Pain. Everywhere. My Achilles tendons felt like they would snap if I moved. Pain shot through my hips and shoulders. I couldn’t make a fist, my hands and fingers were too painful to bend.
It was August 2, 2016. I went to sleep finally starting to feel better after two months of illness and fatigue. The doctors had finally found the culprit: Campylobacter, the most common form of food poisoning. Most people don’t even know they have it. They have the runs for a week or so, and it goes away on its own. But not me, my body just couldn’t flush it out of my system. But they found it and were treating it with Levaquin, one of the most commonly-prescribed antibiotics, taken by millions of people every day. As I lie there in bed that morning, wondering how I could even get to my phone downstairs to call for help, I remembered the black box warning.
Levaquin and other antibiotics in the fluoroquinolone family can cause tendon rupture, especially of the Achilles. Not wanting to panic and make things worse, I gingerly rolled out of my bed. Maybe a hot shower would help. Nope. I made my way downstairs, walking like a worn-out zombie, unable to bend my joints and afraid of rupturing my Achilles. I told the doctor my symptoms. She said, “Stop the medication. I’ll order something else.” I hung up, thinking, “Good, this will pass as soon as the medication is out of my system.” I was so wrong.
Initially, the pain did subside, but it didn’t stop completely. After a few weeks, it started getting worse. I asked my GI doctor, who had prescribed the Levaquin, when could I expect to be pain free. She didn’t know. My family doctor didn’t know. My orthopedic doctor didn’t know. My pain management doctor didn’t know. ER doctors didn’t know. Neurosurgeons didn’t know. No one knew. I learned that though all the doctors know this side effect can happen, no one knows what to do when it does happen. I started researching it online and found one book on the topic. It only took a few seconds to download it onto my Kindle. Flipping through the first time, I learned that I had been “phloxed,” the term they use for tendon damage due to fluoroquinolone toxicity. But what I was reading wasn’t promising. It said this condition is likely permanent.
I started reading more in depth. There was no known cure, and treatment was mostly nutrition and supplements that encourage new cell growth. It is thought that the antibiotic actually made changes to my DNA. It blew up my healthy tendon cells, so when those cells replicated, they replicated in the wrong pattern, causing chronic pain and potential rupture. Not good news. Three months after being phloxed, the pain was so unbearable that I spent my days on the couch or in my bedroom, in the dark because the tendons behind my eyes were so painful, with ice packs everywhere. Nothing helped: not anti-inflammatories, not narcotic pain relievers, and especially not steroid injections. I can never have steroid injections again–I can’t even describe the pain they brought on. We rented a stair climber and borrowed a wheelchair. I asked my husband, who is a nurse, if a person can die from pain. That seemed to be the direction this was heading.
The book recommended getting as much Magnesium as possible: soak in Epsom salts, take it orally, use topical gel. I did, and within two weeks had so much relief, I thought it was over. I was on the road to recovery. But roads have potholes. I had one setback after another. Each time, I analyzed what I had eaten and what activity I had done. No more meat that isn’t specifically marked “antibiotic free.”
What loomed large for me was the fact that the one thing doctors were pretty sure of was whatever damage remains after two years is permanent. Today is that two-year mark. This morning I woke up thinking about how I feel today versus two years ago. Definitely much improved. As time has gone by, the risk of tendon rupture has gone down. But I still have setbacks, and I still have pain every day. I never know if I am waking up to a bad-pain day or a good-pain day. I have accepted that this is my new normal. Two years ago I was running three miles a day, working out every other day, lifting my grandchildren, even rock climbing. Most of that way of life is gone.
Last week, my husband gave me a book for my birthday, Believe It, by Nick Foles (Eagles quarterback and Super Bowl LII MVP). It is about him going from considering retiring to the pinnacle of his career. I love football. And I especially love the Eagles. But the part of his book that impressed me the most was what he wrote about his wife’s battle with a chronic illness.
Nick Foles’ wife, Tori, has POTS, a rare, chronic, painful disease. Toward the end of the book, he wrote, “Tori’s struggle with POTS is another example of being at our weakest and needing to trust God every day–even for something like summoning the strength to move from point A to point B. When Tori got sick, we had to dismiss any illusions that we had control over our lives, because at that point, we knew we didn’t. There were times when no one else could tell that she was struggling, but even then, her struggle wasn’t invisible to God. Of course, we wish Tori didn’t have to go through the constant management of a chronic illness, but over the years, we’ve seen God use this trial to strengthen our relationship and our faith . . . Tori would say that she wouldn’t change a thing about the path God led us on. Neither would I.”
I realized that I need to stop trying to get back to where I was. That is in the past. I will probably never have that level of physical ability again. But I can trust God’s plan. Every day I can do my best to manage my pain and trust him to get me through it. I have done all that I can do, from changing my diet to physical therapy. It is in his hands, and I know he is walking with me through the daily pain, the setbacks, and whatever comes next. I have the privilege of living in his strength when I am at my weakest. I have decided to look at my chronic pain as a gift he has entrusted to me. I am looking forward to where God will lead me, even if it is without my beloved high heels.
2 Corinthians 12:9-10 English Standard Version (ESV)
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.