#scleroderma — Public Fediverse posts

A poemly. #poem #processing #chronicillness #scleroderma

The unwanted passenger/party guest. A blogly post. #scleroderma #processing #disability
https://storyrainthejournal.dreamwidth.org/602776.html

Just came from my last wound care appointment for now. Fingers not completely healed, but out of danger, and I know how to go on caring for them. I want to be all yay! Last wound care appointment! But honestly I am sad, and wish I felt like I had more to look forward to than being careful of my guts and fingers and hoping my lungs don’t get worse. Working on it, I am. Some days I feel more grace and hope than others. Anyway, have a pic of my puppet corner. #scleroderma #processing

Another how I am doing entry, for those interested. #chronicillness #scleroderma #processing https://storyrainthejournal.dreamwidth.org/602276.html

Well, a poem.
#processing #scleroderma #poem #chronicillness #disability

I have just been to wound care. Ouch is me. Hand surgeon consult: Yeah, there's not much we can really do; slow, incremental progress is the best we can hope for with scleroderma. After, I had a hot cake with strawberries. Here is Scaramouche, who is an excellent nurse cat. #scleroderma #chronicillness #catsofmastodon

Well, finished first course of the rifaximin, didn’t make it a full night before cramps, nausea, shaking, faintness, and diarrhea came back after not taking it. So, at least the insurance thing got worked out, I got the pills (for $75) and have started the second course. And my sister is here to help me.
But, seriously, ugh. And fuck scleroderma. #scleroderma #chronicillness

Wound care hurts; hands are useful and it's hard when they're not easy to use; guts are important and it sucks when they are broken. Here is Scaramouche, a cat. She is awesome.#scleroderma #chronicillness #catsofmastodon

Hi Mastadon. I've been in the hospital for the last week and a day, finally got home last night. Never got the Mastadon app to work so no updates to you all. I am at about 50%, maybe, in recovery. Going slow. #Scleroderma sucks. Insurance (I'm looking at you UHC Medicare) SUCKS. Most thankfully, I have a robust friend/family support system that has rallied around me. Send me all your love and hugs, okay?

Still having a very hard time, hand-wise, anxiety wise. But here’s some sky. Please send hugs and good thoughts. #scleroderma #chronicillness

My hands are effed up, on fire, in pain, and anxiety is winding through me, but this cat, this cat I’ll stick around for. #scleroderma #chronicillness #catsofmastodon

DID YOU KNOW?
🔹️25 million people suffer from PH in 🌎?
🔹️3 in 4 pts have advanced dz by the time of dx
🔹️cost of therapies $100k/yr
#phaware #RareDiseaseDay #ShowYourStripes #ShareYourColours
---
RT @PHAssociation
More than 25 million people in the U.S. and 300 million people worldwide are impacted by a rare disease. #Pulmonaryhypertension is often associated with other #rarediseases such as #scleroderma, #HHT, idiopathic #pulmonary…
https://twitter.com/PHAssociation/status/1630572366739718146

DID YOU KNOW?
🔹️25 million people suffer from PH in 🌎?
🔹️3 in 4 pts have advanced dz by the time of dx
🔹️cost of therapies $100k/yr
#phaware #RareDiseaseDay #ShowYourStripes #ShareYourColours
---
RT @PHAssociation
More than 25 million people in the U.S. and 300 million people worldwide are impacted by a rare disease. #Pulmonaryhypertension is often associated with other #rarediseases such as #scleroderma, #HHT, idiopathic #pulmonary…
https://twitter.com/PHAssociation/status/1630572366739718146

DID YOU KNOW?
🔹️25 million people suffer from PH in 🌎?
🔹️3 in 4 pts have advanced dz by the time of dx
🔹️cost of therapies $100k/yr
#phaware #RareDiseaseDay #ShowYourStripes #ShareYourColours
---
RT @PHAssociation
More than 25 million people in the U.S. and 300 million people worldwide are impacted by a rare disease. #Pulmonaryhypertension is often associated with other #rarediseases such as #scleroderma, #HHT, idiopathic #pulmonary…
https://twitter.com/PHAssociation/status/1630572366739718146

DID YOU KNOW?
🔹️25 million people suffer from PH in 🌎?
🔹️3 in 4 pts have advanced dz by the time of dx
🔹️cost of therapies $100k/yr
#phaware #RareDiseaseDay #ShowYourStripes #ShareYourColours
---
RT @PHAssociation
More than 25 million people in the U.S. and 300 million people worldwide are impacted by a rare disease. #Pulmonaryhypertension is often associated with other #rarediseases such as #scleroderma, #HHT, idiopathic #pulmonary…
https://twitter.com/PHAssociation/status/1630572366739718146

DID YOU KNOW?
🔹️25 million people suffer from PH in 🌎?
🔹️3 in 4 pts have advanced dz by the time of dx
🔹️cost of therapies $100k/yr
#phaware #RareDiseaseDay #ShowYourStripes #ShareYourColours
---
RT @PHAssociation
More than 25 million people in the U.S. and 300 million people worldwide are impacted by a rare disease. #Pulmonaryhypertension is often associated with other #rarediseases such as #scleroderma, #HHT, idiopathic #pulmonary…
https://twitter.com/PHAssociation/status/1630572366739718146

For #FungiFriday have a looksie at the time a few weeks ago when I found a bunch of Onion Earthball (#Scleroderma cepa) #mushrooms! Here's one I was documenting for #iNaturalist that *spontaneously* exploded ashy black spores all over my arm and chest (not in the face, thankfully😅).

Link to observation: https://www.inaturalist.org/observations/141276167

#science #iNat #NaturalistsOfMastodon #Naturalists #puffballs #boom #poof #ParticipatoryScience #California #Monterey #spores #FieldWork #volunteering #FollowFriday