#juvenile arthritis | Explore Tumblr Posts and Blogs

tumble-tv · 25 days

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Having arthritis at 17 is funny, because I tell people and they're like, "oh, my grandma has that! she takes X, Y, Z and it helps her a lot!" Your grandma and I do not have the same arthritis. Her yoga and good vibes are not going to help me.

Then there's the whole thing of finding rheumatologists near me. There are only 2 in my general vicinity. 2 that take pediatric patients. The rheumatologist I am not currently seeing is about an hour away, so when I tell people about how awful my rheumatologist is at the moment with medications and care, they always say that i should go to another doctor when I literally cannot.

Then there's the whole thing of my doctors refusing to help me with my chronic pain because it's apparently all because of my arthritis, which has been in remission for 4 years now, so no, it's not my arthritis. Arthritis medications will not help my pain, and they refuse to acknowledge that

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weirdcatperson1 · 5 months

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God what the fuck gives doctors the audacity to disrespect you for daring to ask for medical care?

Fuck this.

#juvenile arthritis #arthritis #chronic pain #ehlers danlos syndrome #pots syndrome #disability #spoonie #the audacity #fuck this

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luckyburgerz · 4 months

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juvenile onset arthritis is so fucking humiliating sometimes. yeah sorry honey we cant go on that date that we've been planning today. yeah no its just that its slightly colder than usual and my immune system has decided that my hips have the flu. yes we're only barely in our 20s but i need the same accomodations as my grandpa after having extensive surgeries. fucking christ.

#juvenile arthritis #rheumatoid arthritis #cpunk #cripple punk #arthritis #the last part is about arthritis being an 'old person thing'

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frogsspark · 11 months

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If you have a young loved one that has joint pain and you want them to exercise

Don't. Tell. Them. That

Take them somewhere they want to go, on a hike, walking around a zoo or somewhere, take them shopping or swimming, don't just tell them they "need to exercise" because let me tell you from experience, that just makes me feel like they want me to feel pain, but if its somewhere I actually want to go I feel better about it.

And if you have a mobility aid however makeshift it might be, use it! Your comfort over anything else <3

#joint pain #chronic pain #arthritis #juvenile arthritis #mobility aid #disabled #physical disability #exercisewhiledisabled

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majaurukalo · 4 months

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Let’s talk about looks.

I have rheumatoid arthritis and because of that I have this kind of eternal baby face/moon face usually associated with juvenile arthritis. Plus, I am very short.

I am also 29 years old and don’t show it. People are always eager to remind me when I tell them my age. They assume I am in my early 20s or even a teenager.

Now, someone might think that I am complaining about something nonsense because who in their right mind would complain about looking younger? Our society has internalised that being young or looking young is something good and positive, whereas looking old or - God forbid! - looking older than your actual age is horrible and should be avoided. I don’t have to say how that’s wrong but we’ll leave it to another post.

Tell me what you want but I hate it when people point out to me that I look younger than my age. Not because I think that being a teen or in early 20s is bad or anything, but because my younger appearance is related to my illness and not to genetics or the way nature shaped me. And I am always reminded of that and how people perceive me because of that.

Also, there’s always a difference between how people treat a grown up and a teen/very young person. I always fear that people won’t take me serious, that they will condescend me, think that I am naive and inexperienced because they think “I’m too young”. Not that it is correct to do that even to actual teens and young people, but it’s what some people do. Heck, I also worry that they’d ask me for my ID when I buy alcohol.

Make-up serves me to try to look a bit older.

Now, I know I still belong to the young side, but I am also a full grown adult (I surpassed the 25 threshold, the age when your brain finishes developing), I am a mature and responsible person who had some life experience and is not totally clueless.

So what I wanted to express is: can we please stop making comments about people’s looks? I don’t care if you think that looking young is a compliment. For some it might be, but still, don’t do that because you never know someone else’s story. I don’t care about looking young, I don’t smile when you tell me so.

There are plenty of stuff you can compliment me on. For example, I think I have a dope sense of style.

Thanks.

#cripple punk #cpunk #cripple #disability #crip revolution #crip punk #disability justice #disability pride #disability rights #chronic illness #rheumatoid arthritis #juvenile arthritis #appearance #looking young #compliments that are not compliments

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my-entropy-hurts · 4 months

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By far the best reaction I've ever gotten to using a cane was at school, three weeks into using it.

