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.