#sjogren's

[auntie-doom]

Cardiac surgeon: "There was more than one hole."

strongly recommend against dislocating additional rib when getting open heart surgery

recommend against having rib re-locate by having unadjusted bipap mask pressed to face and inflating lungs too much

also recommend against discovering new vomit-level meds allergies when coping with open heart surgery and rib trying to re-dislocate

Tristan's Fetch and Tug Buddy: "You went through open heart surgery on hard mode."

There's no place like home.

[renlo]

I have a mild autoimmune disease (Sjogren's), and the most limiting symptom I experience is fatigue. Even after 10 hours of rest and a nap, I'm sometimes exhausted midway through the day or after a brief outing.

That being said, I never regret going out to get some sunshine or spend time with friends! I just need more naps than most, I guess.

[mysandwichgiver]

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

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

[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!?

[rowingupstream]

One of the things that always reminds me that I have chronic pain is when it overpowers other things that I know should hurt. I was pouring myself tea while sitting in bed reading (I keep an electric kettle next to the bed for this purpose) and spilt boiling water all over my bare stomach. And it hurt. A lot. Still does an hour later. But I thought it was more important to strip the bed before it got to the matress cover instead of putting water or ice on the burn, because washing and hang drying the heavy matress cover makes my arthritic hands and wrists hurt so much - it was obviously preferable to endure the burn than put my hands through that.

And yet I usually consider my chronic pain mild or minor and something that doesn't really impede my life, even though I'm pretty sure most people would consider pouring boiling water on their bare stomach a rather major pain, and yet I think of it as less bothersome than my normal.

[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-support]

[cinnabadgr]

[chronicillnesshumor]

[doomedfromthewombfr]

My body’s favorite hobby? Gaslighting me into thinking I’m fine until I move. Then it’s like, ‘Haha, just kidding- suffer’

[rhiandoesfandom]

My eyes are really dry

They start to water

Me: it's like a treat

[obsidianwhipsers]

🎄 Newsflash: Not everyone is jingling all the way. For those of us living with mental illness, chronic illness, or both, the holidays can feel like an endurance test wrapped in tinsel and topped with guilt.

✨ If you’re struggling this season:

It’s okay if “merry and bright” isn’t in your vocabulary right now.

Canceling plans doesn’t make you a bad person- it makes you a human protecting your peace.

You’re allowed to prioritize survival over celebration.

💡 To everyone else:

Stop assuming the holidays are magical for everyone. They’re not.

Offer support, not judgment, when someone says they’re overwhelmed.

Don’t guilt people into participating- sometimes the best gift we can give is space to breathe.

🎁 The real holiday spirit? Empathy. Share it freely, especially with those quietly carrying more than their fair share.

Take care of yourselves, and remember: surviving is enough. ❤️

[mysandwichgiver]

Ack, the central heating is drying out my eyes 👀

[auntie-doom]

We gotta find out if looking for holes in the heart would help more of us, the dysautonomia and connective tissue disorder and long covid sufferers. (and more, and more)

This congenitally incomplete heart ("atrial septal defect," in my case), with just a little, diffificult-to-detect hole in it ("heart shunt"), is frequently comorbid with/possibly caused by connective tissue disorders.

(hmmmm, so is dysautonomia)

We all get our hearts thoroughly checked during diagnostics because heart damage could cause some of these symptoms. But they NEVER LOOK for this particular issue ("bubble test" during echocardiogram), because surely if you had a heart defect, it would have been found before now.

(I'm 45, by the way. This is the first year anyone has ever checked if I have a heart shunt. My POTS diagnosis was over a decade ago; they all assured me that my heart was completely normal.)

Even if you have a heart shunt, where blood leaks between heart chambers, well "20% of people have one, this isn't causing your (symptoms of heart damage)"

(how many of those 20% are *US*? Or people who could be US, if they had a virus hit just wrong, like Epstein-Barr/mono, flu, or.... *drumroll* covid?)

And how many times have you tried to get more fit, got to where you thought you could really do some of the activities you desperately wanted to do, and suddenly crashed? ... and then could never get to that level of fitness again? Like something was damaged further, like something inside broke a little more and your very best is now less than it was a week ago.

Or you had a physically difficult activity like moving house, and afterwards you were never as able as before the move, because maybe the extra bodily stress really did add a tiny tear to a tiny, minor, miniscule existing injury in just the wrong place.

Or you just suddenly couldn't do the same amount of activity any more, out of the blue, because something damaged your heart a touch more but they assured you your heart was solid, it's just the dysautonomia.

More than one hole. I've been walking around with more than one hole in the inner walls of my heart. ToShredsYouSay.jpg

Before surgery on Oct 2, I was walking 3 steps at a time then resting for hours. Yesterday, Oct 13, my fitbit recorded 4221 steps. How far will I improve? How much of my dysautonomia symptoms, how much of my fatigue and pain, was

A FUCKENING HOLE IN MY HEART??

Cardiac surgeon: "There was more than one hole."

strongly recommend against dislocating additional rib when getting open heart surgery

recommend against having rib re-locate by having unadjusted bipap mask pressed to face and inflating lungs too much

also recommend against discovering new vomit-level meds allergies when coping with open heart surgery and rib trying to re-dislocate

Tristan's Fetch and Tug Buddy: "You went through open heart surgery on hard mode."

There's no place like home.

[rowingupstream]

Sjogren's is: realizing your chicken is steaming hot and instead of blowing on each bite, holding each bite up to your eyes for a few seconds so the steam moisturizes them.

[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.