This kid walks up to me and says "why do you use a cane?" I was about to come up with a bitchy answer but then he went "no, don't answer that. You use it to walk." And then he walked away. The most chill stranger in regards to my disability

#disabledlife #disability #cane user #jia #juvenile arthritis #ja #pain #chronic pain #chronically ill #cripple punk #crip punk

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thenetherlord · 9 months

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Happy Disability Pride Month to people...

Who have been diagnosed and been on treatment...

Who have not been diagnosed, but WANT treatment...

Who have been diagnosed, and know almost everything about their condition/disease/disability...

Who have not been diagnosed, and barely know their triggers or how it started...

Who talk about their disability, and make it a part of their identity...

Who don't talk about their disability freely, and might be too scared to make it part of their identity...

Who have been on a long and hard struggle and finally, FINALLY got into remission...

Who are still trying to get into some 'better' state...

Who have an invisible disability and don't 'feel disabled enough'...

Who have an invisible disability that has been over-dramatized and hear jokes about it constantly...

Who have been in remission for a while, and don't feel like 'enough' while talking to disabled peers...

Who have not been diagnosed, and sometimes feel like their experiences 'aren't enough' to warrant the disability...

Who have a physical disability, but didn't realize the mental toll it would have on them...

Who have a mental disability, but didn't realize the physical toll it would have on them...

Who got diagnosed rather young and have lived with their disability for most of their life...

Who are only just learning how to cope and live with their disability...

Just like me.

Happy Disability Pride Month, ya'll!

#invisible disease #invisible disability #disability pride month #disability #disabled #ptsd #juvenile arthritis

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cripple-culture-is · 10 months

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could you tell us about question 7 in the ask game? Also 1 if that's ok.

Hi! Yeah, of course! No problem at all =D

Question #7: What's a struggle you wish more people talked about?

Oh, there's honestly so much. I wish more people talked about the struggles and importance of accessible household items, I think. I don't think people talk enough about how accessibility is really important when considering buying certain things.

For instance, I struggle to open the handle at the house my family and I live in. We bought our new house a few years ago, and we couldn't change the handle. My parents have been intending to change it, but they haven't.

We are also currently looking to get a new vehicle, which means we have to check how accessible it is for me. How hard it is getting in, how much leg room I have, where the handles are, and how easy it is to handle/drive.

Accessibility is about more than ramps and wheelchair accessible vehicles. Even though I don't 'look disabled' (whatever that means), I still have to consider accessibility wherever I go and anytime I'm looking at something new.

It could simply be the difference between squeezing a tacky glue bottle vs. squeezing an Elmer's glue bottle, which is a struggle I have dealt with. Tacky glue bottles are CONSIDERABLY harder for me to use due to wrist strength than Elmer's glue is.

It's as simple as needing someone else's help to put on a fitted sheet, or having glass containers that are hard to open. I don't 'look disabled', but I am. And because I deal with wrist pain and my disability affects my wrists, it leads to issues with wrist strength.

So while there are many struggles I'd like to hear about more, I think that is my choice.

Question #1: What disability/ies do you have? (and are they mental, physical, or both?)

I have one diagnosed disability. I believe I have some undiagnosed ones (autism, ADHD, anxiety, depression, c-PTSD and/or PTSD, either celiac or non-celiac gluten sensitivity, and hyperthyroidism).

But for the sake of accuracy, I am only going to explain my diagnosed disability =)

I don't think I have gone into full on detail of what my disability is, even on my main blog. I honestly can't remember.

I have an autoimmune disease called RF (rheumatoid factor) negative polyarticular juvenile idiopathic arthritis. Because I am 20, this would (I think) be referred to as juvenile-onset arthritis, but again, for the sake of accuracy, I am going to give the diagnosis I have on my medical record. By 'juvenile' it means that it is diagnosed/occurs when someone is 16-17 or younger.

Polyarticular means 5 or more. This means that at least five joints in my body are affected by my arthritis. In my case, I have arthritis in every single joint in my body.

