A Story of Hope - You Are Not Alone.
Last updated: September 2023
"One day you will tell your story of how you overcame what you went through and will become part of someone else's survival guide." -Brene Brown
I grew up extremely active, and played soccer starting at five years old, all the way through college. Whatever I put my mind to do, I accomplished. After college soccer, I got into lifting weights, bodybuilding, and eventually CrossFit. I found myself sometimes doing three workouts a day, simply because I loved it. When I was twenty-four years old, unexpectedly one day I started getting stabbing rib pain and back pain. It felt like someone was stabbing me with a knife in my back. I ended up in the ER because the pain was so severe, I could not sit or stand. They ran every test imaginable, however, they found nothing. They gave me pain medicine and sent me on my way. From that day in 2018, the pain never stopped.
The following three years were some of my life’s darkest and most depressing. My life had become going from doctor to doctor, losing more hope after leaving every visit. The doctors would take one look at me from the outside and tell me I was healthy, even though there was a war going on inside my body. I would leave doctors' offices crying because they made me feel like the pain and other symptoms were all in my head. Over the years, doctors and specialists tried to diagnose me with things like chronic fatigue syndrome, and fibromyalgia and told me I would develop full-blown rheumatoid arthritis at some point in the next five years. Not only did I have debilitating pain, but I was chronically sick with infections, had severe stomach pain, bloating, nausea after everything I ate, extreme fatigue (like I got hit by a ton of bricks), brain fog, migraines, fevers, and sleepless nights.
Toward the end of 2019, I had to quit my job because I could barely stand up anymore during a shift. I became bedridden, extremely depressed, and lost all hope of finding answers. I remember saying to my mom constantly "I just cannot do this anymore; I just cannot do this anymore." My mom is incredible and would tell me repeatedly yes you can, it is going to get better. She took me to every doctor's appointment, and ER visit, and never stopped fighting for answers. In January 2020, I was diagnosed with common variable immune deficiency (CVID), explaining why I was chronically sick, but not the constant pain. However, I went to do my first IV treatment to help my immune system but instead had an adverse reaction to the medicine. I ended up hospitalized with aseptic meningitis. I do not think I have ever been in so much pain in my life. After that experience, I had given up hope of a life without pain or sickness. I had finally come to a place where I accepted that I would never figure out what this pain was.
It was not until 2021 that I found a compassionate rheumatologist who took the time to listen to my story. She had ankylosing spondylitis and was able to diagnose me based on my symptoms and an MRI. Getting a diagnosis is half the battle, but then what do you do next? I knew my life would never be the same and my lifestyle would have to change. I had learned so much over the years about what health truly was. I always thought I was healthy because I was physically fit, but boy was I wrong. Health encompasses your mind, body, and spirit, and they are all interconnected. I learned that your diet is not only what you consume, but what you watch, what you listen to, what you read, your thoughts, and the people you hang around. I learned to listen to my body and that resting was okay. Even though I knew I was never going to be the same or be able to do the same activities I used to be able to do, this diagnosis and pain have given me so much perspective on life. It taught me to never take the small things for granted and to be grateful.
I know that God has put me through all of this to help someone else, which is my hope today. You know your body better than anyone else, so keep fighting for answers. And most importantly you are not alone, and there is always hope, my friend.
Has changing your diet helped manage your pain and flares?