As with many spondylitis patients, I was misdiagnosed for many years. I experienced colitis, neck and back pain and systemic “bone deep” pain and fatigue – you know, the kind that makes you feel like even the weight of your clothing is too much to bear, and crushing fatigue that isn’t remedied by sleep. I’ve seen rheumatologists that have said things like, I couldn’t have AS because I wasn’t fused and “it’s a mans disease.” The emotional pain of being dismissed by healthcare professionals compounded the physical pain of the disease.
I am HLA-B27+ and have ankylosing spondylitis, psoriatic arthritis and colitis that are managed with a biologic medication, an anti-inflammatory diet, stress management and movement (a.k.a. exercise). Because I don’t know what I’ll feel like on any given day, I strive to pace myself and enjoy each day that I’m given.
I’d like our group to be a safe place to share our stories, offer and receive encouragement, talk about things that are helping/not helping us, and occasionally hear from various health experts who have experience with spondyloarthropathies.
Jeanne is a health writer and an occupational therapist with a small holistic practice. She’s a native New Yorker who was transplanted to the high desert of Albuquerque in 1976 and has lived in the East Mountains since 2004. Jeanne is married to her high school love and together they have 3 grown children (all homeschooled), and 2 grandsons – one here and one on the way! Her movements of choice are Shotokan karate, Qi Gong and dancing. She loves making herbal remedies, salves and healthy meals.
– Jeanne Drennan, OT/L, CNMT