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 am finally at a point where I’m feeling well-ish, which means I’m able to do things without having to recover for lengthy periods of time, so I wanted to use this time to give back. Since there weren’t any SAA support groups in NM, I decided to start one. I think having a group of people to turn to who really get what we’re going through is vital to our overall health.
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
My name is Liz Maines and I live in Santa Fe, New Mexico. Like most women, I struggled with AS symptoms long before my diagnosis in 2014. Twenty-five years ago, I was diagnosed with chronic iritis and I was treated over the years by a number of different ophthalmologists. Unfortunately, none of the physicians ever suggested spondyloarthritis as a possible cause. I am HLA-B27 + and I have struggled for years with back pain. Like most folks, I attributed the pain to hard work and/or sports.
I am excited to co-lead the group with Jeanne Drennan. My goal is to be a part of a community support group where we can safely share our struggles and triumphs. Including, giving each other encouragement and support. Over the years, I have spent a great deal of time educating myself about AS. I continue to strive towards good self-care and how to accept my new normal.
Lastly, I am married with three grown children and two grandsons. We moved from California to New Mexico during 2006. I am a clinical psychologist and work at a National Laboratory. However, my goal is to be just another person with AS who wants to get and give support.
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