My name is Katie* (*name may or may not have been changed for privacy) and I have Ankylosing Spondylitis, which hopefully, by the title, you figured out already.
Maybe you yourself have AS. Welcome, my fellow suffering friend!
This blog is not your typical, family-friendly, we’ll-get-through-this, race-for-a-cure blog you usually find online. Sure, there will be some of that. If I get a lot of requests, I can do more of that stuff. Whatevs.
But I want to be candid about life with AS. I want to talk about the initial dependence on EVERYONE YOU KNOW (and even strangers who you probably shouldn’t have asked for a ride when you ran out of gas on the highway but knew you’d rather be picked up, kidnapped, and never heard from again than walk a half mile just to carry a five-pound container of gas the whole half-mile back).
I want to talk about the indecencies, the triumphs, the rock-bottoms, and the impossibilities in selecting a mattress that won’t maul you in the night (pillow-tops are misleading; never trust them). And yes, even the difficulties of wiping your own ass. No one talks about that. Wonder why…
Also, curse words, swears, and really personal things. You’ve been warned.
I’ll talk about other things, too, because the thing others forget about when a loved one is saddled with a degenerative, disfiguring, disheartening disease is that there ARE other things going on in our lives. Thanks for asking. So I will talk about other things, too.
Have a story? Opinions? Need to vent and cry to the public sector? Let me know.
Also, don’t expect regular updates. I’ve got a lot of s’mores melting over the campfire right now.