We had arrived at my in-law’s lake house the evening before, the anticipation of the 4th of July weekend hanging in the air like the smoke of the fireworks that would be to come. My kids love the lake house for the opportunities to swim, kayak, and play with their cousins; I arrive with anticipation of enjoying the down time on the deck overlooking the lake as well as the solitude of running on the wooded backroads. It is a nice change from the open fields of my home turf, those corridors lined by pine and fir trees.
As is my tradition I headed out the next morning for a run later than I should have (darn sleeping in!), a time in the day when the shade is comfortable but the sun is not so much. Every now and then a gentle breeze would come upon me, providing much needed relief from the heat. “Thank you Lord” would quietly emerge from my lips. As I came up a rise in the road I was struck by the memory of this place and time just a few years ago, that “deja vu” feeling where a perfect alignment of factors transports you back to a time gone by. This day I was struck by the memory of running this route the day after our lives changed, the day after my son and I both received a diagnosis of rheumatoid arthritis.
The call from my nurse practitioner came through as we were leaving from our son’s rheumatology appointment, the appointment where we had finally received an answer for the 6 weeks of pain he had been experiencing. What had stumped several other medical providers was a quick answer for the rheumatologist: he had juvenile rheumatoid arthritis.
After that visit we were to head to my in-law’s house for the 4th of July weekend. As we headed to the car my phone rang , the cell number of my provider popping up. I knew the results from my recently drawn labs should be back soon so I had been waiting for her call. Waiting with mixed emotion. Wanting an answer to so many questions while also being apprehensive of what those answers may be.
“Hey Wendy, what’s up?” I answered in my usual upbeat voice.
“When I told you to be positive this is NOT what I meant.” was her reply. “Your anti-CCP antibodies are sky high. You also have rheumatoid arthritis.”
Validation…her words provided validation. For years I had felt that something was not right with my body. Unexplainable fatigue, joint swelling, back pain, gastrointestinal issues. I chalked them up to living a busy, stressful. But our son’s medical journey and the research I had done over the past six weeks had me questioning that assumption and seeking answers for my own health journey.
I would later learn that anti-CCP antibodies were one of the many tests used to evaluate for auto-immune inflammation. While all of my other inflammatory markers were normal this one was not. This one provided the missing piece to my health puzzle.
As we got into the car and began our three-hour journey to the lake my head was spinning. What did this all mean? We had just learned that my son would likely end up needing weekly injections…would the same be true for me? Was there a chance for me to feel “normal”…to make it through the day without the urge to nap? Was there the chance that I could sleep without pain waking me?
These questions and more swirled through my head the next day as I headed out for a run. Despite feeling crummy most of the time I still managed to pull myself together and continue my passion. My mantra was “I don’t run fast but at least I run.” Running was the quiet time this introvert needed in order to refill her emotional cup. It was the time I needed to think through life to the cadence of my feet hitting the pavement or gravel. And this day was no different than so many others, except that this time the load of contemplation I was carrying was much heavier as I thought about the unknown road ahead for me, our son, and our family as a whole.
As I ran through the tree lined corridors around the lake that day in July 2019 I made a decision: I would keep running. I would not let this disease stop me, or my son, from living life to its fullest. I would educate myself and use that education to be the advocate for both of us. While I knew that I had no control over where life would take us I did rest in the assurance that the Lord knew this challenge was coming and that He had a plan. The words of Romans 8:28 (NLT) echoed in my head: “And we know that God causes everything to work togther for the good of those who love God and are called according to his purpose for them.” The road ahead may be fraught with difficulties but I had assurance that the end was known and good.
Over the past three years I have learned that autoimmune disease is not an easy road to walk. I have read stories of others who have faced this challengning diagnosis with a much different view, waving the flag of defeat rather than victory. But stories such as ours are not unique; in the end we all have struggles and no one is free from adversity in life, be it physcial or emotional. We all come upon forks in the road of life where we must make a decision: are we going to let adversity bog us down, darkening our path and breaking our spirit or are we going to walk in the light and freedom, knowing that challenges serve to make us stronger.
In the blink of an eye three years have zoomed by. We’ve learned the ins and outs of Enbrel and Humira administration along with the difference between oral and injectable methotrexate, concepts that were never on my radar prior to 2019. Quarterly blood work has taught my son that blood draws are not traumatic as long as one relaxes. The first time he had his blood drawn there was screaming and fighting as lab personnel had to physically restrain him. At our last visit in June he just hopped into the phlebotomist chair and offered up an arm without hesitation.
Where will the next three years take us? Truly, God only knows. As author Barbara Cameron has said, “Worry about tomorrow only steals the joy from today.” There are good days and bad days, days when I celebrate the gift of energy and feeling what I would consider “normal” intermixed with days where I rely upon my faith, family, and friends to help pull me through. These last three years have taught me so much that I truly would not trade them for anything. I would not trade what I have learned about empathy and compassion. I would not trade what I have learned about my personal limitations and my ability to serve others while still protecting myself from emotional and physical burnout. I would not trade what I have learned about giving myself room for imperfection. Sometimes the Lord’s gifts to us come in oddly wrapped packages….
The Gravel Road Diaries 