#Sjogrens Syndrome

[eccentricsubmissive]

Sept. 27th 2023

I can't sleep tonight. My mental health is all over. I had another emergency room visit last night due to nerve damage they put me on yet more steroids and a new muscle relaxer...I feel so alone in a lot of this not because my family doesn't care but because they can't grasp it all fully. Outside, minus a couple scars I look totally normal. Inside, I don't know who I am anymore. Living with chronic illness is so much deeper and harder than I ever imagines...

Eccentric Submissive

#dear diary #journal #journaling #chronic illness #chronic pain #chronic fatigue #SLE Lupus #Lupus #auto immune disease #sjogrens syndrome #degenerative disc disease #rheumatoid arthritis #osteoarthritis #Cerebral Small Vessel Disease

[longhaulerbear]

Results: Ro+ SS parotid saliva contained autoantibodies binding to Ro60, Ro52, La/SS-B and muscarinic receptor 5. SS plasma contained 12 novel autoantibody specificities, 11 of which were detected in both the discovery and validation datasets. Binding to ≥1 of the novel antigens identified 54% of Ro- SS and 37% of Ro+ SS cases, with 100% specificity in both groups. Machine learning identified 30 novel specificities showing receiver operating characteristic area under the curve of 0.79 (95% CI 0.64 to 0.93) for identifying Ro- SS. Sera from Ro- cases of an independent cohort bound 17 of the non-canonical antigens. Antigenic targets in both Ro+ and Ro- SS were part of leukaemia cell, ubiquitin conjugation and antiviral defence pathways.

#rheumatology #science journal #sjogrens syndrome

[anonymousmama]

Sjogrens and Lupus 

Hello tumbloves. Truth be told I forgot I made this blog long ago. Now here I am back and hoping to find knowledge and maybe some good friends to help me on this journey. Recently after a very serious health crisis that lead to massive cervical spine surgery I found I am positive for Sjogrens Ss-B with SLE (Possibly?)

Sadly I do not have insurance and do not qualify for government health insurance but also can not afford a Rheumatologist. So, I am ignorant and screwed. Yay me! 😐🙄

I have been looking everywhere and I feel like I only keep stumbling on the same websites with the same redundancy. I still walk away with questions such as

How rare is it to have ONLY Sjogrens Ss-B ?

How long after the anti-bodies for SS-B are found does SLE show up?

How fast will all this progress without treatment?

I have known for years that something was wrong. That I wasn’t dealing with every day pain and tiredness. Yet seems like absolutely now one listened or took me serious until it was almost deadly and someone thought to try and figure out how I was in the shape that I am in. Now I am still battling pain, exhaustion, brain fog with what feels like the complete inability to process any incoming Input these days. Itching.. my fingers my wrist the bend of my elbow tops of my feet and so on. I feel frustrated with myself because even now knowing there’s a reason for why I am like this I can’t accept it I still find myself crying because I can’t remember things. Or I don’t have the same energy for my children and grandchildren. I feel lost and like there is no one around to talk with about what this is like or learn from so I might be able to understand where it’s going to lead.

any and all help is needed and wanted. Please follow me if you are living with either of these things or can just be a friend. - Anonymous Mama

#Lupus #lupussupport #lupussucks #SLE #autoimmune #Sjogrens #Sjogrens Syndrome

[spookysalem13]

Just got home from the ER, went in because I was having difficulty breathing. My asthma inhaler wasn't working. I was coughing up a storm. I started sweating 😓 feeling very hot 🥵.

Dad took me to the hospital and we found out I have covid-19 🙃.

My Mamma, brother & his wife just got back from an Alaskan cruise. They came back feeling sick. So I told my Mamma that she went on a boat and brought back plague 😅.

I'm trying not to panic about it. But the doctor did put me on Paxlovid because I'm at high risk being immune compromised with my autoimmune diseases. She wants to try to prevent me from ending up in the hospital she said.

I swear germs love me too much, I'm starting to become a germaphobe. Being immune compromised I catch absolutely everything and it's getting extremely frustrating! 😕

#covid 19 #covid19 #covid #covid isn't over #quarantine #coronavirus #im sick #immune compromised #autoimmune diseases #chronic illness #lockdown #i am sick #i dont feel good #asthma #sjogrens #rheumatoid arthritis #celiac disease #celiac #sjogrens syndrome #self care #emergency room

[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.