It affects my neck, jaw, spine, collarbones, ribs, shoulders, elbows, wrists, fingers, hips, knees, ankles, toes, etc. All of it. Pretty much my entire skeleton is affected. I mostly tend to have problems with my knees, jaw, and wrists. But they are all affected. Because of my disability, I do deal with chronic pain. I struggle when walking sometimes, though I often push myself due to familial expectations, and the fact that I don't like 'complaining'. I also can't stand for long periods of time because of my disability.

My disability is physical. It is mobility related. My disability is categorized as a physical disability, an autoimmune disease, a chronic illness, a musculoskeletal condition, a connective tissue disorder, and a mobility impairment, which is honestly a mouthful XD

I think my arthritis has affected other parts of my body that don't inherently have to do with my joints (potential livedo reticularis on my legs, watery eyes, etc.), though because those aren't confirmed, I just went with what the condition is said to cause (the other issues might be caused by RA, which I am technically not diagnosed with [though I feel like I might have seronegative RA, which would just end up being the more adult type of the JIA I have])

Thank you for the questions!

#physical disability #cripple punk #cripplepunk #crip punk #cpunk #physically disabled #physical disabilities #juvenile idiopathic arthritis #juvenile arthritis #arthritis #auto immune disease #autoimmune #invisible disability #disabilities #ask game #chronically ill #chronic illness #chronic pain

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fiftypercentbread · 1 year

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ce: medical stupidity, vent

I went to a rheumatologist for the second time in 5 years. I went to a child rheumatologist when I was 14, I’m now 18. I have been in pain for years, juvenile arthritis runs in my family and the pain will be so bad most days that I struggle with basic mobility

and this doctor told me there’s no treatment for me right now, and to try exercise and vitamin D

she asked me if i was transitioning (gender) and i said that I don’t see what that has to do with anything? and she said there can be aches and pains associated with hormone therapy (i am VERY CLEARLY not on hormone therapy)

im just so done with specialists

#chronic pain #vent post #arthritis #juvenile arthritis #fuck the medical system

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debandio · 1 year

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To support my team here is link any amount will help. Thank you https://events.arthritis.org/index.cfm?fuseaction=donorDrive.participant&participantID=294240

#arthritis #juvenile arthritis #WTCA #fundrasier

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cheesecrustking · 8 months

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Despite God and the devil's best efforts, and much to @lesbixor 's dismay, I'm back

#juvenile arthritis

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tumble-tv · 23 days

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It's been raining for going on 4 days, and my body does NOT like it.

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weirdcatperson1 · 2 months

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Nobody talks about how sickness, disability, steals your life away. My whole life has been colored by uncertainty and pain, my every dream has been dashed against the rocks. I sit, desperately grasping at any chance of a fulfilling life as it slips through my fingers like so many grains of sand.

I cannot bear to watch another dream die.

#chronic pain #disability #disabled #enthesitis related arthritis #juvenile arthritis #arthritis #eds #ehlers danlos syndrome #sorry for going too hard with the metaphors #I just get that way when I’m sad #disability representation

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thelilplanetgod · 1 year

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My mom, talking about my past major injuries: "I was worried you'd have arthritis for the rest of your life, but everything seems fine"

Me, questioning if I have arthritis: "..."

#juvenile arthritis #juvenile idiopathic arthritis #juvenilearthritis #arthritis #young people can have arthritis too #invisible disability #pro self diagnosis #self diagnosis #pro self dx #self dx #self diagnosed

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lrmraccoon · 11 months

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JOURNEY

The journey is the same

as yesterday, the day before,

but tomorrow we learn

maybe if I fill the petrol tank each morning

I’ll make it to the destination

but the tank is never full and the fuel gauge is faulty so

the gas runs out abruptly

unexpectedly

and it can take forever to fill up again.

drained and draining,

the journey is always the same

and the journey will be the same tomorrow.

-- my very first poem by lrm raccoon

having chronic illness is like having a faulty gas tank

(okay so this is a bit shit but i'm working on it, practice makes perfect)

#original poem #short poem #my poem #poemsdaily #poemsociety #poems on tumblr #poems and poetry #poetic #chronic inflammation #chronic illness #arthritis #juvenile arthritis #writeblr #excerpt from a book i'll never write #writers and poets #creative writing #writing

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majaurukalo · 3 months

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My right leg today is hurting more than usual 😭

#cripple punk #chronic pain #chronic illness #rheumatoid arthritis #juvenile arthritis #disability #cripple #physically disabled

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