In the winter or spring of 2007, I had my first case of Iritis in one of my eyes. The ophthalmologist at The University of Iowa relayed to me that this condition of the eye is extremely rare and usually occurs in people with autoimmune diseases. After testing my blood, the physician stated that I am positive for the HLA-B27 gene. They told me that I have a high propensity for either Lupus or Ankylosing Spondylitis. My eye doctor referred me to a Rheumatologist that specialized in both diseases, Dr. Petar Lenert. After a series of x-Rays, the beginning of fusion in my Sacroiliac Joint was identified. He conducted a thorough individual evaluation. With the confirmation of a Radiologist, he determined that my symptoms were positive for AS. He was somewhat surprised for he stated that AS is predominantly a man’s disease – which we now know not to be true. He immediately had me meet with a physical therapist.
Over the course of the past seven years, I have had a series of flare ups and remission. My first steroid shot in 2007 put me in temporary remission until 2011. At that time, I started going to a chiropractor for adjustments on my neck, mid back and lower back. I now know that the adjustments are not advised. One visit caused me excruciating pain in my lower back. Three days later, if I remember correctly, I had to have another steroid shot. This one took more time, about two weeks, to take effect. My employer at the time was not very pleased with the amount of time that I had to take off.
After that point, I had minor flare ups from time to time. I found that exercise and a healthy diet helped to keep my pain at bay. For a time there, from 2012-2014, I was free of pain. The first time in my life since high school and college I was able to run long distances. I ran a few 5k races in my home town close to Minneapolis.
Throughout the duration of my disease, I have always had some kind of pain in the winter. This year it started in mid to late December after having a lot of success with acupuncture. I thought that it would go away like it would in the past. My flare ups are now a daily occurrence with the most pain in between my shoulder blades. I wake up each morning feeling like I have not slept. I have found that hot water helps tremendously. I am now starting Aquatic Physical Therapy at our YMCA in a suburb of Des Moines, Iowa. I have great hope that with time the therapy will help.
In the meantime, I feel very fortunate to have the support of my close friends and family. I am a single mother of an 11yr old that makes me smile with pride.
Although, I may have this disease. I am not going to let it get the best of me. I am willing to try anything to help get me to a point of remission again by managing the inflammation. I have had great success with changing my diet to gluten free and less Irritable Bowel Disease discomfort.
While focusing on my own symptoms, I feel it is also important to increase awareness about this invisible disease. I also feel it is important to spend time with those I love as well as volunteer.
Below is a recent photo of me standing up in the bathroom.
Iowa, United States of America