#chronic pain #chronic illness #fibromyalgia #sjögren syndrome #sjogrens #chronically ill #disabled #disability #doctors #rant #medical rant #fuck doctors #swearing tw #doctors ain't shit #venting #ranting #disabled rant #neisvoid

[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.

#fibromyalgia #pots syndrome #postural orthostatic tachycardia syndrome #lupus #sjogrens #spondyloarthritis #migraine #numbness #tingling #raynauds #chronically ill #spoonie #this is depressing

[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 🤪

#Creepy chatter #The thing about finally getting to a doctor that immediately knows what is going on is like #Lol they rapidly answer so many questions + fix so many problems that it takes awhile to register what the fuck happened to you previously #Vanderbilt diagnosing me correctly in one visit was insane but the rest of the things they discovered very quickly after??? #That should have been patently obvious to previous doctors?? #They screened me for a brain fog study bc my age and dxes are so unusual to the rest of their sample pop #I turned down another study not too long ago since they were studying a sjogrens sx I don't have but? #So wild to have a medical authority definitively dx + treat me + have serious interest in studying my conditions further #That imposter syndrome gets. Nervous. #Either I'm a genius who has duped one of the leading medical research universities or perhaps I am actually ill for not attention #Medical cw

[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 🥲

#💜 #sjogrens #sjögren’s syndrome #sjögren’s #autoimmune disorder #autoimmune disorders #autoimmune #chronically ill #chronic illness #chronic pain #physical health

[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!?

#mine #autoimmune disease #sjogren's #autoimmune hives #hives #rash #chronic illness #sjogren's syndrome

[moonshinemagpie]

I don't know if anyone needs this, but: If you're experiencing nausea or other gastro symptoms on methotrexate and you already take folic acid, buy an OTC bottle of folic acid and take even more.

I went from 2.5 mg/week of folic acid to 7 mg and now 10 mg, and I'm amazed at how it has completely eliminated the constant nausea I've had for two years now—even though my blood test results have always shown that my folic acid levels are normal. The more I take the better I feel.

#rheumatoid arthritis #methotrexate #autoimmune disease #sjogren's syndrome #uveitis #spoonie #chronic illness #folic acid #ankylosing spondylitis #the benefits of a new rheumatologist

[eccentricsubmissive]

Dear Followers

I have been thinking about starting a side blog to do most of my actual journaling on. Today I decided I would rather keep it all here. Why start a side blog or keep it all split? It is all part of me and who I am. As an OG tumblr users I want to stay the way I have always been. Transparent and open here. I am not just a kink blogger or adult blogger. I am a human with very real thoughts and feelings outside of the kink catagory. Why not just be me here and now and in the moment?

I have currently been struggling mentally and emotionally with my health and all that comes with it. It still angers me to feel like a year and half ago I really felt like I had found that place in life where everything is calm and you just sit back and marvel at how far you have come and then suddenly without warning you walk out your front door and your entire would changes. Yes, angry is a familiar feeling as of late.

June 30th 2022 I had emergency surgery to have my cervical spine fused and bone grafts placed. This is due to me having a very narrow spinal canal and my spinal fluid and blood flow to my brain was cut off. At this time I also learned that I have Rheumatoid arthritis, Osteoarthritis along with Degenerative disc disease, SLE Lupus, Sjogrens Syndrom. there are a list of other things that go along with all this but I will spare you the long version. I went from being the rock of the family who never stops to being told not to even lift things. All of this will progress and blah blah...Because of it all I am feeling alone and lonely. There are days I feel like I am watching everyone I love live life and I am counting down the days or wondering how many decent days I will have left in me. I no longer know where I fit in the kink world. I still feel submissive but also most days I am so angry I don't feel like I belong anywhere anymore.. Nothing at all seems fair.. Eccentric Submissive

#dear diary #word vomit #random thoughts #this is me #welcome to my world #SLE Lupus #rheumatoid arthritis #osteoarthritis #sjogrens syndrome #degenerative disc disease #spinal stenosis #Chronic Illness #auto immune disease #spinal fusion

[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?

#autoimmine disease #sjogren's syndrome #sjogrens #wellness #supplements #cbd nonsense #wellness culture #weirdest dragon hoard

[lnteritus]

can we just self diagnose with symptoms disease

#fibromyalgia #pots #pots syndrome #we just have a mix of the symptoms of those diseases #but all blood tests come back negative #sjogrens #<- never can spell that one right

[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.

