#juvenile arthritis

[ricochetfuel]

<3

goodnight to people who are unable to run goodnight to people who used to be known for 'running/skipping' everywhere until it became far too painful and dangerous goodnight to people who have a walking gait that shows deformity and 'disturbs others' goodnight to people who have limbs that 'move wrong' goodnight to people who walk with a limp goodnight to people who stumble and fall goodnight to people who use a mobility aid goodnight to people who use elevators goodnight to people who use shower-chairs goodnight to people who use ramps

[tumble-tv]

When I was ten I was told that when my arthritis went into remission we would throw a remission party with all of my friends and have a cake and maybe rent a house on the beach for a few days.

When I was thirteen I went into remission. No one told me for three years. Wanna know how I found out? Not my doctor. Not my mom. I found out by going through my patient portal to update my medication list for my wallet and stumbling across appointment notes. No one told me.

I went downstairs to my mom, confused because that was supposed to be a big thing, right? The disease that had been literally ruining me from birth being in remission is a big thing? She insisted that she told me. She insisted that my doctor told me. You know what they "told me"? They told me it was "quiet." To a kid, that means nothing. "Quiet" means it's still there, it's just not doing much. Still active, just resting. And, sure, that's essentially what remission is for my condition, but suddenly knowing that I've been in remission for years without being told is crushing.

To say I lost a lot of trust in doctors and my mother that day is an understatement.

[kaydens-stuff]

does someone else struggle with understanding why someone would want to be with me (especially romantically, but in every aspect really) with all my illnesses and disability? and if someone does, how do you manage it? because I'm not able to see how someone would want to be with me with the burden that i cause to people and all the accommodations I require.

[flamingo--ing]

hi uh, happy disability pride month

my doctors arent listening to me +insurance issues, and im in a really bad state

if anyone feels able and willing, heres my medical wishlist

https://www.amazon.com/hz/wishlist/ls/Z8N3WSK3ZLQ9?ref_=wl_share

thanks :)

[cemeterygrace]

the bone demons are stored in the wrist

[luckyburgerz]

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.

[whalien-flags]

Early-Onset Arthritis Flag!

I couldn't find a flag for it so I made one! Common arthritis awareness ribbon color is blue so blue toned flag!

[Image Descriptions:

On the left is a flag with 6 horizontal stripes that's colored from top to bottom as a dark blue toned grey gradient to a white stripe, then pale blue, and then a final blue stripe. There is a symbol on the flag of an outline of bones placed diagonally from each other with dark blue lightning bolts exuding from them. Flag on the right is the flag without the symbol.

End of descriptions.]

[weirdcatperson1]

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

Fuck this.

[my-entropy-hurts]

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

[frogsspark]

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

[majaurukalo]

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.

[thenetherlord]

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!

[tumble-tv]

I went to put on eyeliner yesterday for the first time in a few months because I finally got a new pencil eyeliner. I did my left eye fine, but when I went to do my right eye, I literally couldn't tell where my eyelid was or where my eyelashes were. I'm terrified because my uveitis is mainly in my left eye and connected to my arthritis, so if my eye got worse, there's a high chance my arthritis did too. Now I'm just pissed because I wanted to wear eyeliner and I can't do it, not only because of my hands, but because my eyes got worse.

[kaydens-stuff]

if someone else says that I have arthritis because I don't exercise enough I will actually lose it 👹

[flamingo--ing]

hi..... not to e-beg but........

my form of arthritis requires immense amounts of bracing and splinting that of course isn't covered by medicaid 🙃👍

my health is declining and i have a lot of tough shit going on, but only give if you're willing and able to 🩷 thank you 🩷🦩

[cripple-culture-is]

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!