatural peace surrounding you!

    I would recommend the book by Terry Wahls….she researched a created a diet to help grow that myelin sheath due to her MS. She went from a wheelchair to biking to work! It might be helpful for your husband as he recovers.

    God bless!

  • Jackie

    Thanks for sharing. Still praying. I’m going to assume that among those piles of medications is that LeRoy will also be getting regular B12 shots to help his body metabolize the fatty acids needed to maintain his myelin sheath? If not, ask the doctor about it. He should be as pernicious anemia (lack of B12) can cause neurological damage as well. Blessings!

  • Katy

    Oh my, as a sister in Christ my faith is challenged and energized to pray for you with boldness, confidence, and utter trust in the Healer! As a physical therapist I pray from the heart of one who daily depends on God’s healing through my hands as I work with patients with spinal cord pathology. As a family member of 3 aunts and 1 uncle with MS and a sister who had ALS, I know these days are filled with uncertainty about what is coming; but we have such great and precious promises that we CAN be certain of as we walk through the waters, the fires and the deserts. And I will pray fervently for you both. NOTHING is impossible with God, NOTHING is too hard for Him, and HIS plans are always, somehow for our good as He conforms us to the image of His Son. As Ernie Johnson Jr. said on FOTF recently, “Trust GOD…”

  • Glenda Mclearen

    Kimberly – I have thought of you often since I met you at our ladies conference. Suzanne Rushing was here with us then. I have been praying for you and your husband since I heard and saw the need. I pray for the specific things you ask and then for strength, endurance and faith that is under trial. Many are praying also. He is the Great Healer and in Him we can trust. Rest in Him – Glenda

  • Donna

    Praying for Leroy and you on this journey that God will give you the strength and grace to walk through and for total healing. Hugs

  • Laura

    Kim you and Leroy have been in our thoughts and prayers from day 1. May God continue to pour grace and strength each day as you press on. May God sustain you both supernaturally. Love you!

  • Christa Mielke

    Dear Kimberly, I can’t imagine your difficult transition time. You and your husband are much on my mind and heart as you wrestle with your husband’s illness. Thank you so much for your blog posts. They are helpful to know how to pray but also give us a window view to observe the way God is using you through this difficult. Thank you for your Godly eternal perspective. I ache with you and diligently bring you boldly before the throne of Grace. What a precious treasure it is that Jesus is a man of sorrows acquainted with our griefs, tempted in all points like as we are and yet without sin. This is comforting for two very specific reasons. 1. Our Savior, though transcendent and glorious, supreme and highly exalted, THIS SAVIOR, being fully human, understands what it is to weep, to bleed, to have limited knowledge of the future, and to be in unrelenting agony. His acquaintance with our griefs gives us the comfort that Jesus is not so far removed from us that He does not know the difficulties we face. 2. Because He endured without sin, it is certain HE IS FULLY GOD. And because this is true, the compassion and understanding revealed through His humanity are not just well wishes sent our way or out of touch realities. The compassion of God is an active and intricate reality in which He Involves Himself with our circumstances, and orchestrates events in such a fashion that we begin to truly find our all in Him. Truly, the compassion and understanding of God are our lifeline breathing fresh air into our spiritual lungs refreshing us, reviving is, and reminding us that we have everything we need that pertains to Life and Godliness! He’s made provision for both! What Astounding, tangible, realities! My prayers for you have been that in those moments you are tempted to fear or to become overwhelmed, that you would be led to the ROCK that is higher than you. I pray when you meet Him there, the All-powerful death and sin defying God, that you would allow Him to hold you and cradle you with the pierced hands that bled for you. His deity and humanity are a resource of great comfort to me when I look up long enough to consider these things. I truly don’t mean to be preachy, but these are thoughts I’ve been running to lately and hope they bring some comfort to you in this time of questions and uncertainties. God isn’t uncertain about anything so we, in our respective difficulties, may choose to breathe deeply of that ONE Eternal Constant, Our Jesus.

  • Chrissy

    So saddened to hear your news. My heart goes out to you and your family. May God strengthen you all during this challenging period of uncertainty and pain.

  • Leanne

    Beautiful Kimberly,

    My heart aches for you and LeRoy as you continue on this journey. The thought of you pondering and enduring this drastically different path for you and your husband in his feeble and pain stricken state as you are submitting to the Lord’s providence is encouraging, yet heart wrenching. You are on my mind throughout much of the day and moments at night when I am awake. I’m praying for a miraculous and complete healing for LeRoy as well as continued perseverance, patience, strength, hope, and joy in the midst of waiting on God’s timing for healing and resolve. This morning as I had my quiet time, I read a passage in a book by Linda Dillow that so beautifully describes you at this time. This is my paraphrase:

    “A few years ago on a hike to a waterfall behind my home, the path became obstructed by a large pine tree that had been toppled over by a recent, violent storm. As I hiked around the fallen tree, I thought, how sad, this tree will probably die. But I was wrong, each time I made the hike to the waterfall, I found the pine tree bowed over, but still thriving and green. It continued to live because its roots went deep down into the life-giving water that flowed deep within the ground from the water coming from the waterfall. In the midst of a season of great difficulty and sorrow, I climbed to that tree and sat upon it crying out to the Lord. As I quietly sat and He whispered to my heart that just like this tree, He had allowed the storms of life to topple me over, but here, on my knees, He would sustain me and nourish me with His life-giving water because my roots when down deep into His Word.”

