#sjogrens

[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.

[4spooniesupport]

[yoikami]

fucking stop giving disabled people healthy people expectations.

Stop telling us more sport will make us lose weight or be healthier, our bodies do not function regularly anymore and should not be treated without accomodations, moderations and care.

Stop fantasizing that efforts always bring good results, learn about listening to your body.

We function differently and should receive different care methods, and none of your half-assed misinformed ideas that mostly apply to able bodied people.

Our progress is never enough for you, our happiness is less important than your views on what's best for us. Stop ignoring our limitations only to complain our health is stagnating when we push harder.

Stop thinking less struggles or improvements mean we can go back to a trouble-free or pain-free life. We'll just step back again if we get treated "normally" in your invalidating sense of normal.

Accept that our normal is different and deserves to be acknowledged and treated as such.

We shouldn't be held to the same standards as someone who's able to live their life without needing to slow down, stop, recover and crash down or full on break down when it's too much.

[inkdandimpulsive]

Me reading the common side effects of the new meds I was prescribed:

[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.

[chronicillnesshumor]

[found on Etsy as mug, tee, and hoodie https://tinyurl.com/yc2cnd8s ]

[notjustanyannie]

My therapist keeps telling me I need to get out and do things. I say I’m too exhausted and everything hurts.

“Why are you so tired?

Idk, maybe because I have exhausted disease (cfs/me), pain with exhaustion disease (fibromyalgia), autoimmune with exhaustion disease (Sjogren’s), disordered sleeping and a bunch of other diseases with pain and exhaustion?

“But doing things will make you feel better”.

No, it usually makes me more exhausted and with added pain. It takes days to recover from a simple drs visit.

It’s like they think I want to stay in bed all the time, watching my life go by.

[wuppydog]

ok so this might be really specific to just me idfk

but does anyone else diagnosed with Sjögren’s Syndrome have these moments where your mouth is super dry and you go to swallow what little spit is in there & it’s like your throat closed up & it feels impossible to swallow & like you’re either gonna choke or suffocate until you then take a drink of something & then it’s fine?!

bc that’s been happening to me a lot lately (been taking my thorazine more frequently & a major side effect is dry mouth so it’s made my Sjögren’s flare up really badly).

it gives me so much anxiety & I have a mini panic attack every time it happens bc it literally feels like I’m gonna die cause I can’t swallow, thus I can’t breathe.

pls someone tell me I’m not alone with this lol 🥲

[intentkitten]

The fridge M (she/them/their/theirs) stores bulk frozen foods and prepped meals for their kids went out, ruining $750 worth of food. So their monthly medical budget went to replacing food for their children.

Please donate.

Intentkitten.gay is a quick link to the gofundme account. Or send funds directly to

Venmo SojournerT91

Cashapp $Mo2391

Paypal.me/niconiche and I will send the funds directly to M from my account. She doesn't have PayPal

$40 today would help them get food ordered so she can eat

[everydayescapeartist]

I miss when “Head, Shoulders, Knees & Toes” was just a fun childhood activity song as opposed to now when it’s just a catalogue of places my body hurts (and could use another verse or two).

[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.

[4spooniesupport]

I know that sometimes having a chronic illness or disability can be really lonely. That's why I created my brand new forum. Come check it out and find out that you are NOT alone!

[eatsyourlungs]

do you ever just wake up one day and be like OH FUCK I GUESS IM BLIND?

[agentem]

Chronic illness is weird. When I die there will probably be a hoard of half-used supplements, lotions and other “wellness” products.

Because every now and again I get my head far enough above water that I am like, “I can’t get sick again, there has to be something that I do.” But I go to the doctor and the doctor is like, “Shrug some patients say fish oil helps.”

So now I have fish oil. And it probably won’t do anything either. I can add it to the probiotics, and protein shakes, and the daily wellness workbook I forget to journal in.

And I am just going to keep doing this—buying shit, trying meditation, reading books, whatever—until I die. Because they will definitely not find a cure or the cause of my autoimmune disease until I am dead. I am certain about that. Probably the day after.

But why do I keep trying things? I am basically making myself the experiment. Hoping I might be the one to stumble on something even though millions of other patients have tried these same things. Why can’t I just accept that this is my lot and appreciate the good days?

[chronicallyillphoenix]

Have a lip biopsy to test for sjogrens in the morning. Stressing out because i am afraid of the recovery of it since i dont do well when it comes to leaving stuff in my mouth alone and i am afraid of messing up the site (like i had a canker sore on my lip awhile back and i kept biting and fucking with it since it is something new in my mouth)

[moonshinemagpie]

Moisturizing my lips and putting in eye drops before bed, knowing I will wake up as I always do—parched, reaching straight for water—and I just feel exactly like a creature whose ancestors came from the sea

I cannot even really explain the degree to which this creature is so obviously my great grandma