#Sjogren's syndrome

[mysandwichgiver]

Hey y'all, today is World Sjogren's Day.

We are many, and we are lobbying for awareness, better treatments, and more research!

[agentem]

what if everyone just slept when they were tired?

i mean, the current system of getting 8 hours isn't "normal" in the sense it's not the only way people have rested over time and cultures. medieval people had two chucks of sleep in early evening and then toward the morning. some people take naps after lunch regularly.

... but like, what if we are all individuals and our bodies have different needs and what if we all just slept when we were tired? what would the world be then?

[xerospaced]

So I get these autoimmune hives that are only present on my neck and when they come they burn like fire, itch like crazy and are soothed by nothing.

I've not had any this year that I can recall. Until a few weeks ago. It didn't surprise me too much coz I've had various symptoms over the past month which have indicated that I am experiencing an autoimmune flare up just relatively low key and slow manageable symptoms that have passed after a few days/a week.

But these hives are NOT leaving! Usually, two weeks, it passes. But it just keeps going. And last night I noticed it was spreading even further.

So I guess ima have to visit the GP on Monday and be like "yo, fucken, help me!" Coz antihistamines and salves are doing fuck all for it and I need it to END.

Tho I doubt they'll be able to do much for me since it's literally caused by my immune system attacking my skin which... how do you even stop that!?

[cinnabadgr]

[spookysalem13]

I'm chronically ill. I'm disabled physically and mentally. I live a rough life from day to day. People always tell me how strong I am.

This may be with the best of intentions but in all honesty I'm not strong, I'm very weak from being broken down every single second of my life from my chronic illnesses.

I don't get to live my life, I'm surviving not thriving.

[spoonie-on-wheels86]

[chronicillnesshumor]

[rhiandoesfandom]

My eyes are really dry

They start to water

Me: it's like a treat

[poseidonsworst]

I'm gonna do it. I'm gonna become a tea snob!!

10 minutes later

damn this oolong dry as fuck and kinda tasteless. guess I'm ruining the next steep with milk and sugar...

[somewhatstationary]

As a transmasc nonbinary person, it’s strange seeing how gendered the autoimmune spaces are online. Like, damn I’m already dealing with a debilitating illness, do I really gotta get dysphoria out of it too while I’m blasted with girl power woman warrior posts?

(It’d almost be worth academic inquiry if I had the energy lol)

[creepyscritches]

Getting an adulthood diagnosis for something that's been present since early childhood is sooooo fucking 👁️👁️ there's catharsis sure yeah but the struggle comes from trying to forgive your child self for failures you weren't really having.

Anyway shout out to my autoimmune girlies. Who else got shamed for early childhood cavities and expensive adolescent surgeries only to find out as an adult you are full of mouth-ruining antibodies lol. Girlies who else is unpacking their "chronic illness bad teeth = shameful moral failing" buuuullshit? Anyway I'm still trying to save $16,000 to fix fucked teeth I thought I brought on myself, but only discovered in 2023 were due to medical study candidate levels of sjogrens antibodies and severely medically mismanaged sle 🤪

[spookysalem13]

Just a fellow spoonie 🥄 here to share a relatable hilarious 😄 video.

Being chronically ill, you have to learn to find the humor in your diseases. For me, it's a major way I get by day to day.

This made me smile, I hope it can make you smile as well.

[spoonie-on-wheels86]

[southie187]

The last day of February is Rare Disease Awareness day and the month is also considered to be Rare disease awareness month.

It also happens to be the month that the love of my life was born.

Please, never take yall health for granted and be grateful for every healthy day you have. So many people out here are battling diseases you have never heard of, dealing with the physical and mental exhaustion, pain and often hopelessness that come along with it.

If you have the time, try to educate yourself about some of the rare diseases that affect millions. My wife had Scleroderma, Sjogrens, Raynauds etc. She passed away at the young age of 31, after battling her illness for 16 years. More than half her life was spent in and out of hospitals and Drs offices.

She was a person with dreams, goals, hopes and aspirations. When faced with the reality that many of things she dreamed of or wanted to do may not be attainable due to her declining health she shifted her energy to spreading awareness and being there for others who were fighting their diseases and who felt lonely and hopeless.

My goal is to continue to spread awareness and tell her story. I pray that with more funding and research eventually a cure or treatment will be found.

Peace and Love

[shortaspoon]

Turns out that I not only have fibromyalgia but also POTS, and lupus and Sjogren’s and non radiographic axial spondyloarthritis. Plus the bulging C5/6 and 6/7 discs and lordosis in my lower back. My year is off to a bang.