#axspa

[grace-is-tired]

My favorite YouTuber posts every Friday, so I’ve formed a nice ritual where every other Friday when I have to do my biologic injection I watch that week’s video while I wait for the shot to get to room temperature. It calms me down and makes having to stab myself a little less terrible. I’m glad that there are small ways that can make living with chronic illness more bearable.

[ego94]

question for people with (nr)/axSpA: does stiffness make it uncomfortable the first few moments after laying down? i’ve been experiencing this for so long and it’s not particularly painful but it’s fucking annoying

[crippleprophet]

the long-awaited (by me) info sheet on ankylosing spondylitis symptoms, research, and myth debunking is now available! send it to your friends, your enemies, your chronic illness groupchats, print it out and staple it to your local telephone polls - and please let me know if this is helpful, if you have questions, and if there’s anything you think should be added!

https://docs.google.com/document/d/1LLfI4ACQyiiLViyqVO030cTalZAFGfmu8n5-KuLzrrg/edit

what your doctor didn’t tell you about ankylosing spondylitis

what your doctor didn’t tell you about ankylosing spondylitis by mac @crippleprophet note: this is a living document, so I will be updatin

[babyforestnymph]

a cousin of mine told me she’s “so sorry to hear” that i have to use a walker now and i know she means well but using a walker has been a life-changing positive change in my life so getting pitied for it makes me so uncomfortable

[chronic-confessions]

Confession #4,590

I got diagnosed last year with AxSpA and fibro but that may have been wrong and now I'm back to not being sure why I am in constant pain. I've had to be off my NSAID for 3 days and I'm already in excruciating pain all because I have to go for an MRI tomorrow to see if I actually do have AxSpA. If that wasn't enough I have to move out of my house asap and it gets worse - now I can't apply for skills tests so I can get my dream job far away from retail because I need a fucking contact address.

[grace-is-tired]

Once again it seems I am the only patient under 40 in the rheumatologist’s office fun fun fun

[ego94]

bawling my EYES out. while my rheumatologist is still unclear on my diagnosis, she wants me to try humira to see if it helps and i finally feel like i’m being taken seriously, like she actually wants to figure out my condition

[crippleprophet]

my girlfriend, doing her med school rheumatology unit feedback after they perpetuated the myth that ankylosing spondylitis has a 3:1 male:female incidence rate: and of course i’m going to mention the bullshit about AS—you don’t happen to have that citation, do you?

me, already pulling up the google doc: oh of course i do