#and they said it was symptoms of long covid bc me and her got hit hard in 2021 with covid | Explore Tumblr Posts and Blogs

crimeronan · 11 months

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WHEW okay. ROUGH fucking start to the morning but things are gonna be okay now. putting under a cut for people who don't care abt my endless unrelenting medical drama but for those who do. Come On This Fucking Journey With Me.

so, necessary background.

i have been having intermittent medical emergencies since february and my doctor has been trying since march to get me a specialist rheumatology appointment. the rheumatology clinic keeps ignoring the referral and/or saying that they need more paperwork and documentation for it.

my doctor has at this point provided them with

her physical observations of my visibly abnormal symptoms

all of the many many many many Many medications i've been prescribed and their effects on said symptoms

multiple different types of positive ANA showing i have uncontrolled progressive autoimmune disease

all my negative antibody tests (have yet to test positive for any one specific antibody)

my doctor - who is excellent - has also followed up with them repeatedly to try to get me scheduled. because i am dying. like i try not to be super dramatic here bc i don't like worrying people and maybe i'm overblowing my symptoms but like. when you're at the point that one of your partners schedules an impromptu overnight flight to come up and monitor you for a week bc your other partner is on vacation & you're in danger of stroking and being unable to call an ambulance for yourself if someone isn't in the room to notice the signs...... i feel like at that point it's fair enough to say I Am Fucking Dying. i am dying. i've been dying for months. like very slowly and inconsequentially but MORE THAN MOST PEOPLE ARE DYING AT ANY GIVEN TIME.

so two weeks ago, after even more fucking phone tag, rheumatology was like. we have all of your tests and documentation now. we'll call to schedule you in soon :) if we don't, call us in two weeks!

today is, of course, the two week mark.

i thought it was strange that they hadn't called because my current symptom progression is usually triaged as The Top Tier Of Autoimmune Medical Emergencies. and my doctor herself has gotten me in for same-day appointments whenever i develop new symptoms because i am apparently not being fucking dramatic about how fucked up i am.

but! rheumatology is overburdened by a combination of COVID-era backups and a MASSIVE influx of newly disabled people with long COVID. and they're dealing with the same understaffing and shortages as the rest of the healthcare system. so it wasn't THAT weird.

called the clinic as soon as they opened this morning. was put on hold for a few minutes, which is normal.

guy gets back on the line. informs me they actually Don't have the test results that they need to schedule me (even though they TOLD ME THEY DID two weeks ago). and that they can't help me.

at this point i got off the phone and had a hysterical crying breakdown so profound that multiple partners swooped in to make a Shitload of Very Testy phone calls to various places on my behalf. bc they love me and are wonderful i am very loved. i have been taking the whole "actively dying" thing in stride for months for the most part but apparently this morning i hit my Fucking Limit. because OH MY FUCKING GOD.

so after an hour of hysterical crying, the receptionist at my main doctor's office calls back. she has always been very kind and takes calls from me / my partners extremely seriously, because of..... you know. The Everything.

she's just as kind and sweet and apologetic as ever but also there is kinda an undercurrent of apoplectic fury. she's spent some time trying to figure out What The Fuck Is Going On. turns out that

there was one more test rheumatology needed, even tho they said they had all my documentation. ok. fine.

my doctor did in fact order this test immediately after my last appointment.

i did in fact have the bloodwork done for this test immediately after my last appointment. like within an hour.

there was NO REASON for rheumatology not to have these test results.

except.

that the phlebotomist who took my blood.

ran every fucking ordered test.

except.

the one.

i needed.

to get scheduled.

with rheumatology.

so i've been waiting two weeks for fucking Nothing. because i thought i had my referral sorted. and the rheumatology clinic did not fucking inform my doctor that actually! they were wrong! about having the documentation to schedule me in!

the receptionist called up the lab to make sure that they Can run the necessary test. confirmed that they can. then she called up the rheumatology clinic and sent over all of my current documentation all over again and told them to be on the lookout for the final test. THEN she called the lab AGAIN to say, "hey, i'm sending you this order electronically, but i'm making an extra note that you guys need to do it right this time, AND you need to treat this as highest priority n analyze the results immediately. and i'm giving you the specific test number right now to make sure you fucking write it down correctly."

and then she gave ME the test number. and said "write this down. and when you get there, ask them what the number is for your test. and make sure that it matches."

which all took up most of her morning and truly was going above and beyond, all she really Needed to do was resend the lab order n tell me to go get more blood drawn. ESPECIALLY since it's an indie office & she handles ALL of the patient scheduling and bureaucracy.

but she is mad. and also i have dying patient privilege.

i felt much better after this because tbh half of why i was so upset was because i already know i have multiple forms of irreversible damage to various body parts and i really fucking physically feel like i get closer to dying every day and i really cannot fucking deal with being triaged as a non-priority possibly-faker hysteria patient.

but this does not seem to be the case.

