chronically immune @chronicallyimmune - Tumblr Blog

hello! i am the only person in my friend group with an chronic autoimmune disease and while i love them a lot, sometimes i need to yell about it without incurring concern.

so welcome to me yelling about it!

expect: complaining, ill-advised experiments on myself, existential fear, and perhaps results?

#chronically immune #intro post #autoimmune #chronic illness #rheumatoid arthritis #chronic pain #disability

virtualmosshroom

chronicallyimmune

but what about both?

#chronic illness #autoimmune disease #rheumatoid arthritis #disability #chronically immune

the-lemon-light

*repetitive clicking noise happens anywhere*

me: wow, just like my best friend the mri machine

chronicallyimmune

we love spending an hour in the metal tube

#do y’all get to listen to music? i never do #just clicking and trying to think of songs the same tempo #mri #chronic illness #autoimmune disease #chronic pain #disability #rheumatoid arthritis #chronically immune

do you ever get upset due to the insanity that is symptom management for your autoimmune disease but because you’re upset you send yourself into a flare and then have to do more symptom management??

#i am quite upset #rheumatoid arthritis #autoimmune disease #chronic illness #disability #chronic pain #chronically immune

Daydreaming about having someone else who is willing to make the phone calls and collate information and pick me up when I can’t stand…

#it’s been… a lot of being on the phone lately #with people who don’t care and don’t have the information #and ugh. it would be so nice to have a person to help with things #especially because my brain is a leaky strainer #chronic illness #autoimmune disease #rheumatoid arthritis #disability #chronically immune

Tell me why my PCP is in one hospital system and my rheumatologist— the only one in the area— is in a completely different one? Tell me why they both insist on sending me to hospitals FARTHER AWAY than the close ones in the same network and also seem unable to actually make orders get there?

I’m very lucky because I have a car and my job is flexible. What about the people who don’t? Why is this system struggling so hard? I need an echocardiogram. Give me a damn echocardiogram and a cookie and a star sticker because I have been dealing with this NONSENSE for TOO LONG AND I AM TIRED.

#venting #rheumatoid arthritis #chronic illness #autoimmune disease #chronically immune

notjusthespongenextdoor

For a city to be walkable. It must also be sittable.

notjusthespongenextdoor

#every time I read this phrase the same thing happens#I read it as shittable and go wait that can't be right#oh right they were talking about public benches that makes more sense#but public bathrooms available without fees should also be a thing tho#cities should definitely be shittable#it happens EVERY SINGLE TIME

it must also be shittable

tuttle-did-it

It must also be wheel-able for those of us disabled people who need various forms of wheelchair, wheeled walkers, mobility scooters, etc. That means FLAT, even spaces wide enough for our wheels, with ramps at safe angles.

#what’s that post about benches in grocery stores?#i would love for the grocery store to not be the one event of the day #however. it is EXHAUSTING #also when the brain fog hits and you know you had a list but where is it? what was on it?#can you tell that i just kind of bought stuff and hoped for the best today?#rheumatoid arthritis #chronic illness #chronic pain #disability #accessibility #autoimmune disease #chronically ill #chronically immune

incomplete list of doctors/medical personnel i have seen or will see this summer!

- pcp

- rheumatologist (two different ones)

- x-ray tech

- MRI tech

- orthopedic tumor specialist

- cardiologist (likely, will know tomorrow)

SO. it’s time to GAMIFY this bad boy. who else do we think i can see this summer? an ent? an obgyn? let me know!

#we can either be annoyed or we can make it a joke #what do i win if i get doctor bingo?#is there a bigger prize for doctor bingo blackout?#chronic illness #disability #autoimmune disease #chronic pain #rheumatoid arthritis #osteochondroma #chronically immune

for today’s little win, i managed to do some yoga.

i used to really like it. every evening i would lay out my mat and stretch and breathe and meditate. there’s this one teacher online i love, because she takes it slow and has her dog there.

i stopped when my symptoms started because it’s hard to want to do that sort of thing when everything hurts.

but today i followed along with one of her yoga videos and smiled at the dog.

my endurance is worse than it used to be and i had to modify a lot to take care of my knees and hips. but i got to do yoga again.

it will be different but it will be okay.

#little win #yoga #rheumatoid arthritis #chronic illness #chronic pain #disability #autoimmune #chronically ill #autoimmune disease #take care of yourself #chronically immune

myalgicencephalomyelitiscfstom

chronicallyimmune

ableism check!!

you are not lazy, weak, whatever insult that comes to mind because you can’t do that thing.

you are living life on hard mode. you are putting in so much more effort than they see. you are probably putting in much more effort than you acknowledge.

let limits be limits. don’t set yourself on fire to keep anyone else warm. use the mobility aid, the elevator, the heat pad. it’s there for you.

you’re doing great. i love you.