#mental health #chronically ill #chronic illness #physically disabled #physical disability #autoimmune disease #autoimmune diseases #surviving not thriving #rheumatoid arthritis #osteoarthritis #ehlers danlos syndrome #hypermobile ehlers danlos #sjogrens #celiac disease #multiple sclerosis #chronic migraine #chronic fatigue #fibromyalgia #fibropain #chronic pain #mobility aid

[awheckery]

HAVIN A WEIRD ONE, Y’ALL

cut for discussion of chronic illness treatment and weird medication effects; as has been previously established, my body is a horror show, but this is odd even for me

two months ago I crawled into the office to see my wonderful new rheumatologist because I was having An Bad Time, and it turned out I’m one of the unfortunate folks for whom Plaquenil is not a feasible treatment option - it was doing an all right job of mostly keeping my immune system in check buuuuuuuut it was tearing up my insides so much it was tanking my quality of life

(I was also coming off a brutal six weeks of asthma flareup chased by maybe-covid chased by respiratory infection. this year has been non-optimal for me, healthwise)

at that time, my doc sent me home with a steroid prescription I’ve been taking since then, and three weeks ago we added an immunosuppressant named leflunomide to the cocktail

things have been Okay? I’m making it to work more often than not, and I’ve had the energy and gumption to throw myself into a crafty project for the first time in a good long while

and then last week I noticed something was wrong with my feet.

namely, that they had fucking shrunk.

that. is not a usual turn of events.

steroids like prednisone are known to cause fluid retention and swelling, so if anything one would expect one’s feet to puff up, but suddenly I was pulling the buckles on my shoes a full centimeter and a half tighter to keep them secure on my feet, and they just fit differently, the edge of the toe box started hitting a different part of my foot, I am thirty-six years old this is not normal

never let it be said I was not methodical in double-checking that I wasn’t just losing my fucking mind again. I collect Hot Chocolate Design shoes, which are remarkable in the consistency of their sizing, and I double-checked the fit in all nineteen pairs I own, just to be sure I hadn’t somehow stretched out a few from wearing socks and/or insoles, but it was pretty damn clear that somehow, I had lost half a shoe size in a v. v. short amount of time

theory: I am on steroids and a serious immunosuppressant, maybe they’ve taken down some long-standing inflammation I wasn’t aware of?

counterpoint: I have worn the same shoe size for well over a decade, and it has stayed the same through multiple major weight and activity changes

counter counterpoint: yeah but my feet have hurt that whole time like?

counter counter counterpoint: yeah true but I was working retail that whole time and that is really hard on the body

counter counter counter counterpoint: I am not a doctor, there may be some concerning reason why my feet have suddenly gotten smaller, I should consult a medical professional just in case this continues and I suddenly can’t wear my nineteen pairs of fantastic statement shoes

.

so I emailed my rheumatologist.

in the interim, I tried google, and even with all my fantastical powers I wasn’t able to summon a halfway satisfactory answer, unless I somehow have a spontaneous mutation for something like extremely atypical extremely late-onset Charcot-Marie-Tooth, which is just. no. I am already a weird outlier with two seronegative autoimmune diseases and a mess of hereditary neuroses, I am experiencing something strange here but not statistically impossible.

my rheumatologist got back to me this afternoon, and I apparently continue to be the rarest, most beautiful unicorn ever, because despite his decades of medical practice and research in four different countries he has never seen nor heard of a patient’s feet suddenly shrinking. that said, his best guess is my best guess, he can’t think of any other possible explanation besides better living through massive immunosuppression, but he would like me to inform him immediately if anything else remotely odd crops up.

love that weird outlier life.

#sufferpunk life #chronic illness #sjogren's syndrome #in the style of john mayer: #my body is a horror show #medical cw #stella is an outlier adn should not be counted #I don't know how to tag this to stay clear of weird fetishists but uh #podiatry issues #maybe?

[munaeem]

sjogren's syndrome is an autoimmune disease

What is Sjögren’s Syndrome? Sjögren’s syndrome is a chronic autoimmune disease that primarily affects the body’s moisture-producing glands, such as the salivary glands and tear glands. It is named after Dr. Henrik Sjögren, who first described it in 1933. Symptoms of Sjögren’s Syndrome The symptoms of Sjögren’s syndrome can vary from person to person, but common symptoms include: Dryness of…

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#Autoimmune #autoimmune disease #Sjogren&039;s syndrome