Amplifying Black Advocate Voices: How Bias Has Affected My Patient JourneyBeing diagnosed with an autoimmune condition like axial spondyloarthritis (AxSpA) can take years. Many people report their early symptoms were dismissed by doctors or they were misdiagnosed. This delays treatment...Reactions0reactionsComments0 comments
My Recent Experience Navigating the U.S. Healthcare SystemThere are so many issues with our healthcare system in the U.S. that I could write a book. In fact, I’m sure there are countless books written on the subject...Reactions0reactionsComments0 comments
The Blame GameI was diagnosed with AS in 2016, but I was managing a vast spectrum of pain since 2011. My symptoms included intermittent bouts of iritis, sciatica, stiffness, stabbing pains, crippling...Reactions0reactionsComments2 comments
How AS Has Changed MeAlthough I’ve only been diagnosed for a year, I feel like I am a shadow of my former self. I have changed both physically and emotionally. Before I was sick, I would...Reactions0reactionsComments1 comments
How We've Created At-Home RelaxationWho doesn't love an evening of relaxation with candles, massage, and total relaxation? Creating an at-home spa experience is a key part of my husband, Keegan's, pain management, and stress...Reactions0reactionsComments1 comments
How Disability Theories Exclude People with Chronic PainDisability is a complex topic, so naturally, there are many ways to think about it. The disabled community has different ideologies — some people view their disabilities as blessings, while...Reactions0reactionsComments3 comments
Broken SpineI like to find used paperbacks for my ever-churning library of reading material. I usually have at least one book and one magazine in the process of reading all the time. For...Reactions0reactionsComments3 comments
Nature's Green Gifts To The Chronically IllInspired by an article about the healing power of nature over at PsoriaticArthritis.net by Diane T., I wanted to share a bit about how I work with nature to move...Reactions0reactionsComments2 comments
Am I Too Much for My Friends?Over the past 4 years of having AS, I’ve run into this problem over and over. I wonder if I’m too much for my friends. If my illness and daily...Reactions0reactionsComments5 comments
Eyes on the Prize: Setting GoalsI was diagnosed with non-radiographic axial spondyloarthritis in May 2019 after many years of chronic pain. I’m the type of person who loves to make “to do” lists, so a...Reactions0reactionsComments2 comments
A Journey to AcceptanceIn the early nineties, doctors diagnosed me with ankylosing spondylitis. With me being in my teens I couldn't really comprehend what kind of journey would lay ahead of me. The...Reactions0reactionsComments12 comments
AxSpa and Medical GaslightingI had been struggling for a few years when I finally had enough of not having some sort of solution or treatment for, what I now know is AxSpA. I...Reactions0reactionsComments1 comments
The Rollercoaster of Living with Chronic PainBeing in pain 24 hours of the day, 7 days of the week is exhausting. Losing sleep because of it, waking up early because of it, not being able to...Reactions0reactionsComments0 comments
What My Days Look Like Living with AS: Part 1It’s 6:50 AM. The alarm is going off, but I don’t want to move. I didn’t sleep but probably 4-5 hours. I tossed and turned the entire night, trying (and...Reactions0reactionsComments5 comments
How Technology Brings Both Convenience and Confusion: Results of the Connected Health SurveySometimes, it feels like we are surrounded by technology. Apps, devices, trackers, and gadgets are everywhere! In this digital age, though, everyone has a different level of comfort using technology...Reactions0reactionsComments0 comments
Service Animals and Emotional Support AnimalsIf you have axial spondyloarthritis (AxSpA), you might have considered a service animal to support you. Service animals are often associated with those needing a seeing-eye dog or mobility assistance...Reactions0reactionsComments4 comments
A Little Bit About Me and My ASThroughout my life I have always been tired, I thought this was "normal." I have suffered from mild back pain on and off for years, mostly in my tailbone. I...Reactions0reactionsComments4 comments
Hi, I’m “Just The Immunocompromised”As the COVID-19 pandemic drudges on, so does my frustration, as I watch people I once thought to be intelligent make brainless decisions that contribute to the spread. These poor...Reactions0reactionsComments3 comments
Beyond Medication: Managing Axial Spondyloarthritis HolisticallyWhen I first was diagnosed with ankylosing spondylitis, I didn’t see or read a lot about stress management. In fact, all of that seemed strangely disregarded, as though our minds...Reactions0reactionsComments3 comments
My Challenge to Adapt to the Unpredictable AxSpaI used to live a full-on life, enjoying planning many things such as dinner with friends, holidays, weekends away, various activities, and gatherings in my house. I would get very...Reactions0reactionsComments4 comments