Chapter 2

Chapter 2 - Questions

In September 2017, my back pain returned with a vengeance. David and I had just moved from Charleston in June so I sought the help of a new primary care physician in Greenville. He put me on a kidney-friendly pain medication. He believed my back pain was most likely residual from the hydronephrosis, such that the nerves had never realized they could stop firing pain signals. (At this time, my kidney had already shrunk to almost normal size.) The plan was for me to be on the pain medication for 2-3 months to reprogram the nerves. 

The pain meds greatly reduced my pain. I had a flare in early December but was able to taper off of the meds shortly after Christmas. January 2018 was the best I had felt in over a year and a half. I started to increase the intensity of my at-home workouts, I had more energy at work, I had less pain when cleaning the house, and I just felt great! 

In early February, the pain returned, slowly at first. I had to do more downward facing dogs, and less cardio-infused squat routines. Then I had to do gentle Tai-Chi. One day, I was in such pain that all I could do was circle the couch in our living room 20 times. And it wasn’t just the lower back. Depending on the day, it was also some combination of my hands, shoulder, upper back, sacroiliac joints in the “tailbone” area, my knees, left hip, and even my left big toe. I had experienced some mild to moderate joint aches during high-stress times in my life--first year of college, first year of vet school, clinical year of vet school, etc but never this bad before.

Just like my team at my old job in Charleston, my Greenville co-workers were kind and accommodating. They saw me hobbling in each day in pain, and they asked me if the doctors had any answer yet, as I was now being worked up again for an autoimmune disorder. 

Then the tremor started on a Thursday in March 2018. It was subtle at first, happening only in the left hand. A sort of twitch that occurred only when I would reach for something. I didn’t want to overreact, so I waited. The following Monday I was doing something tedious at work, requiring manual dexterity. I was alarmed by the severity of the tremor as my hand waved aimlessly like a feather falling from the sky as I tried to fill my patient’s medication. I saw my primary care doctor the next day and was diagnosed with an Essential Tremor, a benign tremor that more commonly affects seniors. He would rule out a B12 deficiency and advised me to let him know if it got worse. 

It did.

By the following Wednesday afternoon, I was having uncontrolled full-arm movements, weak legs and I developed severe stuttering in my speech (never stuttered before). I called my husband who was on his way home from work. I told him I needed to go to the hospital. He knew it must be serious and immediately picked me up.

The emergency room was crowded. Because I had symptoms similar to a stroke, I was immediately triaged and taken to CT to image my brain. Then we waited. We were placed in chairs right next to the nurse’s station in case it got suddenly worse. By this time, I was experiencing jerky arm movements as often as every 7 seconds. My speech was getting worse. I didn’t plan to call any family until I had answers, but I was worried that I may lose the ability to speak altogether. I called my grandma, told her what was happening, and asked her to be my go-to communicator to get news to all my family on both sides. She did. 

Eventually the emergency room doctor saw me. He immediately realized it was no longer a simple Essential Tremor. I told him about the intensity of migrating joint pain I had been experiencing, too. And how during high stress times of my life, I’ve had joint aches before but they were never this bad. After asking me all kinds of questions, he was stumped and scheduled me to see a Neurologist via Telemedicine since there was no Neurologist on staff in the evenings. A couple hours later, that Neurologist would look quizzically at me and my symptoms through the streaming video. Now approximately 10pm, he would advise that I be admitted overnight and an MRI of my brain be performed in the morning. 

By this time, we realized that if I was laying down in the bed, looking straight ahead, I could speak almost normally. As soon as I turned my head, or made any motions with my hands, and especially if I stood up and walked forward, my speech would immediately return to stuttering. And I could not even walk to the bathroom without my husband’s assistance. 

