Yesterday I could barely move. Bad nausea, pain, fatigue, had trouble getting through a couple of hours of work.

Today I haven't been back to bed since getting up, and, in fact, just got in a mile long walk in my favorite part of our neighborhood.

Lupus is so finicky.

#chronicillness #autoimmune #chronicallyill #chronicillnesshumor #chronicillnessmemes #autoimmunememes #fibromemes #fibromyalgia #spoonie #chronicillnesslife
#autoimmunelife #connectivetissue #lupus #mctd #rheumatoidarthritis #uctd #myosits #sjogrens

Letzten Freitag fuhr ich mit den Jungs nach Dänemark und wir verbrachten Pfingsten in der der Nähe von Sonderburg. Samstag waren wir hauptsächlich in Sonderburg unterwegs, erkundeten die Gegend, die Innenstadt, aßen leckere Burger und guckten uns ausserdem das Schloss in Augustenburg an. 
Unser Hauptziel war des Universe Wissenspark.
#Freitagszeuch #Lupus #chronischkrank #tagebuchbloggen #RA

https://www.lupus-live.de/?p=13884

I just discovered that The Lupus Foundation has removed all podcasts that could be construed as DEI. I went to share the episode on Lupus in the LGBTQ community and it was no longer there.

Also gone is the episode on The Impact of Racial Trauma on Mental Health and two others, one that explored the importance of diversity and research, and the other looking at implicit bias in the medical field.

1/2

Having a tough lupus day but my caregivers are on point!

Medscape (widely read by health professionals):

‘Symptom Invalidation’ in Clinically Uncertain Diagnoses Can Leave Lasting Mental Health Harms

https://www.medscape.com/viewarticle/symptom-invalidation-clinically-uncertain-diagnoses-can-2025a1000ewd
(may require free registration)

Thought this was good & interesting.

@chronicillness
@spoonies
#lupus @lupus #neisvoid
#chronicillness #hiddenillness #invisibleillness #ChronicIllnesses
#Spoonies #ChronicallyIll
#POTS @pots #IBS @ibs fibromyalgia@a.gup.pe
#Fibromyalgia #Fibro #FMS @longcovid #LongCovid @mecfs #MEcfs
1/

"A study involving over 3,000 participants – both patients and clinicians – found that ['psychosomatic'] misdiagnoses (sometimes termed “in your head” by patients) were often associated with long term impacts on patients’ physical health and wellbeing and damaged trust in healthcare services." #lupus #RA #autoimmune https://www.eurekalert.org/news-releases/1074887

As someone with #lupus, I have heard over & over how important consistent nutrition, water, testing are. Akram is trying to secure these things for his younger sister, Sarah, who has lupus—in a genocide.

Help them Give/find their individual campaign: https://tinyurl.com/HopeGivingCircle

I fumbled my auto injector and it started the auto part before I started the injection part and now my bedroom rug is immunocompromised.

Los nacionales Lupus estrenan video de “Caníbales”, y anuncian próximo show | vía #iRock

https://www.irock.cl/los-nacionales-lupus-estrenan-video-de-canibales-y-anuncian-proximo-show/?utm_source=rss&utm_medium=rss&utm_campaign=los-nacionales-lupus-estrenan-video-de-canibales-y-anuncian-proximo-show

Them: How much does it hurt?

Me: I dont know it just... hurts

Them: Do you take painkillers

Me: Not usually

Them: Well then it can't be that bad

Me: Well it is. But I am in bed with fatigue so the pain isn't really affecting me since it mostly hurts to move around. In Bed it's uncomfortable, not stopping me from doing anything.

Them: You need to get some excersise.

Me: If I excersise it hurts, and then the fatigue gets worse.

Them: Have you tried turmeric?

https://www.alojapan.com/1288226/aussie-falls-short-in-bid-to-spear-japanese-rugby-glory/ Aussie falls short in bid to spear Japanese rugby glory #BernardFoley #Japan #JapanNews #JapanRugbyLeagueOne #JapanTopics #LeagueOne #Lupus #news #QuadeCooper #RichieMo #SpearsFunabashi #ToddBlackadder #wallaby Richie Mo’unga has won the trans-Tasman battle of the Test fly-halves, his Brave Lupus Tokyo fending off Aussie Bernard Foley’s Spears Funabashi Tokyo-Bay 18-13 in the Japan Rugby League One final. The 31-year-old, lured to Fuchu by hi…

Tidy living room, fine
Spend 1.5 hours reorganising children's bedroom, fine.
Help child with writing, fine
Play in garden with children for an hour, fine

Wow I'm really having a good day today.

Go to the shop to buy bread, *fucks back*

Bed.

Hey peeps, got a little time to assist in some research? add your voice.
I've previously completed a survey and have confirmed with James and Melanie that it's OK to share on Mastodon.
Boosts appreciated.

#autoimmune #lupus #flare #IBD #RheumatoidArthritis #mctd #uctd #sjogrens #SystemicSclerosis #PolymyalgiaRheumatica #MultipleSclerosis #ThyroidDisease #AutoimmuneEncephalitis #AntiphospholipidSyndrome #Type1Diabetes

-message-
We’re now conducting a new survey, 'INSPIRE-Flare', to build

Before I got sick, part of my weekend ritual was making bread. My standard loaf was an oatmeal bread recipe that I got out of my much beloved 25 year old edition of the Mennonite cookbook, The More With Less Cookbook.

Yesterday, my Zojirushi bread machine arrived! I think I'll take it for a spin this weekend, and over time, hopefully learn to adapt our favorite recipe for a bread machine.

Stay tuned!

Me: I wonder why my stomach hurts
Methotrexate: that’s weird, I wonder what it could be?!

#chronicillness #autoimmune #chronicallyill #chronicillnesshumor #chronicillnessmemes #autoimmunememes #fibromemes #fibromyalgia #spoonie
#autoimmunedisease #autoimmunedisorder #lupus #rheumatoidarthritis #mctd #uctd #myositis #sjogrens #immunesystem