When I woke up this morning, it felt like any other day. Isn’t it funny how sometimes the biggest milestones in life can feel ordinary without self-awareness and commitment to recognizing progress? Today is a day I have, in a way, been dreading for months. Today marks the anniversary of the start of a very hard year, maybe the hardest year of my life. Ironically — I’m sure as a not-so-subtle divine reminder — today also became the day we have been praying for since April.
The First Anniversary
Hoping to put the hardest year of my life behind me
On October 23, 2023, one year ago today, it was Monday morning. We lived in Waco, in our first house. We had hosted our life group the night before. I had a headache, but we enjoyed having our community in our home so much that I just pushed through. When I woke up Monday morning with a fever, which was very unusual for me, I called in sick to work and asked Alex to drive me to an urgent care clinic, anticipating a sinus infection diagnosis. They tested me for all the normal things — flu, COVID, strep — and found nothing. They sent me home with steriods and had the audacity to tell me to just let my fever run its natural course, which, even in the moment, sounded odd to me. I went back to bed to sleep off the headache and assumed that would be the end of it. But it wasn’t. By Wednesday I had gotten much worse. I went to a different walk-in clinic, and I remember feeling like I was going to pass out while standing at the check-in desk. Something was definitely not right. I tested positive for strep and started antibiotics, and, while my symptoms suggested something bigger, I was optimistic that it would resolve in a few days. Spoiler alert. This was just the beginning.
By Friday of that week, we ended up at a more emergency-level walk-in clinic for pain medication. I could barely walk. I was tested for Mono, which, at the time, sounded like the worst-case scenario. By Monday, the mono test was negative, and my mom had come to Waco to help us for the weekend. We went back to that clinic for more testing, and I got a steroid shot and fluids by IV. We still didn’t find answers. A couple of days later I felt a surge of strength and relief that maybe things were resolving themselves. I was not physically ready, but I was so mentally ready to get back to work after being home for more than a week. I was still on pain medication, so Alex drove me to the office on Wednesday to work in-person with my small team for a few hours. It felt like a good step forward, but I didn’t last the whole day. Alex had to come back and take me home to rest by mid-afternoon. I didn’t know it, but the steroid shot was wearing off, and I was crashing again. I took one of the office laptops home and tried to work from the couch for several days. I was in denial and trying to ignore how much pain I was feeling. I was in no condition to be working on a computer. Little did I know, despite my endless effort to continue working through the pain, I would never step foot in that office again.
After being sick for almost two weeks, I finally got in to see a primary care physician who could follow me beyond one-off urgent care visits. My health history had been so uneventful that I had never even established with a PCP in Waco. The doctors and nurses in this PCP office ended up being the path to the help I needed, but, in short, they were completely stumped by me. After my first round of labs, they called and sent me to the emergency room to admit myself to the hospital and ensure I was not septic — just two days after I had tried to go back to work. When they called me, I was trying to work, and Alex was receiving one of his routine infusions. After a meltdown and phone calls with my parents and sister, I packed a hospital bag. A sweet friend came to my rescue and went to the emergency room with me until Alex could get there. My parents dropped everything to come back to Waco right then. After a pretty frustrating experience in the ER I was discharged and sent home with nothing, and, of course, it was Friday evening which meant we were alone again to fend for ourselves through the weekend until I could go back to the PCP. That next week my mom took me to their clinic almost every day for follow-ups and more blood tests. After being convinced I had rheumatic fever, they were even more stumped when those tests were negative. Every day was cyclical, timed to the hour of medication, fever and trying to find any resemblance of comfort to get what sleep I could, which wasn’t much. My PCP office had exhausted their options, even after bringing at least three doctors into our small exam room during one visit. My mom was practically living with us in Waco by this point. They referred me to an infectious disease specialist and, when that didn’t result in any answers, a rheumatologist.
