MAC Region: J5 WPS
What is your diagnosis and when were you diagnosed? At 13 my ankle came out of place sitting on the sofa. My dad worked for Barnes hospital as a barber and knew the head of the St Louis Rams football orthopedics. He pushed me in and got me an appointment and popped my foot in place. As a teenager of 14 I was placed in the hospital for a week with asthma with illness. I had a high sed rate. I was sent home. My back hurt where my SI joints are and I gave up karate which I loved. I had 1999 with Fibromyalgia. I was involved with a semi-truck accident where the truck rear ended me in traffic. My back was damaged in multiple places both in my lumbar area and cervical disks. Multiple doctors suggested fusions. Alternative therapies were also sought due to my age of 25 and my career level as a mid-level software engineer/project manager.
Can you talk a little bit about your experience with diagnosis? I feel like I have had a mixture of diagnosis all my life. Its hard for people to relate to me. Most of my friends are pretty healthy compared to myself. One of my closer friends told me she can’t relate so therefore I knew it was time to look for other friends. One thing that has helped me is water exercise. I really enjoy it. I love the warm water. I am disappointed that my local hospital took the 20 year old successful program away with very little notice from the community.
What is your greatest challenge in living with a rheumatic disease? Finding compassionate good doctors and finding friends who can relate to the experiences. Also that someday there will be a cure to the diseases.
Why is advocacy important to you? Its important to make it easier for my daughter and for the next generation. Also for others to know people they can talk to for support.
