May 2014: My World as I Knew It Changed: Getting an Ankylosing Spondylitis Diagnosis

This picture was taken on my honeymoon before I got so sick. I could have never imagined how quickly and drastically my life was about to change.

In May 2014, my life took an unexpected and dramatic turn. Just six months earlier, in November 2013, I had gotten m and was building a future I took immense pride in. My daughter was flourishing in an exceptional special needs program in McDonough, Georgia, and I had recently been accepted into the TAPP program. With all my GACE exams behind me, I was transitioning from a paraprofessional to a special education teacher—a career path I was deeply passionate about. Life felt full of promise, and I was thrilled by the adventures that awaited me in this new chapter.

When I first began experiencing discomfort, I brushed it off as a minor nuisance—a pulled muscle or strain from the end-of-year hustle at school. At the time, I was working with autistic students and managing the usual tasks associated with wrapping up the academic year: packing up, cleaning, and relocating classrooms. However, one morning I woke up to a harsh reality—attempting to get out of bed was met with excruciating lower back pain that immobilized me. The pain had appeared suddenly, and it was so unbearable that my husband had to lift me out of bed as I cried in agony. Yet even then, it took two grueling weeks before my husband convinced me to visit a chiropractor.

At my first appointment, the chiropractor decided against adjustments after examining my X-rays. Two issues raised her concern: I had a persistent low-grade fever, and my X-rays revealed abnormalities that puzzled her. Suspecting a potential kidney issue, she referred me to a urologist. The urologist wasn’t entirely convinced it was kidney stones, but given my history of recurrent kidney infections since high school, he prescribed antibiotics. Unfortunately, weeks of treatment brought no relief—the fever persisted, and the pain remained relentless. This initial chiropractic visit marked the start of a life-altering journey.

As my symptoms dragged on, the urologist ordered a CT scan. It was after reviewing the results that a general surgeon visited my hospital room and gave advice that would shift the trajectory of my life: If I were his wife, he’d immediately take me to a spinal specialist. That recommendation set me on a path toward answers, but the road ahead was far from smooth.

Getting a diagnosis for my autoimmune disease turned out to be a long and complicated ordeal. For brevity, here’s the progression of my diagnosis: Possible kidney infection → Kidney stones → Kidney abscess → Appendicitis → Sacroiliitis → Degenerative disc disease → Osteoarthritis → Ankylosing Spondylitis (AS). Despite my remarkable spinal surgeon identifying the signs of AS, it took years of debilitating symptoms, numerous tests, and consultations with four different rheumatologists to arrive at an official diagnosis. I’ve learned that rheumatology is a field where finding outstanding doctors can be a challenge.

Living with AS has demanded resilience and determination, particularly when it comes to discovering the right medications and treatments to slow its progression. Managing the disease has profoundly shaped my life and become a defining part of my story.

Moving forward, I plan to share regular blog posts reflecting on the decade-long journey of living with Ankylosing Spondylitis. I’ll do my best to present my experiences chronologically, though some posts may explore standout moments or unique challenges. Once I’ve chronicled my story, future posts will focus on current experiences as they unfold.

Thank you for joining me on this journey and allowing me to tell my story of getting an Ankylosing Spondylitis diagnosis. By sharing my story, I hope to educate others about this autoimmune disease, offer a glimpse into the realities of chronic illness, and shed light on how it impacts patients as well as their loved ones.

❤️ Ivy