#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.

Just two mornings of light strength training, radio taisho movements and tai chi warmups, and omgowhowamigoingtogetthroughtheday?!

Yes, this is normal for me - muscle and tendon and bursa inflammation cause painful overreactions to exertion (in addition to the PEM fatigue/exhaustion). Docs usually say stop when they see/feel the inflammation and cramping, but this time, ortho wants me to push through it and continue as intensively as possible - her theory is doing something different may have a different (better?) outcome.

Holding an experiment mindset is much harder in the midst of this pain.

#spondyloarthritis #systemicsclerosis #spoonies

Just two mornings of light strength training, radio taisho movements and tai chi warmups, and omgowhowamigoingtogetthroughtheday?!

Yes, this is normal for me - muscle and tendon and bursa inflammation cause painful overreactions to exertion (in addition to the PEM fatigue/exhaustion). Docs usually say stop when they see/feel the inflammation and cramping, but this time, ortho wants me to push through it and continue as intensively as possible - her theory is doing something different may have a different (better?) outcome.

Holding an experiment mindset is much harder in the midst of this pain.

#spondyloarthritis #systemicsclerosis #spoonies

Just two mornings of light strength training, radio taisho movements and tai chi warmups, and omgowhowamigoingtogetthroughtheday?!

Yes, this is normal for me - muscle and tendon and bursa inflammation cause painful overreactions to exertion (in addition to the PEM fatigue/exhaustion). Docs usually say stop when they see/feel the inflammation and cramping, but this time, ortho wants me to push through it and continue as intensively as possible - her theory is doing something different may have a different (better?) outcome.

Holding an experiment mindset is much harder in the midst of this pain.

#spondyloarthritis #systemicsclerosis #spoonies

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.

#spoonies #SystemicSclerosis #spondyloarthritis #lipedema

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.

#spoonies #SystemicSclerosis #spondyloarthritis #lipedema

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.

#spoonies #SystemicSclerosis #spondyloarthritis #lipedema

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.

#spoonies #SystemicSclerosis #spondyloarthritis #lipedema

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.

#spoonies #SystemicSclerosis #spondyloarthritis #lipedema

One of the anxiety-inducing appointments down. I’ve had to bully for care on this previously.

Apparently, covid can continue affecting the bowel for a year or more after infection - in my case, softness has helped reduce bleeding, which is good! But any massive change in consistency is worrying with SSc.

So they want to do a full from mouth-to-out test with biopsies the whole way - SSc increases cancer risk, and as symptoms have gotten worse. Normally with SSc - colonoscopies every 5 years, gastroscopies every 2-3 because of the cancer risk and increased swallowing problems.

But this time, I only need to go under once early next year - they’ll do both ends at the same time!

May be TMI, but this amused me.

#SystemicSclerosis #Cancer #ChronicIllness #spoonies #covid

One of the anxiety-inducing appointments down. I’ve had to bully for care on this previously.

Apparently, covid can continue affecting the bowel for a year or more after infection - in my case, softness has helped reduce bleeding, which is good! But any massive change in consistency is worrying with SSc.

So they want to do a full from mouth-to-out test with biopsies the whole way - SSc increases cancer risk, and as symptoms have gotten worse. Normally with SSc - colonoscopies every 5 years, gastroscopies every 2-3 because of the cancer risk and increased swallowing problems.

But this time, I only need to go under once early next year - they’ll do both ends at the same time!

May be TMI, but this amused me.

#SystemicSclerosis #Cancer #ChronicIllness #spoonies #covid

One of the anxiety-inducing appointments down. I’ve had to bully for care on this previously.

Apparently, covid can continue affecting the bowel for a year or more after infection - in my case, softness has helped reduce bleeding, which is good! But any massive change in consistency is worrying with SSc.

So they want to do a full from mouth-to-out test with biopsies the whole way - SSc increases cancer risk, and as symptoms have gotten worse. Normally with SSc - colonoscopies every 5 years, gastroscopies every 2-3 because of the cancer risk and increased swallowing problems.

But this time, I only need to go under once early next year - they’ll do both ends at the same time!

May be TMI, but this amused me.

#SystemicSclerosis #Cancer #ChronicIllness #spoonies #covid

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

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

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

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

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

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

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

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

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

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

My habit of reading deeply into medical journals is definitely provoking mountains of anxiety around the systemic sclerosis. But it is also confirming many of my gut feels.

Yes, the triple virus start to this year, particularly the final covid infection (from the dentist), triggered progression in the ILD component of the sclerosis so that it is easily seen on a CT scan. Thankfully, kidneys and heart remained stable.

https://journal-inflammation.biomedcentral.com/articles/10.1186/s12950-023-00362-x

#SystemicSclerosis #covid #autoimmune #rheumatology #spoonies

My habit of reading deeply into medical journals is definitely provoking mountains of anxiety around the systemic sclerosis. But it is also confirming many of my gut feels.

Yes, the triple virus start to this year, particularly the final covid infection (from the dentist), triggered progression in the ILD component of the sclerosis so that it is easily seen on a CT scan. Thankfully, kidneys and heart remained stable.

https://journal-inflammation.biomedcentral.com/articles/10.1186/s12950-023-00362-x

#SystemicSclerosis #covid #autoimmune #rheumatology #spoonies

My habit of reading deeply into medical journals is definitely provoking mountains of anxiety around the systemic sclerosis. But it is also confirming many of my gut feels.

Yes, the triple virus start to this year, particularly the final covid infection (from the dentist), triggered progression in the ILD component of the sclerosis so that it is easily seen on a CT scan. Thankfully, kidneys and heart remained stable.

https://journal-inflammation.biomedcentral.com/articles/10.1186/s12950-023-00362-x

#SystemicSclerosis #covid #autoimmune #rheumatology #spoonies

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.

#ChronicIllness #spoonies

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.

#ChronicIllness #spoonies

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.

#ChronicIllness #spoonies

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.

#ChronicIllness #spoonies