Welcome back! This is part 2 of my Ankylosing Spondylitis Awareness month posts. Today I’ll share a little of my story with autoimmune disease. Remember though, that everyone has a unique healing journey, even with the same conditions, so please don’t compare yourself to mine or anyone else’s path. There’s a lot of good stuff on the internet and there’s an equal amount of trash. We can be particularly vulnerable when we are searching for answers regarding our health. I caution you to use common sense and practice discernment as you search. In essence, take the meat and spit out the bones.
I’ve had gut problems since at least age 18 and was told many different things regarding its root cause including, nervous stomach, irritable bowel syndrome (IBS), stress, spicy foods, sensitive stomach, ulcers and so on. I also began having back and neck pain in my mid twenties. At age 30 I finally saw a rheumatologist who said it was degenerative arthritis, my x-rays looked like that of a 50 year-old and there’s nothing that can be done about it. At the time I had a 4 year-old and a 3 month-old. I was pretty devastated as I envisioned life in a wheelchair or some such thing. Life went on with pain and 6 years later we welcomed our third baby into our nest.
In hindsight, I see how my life was dramatically affected by my health. I was constantly aware of what I was eating and how it would affect the following day. I knew where all the bathrooms were in the places I frequented and getting stuck in traffic was my worst nightmare. The pain in my back and neck was relentless and let me tell you, pain changes your personality! Curling up in a corner or staying in bed was not even on my radar, so I pushed through believing that “everyone feels like this.” In fact, I remember the first time I actually told someone about the pain, assuming that they’d confirm my beliefs, and I was shocked to learn that most people don’t actually live with daily pain.
I sought out doctors for various symptoms over the years only to leave their offices discouraged, and with another prescription in hand that I usually didn’t take because it made my stomach pain worse. My health really began to decline beyond what I could “keep up with” in 2005 when I had gallbladder surgery that went badly and required additional hospitalization. The following year, I had skin cancer and breast cancer. In 2007, not fully recovered from cancer surgeries, my mom died unexpectedly and traumatically. From then on, I was in survival mode.
Finally in 2011, I saw an orthopedic for severe knee pain (torn meniscus). She was concerned that I had been experiencing pain for so long so she ordered some blood work that revealed elevated inflammatory markers and the genetic marker HLA-B27. Her suspicions were confirmed – ankylosing spondylitis. I had only known one person with this condition and it was a man with pretty severe symptoms including spinal fusion. So… I dug into the research and everything finally made sense, but now what?
Unfortunately, despite many symptoms including sacral-illiac (SI) and cervical pain and inflammation, the rheumatologists dismissed me because I didn’t have any fusion, which I now know is a late stage occurrence, and I “didn’t look sick!” They said, “this is a man’s disease.” I left yet another providers office discouraged and with a prescription that, you guessed it, I couldn’t take because it made me sick, made my gut issues worse and wouldn’t allow me to function. Life had to go on…
My health really started to spiral downward in 2013 while training for my black belt. I was determined to earn this in my 50th year of life. I pushed myself far beyond what I should have. I trained 3-4 hours a day 4-5 days a week while under a tremendous amount of emotional and physical stress. One day, I took several blows to my right shoulder from being thrown during training. I wasn’t eating well, I wasn’t sleeping well, my adrenals were fatigued, my muscles were breaking down and the stress continued to rise, but I pressed on – training with students much younger than me. I sought out various treatments for my shoulder but nothing helped it. The short drive home from training became increasingly painful. My joints (especially my hips and SI area) felt like wet cement was being pumped into them. When I arrived home and attempted to get out of the car, it was like that cement had hardened. There were not enough ice packs to cover all the areas that hurt. In November of that year, I finally earned my black belt (at age 50) but lost my health. I endured the 2 plus hour test that morning and vividly remember that afternoon, standing with friends at a pottery class, feeling the life drain out of my body. The pain overwhelmed me and I could barely breath. It was terrifying!
By January of 2014, I was taking 8-12 Advil a day just to take the edge off the pain so I could participate in life. In May of that year I limped into a complex shoulder surgery, completely depleted and totally inflamed. This surgery was the final straw, the catalyst, the environmental trigger that brought the AS fully to life!
I’ll finish my story in the next post. Until then…
Be well. Live well. Love abundantly!