Exhausted and delirious, my husband and I tried to make light of the situation. If asked to repeat something, I would jokingly reply “Did I stutter?”. He would make me laugh and tell me everything was going to be okay, that I was the most important thing in the world to him, and we’d figure it out together. I hated it for him, that in the less than 2 years we’d been married, he’d already experienced the “in sickness” part of our wedding vows much more than he’d seen me “in health”.  And he’d been my fearless and loving rock the whole time. (Actually, fearless may not be completely accurate. He hid it quickly for my sake, but the only times I’ve ever seen my husband scared was on the drive to the ER that day and the year before with the kidney issue. Other than that, fearless!)

The morning came, even more blood tests were run, and the MRI was performed. More doctors came by asking the same questions, each with the same puzzled look, each doing their best to figure out what was wrong. And the MRI results were…Normal. I was happy we had ruled out cancer, multiple sclerosis, and other serious conditions, but I was especially eager to see the results of my Lyme disease test, in light of my occupation. Lyme disease can cause fluctuating pain and neurologic signs, such as difficulty walking and tremors. Trying to be positive, my mind hoped for Lyme disease instead of a degenerative muscular disease that would confine me to a wheelchair. Meanwhile, more friends came to visit, and more supportive text messages poured in. Some knew us both, some knew only David. I was overwhelmed by the kindness of our Greenville “family”, who had taken us in so quickly since our move and loved us like their own. I was encouraged by their compassion and their prayers.

However, my mood would turn more somber later in the evening. While David drove home to walk our dog, the occupational therapist came, giving me that same puzzled look I’d seen on the others’ faces, repeating the same questions, and starting to put together a plan for my therapy.  I was okay until he grabbed the walker. Then I couldn’t hold back the tears. It was starting to get real. This wasn’t going to be a temporary thing. I broke down. 

Around that time, David returned, and the second Neurologist on my case would arrive.  The Neurologist would evaluate me, perplexedly ask questions, and be surprised by the acute onset of my condition. My case was so unusual, he said, that it would require the expertise of a subspecialist Neurologist who specialized in movement disorders. I politely implored him to arrange a meeting with her as soon as he could, because my condition was getting worse even in the 24 hours since I was admitted on emergency. He saw my growing distress and found a way to record me talking while walking--with assistance of course--and sent the video to this special Neurologist. We’d have to wait until morning for results.

After he left me alone with David, I wept. I told David I didn’t want him to have a broken wife. That I wanted to give him everything. That I loved him so much, and didn’t want him to lose his life caring for me. I wanted us to hike together in this beautiful town again. I wanted to be able to take care of my home, and cook for him. That I loved my job and wanted to continue working and contributing financially to the household. That he deserved all the good things in life, and now I couldn’t give them to him. Through tears, he would tell me that my spirit was what made him fall in love with me. That my God-given love and grace for him amazed him, and that would never change. That all he wants is me as I am. That God would use this for good. He laid in the hospital bed next to me and told me everything would be okay. 

The next morning, my mind was still reeling, and I started to think about practical ways to adjust to this life. I would shop at small grocery stores to be less tired on the walker. I hoped I could still drive. We could buy a special exercise pool so I could stay active and keep my strength up. Etc.   

And that Friday morning, a new doctor would see me. He would repeat the same questions, but his face wasn’t puzzled. He started to ask questions the others before him hadn’t. Had I ever had an eating disorder? Had I ever dealt with anxiety or depression? Had I ever been abused? Would I prefer to answer these questions without my husband present? I knew my answers wouldn’t change depending on David’s presence, but to show there wasn’t a problem, David offered to step out of the room. The questions continued. I became unsettled by the direction they were headed in. He told me not to worry, that they were just including all possibilities. 

A few minutes later, Neurologist number 2 returned. He repeated the line of questions of the morning doctor. He had spoken to the subspecialist neurologist, and I was diagnosed with a psychogenic movement disorder, a form of conversion disorder. I was experiencing a psychosomatic response to stress. To say I was shocked was an understatement. I told him truthfully that this is the least stressed I’ve been in 10 years. I love my job, I love this man sitting next to me, I love this town. He told me it could be a delayed response, to really think hard.