Color Outside the Lines

On July 8, 2020 my legs went numb. And for the second time in as many years, my world turned upside down. In the middle of a pandemic, in the best shape of my life because I had nothing to do other than work remotely and work out, I went from being stronger than ever to unsteady legs while walking down the stairs all within a matter of hours. At a time when it was hard to make a doctor’s appointment, I was sent on the start of what would be a four-year long search for what was wrong. Over the next few months, the residual symptoms that plagued me kept me awake at night, unable to push through the discomfort so I could sleep, no matter how tired I was. So I read into the early hours of the morning each night, and the first book I picked up was “Suffering Is Never For Nothing” by Elisabeth Elliot. And in this book, she gave a piece of advice that hasn’t left me since the first time I read it. When life is hard and you don’t know how you’re going to move forward, just focus on doing the next thing.

Just do the next thing.

Throughout my hardest weeks, I worked on creating a playlist titled “Do The Next Thing”. It was a list of songs that I could listen to on repeat while I just tried each day to do the next thing. There were songs of lament and there were songs of praise. Over the past four years, I’ve occasionally added songs to this list but haven’t listened to it as often as I did back at the start of it all. Today, though, I found myself turning it on as I pulled out of my driveway to head down to my rheumatologist and discuss some bloodwork results. As I listened to the familiar list of songs, I relived the emotions I felt in those first few desperate weeks. And as I drove home from my appointment, I reflected on all that has happened since July 8, 2020.

In the last few years I’ve traveled as far north as Boston and as far south as Florida looking for answers. I’ve seen six neurologists, one rheumatologist, one naturopath, and six physical therapists. I’ve adjusted my diet. I’ve changed how I exercise. I’ve been told that I had possible MS, NMO, and MOG. I’ve been tested for multiple rheumatic diseases. I’ve had dozens of vials of blood drawn and more MRI’s than I can remember. Every disease I’ve been tested for, whether suspected or a shot in the dark, has not been a super pleasant prospect, some worse than others. Nevertheless, I just wanted an answer.

Well, I received the answer today and it was nothing like I expected.

I have non-radiographic axial spondyloarthritis.

I know, it’s a mouthful, right?

Spondylo, as I will henceforth affectionately call it, is a chronic inflammatory disease that hits the spine and various other joints (for me, pretty much every joint in my body …ha.). Lord willing, I start treatment next week. I would greatly appreciate prayers that the medication will be effective and have minimal side effects.

Words can’t describe the relief I feel at having a diagnosis. In all honesty, there have been tears as I’ve processed it today. An answer to the mystery. Proof to myself that I haven’t been imagining these symptoms the past few years. A reason for the pain I wake up with now on an almost daily basis. The prospect of finding relief from the pain and slowing the progression of the disease.

Despite the slightly scary-sounding mouthful of a name, of all the diseases I’ve been tested for in the past four years, this is the most mild. The one least likely to cause organ damage. The one most likely to go into a state of remission.

As I listened to my playlist on my way home today, the song “Give It Time” by Terrian came on. This was a relatively recent addition sometime earlier this year. And one of the verses got me thinking about the seeming incongruity of everything I’d experienced in the past few years.

“Looking back, you can see it all. In the moment, it feels like a free-fall. God never seems to color in a straight line. We have to give it time.”

Lying in MRI machines for a couple hours at a time, feeling like a human pin cushion, different demyelinating disease theories flying each time I saw a neurologist (one who even ventured to say he figured I would have a disease named after me someday…not exactly the fame I dreamed of as a little girl)…I couldn’t see then how it would all lead to an answer when each test came back consistently clear aside from showing inflammation markers in my body. I especially didn’t understand what the purpose of it all could be when my last neurologist cleared me a few months ago, telling me I no longer needed to be monitored for a demyelinating disease. What was the purpose of everything I had gone through if I didn’t have a demyelinating disease? Why did God let it happen?

He showed me today.

Those scans of my spine, combined with my most recent bloodwork and x-rays of my hands were what allowed my rheumatologist to piece together the puzzle. The bone spurs in my spine showing on the MRI’s confirmed the diagnosis of spondylo.

Arthritis. Who knew it could cause the vast array of symptoms I’ve been experiencing?

The past few years have been hard but needed. I’ve learned more about God and His goodness and my desperate need of Him than I ever could have if He had allowed me to stay in a place of comfort. Psalm 23:6 has taken on a whole new level of meaning for me.

“Surely goodness and mercy shall follow me all the days of my life, and I shall dwell in the house of the LORD forever.”

His goodness and mercy have followed me closely throughout each and every day of these past four years. They’ve stuck closer to me than the grief that clung so hard. The grief of losing my health so soon after losing my dad. The grief of the continual perceived let-downs of not being given an answer to the mystery.

Friends, God, indeed, does not color in a straight line. But I would venture to say that a picture of only straight lines wouldn’t be as beautiful. The twists and turns, the vast array of confusing colors He’s used to color my life with in the past few years seemed like chaos in the midst of it all. But looking back? He created a masterpiece. He lead me to a diagnosis better than I could have hoped for. And, more importantly, He used the pain to open my eyes so I could better see His goodness, faithfulness, and majesty.

If you’re struggling with pain and can’t see any beauty in life, I understand. But my hard-learned advice to you would be this.

Trust Him with the crayons. He may color outside the lines, but He’s a master artist.