chronically-j

[chronically-j]

todays gonna be a bad hip day i can feel it :/ my hip hurts just sitting here

[chronically-j]

bruh i just wanna eat a little bit of candy why does my stomach hurt so badddd

[chronically-j]

my hip is killing me today, i wrapped it and im using my cane but it just keeps hurting. rip me bro

[chronically-j]

fun fact my dr said my symptoms of eds are actually so obvious that if any of my previous drs had had any knowledge in it and paid more attention, i wouldve been diagnosed years ago. ive been suffering for years and if literally anyone had even a little bit of the right knowledge and care i couldve been getting help ages ago. this will be another thing i cry to when im by myself. it makes me sad

[chronically-j]

first time taking my joint meds! im nervous as fuck (medication of any kind terrifies me) but i checked everything online and i should be totally fine, but still nervous

[chronically-j]

i never cry about shit like this so why am i sobbing now

[chronically-j]

crying alone in my room as i process that realistically im going to need a cane at the very least, for my entire life. probably more than a cane. im gonna be on meds for who knows how long probably my whole life for a couple of them. im gonna be in pain forever. i almost wish i didnt get diagnosed because then i could live in denial

[chronically-j]

ive yet to fully process but i just got diagnosed with pots, mcas, and eds. all at once. im being put on 4-5 new meds (i cant remember rn)

he confirmed so many symptoms that i didnt think i had. i genuinely thought i wasnt gonna get any sort of answer today, and yet here i am.

at the end of the appointment, he shook my hand, met my eyes, and said “you deserve to be listened to”

i wanted to cry

[chronically-j]

shout out to dad who got me my own bag of cheap shortbread cookies because i can actually eat those when im hungry and sick. no prompting, just same wavelength (for context i usually have nutritional shakes but we cant afford a new box yet, so i was surviving on bread alone basically, so now i have a tiny bit of variety)

[chronically-j]

this is what my dad sent me after i helped him with his breathing issues last night. when he borrowed my inhaler, he could breathe normally again, and we spent like an hour talking about how yeah, thats what i feel constantly and those really, full breathes? those are rare and exciting for me. i just feel so validated right now, im so lucky to have him as a father

[chronically-j]

yet another person has said i have a gift for caretaking/nursing and that i should get a nursing job lmao. dad also said i have a “natural healing energy” which like, boo yah yk

[chronically-j]

gonna be so real i expected my family to make jokes but instead they all just like. got it. (except mom who said i should just use a rollator but like, i dont need that much support often enough for that yet)

just bit the bullet and bought forearm crutches, idk how i feel about it yet

[chronically-j]

cardiology appointment is done! still says pots is a possibility but no diagnosis, since my propranolol is working well im coming back in a year and as long as im being treated idrc if im diagnosed ir not

[chronically-j]

I’m so fucking tired of being stared at for using a mobility aid. I get it I’m young, you have no fucking clue how aware I am of how young I am with a mobility aid, but that doesn’t give you permission to stare at me. Would you stare if I was old? Or, would you deem it normal and acceptable. Disabled people are not your entertainment or your pity story. Stop staring.

[chronically-j]

just bit the bullet and bought forearm crutches, idk how i feel about it yet

[chronically-j]

soooo much back pain today, idk why either

[chronically-j]

having an understanding family makes me emotional.

my dad and i were talking about EDS and my pain and stuff, and we got to talking about the different types and i said im 99% sure i dont have vEDS (i dont have key symptoms) but that im hoping for genetic testing when i see the specialist, and he was was so validating the whole time. he understood my anxieties and why this appointment is so important to me (he was previously saying he may not be able to take me because work is really busy the next few weeks) but he really understood why it was so important. especially when i explained that some people have to drive out of state to see specialists because they dont have one close enough, so 1 1/2hrs isnt too bad all thing considered. and the waitlist is months at least, ive been waiting 3-4 for this one and whos to say the waitlist isnt longer, i havent checked. so hes gonna take me, and take his laptop so he can work while he waits for me. its only the first appointment so hopefully it doesnt take too long? and maybe he can do telehealth next time but i doubt it lol