#rheumatic diseases
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the long-awaited (by me) info sheet on ankylosing spondylitis symptoms, research, and myth debunking is now available! send it to your friends, your enemies, your chronic illness groupchats, print it out and staple it to your local telephone polls - and please let me know if this is helpful, if you have questions, and if there’s anything you think should be added!
https://docs.google.com/document/d/1LLfI4ACQyiiLViyqVO030cTalZAFGfmu8n5-KuLzrrg/edit
#ankylosing spondylitis#axial spondyloarthritis#axspa#chronic pain#chronic illness#back pain#lower back pain#knee problems#knee pain#rheumatic diseases#mac.txt
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I want to ask about something but idk if this is like disrespectful or like wrong in any way but like please read the whole thing.
Okay so I am diagnosed with fibromyalgia and have been dealing with it for the last 5 years. I used to be really happy about the diagnoses because it have an answer to what I'm going through.
And I used to explain it to any person who would listen. I mentioned it to my instructors in college, the students basically everyone.
But recently I don't have the energy to explain and go into detail about how this affects me and how it like works and explain the details of all of that.
So recently I've been saying that I have rheumatism. Which helped them get the picture quick enough to not ask me more questions....
Oh and I believe I have psoriatic rheumatism because I do have psoriasis but my Dr refuses to diagnose me because "we haven't seen any clear signs" whatever that means.
Anyone have a specific opinion about that? Like is it wrong? I'm technically lying about a diagnosis I don't have. Or is having a rheumatological condition close enough that it doesn't matter?
#chronic illness#chronic pain#questions for people with rheumatism#rheumatic diseases#rheumatism#fibromyalgia
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#SARSCoV2 is a very weird virus 🦠
https://www.medscape.com/viewarticle/1000302
#COVID19 may lead to #AutoimmuneInflammatoryRheumaticDiseases (#AIRDs) like #RheumatoidArthritis, #lupus, and #vasculitis, study published in the Annals of Internal Medicine.
https://www.acpjournals.org/doi/10.7326/M23-1831
#sars cov 2#covid 19#autoimmune disease#autoimmune inflammatory rheumatic disease#AIRD#rheumatoid arthritis#lupus#vasculitis
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The hidden life of a disabled/chronically ill person.
(Basically a rant about everything wrong in my life and in this society)
At this point I don't even know what's wrong.
Am I feeling exhausted because of idiopathic hypersomnia or am I at the beginning of a spondylitis flare up.
Do I even have ankylosing spondylitis? The symptoms list is a bit sketchy. I mean, there's something there in my body acting up, but... Anyway, I'm too weary to go through all that, the tests and so. I'll just die with my joint aching, I guess.
And am I crying because of the fatigue or is it the start of another depressive phase? Who knows? Not me. Maybe I'm just fed up of being this way.
What way it is, I don't even know anymore. I'm pretty sure there's a lot more laying there inside me to be diagnosed.
The point is, I've been in and out of so many doctors' offices and two decades later I feel like nothing has changed.
I see people over there, talking about their six months wait for a diagnosis, starting meds right away that changed their life. I'm so jealous. Are these people even real?
I lost count of how many specialists I've seen since middle school. I've lost count of how many times I've given up ever finding a diagnosis or a helpful hand. I certainly haven't kept a list of the doctors I came to hate for their incompetence and their cold dismissal.
I hate the healthcare system so much. There's specialists and centers and places I can't even access because I need other doctors' letters to even take an appointment. But the doctors I have are all incompetent morons that don't even listen to me. Where are the good doctors? Where do I find them?
*
And in the meantime, I survive. There's no other word for the way I live with so little money. How would I survive without the help of a family I'd rather be estranged with? The little money I get from the state doesn't cover for the bare minimum of living. I could get more if I applied for it but... I'd need to be fully diagnosed. The diagnosises I have now aren't enough apparently. I hate that there's people in offices that put a percentage on my level of disability and can decide of my future. Because I really don't know what I'd do if they'd reject my application. I'd be force to find a job that might just kill me, or maybe my bf and I would be forced to live with his father, living on what my family could give us for food. And what would we do the day they'll all be dead? Who'll help us then? Where would we live? How would we find food and clothes?
The state never cares about people like us living with dignity. They don't even care about us being alive. They'd rather see us dead, because we're wastes of money to them. So they don't want to help us. They do not care about making things easier and more accessible. They want us gone.
Okay, I didn't mean to go on a rant, but, well, that's the life of disabled and chronically ill people. We are more than our disabilities and illnesses, yes, but our lives can't be separated from them either. It's not just about 'spoons' or 'batteries', we need to think about so much more than that. And the irony in there is that it costs a lot of spoons. Abled people can have hard lives, sure, but they have more energy to spend and means to find solutions. They survive more easily. For us, it can mean death far more quickly, and no one cares.
