chronically-j

[chronically-j]

hiii ok i dont think i have MCAS but im curious if this is a symptom of that (or something similar?) or if its normal, because idk if i should bring it up to my dr or not!

so, i think its call skin writing? like, with barely any pressure, if i run my nail across my skin, it turns red and sometimes swells slightly, with very mild itchiness.

is that something my dr needs to know about? im genuinely asking because i have a ridiculously hard time knowing whats important or not and i usually assume its all nothing but im trying to be better about that

(using a few extra tags for reach)

[chronically-j]

nauseous as fuck once again and on my second to last zofran rippp

[chronically-j]

my knee hurts so bad and i dont know why ughhh

[chronically-j]

Introduction

Hi, I’m Jordan!

I’m 21, nonbinary, and my pronouns are she/they/he/it

below is my medical story so far!

so, I’d like to start with the fact that i have PTSD with chronic, dissociative features. this means i really don’t remember much from my childhood, so most will either be vague or will have been explained to me by others, so things may be a bit disjointed

All of my life, i’ve been sick in some way, but always mild enough to not need hospitalization (i consider myself very lucky for that, but part of it is also due to my family being poor and unable to get proper medical care sometimes). I’ve always had aches and pains daily and nausea was quite frequent, though not nearly as often as today. i was a very accident prone child, so much of my pain was attributed to that. ive also gotten daily headaches that come in cycles since i was a young child. i would get headaches for a few days at a time as a kid, then it would calm down for a few weeks/months, then begin again. as an adult, i know get them for weeks at a time, then i get breaks of a few days to a few months, then i repeats. i walked to school all through highschool, and every single day without fail id get insane hip/knee/foot pain, it would be hard to breath, my chest would hurt, and id get dizzy. i was diagnosed with asthma and vocal chord dysfunction at 16

in 2020/2021, i got covid. i cant remember if i was vaccinated at this point, but i believe i was. that week of hell started 6-9 months of hell. it was routine covid, no hospital involved thankfully, but afterwards, we found id either developed POTS/pots like symptoms (being assessed now) or the infection had made it worse. i was experiencing extreme dizziness, falls, a heart rate that would spike to 150 just for walking around. my joints also began getting worse faster. they already werent great, id had many times during school where my shoulders or hips would pop and hurt so bad all day, but they were worse. i also began getting nauseous daily, and soon i was throwing up daily. it got to a point where i couldnt eat or drink anything and my dr called an ambulance for me because i was so dehydrated. the drs diagnosed me with cannabinoid hyperemesis syndrome, but i continue to use weed because as of rn the pros outweigh the cons (this is both dr and therapist approved). currently though my family is questioning if that is the cause due to certain things not making sense symptom wise, but thats for my dr to decide

as of today, im on medication for my heartrate, im in the process of getting a diagnosis of some kind, and i have an appointment with an EDS specialist to find out if thats why my bones hate me!

i currently use a cane but am slowly accepting that ill likely need more support at some point, and that ill probably need more medication than im comfortable with (i have a huge fear of medication and have to force myself to take what i do)

im hoping to get answers and more help soon! wish me luck!

[chronically-j]

i was gonna do a t break but pain said no for today so ill try again tomorrow

[chronically-j]

taking my beta blocker more! i start small because i have anxiety, so i’ve only been taking 1/4 a tablet (my dr said thats totally ok) but i moved ip to half a tablet in the morning and today i’m trying another 1/4th later in the day! the goal in 1 pill 3x a day but i don’t think ill need that much, we will see though!

[chronically-j]

shout out to my bestie/roommate that stopped mid tattoo to come get me water because im having another migraine (day 6 babyyy) and i had just sat down after getting my migraine cap and giving him water

someone get this migraine to leave please, preferably without anything more than tylenol because im scared of my sumatriptan

[chronically-j]

fuck my hip hurts and i tried laying down and it didnt help but that shit hurts bad i hate this shit

[chronically-j]

forced t break 💔

( i have to to make sure its not the weed making me sick, but i know its not, its fine though i ran out and cant reup for a week so im using that as my excuse lmao)

[chronically-j]

i have 4 drs appointments this month, which sucks because drs appointments take a lot out of me and usually leave me down for the count for a full day or 2 depending on the appointment. but! they are all good appointments! i have an orthodontist appointment, a GP appointment to discuss my nausea and try to get meds so i dont have to keep paying for pepto all the time, then a cardiologist appointment, and then my eds specialist appointment! all super helpful, but damn, ive gotta schedule stuff better

[chronically-j]

I wish disability aids weren’t always labeled as “for elderly” or “for seniors), I wish they weren’t all hospital depression grey, sanitary white and nurse scrub blue. I want black, red, pink, purple, yellow, green. I’m turning 15 in a couple days, not 75. Fuck even my 71 year old grandma would like fun colored aids. It’s so disheartening, I already see enough of those colors in doctors offices and hospital visits, I don’t want to see them at home too.

[chronically-j]

[chronically-j]

a poll for physically disabled people only

[chronically-j]

day 5? of daily headaches. i hate this

[chronically-j]

fuckkk im sitting here and my hips hurt so bad bro, but i need to get up to clean and set up my altar soon

[chronically-j]

i wish sidewalks got fixed more often. do city officials have any idea how difficult it is to walk on a sidewalk thats absolutely covered in cracks that make the ground super uneven? even with my cane, i almost fell so many times because there was a large crack in the sidewalk. every time we walked somewhere i had to stare at the ground and walk so carefully. my ankles still feel weird from all the almost falls

[chronically-j]

last night was really hard on my hands, which sucks because i didnt want to have to consider any mobility aides except my cane, but now i dont know if the cane will work with my wrists/fingers. they still hurt some today but not much.

people with joint problems, what mobility aides do you use and what are some pros/cons if youre down to share?