#systemicsclerosis — Public Fediverse posts

Beautifully written, and deeply resonating.
The long middle of a chronically terminal illness is a rough one to endure, traverse, witness, accept, and talk about.

https://www.theguardian.com/society/2026/mar/22/i-have-stage-four-cancer-there-will-be-no-cure-but-death-isnt-necessarily-imminent-this-is-how-it-feels-to-live-in-the-long-middle

#SystemicSclerosis #ILD and #KidneyDisease is my long middle, on top of #BreastCancer survivor-ness, with scanxiety every few months - blood & kidney tests, CT scans, digestion tract monitoring. I'm not yet at dialysis, but know it's not too far away.

Beautifully written, and deeply resonating.
The long middle of a chronically terminal illness is a rough one to endure, traverse, witness, accept, and talk about.

https://www.theguardian.com/society/2026/mar/22/i-have-stage-four-cancer-there-will-be-no-cure-but-death-isnt-necessarily-imminent-this-is-how-it-feels-to-live-in-the-long-middle

#SystemicSclerosis #ILD and #KidneyDisease is my long middle, on top of #BreastCancer survivor-ness, with scanxiety every few months - blood & kidney tests, CT scans, digestion tract monitoring. I'm not yet at dialysis, but know it's not too far away.

Beautifully written, and deeply resonating.
The long middle of a chronically terminal illness is a rough one to endure, traverse, witness, accept, and talk about.

https://www.theguardian.com/society/2026/mar/22/i-have-stage-four-cancer-there-will-be-no-cure-but-death-isnt-necessarily-imminent-this-is-how-it-feels-to-live-in-the-long-middle

#SystemicSclerosis #ILD and #KidneyDisease is my long middle, on top of #BreastCancer survivor-ness, with scanxiety every few months - blood & kidney tests, CT scans, digestion tract monitoring. I'm not yet at dialysis, but know it's not too far away.

Beautifully written, and deeply resonating.
The long middle of a chronically terminal illness is a rough one to endure, traverse, witness, accept, and talk about.

https://www.theguardian.com/society/2026/mar/22/i-have-stage-four-cancer-there-will-be-no-cure-but-death-isnt-necessarily-imminent-this-is-how-it-feels-to-live-in-the-long-middle

#SystemicSclerosis #ILD and #KidneyDisease is my long middle, on top of #BreastCancer survivor-ness, with scanxiety every few months - blood & kidney tests, CT scans, digestion tract monitoring. I'm not yet at dialysis, but know it's not too far away.

Beautifully written, and deeply resonating.
The long middle of a chronically terminal illness is a rough one to endure, traverse, witness, accept, and talk about.

https://www.theguardian.com/society/2026/mar/22/i-have-stage-four-cancer-there-will-be-no-cure-but-death-isnt-necessarily-imminent-this-is-how-it-feels-to-live-in-the-long-middle

#SystemicSclerosis #ILD and #KidneyDisease is my long middle, on top of #BreastCancer survivor-ness, with scanxiety every few months - blood & kidney tests, CT scans, digestion tract monitoring. I'm not yet at dialysis, but know it's not too far away.

If you have had an iron infusion … what should I expect afterwards?

Got hematology finally booked for end October through a special booking website for the whole of Germany with a ‘vermittlungscode’ (priority code) from the GP as the iron anaemia is not resolving with ingested rust (years now… is a sclerosis thing). The folate anaemia came good with tablets.

The site booked the same place that said they can’t take new patients at the start of the year (didn’t have a special code back then). Hah. This amuses me.

#SystemicSclerosis #Scleroderma #Spoonies #ChronicIllness

Posting this so people with similar interests can find me:

#literature #books #vegan #achalasia #scleroderma #SystemicSclerosis #France #french #SGA #Stargate #scifi #ComputerHistory #History of #ComputerScience, #Aviation & #Medicine #NaturalHistory
#NaturalDisaster #FrenchHistory #Lapérouse #colonialism #Hispaniola #slavery #enlightenment #WWII #Holocaust #Todoist #bujo #bulletjournal #journaling #arthistory #surrealism #cubism #ForgottenVegetables #drawing #Chumbawamba