If we can't take care of ourselves by working, earning money, making a place for ourselves in this broken society, we are devalued and outcast.
"Earning money". Do we have to earn our right to live too? Apparently so. At least, they won't try to make it easier for us.
Sure, there's stuffs that exist for helping disabled and chronically ill people. But it's enough sugar-coated bullshit to appease the people, to show enough kindness not to look heartless. I don't believe for one second they care for us, and you should not too.
They expect us being voiceless, because we are often silenced by our own lack of spoon. We live a life where we need more energy but have less than most people. It is thus unfair that we are the one that have to be our own advocates.
Sure, we have allies. But if there's one thing I have learned is that if you don't leave it, you don't know what people that live it really need. The best allies are forums. They're empty spaces that make the minorities' voices resonate, that emplify them. Allies' voices are echoes. But echoes can be dangerous, the original message distorted beyond recognition. So we need to be the ones to be heard. No small feat.
I know that I can't do that. I can only send tumblr posts into the void. Is that enough? It'll have to be, because I can barely remember to eat, I can't fight this battle on top of everything.
Kudos of the activists that manage to do it all. I hope you don't get burnt out.
#actually disabled#actually mentally ill#idiopathic hypersomnia#sleepy bitch disease#bipolar disorder#c ptsd#autism#actually autism#ankylosing spondylitis#rheumatism#disability problems#physical disability#disability benefits#disability#disabled#actually chronically ill#chronic illness#chronic fatigue#chronic pain#chronically ill#spoonie#spoon theory#depression#actually ptsd
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Image ID: An edit of the "If you're hungry, it's hungry - feed it 20 pound bag of ice" edited to have a powerpoint slide explaining Rheumatoid Factor covering the image of the deep fryer and the the words instead reading, "If you're hungry, it's hungry - feed it Fc region of IgG molecule." End ID
#image description#image id in alt text#meme#medical laboratory#med lab tech#lab technician#rheumatoid factor#rheumatoid arthritis#rheumatology#I'm tagging these because something like 70% of everyone with RA has RF#and there's an above 0 chance they'll know about this.#also if you'd like an explanation: Ig means immunoglobulin i.e. antibodies#RF is an antibody some people make against other antibodies.#Specifically the `constant` part of those 2nd antibodies#which means this new (auto) immune complex can fuck shit up and lead to `bystander cell lysis` i.e. damage#this is generally agreed to be bad#also fun fact: some people have far above normal levels of these anti-Ig antibodies/RF and DON'T have a rheumatic disease or anything else!#me#my works
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Well I know there’s gotta be some people in the disability community on here, just wondering how many that are active that have a rheumatic disease (UCTD, Lupus, Rheumatoid Arthritis, Sjörgen, etc)
Hi I have Undifferentiated Connective Tissue Disease (UCTD) I found out just before the panini hit, I’m on hydroxycholorquine which helps me manage my symptoms *most* of the time but with the weather getting cold I’ve been experiencing a lot of pain in my leg joints especially my left knee. It sucks. I can only handle doing stuff on my feet for so long before I need to sit or lay down at this point.
#uctd#undifferentiated connective tissues disease#disabled#spoonie#rheumatic#lupus#rheumatoid arthritis
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I might get a mobility aid for my chronic pain condition. Does anyone have any advice?
(Sorry this is so long 😅)
I’m deciding whether or not I should get a rollator. I think it would really benefit me, I’m just worried about the stigma and public perception of it.
I’m just 19. I have rheumatoid arthritis, which makes my joints hurt from literally anything. My pain is mostly in my feet since that’s how I get around everyday. The constant pressure causes my ankle and toe joints to inflame and rub together and cause deterioration. I also have pain in my wrists, knees, shoulders, and occasionally my hips and back. I’ve had to end trips early and prevent both me and my friends/family from having fun. I can walk short distances, but if I know I would be walking for more than half an hour I just take a bus instead.
I would love the freedom of going to the zoo, the amusement park, the mall, and other trips. I’m just scared to ask. :<
I want to be able to take weight off of my feet as I walk. Especially since I’m plus sized, the pressure of standing for even 20 minutes is enough to make me wanna lie down or sit in a bath for hours. I want to walk more without fear of getting stranded and needing my dad to pick me up cuz I can’t walk home.
