The Hidden Costs of AxSpACost (noun): something that is given, needed or lost in order to get a particular thing. Living with AxSpA comes at a cost. The explicit costs of living with AxSpA... By Jamie Shinkewski3 min readBookmark for laterReactions 0 reactions Comments3 comments
Advocates Sharing With Advocates: René Interviews JamesOne thing that became extremely clear to me since I have joined the community is the difference in how everybody experiences AS. No journey is the same and everybody has... By Rene Agterhof2 min readBookmark for laterReactions 0 reactions Comments4 comments
The 5 Blessings of My DiseaseThe first blessing is the community. This disease can definitely make you feel lonely, crazy, and misunderstood. But finding a community, a group related to your disease, becomes the place... By Nicky Flikas3 min readBookmark for laterReactions 0 reactions Comments4 comments
Dogs With PurposeAs I have been walking this summer, I have encountered two great new friends, and while neither of them has arthritis (at least that I know of), they provide some... By Lawrence Rick Phillips4 min readBookmark for laterReactions 0 reactions Comments9 comments
Am I Really Disabled?I am in my early twenties and people are often skeptical when I tell them that I am disabled. In their eyes, I am a young person and therefore deemed... By Anna Samson2 min readBookmark for laterReactions 0 reactions Comments6 comments
Casey, A Supportive Person in My LifeWhen I first got diagnosed with AS, I felt distraught. But I was very lucky to have someone in my life who is not only a medical professional but a total support to me... By Ali Long3 min readBookmark for laterReactions 0 reactions Comments5 comments
Managing Everyday Tasks with AxSpaAs many of you already know, AS makes our lives a lot more difficult. Simple everyday tasks, that we once took for granted, become things that exhaust us. Since you are part... By Ali Long3 min readBookmark for laterReactions 0 reactions Comments11 comments
Advice For My Younger SelfI knew — in some intuitive way — that I had ankylosing spondylitis (or something similar) about a decade before I got my diagnosis. I knew it when my eyes... By Lisa Marie Basile3 min readBookmark for laterReactions 0 reactions Comments7 comments
An Ode To Chronic FatigueYou know about that soul-crushing, relentless, haunting fatigue — the kind of fatigue that makes the walk to the kitchen feel like a marathon? It's the kind of fatigue that... By Lisa Marie Basile2 min readBookmark for laterReactions 0 reactions Comments9 comments
I've Hit Caregiver Burnout...Now What?I'm sitting here at lunch on a Friday thinking about how I'm going to get through the next 12 hours. I know what's coming. Dinner needs to happen. Kids need... By Auldyn Matthews2 min readBookmark for laterReactions 0 reactions Comments2 comments
Societal and Familial PressuresDisabled individuals endure many challenges throughout life. Living with an illness is exhausting both physically and mentally from a range of symptoms, attending a handful of appointments, and reoccurring flare-ups... By Sarah Lee2 min readBookmark for laterReactions 0 reactions Comments3 comments
Working Virtually Is A Pain!When the Pandemic hit, we were all sent home from our jobs and schools. For a while things were pretty easy breezy. Wake up when you want, eat when you... By Jed Finley3 min readBookmark for laterReactions 0 reactions Comments1 comments
My nr-AxSpa Biologic Journey: Part TwoEditor's note: Read part one of Pamela's journey here. The next step in my biologic journey was Cimzia. First, the bad news: the only approved version of this medication for... By Pamela White2 min readBookmark for laterReactions 0 reactions Comments2 comments
My Blackout Lessons My household was caught in the midwestern regional blackout of 2021. The greater Detroit area-where we live-was especially hard hit. The day started out like any other. Meds, coffee, breakfast... By Dawn Gibson2 min readBookmark for laterReactions 0 reactions Comments3 comments
Things I Still Do With AxSpa!I have previously written about a few of the things that I decided to stop doing with my AxSpa diagnosis, so I thought I would flip that idea on its... By Jes Hojsan2 min readBookmark for laterReactions 0 reactions Comments1 comments
You Can Mask If You Want To!You can mask if you want to, even if you need to leave your friends behind. For me, and several other teachers out there, school has started up again. Our... By Jed Finley4 min readBookmark for laterReactions 0 reactions Comments2 comments
One Day I Went to Bed and Never Woke UpMy journey through living with chronic fatigue started about a year and a half ago. I can’t remember the exact day—everything seems to blend together these days. It truly felt... By Sarah Lee2 min readBookmark for laterReactions 0 reactions Comments3 comments
How Seeing My Symptoms Differently Changed EverythingI remember when I found out I had an autoimmune disease. Learning my body had begun to attack itself was a strange moment for me. I couldn’t get a particular... By Anne-Marie Raymond3 min readBookmark for laterReactions 0 reactions Comments13 comments
As We Gather: Hydrating Recipes for WellnessMonths have passed since the July 4th celebrations here in the U.S.A. Fireworks, camping trips, and picnics resumed by more than a million-fold this year. Life restored; the flow and... By Rebecca C5 min readBookmark for laterReactions 0 reactions Comments2 comments
3 Ways To Get An Energy BoostJust to set the stage-—I’m not the one with AS. My husband, Keegan, is. And I’m his caregiver. We both are at home all day. I work from my garage... By Auldyn Matthews2 min readBookmark for laterReactions 0 reactions Comments4 comments