#systemicsclerosis — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #systemicsclerosis, aggregated by home.social.
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CW: Chronic &, terminal illness - well-written news article
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.#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.
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“I really can’t recommend systemic sclerosis as a preventative.”
I was explaining how SSc messes with collagen and causes fibrosis inside and she made the link with far too much wonder and glee “that’s why you have no wrinkles!”
#SystemicSclerosis #autoimmunedisease #spoonies #ChronicIllness
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CW: Financial and physical ouch expected
Not a welcome Christmas present - not welcome at any time - failed roadworthy ‘cos steering bearings are shot. Geordie passed its annual physical only a couple of months ago though! (That’s not on the check list)
Glad it was caught before any accident. But this does mean I now need to walk to physio tomorrow - about 3 months sooner than the training plan. And walk back home. Eeep.
Will take it slowly, and clear the calendar for several days.
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CW: Health - iron infusion question
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.
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CW: Health - medication question, migraine
I hesitate to ask, but doc has prescribed me a new painkiller - a step up from the novamin drops I used for migraines but have stopped working after menopause. (Codeine hasn’t worked for years)
Does anyone have experience with tilidine? (with naloxone in the same tablet)
Does it hit the kidneys?
Or cause constipation?*nervous about this one*
#spoonies #migraine #ChronicPain #PsoriaticArthritis #SystemicSclerosis
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CW: Health - it’s so rarely if ever “in your head”
Chalk another one up for “it’s not in your head”.
Have had systemic sclerosis as well as the spondy since I was a kid, when Reynaud’s first appeared. It’s only now starting to distort my mouth, which is why the rheumy noticed it. Clearly visible in lung scans now too - cell culture will determine an appropriate inhaler.
10 years for an #endometriosis diagnosis, 30 for #spondyloarthritis, 40 for the #SystemicSclerosis. All of which so many doctors and specialists told me “you’re imagining it”.
What made the hindsight diagnosis clearer? A concept map of everything grouping related symptoms/diagnoses and a timeline of the same. Rheumy wants to use them with her student docs.
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New:
From Viral Infection to #Autoimmune Reaction: Exploring the Link between Human Herpesvirus 6 & Autoimmune Diseaseshttps://www.mdpi.com/2076-2607/12/2/362
#HHV6 #autoimmunity #autoimmune #multiplesclerosis #systemicsclerosis #inflammatoryboweldisease #autoimmunethyroiditis #MEcfs #CFS
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Want to make a real-world impact? Join our team for a groundbreaking #PhD opportunity in #SystemicSclerosis. Develop a new diagnostic tool & improve treatment for 20,000+ affected in the UK. Aligns w/EPSRC & NIHR. Apply now! #Research #Healthcare #robotics #engineering https://www.lboro.ac.uk/study/postgraduate/research-degrees/phd-opportunities/robotic-skin-tester-for-systemic-sclerosis/
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Hi, I'm Kym (aka Seirff) - an always cold fire #dragon.
Work: #Freelance #techwriter with a computer science degree, #ghostwriter, #editor & #proofreader, #translator (DE>EN), & former #ESL teacher. I write and draw diagrams at drawio.com.
Open for new clients, especially academic, and diagramming topic requests for the #drawio blog.
Where: Living in #Leipzig, Germany, after a short stay in #Fukushima, Japan. Originally from #Melbourne, Australia.
Owned by two big fluffy Maine Coon #cats, whose fur is the bane of my and their existence.
On the rooftop balcony I grow as much food as possible with a black thumb - #gardening.
Eternally curious, I share my learning process, crafting, art process and deep thoughts about tricky topics with #Patreon members.
Woven items and art, #ESLteaching and learning materials and tips are available over on #KoFi.
Many hobbies - #languages, #art, #piano, #cello, #guitar, #gaming, #sewing, #xstitch, #tapestry, #yarn crafts like #crochet, #knitting, #weaving & #spinning.
Occasionally also #3dPrinting & #MiniPainting.
Gentle persistence is my mantra - #spondyloarthritis / #PsoriaticArthritis, #SystemicSclerosis, #endometriosis, complex #PTSD, #BreastCancer survivor, #migraine monster - a collection of #ChronicIllness. I rant about the health system and incompetent doctors. #spoonie
I want to read your toots, not go down the boost content rabbit hole.
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CW: Just a bunch of tags
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