Getting in to see these specialists could have taken months, but I am convinced that, even though it felt like an eternity at the time, it was miraculous how fast I was able to get appointments. The infectious disease specialist was new to the area, and didn’t have a full schedule of patients yet, making it fairly easy to get an appointment. As Thanksgiving was approaching, we decided, although it was going to be the hardest road trip we had ever made, to drive back to Arkansas for Thanksgiving early with my mom so that she could go back home. My mom had packed me a bag and already loaded it in the back of her car when the rheumatologist’s office called with a last-minute cancellation appointment. Of course, I took it immediately. I didn’t want her to, but I told my mom to go on home anyway. We stayed for my appointment, but we had to get home for Thanksgiving. I was overly emotional as it was, and I didn’t want to find out what it would feel like to miss the holidays with family. Alex’s parents graciously agreed to drive all the way to Waco only to turn around and drive back the very next day just so we would have some extra help getting home.
The days spent waiting for answers all blur together for me at this point. I was desperate. Every new test felt like a possible answer that was just another disappointment. In the meantime they had given me some stronger NSAIDs than what I could take over the counter. And in case I wasn’t testing my limits as it was, I had an allergic reaction to that medication. If you have ever systemically itched all over your body, you know how much desperation I was for relief. Finally, the rheumatologist found some unusual markers, particularly related to inflammation and ferritin. This led us to what they called an “elimination diagnosis,” meaning that they eliminated every other option, so this was all that was left. They called it Adult Onset Still’s Disease. Finally, after at least a month. We had an answer.
The treatment was steroids, which, ironically, I had been given that very first Monday, but I wasn’t taking it anymore in order to get more accurate test results. Rather than give me a big boost of steroids at one time, they started me back on a small dose for several weeks, waiting for it to level out my pain. It took a few weeks, but things started improving slowly.
After being unable to work for about six weeks, I decided I was ready to start trying to go to work at least a little bit at a time as I got back on my feet. I vividly remember sitting outside at Velvet Taco in Waco. It felt so good to be out of the house. Alex and I sat there, eating tacos and talking about what the next steps forward looked like. I texted my boss in Waco to schedule a call about my transition back to work. I got an email in return. This person — this mentor — who I had only worked with for about six months, had become someone I admired and enjoyed working for. I was doing what I always said was my dream job — magazine publishing. But having been out for six weeks, there was no job for me to go back to. The sickness was hard. Losing my job suddenly was really hard. Both of them happening simultaneously felt like being kicked while I was already down. I had been strung along and communication was hard. I had been working toward getting back to normal. But now, there was no normal to go back to. Life would never look exactly as it did before I got sick.
After a lot of grief, I resolved to use the time to continue to heal, and, after the holidays, I developed a daily routine for myself, applying for jobs when I felt motivated — some in Waco, some remote, and some back home in Arkansas. I was not mentally in a place to make a major life decision like that, so I just put a lot of feelers out there to see what would resonate. Once things settled down from the holidays, I started tapering off the steroid treatment every two weeks, a little bit at a time, until I was able to taper off completely in February. You might not know it by observation, but I still, eight months later, don’t feel 100% “back to normal” quite yet. I don’t feel physically as young or mobile or energetic as I did before October 23, 2023. I am still trying to figure out how to take care of myself physically, mentally and emotionally after this whole experience, but the experience brought us home.
We always planned to move home eventually, but when I was offered a new job in Little Rock, we knew moving home was the only path forward. We put our house on the market and started waiting again. Luckily, my new job at Stone Ward graciously allowed us to take our time. I started my new job at the end of March fully remote from Waco. It was exactly what I needed. My days had more structure and purpose. I was able to pace myself physically because I was still at home. Now I can’t imagine the transition back to “normal” any other way.
I have begun the process of establishing with a rheumatologist in Little Rock, and they are monitoring certain labs closely, confident they can detect another downslide before it happens. They have already given me clear guidance on actionable steps if and when I feel certain symptoms rising again. This is just part of my new normal.
