Chronic Illness

Our Story: Dating to Diagnosis

Preston and I officially met senior year of high school in AP Spanish. Preston spent most of his time being active in sports including football and soccer, while I was involved in cheerleading, dance and gymnastics. We quickly learned we had a lot in common – including working at the local YMCA. Preston taught swim lessons and I coached gymnastics and cheer. We started off the school year as friends – watching movies, doing homework, and taking breaks together at work. He was always someone I could easily talk to, but I knew I would be leaving the next fall to go to college and wasn’t prepared to be in a relationship when I left. I didn’t think I could make it through a long-distance relationship, let alone one that was just beginning. Nevertheless, we decided to give things a try. 

We graduated high school together in May 2013 and in August, I moved to Luther College in Decorah, Iowa to study Biology and Chemistry, while Preston stayed in our hometown working as a welder. Three years of long distance was one of the hardest strains we’ve had on our relationship, but in May 2016, I accepted an internship at a hospital in Cedar Rapids, Iowa, and Preston decided to join me while he commuted to his new job about an hour away.

In April 2017, Preston proposed to me in our apartment and we started to plan our wedding for the next August. Just a few weeks later, I graduated from Luther College and took my board exams to become a Medical Laboratory Scientist. We were on top of the world and felt like we were finally starting our lives together.

There was one problem – I was noticing severe weakness in my arms, hands, jaw, and facial muscles. It started small – I would start slurring my words after talking for multiple minutes, I couldn’t open a jar, and I stopped working out because I was exhausted all of the time. I took my fatigue as a sign of an exhausted college student who just started her career. But weeks went by, and I was sleeping more and more, and I was consistently getting weaker. I pushed off seeing a doctor – I hadn’t gone to even a primary care doctor in years. But Preston and my grandma pushed, so I made an appointment.

After looking up my symptoms, I figured I just had a vitamin deficiency (I didn’t eat the best in college and I went out probably more than I should have), which is exactly what I told my doctor. She agreed that it could be a vitamin deficiency, but it could also be much more serious, and she wanted to send laboratory testing out for an autoimmune disease called Myasthenia gravis. I was reluctant, because I knew I didn’t have the money to pay a huge medical bill, but I agreed. A week later, we were still waiting on results, but I was sleeping 16-18 hours a day, and could barely function when I was awake. Preston was worried and decided to take me into the Emergency Room.

After five days, many blood draws, an MRI, a chest x-ray, a spinal tap, and being seen by many specialists, I was sent home with little answers. We were still waiting on laboratory testing, but my doctors agreed I could wait at home. Two days later, on June 28th, 2017, I got a call from my neurologist that literally changed my whole life. The tests came back very conclusive – I had Myasthenia gravis.

From that point, I was scheduled for weekly occupational therapy and physical therapy appointments and put on many different medications to get my symptoms under control. I took a leave of absence from my new job and focused on my health, spending my days researching treatments, clinical trials, and support groups.

Dealing with my chronic illness has been a BATTLE. I have had a love/hate relationship with my body over the last three years, and I still struggle with it sometimes. I went through the stages of grief as I lost myself – or who I thought I was – and I’m learning to be me again.

One thought on “Our Story: Dating to Diagnosis

  1. Aww. Preston seems like a wonderfully supportive and caring husband. It was so sweet to read how you tell met and how your relationship has grown and matured over the years! I remember seeing posts about your symptoms and how you weren’t getting answers and the various emergency room visits (yes they are SO pricey). Also, I think the fact that you were diagnosed at this pivotal point in your personal and professional life is really descriptive of how acquired chronic illness really takes people for a loop!! Not only the process of the merry-go-round of doctors appointments, blood tests, diagnostic procedures and the waiting for results, but the mounting frustration when you’re met with 10 negatives and unwavering symptoms. I took a class that talked a lot about adaptation to disability and the journey people go on and how it can be similar to the stages of grief. Very, very interesting stuff. I have always appreciated how you share your experience and have been honest about the ways your life has been changed by myasthenia gravis and how it’s taken time to learn what works for you and how to manage symptoms, but that you are still pursuing your hopes and dreams and living life WITH it, not trying to deny its presence 💗

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