Questions I Ask Myself When Seeing a New DoctorLet’s talk specialty physicians. If you grimaced at the thought of having this conversation, you probably have had the same experience that it seems like almost everyone in the AS...Reactions0reactionsComments7 comments
Dealing With FOMOKeeping up with the boundaries and limitations can often be challenging. When everyone we know is out with friends and family, or going for long walks in the trails of...Reactions0reactionsComments4 comments
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...Reactions0reactionsComments3 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...Reactions0reactionsComments4 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...Reactions0reactionsComments9 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...Reactions0reactionsComments6 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...Reactions0reactionsComments5 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...Reactions0reactionsComments11 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...Reactions0reactionsComments7 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...Reactions0reactionsComments9 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...Reactions0reactionsComments2 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...Reactions0reactionsComments3 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...Reactions0reactionsComments1 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...Reactions0reactionsComments2 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...Reactions0reactionsComments3 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...Reactions0reactionsComments1 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...Reactions0reactionsComments2 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...Reactions0reactionsComments3 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...Reactions0reactionsComments13 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...Reactions0reactionsComments2 comments