hyper by extension

It’s 2022. Let’s catch up.

This little painting is in the NYT today alongside the work of so many people I admire, including some I’m lucky to call friends. Thank you @TipsyTullivan + Khadijah Queen, for putting together this folio of poetry. https://www.nytimes.com/2019/05/19/opinion/disability-poems.html https://www.instagram.com/p/BxqDVEzA4SD/?igshid=l054l9hkg1xy

I specify both #ChronicIllness and #disability because the former is part of the latter, and many people think they shouldn’t ID as #disabled or have difficulty finding their place within the community. Recognizing that your ability level fluctuates does not shut you out. Most of ours do. While not all chronic illnesses are consistently disabling, if you have one, you have likely needed the protections afforded by the #ADA. Chronic illnesses are #InvisibleDisabilities. You belong. #HospitalGlam https://www.instagram.com/karolynprg/p/Bwhy688gnox/?utm_source=ig_tumblr_share&igshid=o29oo8505lsa

When I talk about #Hospitalglam, and healthcare being a luxury good, I’m referencing the absurdity of needing to pay down necessary procedures and treatments for years, through collections, making the worst bargains, because the other option is giving our LIFE. Not the social or perceived life, which we give anyway to illness, but our beating heart. We get layaway plans and collection plans and things to keep us under the water but gasping for that life we might have again. Beauty sells our bodies back to us, at a premium none of us can afford. Through creating our own images; through recreating the visibility of disabling illness, we can take the reigns even from our gurneys. Fuck this Shit let us live https://www.instagram.com/karolynprg/p/Bvz9iADHL2I/?utm_source=ig_tumblr_share&igshid=1rnqoylqw5i3o

#Hospitalglam: I had an echocardiogram this morning, at the big LA hospital I go to which feels like my home because I’m always there and almost everybody is so great with me. The receptionist checking me in said I had a great aura, and raved about my @marinafinionme earrings. I smiled and was happy when the tech called me in a few moments later. She was warm and we talked easily about patient agency and how hard it was to be seen; as a chronic patient, as a woman. She told me how much she felt it was an exchange of information and energy- that she learned from her patients- and that she was so happy to be there with me, as she moved an instrument over my heart to chart its rhythm. It’s hard to be disabled and navigate the medical system, especially in the US, but I am so grateful for the time I get to spend with caregivers like the one I had today, where I barely noticed the procedure due to the amazing connection I had. In this photo, I was not paying attention to the photo over the conversation I was having. It was incredible and I can only hope I cross paths with this amazing person again. #ehlersdanlosgrrls #echocardiogram #cardiology #chronicillness https://www.instagram.com/karolynprg/p/BvkgSFGnIgn/?utm_source=ig_tumblr_share&igshid=10ewwse6tb44b

I left LA a while ago, after some follow up tests that let me know I’d be better off taking a break from my immediate environment. I hope your holiday season keeps you out of harm’s way. Thank you to everyone who participates in #HospitalGlam, and finds better care through it. I hope 2019 is good to us all. https://www.instagram.com/p/BroWLnEntoz/?utm_source=ig_tumblr_share&igshid=1ismcz5vuumjv

Spending time with my siblings this month. #tbt #twins #bangsforever (at Houston, Texas) https://www.instagram.com/p/BrUA4ZvnyG9/?utm_source=ig_tumblr_share&igshid=17cvsry0om6fm

December 3rd is the International Day of People with Disabilities. Sometimes it feels like we’re speaking to an empty room. Listen to the expansive disability communities and you will find liberation for us all. We’re everywhere. #IDPWD #IDPD #IDPWD2018 #IDPD2018 https://www.instagram.com/p/Bq8yOr0HEkG/?utm_source=ig_tumblr_share&igshid=1tw9rtp1l9r4l

‘4:30am ambulance to a new ER to explain my medical history and current symptoms to new docs’ vibe coming in strong #hospitalglam [#imagedescription: I’m wearing a green and blue hospital gown + a yellow mask on a blue-sheeted gurney.] https://www.instagram.com/p/Bq2R_ElHNLc/?utm_source=ig_tumblr_share&igshid=ow1qu8jd4lkh

I’m so thankful for the support you give to HospitalGlam and the thousands of people who participate in it. Today I’m thankful that my health isn’t as bad as it was when I began the project, and that I can spend more time outside of clinical spaces. I am always advocating for chronically ill and disabled people wherever I am. I would appreciate your continued support while I navigate these uncertain avenues. Thank you again. [#imagedescription: selfie of an invisibility #disabled woman, looking at you, asking you to love her.] #nottinghill https://www.instagram.com/p/BqgTJZKn5oN/?utm_source=ig_tumblr_share&igshid=gab1wlpznhk6

Thankful I’m not here today. A day without posting #HospitalGlam is a good one. Wishing the best possible day to you & yours, wherever you are. [#imagedescription: #tbt selfie from a stress test, in a hospital gown, strapped to the hilt, eyes closed, lavender lipstick, preservation blonde braids.] https://www.instagram.com/p/BqgA-Ian2-W/?utm_source=ig_tumblr_share&igshid=1wvqvjnu7bf6w

Reminder: we’re currently in the abbreviated open enrollment period for 2019 healthcare plans. It will end December 15th. Go to https://www.healthcare.gov to sign up. —— #HospitalGlam #Healthcare #ACA #Reminders [#imagedescription: I’m standing against the wall in a clinic room, on the wrong side of a pulled back privacy curtain.] https://www.instagram.com/p/BqIP-gJHcO0/?utm_source=ig_tumblr_share&igshid=wmi76mce21xd

Beauty is an anesthetic// Wellness is a commodity// Be who you are and take up your space #HospitalGlam [#imagedescription: I’m clad in black with blue lips on a medical bed. My gaze is directed towards someone offscreen. Yours is directed at me.] #disabled #saytheword #disabledandcute #invisibleillness https://www.instagram.com/p/Bp_U6F7HJpp/?utm_source=ig_tumblr_share&igshid=1oy2arlizdwie

I voted by mail this year to make sure I didn’t encounter extra barriers in case I was really sick, or had to be in the hospital today. Luckily I’m not, but this is how I #CripTheVote. (at Los Angeles, California) https://www.instagram.com/p/Bp2c589nI6H/?utm_source=ig_tumblr_share&igshid=7vwkmmioon1s

At the #DisabilityImpact #coelhocenterlls conference with @arabellesicardi [#imagedescription: two femmes posing for a photo at the end of a conference, next to a rollator holding blue bags.] (at Loyola Marymount University) https://www.instagram.com/p/Bp00OMgHKqw/?utm_source=ig_tumblr_share&igshid=1tygmccck8b4