i see her in a few hours now and im nervous im probably gonna melt into a chair as planned because its hot out and ill be traveling by bus and that'll kill me on its own i have a list of questions written out or her i have my symptom log i have determination but im scared im so scared ive seen my mother get ravaged by the medical system, get treated as a drug seeker, as a liar, as a hypochondriac and im scared thats what ill be seen as despite there being plausible cause for my questions and concerns despite there being explanations and reasoning despite my fears having a strong source and logic being on my side im scared im also scared that ill go through all of this and still be seen as fine that whatever tests they might do will show nothing that im just one of the unlucky ones with POTS who doesnt improve who gets worse i want to live a life not just survive and struggle, and i feel like there's something more at hand right now its just a matter of catching it and doing something
i was such a mess when i got there that they did an ekg on me just to be safe it was normal, as expected. she was also concerned about me getting home on my own and verified i had my phone with me and stuff in case something went wrong, which was touching. i stop beta blocker tonight. start calcium channel blocker instead. referral to check for sleep apnea. referral to electric heart guy. idk what to expect really. but i see her back in october to see how things are going. she's not just shuffling me to the side. she's seeing all this active and is concerned. it's a world of difference.
new doc: hey, i was doing pots research and. yknow that psych med you've been on for two years? yeaaaah thats been shown to worsen pots. so. pinged your psych so you can discuss changing it when you see him this month. TWO YEARS TWO YEARS TWO YEARS AND NOBODY MENTIONED A DAMN THING BUT ONE DAY AFTER TURNING UP HALF DEAD IN HER OFFICE SHE DISCOVERED THAT MY OLD DOC WOULD NEVER
sleep apnea doc: scheduled heart electrician: not scheduled. am supposed to meet with general cardiologist for a workup and exam and if he thinks i need to see one he'll do the transfer, but if he thinks its just Severe POTS then he'll send me to the Cleveland Clinic for a workup in their Syncope clinic bc they don't have the ability to help here.
184bpm making curry. died. fingernails were purple. laid down. got back to about 85bpm within an hour and change. got up to put the curry roux in, peed, felt Off, checked pulse again 160bpm surprised pikachu face we are now in the headache portion of the day
i remembered there's a backup, if the meds don't work and I can't get any help from the specialists it's a backup, and its kinda scary but it's an option the option is getting a port installed and doing IV therapy at home with normal IV base saline. apparently it can be life changing for people who are resistant to the drugs and stuff. and it's an option to explore. to keep in mind. i hope i don't need it, but if i do: i think i can handle that.
TheMockingCrows: 19 hours grand total TheMockingCrows: 8 hours to be seen TheMockingCrows: 6 fighting my heart for a single test TheMockingCrows: the rest spent doing other tests and busywork and waiting TheMockingCrows: 12 vials of lopressor shaken off like water, a big dose of metraprolol, a big dose of vibridazine, a nitroglycerin pill, 2 saline solution bags, 24 flushes... and a partridge in a pear tree. tldr: my heart was bouncing around at 100-120 laying down hours later and i was having chest pain, so i went in. it sucked tbh. but i got checked out. spent a lot of time waiting around and just getting treated for the initial fast heart rate. then cardiologists saw me and said they wanted a CT scan of my heart, but i needed a pulse of between 50 and 60 to get it. took a fuckton of meds and several hours to get it low enough for the test, after which i was slapped on the ass and sent home. bought and chugged an ice cold bottle of coke in the waiting room till my ride got there because it was good to be alive and i needed the sugar. badly. i hadn't eaten or drank in 19 hours. i also checked my lab results and jesus i was a fucking mess. ketones in my urine, all my blood cells spiked weirdly, all my shit out of proper ranges. Red flags and Abnormal marks everywhere. I assume all the saline solution I'm plenty hydrated by now. I've already peed to death and just got greeted by the IBS fairy for my troubles, I'm good for the night. No energy to shower, but I changed clothes so no more hospital smell. Kricket is thrilled to have me back, she only threw up twice in protest and didn't ruin anything with it bc they were small spots bless her tiny butt. time to. be a weird medical marvel i guess? the nurse giving me the vial after vial of lopressor had to keep asking the doc for reassurance that things were okay because i not only wasn't responding but was walking it off with 0 effects positive OR negative. It was like she wasn't giving me anything.
i was able to make coffee and a bagel earlier without dying immediately. i wasn't shaking standing still. i wasn't near collapse. I sweat a bit and shook a tiny bit near the end and felt my heart rate picked up, but it wasn't going as insane as usual. my feet are still warm. i recovered faster while laying down. if this is the power of IV therapy, i see why POTSies get ports installed.
finally managed a hot shower, got rid of ALL the hospital residue finally. feel like a new person =v=
another day of sleeping almost 11 hours?? not groggy upon waking though, nice and alert. I guess i needed it? like... im not even waking up repeatedly in the middle of the night aside from maybe a bathroom trip or from the need to roll over sometimes. im not laying there trying to fall back asleep i just konk out. no hot flashes. no cold sweats. no random heart hammering at night or at rest.
hammering heart and chest pressure while making my drink and getting a snack. resting now. it was nice being human while it lasted.
mood drop can't tell if it's period coming or just disappointment from feeling ick again so fast need to ping my doc to tell her i was in the ER as a followup, since they already contacted her too see if i need to come in or not ...maybe its both things. maybe period coming AND just disappointed idk medical shits exhausting to deal with and after how long i was in the fucking ER feeling the world go by me every time they shoved something into my IV line hoping it'd lower that heart rate i just .... i wish i knew for sure that the POTS was the only thing, and then how to fix it i wish there was a cure for this, but there isn't one i wish i had my parents, or a family to fall back on when i felt like this. i need someone to hug me better
sad again can't think can't focus can't Do Things can't start can't finish can't sleep can't stand being awake everything feels like Forever again, in the worst way periods probably coming but of course idk when, i never keep track of it, it just comes whenever it comes and i deal with it when it gets here idek if it missed one or not no clue
started playing 7 days to die again not long after that last post there and i didn't stop till fuckin' midnight discovery: POTS is still active even while laying down playing videogames. I'm all sweaty and gross. Not drenched thank god but Moist:tm: and its unpleasant. i guess bc my heart rate would go up while i was hyperfocused in the zone? i remembered my night meds, i did Some fluids i didn't move enough though arms and legs feel funny, fingers are a lil swollen im blinking more and moving more and the awkward tension seems to be dying down finally but damn, man even while laying down..... lame. :/
oh NO my roomie is sick she's had a sinus migraine for going on 5 hours that's not lessening even with meds and laying in the dark with her eyes closed and she's congested and there's no way to really quarantine ourselves at all from each other i dont wanna get sick D: ive got enough fucking problems going on rn
just realized im gonna have to walk almost a half mile from the bus stop to get to the heart hospital for my appointment in a few days. imma be in full blown symptoms from that. :U i mean... i guess in a way that's good? where better to die and show symptoms, right but at the same time like, M an this is gonna suck lmfao