#ableism check!#disability #chronically immune #chronic illness #chronic pain #autoimmune disease #rheumatoid arthritis #mobility aid

chronicallyimmune

rotating my hip and bending my knee are irritating right now which has led to such fun situations as doing a half split mid-conversation, becoming spider-man while i try to stand up, and faceplanting onto my bed

#my favorite rest position is criss cross #which is bad when you have the Evil Joints disease #ughhhh #chronic illness #chronic pain #chronically ill #rheumatoid arthritis #autoimmune #chronically immune

rotating my hip and bending my knee are irritating right now which has led to such fun situations as doing a half split mid-conversation, becoming spider-man while i try to stand up, and faceplanting onto my bed

#mobility is CERTAINLY SOMETHING #rheumatoid arthritis #chronic illness #chronic pain #disability #autoimmune disease #chronically immune

i am a cane user. i have found out that with my cane i can last for three or four times as long as without.

HOWEVER. i have a blister developing on my finger exactly where i hold the cane. i’m a half mile from home, 95% depleted from the day, and can’t decide if i want to risk letting it become a full blister and spend the rest of this week giving myself an infected sore on my dominant hand OR sleep on this stupid bench

#mobility aids #rheumatoid arthritis #chronic illness #autoimmune #disability #chronic pain #chronically ill #chronically immune #autoimmune disease #vent

suprsaturatd

Don’t hold your breath.

chronicallyimmune

ableism check!

people just say stuff sometimes, don’t they? and it tends to be really wild things. sometimes it hurts. sometimes it’s infuriating.

among the things i’ve heard are: “what’s wrong with you?” “it’s just for now, right?” and attempts to plan big, physically active adventures like i used to love.

we’re not going to forgive them their ignorance. we’re going to appreciate that they wish you well OR we’re going to flip them off and move on. (adapt as necessary for your situation)

disability is HARD. not everyone knows that or understands the reality of what you go through every day. but i promise that holding on to the idiotic things people say won’t help. turns out internal fury is a flare trigger, for me at least.

and i am certainly not perfect at this whole “moving on” thing. but at this point if someone’s not actively out to get me, it’s a win.

i hope your pain is manageable, your fatigue less than normal today. i hope you know that you are loved and seen and understood.

#internalized ableism check!#chronic pain #disability #chronic illness #autoimmune disease #chronically immune #USE YOUR MOBILITY AIDS

chronicallyimmune

i have to admit— even though i make internalized ableism checks on here, i struggle a lot with it myself.

i use a cane and i’m mad about it. but usually i can stand up long enough to do a quick shower in the dorms. i’ve been really struggling to do that lately.

i have a foldable stool just in case but i hadn’t used it yet. it felt like using the stool was letting the illness win.

and then i got this text while i was complaining about it:

use your mobility aids! don’t show up empty handed to this knife fight, bring your knife and cut a bitch.

it was so nice to shower and actually get my hair clean. i feel so much better AND i didn’t pass out naked on the floor! double win!

so yes. internalized ableism check. unstrap that dagger from your thigh and sit down in the shower

chronicallyimmune

okay so about using your sword and shield in battle…

SWORD CANE

#greatest mobility aid of all time #mobility aid #autoimmune disease #chronic illness #rheumatoid arthritis #chronic pain #chronically ill #chronically immune

weather: *is cold and slightly damp*

my body: WE HAVE NOT SLEPT IN DAYS. EVERY FOOD IS POISON. I CAN’T BELIEVE WE JUST HIKED ALL OF MOUNT EVEREST AND THEN SMASHED OUR KNEES WITH A HAMMER! DID YOU KNOW THAT EVERY INDIVIDUAL JOINT IN YOUR HAND CAN HURT INDEPENDENTLY??

a friendly reminder that sometimes the weather is ableist. fistfight it at every opportunity.

take time to rest. if you can’t rest, do anything you can to mitigate your symptoms. for me, that’s compression braces on my knees, a cane, and a heating pad. can you prop your legs up while at work? can you move a little slower?

#ableism check!#chronic illness #disability #autoimmune disease #chronic pain #rheumatoid arthritis #chronically immune #chronically ill

chronicallyimmune

i’m scared of needles. they send me into a heart racing cold sweat.

so obviously my medication is a self-administered injection.

today was the FIRST TIME i successfully did the injection alone! there was no tech malfunction, no panic attack, no expensive intramuscular liquid dripping down my legs. so it’s a party over here!

internalized ableism check:

are you getting the help you need?

i understand that it’s scary, but there are people who want to support you.

you are CAPABLE. you are LOVED. you can DO THIS.

don’t let yourself keep hurting because you’re afraid.

chronicallyimmune

ITCHY PAINFUL SWOLLEN

#turns out it’s still trauma to the site #and then you have a histamine reaction #track your swelling my loves #autoimmune disease #chronic illness #rheumatoid arthritis #chronically immune

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