Even though a cane is smaller and lighter, I don’t think it would suit me bc I have weak wrists, and the pain is symmetrical across both feet and knees. That’s why I thought a rollator would be good since it’s also a portable seat so I don’t have to stand in lines or if I get really tired. (Way better than sitting on the sidewalk or floor lol)
I am also looking into smart crutches since they prevent wrist pain and they look a bit smaller than a rollator but I probably need the seat that a rollator would provide.
Does anyone have any tips for first time mobility aid users? And how to get over the fear of others opinions?
#arthritis#health#RA#rheumatoid arthritis#rheumatic#inflammation#rollator#help#chronic pain#disabled#autistic#inflammatory arthritis#autoimmine disease#autoimmune#chronic illness#mobility aid
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#i think I'm getting the Mysterious Rheumatic Disease that runs in my family yay <3#because like. things shouldn't hurt this way at my age
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This is not good news.
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the sample size for this study was only 5 people, so there’s still a long way to go, but the scientists referred to the CAR T-cell treatment as essentially a “reset button” for these participants’ immune systems
#lupus#multiple sclerosis#autoimmune disease#rheumatoid arthritis#rheumatic diseases#car t cell therapy#mac.txt
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Rheumatic heart disease
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I have to switch medications for the first time in years, after doing research I am even more scared and freaking out about what my best option is. I think real life experience will be extremely helpful
So, have you or anyone you know taken Cimiza or Simponi for Rheumatoid Arthritis? Do you take either of these alone or with another drug (methotrexate) ?
Are you willing to share your experience on these medications with me?
Bonus points if you were trying to become pregnant or were pregnant while taking any RA medication
Thank you❤️
#rheumatoid disease#cimiza#Simponi#rheumatoid arthritis#rheumatism#enbrel#humira#rheumatologist#chronic fatigue#chronic illness#spoon theory#spoonie#medication#help#starting over#pregnancy#rheumatoid arthritis medications#rheumatic#autoimmine disease#immunocompromised#medicine#TNF blocker
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It's October 6th 2023 time to exhausted to go through it all again I just spoke a very very long post and they told me there was a hiccup and for me to try again it doesn't save it as a draft it doesn't do anything to help me I was talking about my pain and suffering and the health problems that I'm going through now I'm not sure how long I can make it. I don't know how long I can survive everything is getting worse my health my situation Etc and I have no help that's all I'm going to say for now like I said I can't do it all over again I'll try and remember what I said another time and I'll try to post soon please take care of yourself
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what diseases streptococci cause?
What is Streptococci?
Streptococci are a group of bacteria that belong to the genus Streptococcus. They are gram-positive, spherical-shaped bacteria that often form chains or pairs.
What Diseases Streptococci Cause?
Streptococci bacteria can cause a wide range of diseases in humans. Some common examples include:
Strep Throat: This is a bacterial infection of the throat and tonsils caused by…
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Montalin Capsules in Islamabad Contact Now 03278006822
Montalin Herbal Extract 40 Capsule available .
Effective for control Uric Acid, Helps to reduse Chronic Rheumatic pain, to Destroy Blood Clots , Joint Support, Gout Relief Solution.
Efficacy Capsules Montalin
This capsule is a herbal product that has many benefits and is suitable to overcome various diseases such as:
Treating gout
Overcoming stiff as a result of the work day
Reducing cholesterol from foods that are not good
Keep your body fit and fresh
Flex its muscles rigid and treat cramps
Eliminate the stress you
Making the body feel more refreshed when you wake up
Helps to maintain Stamina that makes people Live Longer.
With a complex of traditional herbs MontaliN advanced bioactives target both structure and function of natural joint motion to help balance out joint stressors, daily wear and tear, and the “overworking” of an active lifestyle so even morning stiffness goes unnoticed.
Comes in sachets, 4 capsules per sachet,???? Will be send first class flat as a letter with original box folded.
#Montalin Capsules in Karachi Contact Now 03278006822#Image#Montalin Herbal Extract 40 Capsule available .#Effective for control Uric Acid#Helps to reduse Chronic Rheumatic pain#to Destroy Blood Clots#Joint Support#Gout Relief Solution.#Efficacy Capsules Montalin#This capsule is a herbal product that has many benefits and is suitable to overcome various diseases such as:#Treating gout#Overcoming stiff as a result of the work day#Reducing cholesterol from foods that are not good#Keep your body fit and fresh#Flex its muscles rigid and treat cramps#Eliminate the stress you#Making the body feel more refreshed when you wake up#Helps to maintain Stamina that makes people Live Longer.#With a complex of traditional herbs MontaliN advanced bioactives target both structure and function of natural joint motion to help balance#daily wear and tear#and the “overworking” of an active lifestyle so even morning stiffness goes unnoticed.#Comes in sachets#4 capsules per sachet#???? Will be send first class flat as a letter with original box folded.
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