'I could feel my organs shutting down - I begged nurses to let me die'

Every attempt to turn or shift “felt like being sliced in two”, she remembers.

For two relentless weeks in April 2014, blinding pain became her constant companion, and she wondered if she would ever be able to walk again.

Her torment began when she was 15 years old.

“I chalked it up to growing pains and pushed through like most teenagers do,” the 46-year-old from Atlanta, Georgia, says of the condition that initially mystified doctors.

When she was 17, they treated her for kidney infections for an entire year. “My urine never showed signs of infection, but my white blood cell count was elevated, so they assumed it was a stubborn infection that wouldn’t clear. The damage to my spine was already beginning, even if no one recognised it yet.”

Her early symptoms were repeatedly dismissed. She was told she had everything from appendicitis to osteoarthritis. It was only when a full MRI was carried out that her incredible spinal surgeon recognised it as Ankylosing Spondylitis.

“I saw four different rheumatologists before I found one who truly saw me, not just a checklist of symptoms. The others dismissed me because I didn’t fit their textbook definition of the disease. It was exhausting and dehumanising to be told, over and over, that my pain didn’t count because it didn’t look the way they expected,” she says.

Eventually, Ivy was diagnosed with Ankylosing Spondylitis (AS), a long-term inflammatory disease that attacks the spine and other areas of the body. As it progresses, the body can produce excess bone, slowly fusing the spine into rigid and often painful positions. The condition affects up to one per cent of the global population, but it is frequently misdiagnosed, and for Ivy it took years of hospital visits, repeated dismissals and four different rheumatologists before she began receiving the treatments that would slow the progression of her AS.

By 2014, things changed dramatically. Ivy was teaching in special education, a career she loved, but one moment set off the most difficult chapter of her life.

“As teachers, we’re trained to go to the floor with our special needs students when needed to keep them safe. I did just that with one of my students, and about three days later, I started feeling warning signs - a twinge here, a sharp pain there. Nothing unbearable, just enough to notice. But three more days passed, and everything changed. The pain became so intense that when I tried to get out of bed, my husband had to physically lift me while I screamed in agony.”

“The only way I can describe it is like the worst toothache imaginable - one that never stops throbbing - and then, just to remind you it’s still there, it sends sharp, stabbing jolts through your body. It’s relentless. And beyond the physical toll, it chips away at your mental health in ways that are hard to explain unless you’ve lived it,” she says.

Unlike many with Ankylosing Spondylitis, Ivy’s spine had not fused on its own. “Instead of waiting for my body to fuse in a misaligned and damaging way, my care team was able to surgically fuse my spine in the correct position. That precision has made a world of difference. It’s given me a level of mobility and stability that many others with AS never get the chance to experience.”

Since 2015, she has undergone seven spinal surgeries that initially left her mentally and physically broken at first, but eventually became the best decisions she ever made. .

“Recovering from spinal surgery is no easy feat. It’s gruelling and takes immense perseverance. After one surgery, I spent 12 weeks on strict bed rest, lying at a 30-degree angle, except during meals when I was allowed to sit up to 45 degrees.

“After so much time flat on my back, I essentially had to relearn how to walk. The first time I stood up using my walker, my entire body trembled uncontrollably from weakness. I managed to take just two small steps that day, but it was a pivotal moment for me. I promised myself that I would never again take the ability to walk for granted.”

The darkest point came in 2023, after her sixth surgery when she developed complications. “On February 10th, my mum took me to the ER after finding me completely incoherent, running a fever, and in the worst pain of my life. Despite my symptoms and a white blood cell count of over 24,000, the ER doctor dismissed it as an inflammatory response to the surgery caused by my Ankylosing Spondylitis. Against the protests of my family and even my spinal surgeon, they sent me home.”

Her condition declined so badly that by the time she went in for her next operation six days later, she was in septic shock. “I arrived at the surgery centre in an alarmingly critical condition. My blood pressure had plummeted, I was tachycardic, and I was in acute kidney failure. My condition was so severe that I was immediately transferred to hospital.”

The infection turned out to be Serratia marcescens, a rare bacterial infection. “The surgery was necessary not only to address the infection but also to completely redo the spinal fusion and remove all infected tissue and fluid. This operation and the ensuing recovery would prove to be the most difficult challenge I have ever faced and overcome.

“My mum told me later, I was so sick and delirious that I begged the nurses to let me die. My body was in full-blown sepsis, fighting with everything it had just to stay alive. And when you’re that sick, you know. I knew I was dying. I could feel my organs beginning to shut down. But strangely, I also felt an overwhelming sense of peace. Part of that came from my faith in God, but another part came from the years of chronic, agonising pain I had endured. If I died, I knew the pain would finally stop. And if I lived, I trusted that my surgeon would help me reclaim my life.”

As she recovered, Ivy knew she should never give up on movement.

“I never feared not walking again because I never told myself I wouldn’t walk again. I always told myself that when I walk again, I will never stop moving again.”

True to her word, she committed to exercising every single day.

At first, short walks, then jogs, and now daily runs of at least six miles.

The results have been remarkable. “Since embracing consistent movement after my last surgery, I’ve been able to shed 107 pounds, and I feel better than I have in years. I’ve truly come to believe that movement is medicine, and it’s been transformative for both my body and my spirit.”

Running helps with her pain and stiffness, has improved her diabetes, and has lifted her mental health. “My runs are where I clear my head, remind myself I can take on anything the day brings me, and help me recenter myself,” the author of blog Uniquely Me and Loving It says.

She is extremely grateful to her medical team: spine surgeon Dr. Philip G. Ploska and rheumatologists Dr. Kimberley and Dr. Hayes Wilson and in March, she will fulfil a long-held dream in running the Publix Atlanta Marathon.

“Though my life looks different than I once envisioned, it’s beautiful and fulfilling in ways I could never have imagined. Yes, this disease has taken things from me, but I would even dare to say it’s given me more. It’s taught me to cherish life deeply, to leave a legacy of helping others, and to truly fight for what matters,” she adds.