👀 behind the scenes : it’s been so long since I posted to the grid. I don’t have anything cute to announce. I ate lunch outside today so in big recovery mode. A gigantic pile of boxes is hidden behind my body. I have both my knee compression sleeves on and a wrist compression sleeve. You can’t see my PICC line in my other arm because my body blocks itself with size. More flesh. My belly is visible all the time now and I am always in soft clothes. I can’t adapt anymore. The world has to adapt for me and that is rare, so I am at home. Grateful for friends who drive me places so I can see them 💜 who make the effort it requires to be near me by taking precautions and considering my needs—and the needs of other disabled people—when making decisions because I matter to them. It’s rare but I have this. All sick and disabled people deserve this care and intimacy. I’m also just trying to be more honest about my day-to-day life: the endless maintenance, expenses, rest it takes for me to do anything. It’s heavy. I’m officially asking for some joy, some relief, in any form you can offer. Thanks for reading and sitting with the discomfort. | #DisabledAndCute #NotACautionaryTale #DisabledNotDisposable
Sorry for being out of touch. Got diagnoses, getting medical care. Disabled pals know how exciting it can be to get answers after years of medical neglect and gaslighting about physiological illness followed by misdiagnosis and psych meds and denial and more neglect. Non-disabled folks: your sick friends are drained. We have to work so hard to get competent practitioners, any treatment, an actual care plan. Illness is not always curable or terminal. Since being vertical has been pretty much impossible for longer than a half hour and my spine is a bunch of gears grinding together with no cushion, I need IV fluids to function. For now. Looking into a more permanent setup than my nurse coming by at 1am to jab me, but for now I’m super grateful to have some care. | #DisabledAndCute #TheFutureIsAccessible #HospitalGlam
Jesse Rice-Evans 