Closing One Chapter, Opening Another
Saying goodbye to our first home
After being on the market for seven months and paying rent on top of our mortgage for five months (by our own choice), today, exactly 365 days after the start of my health struggles, we closed on our home in Waco. We sold our first home to someone we never met. We poured so much love into that home, and it was exactly what we needed for that time in our life. Looking back, if we had still been living in our Waco townhome apartment with three stories, I would have been so much more immobile while I was sick. I would have been forced to live solely in the first-floor guest bedroom, leaving no place for my parents to sleep when they were staying with us. That home on Rimfire Road in Waco will always be our first house, and a place we hold so dear, but, when we went back to visit for the last time just a few weeks ago, I realized I was ready to leave it behind. Walking into the empty house in which I experienced so many hard things in the last year, all I could see were those hard memories playing over and over in my head. Leaving Waco was the hardest decision we have ever made, but it was the right decision. Moving away from home was hard, but, because Alex had been offered his dream job, we made the decision pretty quickly. The decision to move away from Waco back home to Conway was one that Alex and I talked about for hours and hours on end for many days and weeks. We truly loved our community of friends in Waco, and we will never forget the impact they had on our lives during those two years. We learned so much about parenting styles and raising children by watching and spending time with the families in our life group every week. But we knew it was time for us to come home. And today, that chapter of our lives is finally closed. We sold our home in Waco, and, in just a couple of days, we will be closing on our new home in Conway that we have actually been living in and renting since July. We already love this new house and, if you know us at all, you will not be surprised to hear that we already have dreams and projects planned to make it our own. When we stepped in this house for the first time I could immediately envision the time we would spend here with family and friends. We closed today on our house in Waco, but now we are free to walk, with no strings attached, into the next chapter of our lives back home in Arkansas.
Answered Prayers
On October 23, 2023, if God had given me a glimpse into where I would be today, on October 23, 2024, I’m not sure I would recognize myself. In a way, I am still discouraged by where I am. I still have so much progress to make in order to get back to where I was before I got sick. I am not the same person physically, emotionally, mentally or spiritually. This experience has changed the way I think in many ways. In the day-to-day, in the moment, it’s hard to feel the progress. Unless I stop and think about where I was last November — hardly able to walk, get out of bed, get dressed, feed myself — it’s easy to feel like I am still behind where I should be. But I have made progress. I am self-sufficient. I drive to work in Little Rock twice a week. I have been helping Alex plan projects for our new home. I have found the new normal, which is all I longed for only eight months ago. Where I am now is an answer to so many prayers I prayed then. My prayers have slowly shifted with my progress, and I need to be better about stepping back and appreciating that more. So many people prayed for me over the last year, probably more people than I am even aware of, and I will be eternally grateful for every person who helped me get through this year.
I mentioned being overly emotional, and I think it was just because of the physical, mental and emotional desperation and exhaustion. I would watch movies with my AirPods connected to our TV to pass the days and nights when I could not sleep so that Alex could work or sleep undisturbed. One day I watched The Greatest Showman, which is a great movie with a great soundtrack, but it made me cry like three different times! I also experienced these rushes of emotion when we started going back to church, particularly while singing. Lyrics like, “You have led me through the fire. In darkest nights, You are close like no other. … All my life You have been faithful. All my life You have been so, so good. With every breath that I am able, I will sing of the goodness of God.” It was hard to see Him in the day to day when I felt so desperate, but, looking back, he was there. He was faithful. Certain nights during my recovering, coming off different medications and allergic reactions, when anxiety would overcome me, I found getting up to read my Bible and pray was the only way to push the anxiety away enough to sleep. He was there for me any moment I went to Him.
Moving back home was not an admission of defeat. It was the culmination of a chapter of our story coming to an end. I don’t regret moving away from home four years ago, although it was one of the hardest things I have ever done. It was good for me and Alex; it was good for our marriage. Being away from family, we only had each other. I have life-long friendships and personality-shaping experiences today that I would not have if we had stayed in central Arkansas. But it also helped me to appreciate what I have here at home. I can’t even tell you how excited I am to not be traveling for the holidays this year, but I never would have appreciated that before.
We may have ended our adventure of living in new places, but our adventures are far from over. We have a new house to make a home. I’ve already lost count of all the weekend trips we have made since moving back. We have been able to rekindle old friendships and make new ones that will make up our inner circle for the next chapter of our life.
Recently, someone told me that they carry a silver ribbon around with them, using it to remind them to find a silver lining in every situation. Yes, I had a hard year overcome by health struggles I could never have predicted. Yes, I lost a job I thought I loved. But, yes, I now live near my family and have a great new job with career and growth potential. I found my silver lining, but I still think I might go buy some ribbon to remind me to look for the next one.