chronically-bluejae

[chronically-bluejae]

[chronically-bluejae]

Chronic pain syndromes really have people doing the weirdest shit to be in 1% less pain

“why are you sleeping on a blanket on the floor”

“Because laying on the floor made my back hurt slightly less and I couldn’t sleep anywhere else cause it hurt too much”

Feel free to add your own

[chronically-bluejae]

[chronically-bluejae]

School sucks with health issues

Sorry I have to go to the ER, then the hospital three hours away, then to intense physical therapy on the day I was supposed to do a worksheet! I’m so irresponsible.

[chronically-bluejae]

If you're wondering, cussing at your organs doesn't cure chronic conditions

[chronically-bluejae]

It didn't kill me.

But something inside me died that day where I got my first migraine and got my first cocktail.

I didn't realize then that my brain would never feel fully my own again.

[chronically-bluejae]

Idk who needs to hear this but you’re not lazy, you’re disabled

[chronically-bluejae]

The reason things are by default harder for chronically ill folks is because the energy abled bodied people use to actually do things, we have to use just to exist. Meaning it takes at minimum twice as much effort to lead a normal life. And yet I’m seen as lazy. You wouldn’t last an hour in my body. I’m in it for life.

[chronically-bluejae]

Sometimes it feels like people kinda forget your pain when it’s chronic.

When someone healthy/able bodied gets sick or injured, people will pour out their support and understanding right away, which is good, obviously.

But after a while, people get tired of hearing about it.

They get tired of having to work around it, tired of having to be understanding.

But just because your empathy fades, doesn’t mean our pain and grief does.

I’m so, so tired of my pain. Of having to be understood. Of not having any chance to have a proper career, or dreams, or relationship.

I’m tired of my hands not working enough for me to write, draw and craft, which is what is normally keeping me going.

They just keep getting worse.

I’m tired of the pains related to my endometriosis and pcos making me unable to eat properly, get any exercise, and for making me bedridden more and more these days.

I’m tired of having to beg for support in what little buisniess I manage to make sure I survive during my rough recovery periods after surgeries and bad flare up’s.

I’m tired of knowing my life will not be a long one.

I’m tired of complaining, of being in pain, of grieving, of feeling like a burden.

There are no breaks for me.

That doesn’t mean I get used to it. I will never be used to it.

And I think I should be allowed to talk about all of this without feeling like a burden.

I probably won’t ever get to that point, but this is me trying to get there.

By being open and honest, and hoping that at least one person takes the time to read.

If you’re still here, still reading, thank you. It means the world.

Be kind to those around you who are like me.

We’re not happy about our situations, either, but having people willing to stick around and listen makes it a little easier to survive.

Thank you ❤️‍🩹

[chronically-bluejae]

[chronically-bluejae]

(x)

[chronically-bluejae]

Autoimmune disease: because I'm the only one who can kick my ass

[chronically-bluejae]

A diagnosis

After ten years of being a medical mystery, I was given hope for a diagnosis. Blood tests came back showing positive for ANA which points us towards autoimmune disease.

With a family history of Lupus and Rheumatoid Arthritis, it's not far-fetched to agree. I will still search for a second opinion on my blood work, but I am happy to at least have a direction to move in.

[chronically-bluejae]

Being chronically ill is so frustrating. I was supposed to go in for x-rays 6 months ago, but I got very very busy, and then I had flare-ups, then I got busy again, then I graduated. Now, I don't even know if my order for the images is still good.

Not to mention the ADHD

[chronically-bluejae]

[chronically-bluejae]

"Pride month is over"

WRONG! Your pride month is over! Me and all the other disabled queers are having pride month two: disability edition

[chronically-bluejae]

happy disability pride month to people with rare or confusing clinical findings! including:

people who received test results their doctors did not understand!

people who had to get expensive and/or unusual testing, and the results didn't provide clarity!

people who have abnormal test results, who's doctors aren't sure if the results have any significance, or what that significance is!

people who had to learn to read studies in order to research their conditions, because the information has not been made accessible to the general public through articles and informative sites!

people who can't even find studies to read in the first place!

people who might never know if the results they have mean anything!

people with unexplained symptoms that could be related to an unusual test result, but they have no way of knowing!

people who are worried that their results could be pathogenic, but have no way of finding out!

sometimes, disability just isn't simple. it is really hard to have something markedly different about your body that doesn't make sense - not to you, not to professionals. when i was being tested for genetic disorders, they found that i had a duplication in one of my chromosomes, and my doctor told me that it could mean nothing, it could have caused some of my issues, or it could cause me issues in the future.

it was scary! it's been almost two years, and i don't know what it means. there isn't a single case report or study on this duplication. it is deeply disquieting to think about. i don't know what i'm meant to do, or if i can do anything at all. i have plenty of symptoms and features that could be related to it, but there is essentially no way for me to figure it out.

am i still trying to? hell yeah! am i going to try and get into contact with genetic specialists? hell yeah! but if nothing comes out of it, that's fine. it isn't a failing on my part, and it isn't irrational for me to be concerned or upset about it.

your condition does not have to have a name, or a mayo clinic page, or even a study on it for it to be real. your concerns are valid, and you deserve love and support.

happy pride!!