    This embodies you! Just as this so beautifully describes, the Lord will continue to produce vibrancy and life through both you and LeRoy, as your roots go deep down in the never failing living waters of God’s Word. The beauty we will behold as a result of your testimony through this will bring so many to Jesus and much glory to the Father! I praise God for your faith and your unswerving commitment to Him. I will continue to intercede on both of your behalf continually!

    Isaiah 58:11 “The Lord will guide you always;
    he will satisfy your needs in a sun-scorched land
    and will strengthen your frame.
    You will be like a well-watered garden,
    like a spring whose waters never fail.”


  • Kathryn

    Storming the thrown room of heaven with prayers for healing, abundant grace and supernatural joy even in the midst of suffering.

  • Mary

    Oh I am so sorry to hear of this most difficult trial you are facing while in Canada. I also just read an article by Dr. Daniel Cameron about the numbers of new cases of Lyme disease in Toronto, Canada. If you are unaware, Lyme disease is so often misdiagnosed as MS. I just saw his post, and within moments saw your post. Here is a link if you want to look into it. Godspeed, my prayers are with you all.

  • Betsey Newenhuyse

    Kimberly, so so sorry. May you and LeRoy find strength and grace for the day in our Savior who loves and comforts us, and may He bring you help and friends and laughter and rest.


  • Sarah

    I’m grateful for these new words to pray, and I will indeed pray them:

    #1 “Our prayer is for supernatural healing, for strength and the ability for LeRoy to return to fruitful ministry and a somewhat ‘normal’ life.”

    #2 “I hope that it’s monophasic NMO—which means one severe episode followed by some recovery (and sometimes dramatic recovery)” (Oh, LORD, please!)

    #3 “But we’re also asking, if the healing doesn’t come, for God to give us the empowering grace to walk this road of suffering in a way that glorifies Him. For grace to minister to others while on the road of suffering.”

    I, too, carry you in my prayers and in my heart.

  • Rebecca

    Noticed Rachel made a post on August 28 (8/28). Reminded me of the reference in Romans…Rom. 8:28!!! Sounds like like Rachael is on to something you each may have control over. Hope you can find the book by Terry Wahls!!! Hope you can find a way to justify spending what money you do have on the diet over the meds.

    Asking the LORD to continue to stand between LeRoy and an addiction to pain meds!

    Keep on standing!!!


  • Rebecca

    There is a simply blood test that tests the B12 level in your blood. LeRoy is a part of his health care team per Nursing Assistant training I have received. Patients always do better when they take a more assertive role in their care. If the Dr. can justify to the insurance company the need for a B12 test, they certainly will do it. Dr.’s are not always trained well in the connections between nutrition and disease, so if you can do the home work for them by citing this from a medically respected source the justification should come easier and you won’t be mainstreamed.

  • Rebecca

    I, too, have heard from medical professionals that lymes disease is often misdiagnosed. I would ask the doctors if there is anyway that this could be ruled out. I will be trusting the Great Physician to give you and your healthcare team his Wisdom around this.

  • Rebecca

    Dear tics can be as small as the head of a pin. Be sure to go over every inch and crevice of the body. My one year old had a swarm of them in his groin area, when visiting my Mom in Wisconsin near the Canadian border. The tics are insidious, they got in underneath his diaper! Fortunately, there were not infected with Lyme’s.

  • JK

    My husband and I are at the other end of a similar road. He also has a rare neurological disorder, but of a different type. We have also had an unexpected lengthy stay in a neurology unit in Texas. He too was a pastor.
    We are both now retired (early) because of his illness and the time it takes for his day to day care. We have been “dancing in the mine fields by faith” for 12+ years. I just want to assure you that God is as faithful as you are anticipating Him to be on this journey. His love, grace, and care is there in such abundance, in every detail. He is there to still your heart and give you relief in the moments “when you have had enough”. He is there when you praise him for a simple thing, you use to take for granted, that you now consider a victory. We have referred to this season of life as our “PHD in Trusting and Compassion” stage. We will be praying for you both.

  • Jessica C.

    I have recently found out about two things that may help your husband. My parents have been taking these things and have seen improvements in their own pphysical health. The first is ozonated water with pure MSM, following the book Flood Your Body with Oxygen by Ed McCabe. The second is pure organic black seed oil.

  • Kimberly Wagner

    Wow, thank you so much, JK!

    Your message is so encouraging, because I know you truly understand as one who has walked this road ahead of us . . . and it provides such hope to hear you say that God has cared for you so completely.

    Your prayers are a dear treasure to us!