#kprghglam

[hospitalglam]

#HospitalGlam: We started fine tuning my brain today. Not having to worry about giant health issues on top of being disabled is something I need to relearn how to navigate. It's been awhile. When I got sicker, I knew that if it ended it meant going back to a separate level of disability. I didn't know how long it would last or how I might feel once it was over. Along the way, I discarded the notion that it would end. It is hard to admit that. This period of adjustment, of relearning limits, feels like revisiting my initial diagnostic process, with a tinge of wisdom and a hell of a lot more community support. Thanks for every note. You have no idea how much they've meant. #neurology #ehlersdanlosgrrrls #rarediseaseday #disability #invisibleillness #goodbyetumor

[hospitalglam]

I recently had the pleasure of being interviewed by Lauren Marie Fleming for her Bawdy Love podcast. We talked about #HospitalGlam, spatial politics, accessibility, media, relationships and body image. It was a really great talk and I hope you listen.  You can listen below, or subscribe via itunes or stitcher. 

[hospitalglam]

Holiday #hospitalglam hopes: seeing my doctors less and my friends more 🌟 Wishing my friends in the #disability + #chronicillness communities the same.

[hospitalglam]

This week, my close friend Mandy spent a few days at my place to avoid contracting a normal-human-virus at hers. We did our own work, watched the sun set every evening, and generally did some excellent low key supporting and loving each other as we dealt with our body stuff and life stuff. I changed the dressing on her PICC line, which scared me more than any medical procedure I've had done to me. It's harder to handle the stress when doing it for a friend than yourself. Later that night, we watched the sun set again and drove out to Malibu with the windows down, blasting music we're both currently obsessed with. We sat on the beach beneath the stars, laughing until a rogue wave soaked us. It was thoroughly great. The thing doctors forget, and friends forget and even we forget sometimes is this: We’re trying to live, not just survive. 

Sometimes we get that, and it's glorious.

[hospitalglam]

#HospitalGlam: I’ve been asked to do an #EhlersDanlosGrrrls* roll call to help people connect with each other and grow their IRL support systems. This is happening primarily on Instagram, but if you want to reblog here and stick info in the tags, that’s great too. 

The important thing is to find people whose interests and experiences outside of disability overlap with yours. Those will be the people you stick with for years. Love and be loved for who you are, because you’re great as is. 

*hashtag explanation at Instagram link. Really, if you can relate to it, post. This is not intended to be gender specific. It is intended to denote a progressive, queered pov. IG is popping off with all sorts of people+DX , so get over there + get your squad going.

[karolynprg]

#hospitalglam: This Summer I haven’t done very well at staying upright. Let’s hope this trend reverses itself soon.

[hospitalglam]

Invisible disability makes for inverted lives #HospitalGlam

[hospitalglam]

FYI This is what a bad bitch looks like after a brain MRI. #HospitalGlam