so. unless something ELSE manages to go wrong with all of this bureaucratic bullshit, what's going to happen is: i am going to drive to a lab 45 minutes away to get my bloodwork done today bc that's the closest place with same-day appointments. i am going to call my doctor's office and tell them that the blood test was done, bc the receptionist said to call her from the parking lot once i'm finished. my doctor is going to receive the test results and send them to rheumatology either today or tomorrow. and within two weeks (Supposedly For Fucking Real This Time), rheumatology will ACTUALLY FUCKING CALL TO SCHEDULE ME IN.

in the most ideal and luckiest world, i will in fact be triaged as an emergency case. which means things will move fast in terms of both getting a call from the scheduling team and getting scheduled in. however it's also possible that they will have patients who are in, like, multi-organ-failure shutdown crisis, who obviously need to be prioritized above me. i do have endless paper documentation and visible physical symptoms stating that i am very very very sick, so. fingers crossed but i don't want to jinx it.

this post is very long. medical bureaucracy is a nightmare. i am very very very lucky and blessed to have so many life partners who are willing to advocate for me because as you can imagine, none of this is easy to navigate when you are unbelievably fucking sick and have a brain that is progressively losing the ability to retain language or executive function or memory.

in conclusion.

being sick is so stupid.

#medical #autoimmune tag #hank green's note of 'when the american healthcare system moves fast that's when it's time to worry'#YEAH I FEEL THAT. it WAS moving so fucking fast until all THIS.#hopefully now that it's sorted it'll be back to moving really fucking fast because I Need Healthcare Pretty Fukkin Badley

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liu-lang · 2 years

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i finished my 10 day quarantine on tuesday, dec 28.

on wednesday, dec 29, i tried to join a virtual waitlist for testing but by the time i texted at 08h on the dot, it said it was at capacity. i rang the urgent care the day before and they told me that there was a 15 min window 08h to 08h15 where people could join the 80 person capacity waitlist via text. no idea what happened when i tried to join. i was bummed out.

luckily though i ordered a labcorp on demand at home test kit. if you go on their website now, they have a little notice saying that they're not accepting any new orders from from dec 29 to jan 2. so i feel really lucky that i had the foresight to order one right when i tested positive. i took my sample and scheduled a fedex pick up. the delivery person who fetched it from the lobby held it as far away from him as possible even though he didn't have anything to worry about since it's sealed in a biohazard bag.

then i went outside for the first time in 10 days - everything felt the same as the last time i had been outside - cold, wet and rainy with long queues of people everywhere. i wanted to find a rapid antigen and PCR test. first i went to the pharmacy that gave me the false positive the first time - i figured i would just try there in case i was unable to queue anywhere else. this must be a secret testing site bc there were only 2 ppl ahead of me. i got my first negative from a rapid antigen test there.

then i went to find a mobile test van. while i was signing up, i saw one of the people i queued with 10 days ago at urgent care - she wore the same yellow coat - we recognised each other. she turned out to be negative last time and i shared how i was positive and my experience getting better. it was nice to see a familiar face.

unfortunately the mobile test van got hit by a car. it was jarring but they continued testing. i got my second negative rapid antigen test then. at this point, i emailed my manager at my 2nd federal work study job my results and she said i could come back to work on monday, jan 3 since they closed the office for cleaning bc more of my colleagues have covid.

i'm really grateful that i got better. it was interesting that even though i was boosted, i had way worse symptoms than my roommate who didn't have her booster. i was most concerned in beginning and then in the middle when i started to have worse chest pain and was coughing up blood. my roommate's symptoms improved everyday while mine got worse and then thankfully plateaued.

right now i have a lingering cough and a lot of phlegm so i have an appt with my PCP next week to check my lungs.

#personal #nyc move #covid 19

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sparrow-ink · 4 years

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covid diaries aka memoirs of the plague

trying to keep my thoughts organized and coherent has been a bitch recently, so i’m going to try to put them down more or less in order here and see where we end up. this is going to be heavy on personal covid content and might get long, so please skip if either distresses you.

so last tues, the uh... 24th i guess, i started feeling ill. mostly like allergies plus a bad headache. i had a feeling i was getting sick but didn’t want to alarm my spouse or housemate/best friend, so stuck with ‘could very well be allergies and dehydration.’ also it very well could have been, and it was very reassuring for us all to tell each other that. my company had already moved the majority of employees to work-from-home, including me, so i already wasn’t going to come into contact with anyone outside my home.

symptoms got worse over the next few days, congestion, headache, feeling feverish, cough started up. we didn’t own a thermometer, and my spouse and housemate tried every wal-mart, wal-greens, target, etc to find one. housemate said at one place they laughed at her when she asked if they had any. i tried ordering one on amazon with no luck. either they were $90+, out of stock, or not shipping until may. i settled on ordering on for shipment in may. the seller messaged me the next day and said they couldn’t fulfill the order and asked to cancel it.

from our last costco trip we had already (unintentionally) gotten stocked up on toilet paper, snacks, and some dry goods. at some point before I got sick, spouse and I bought a bag of rice and bag of potatoes, because I intermittently try to do mealprepping and seemed being stuck at home would be a good time to try again, what with national and state-wide states of emergency being declared. also seemed good to have them in supply. and we were still stocked up on cold and flu medecine from when i got bronchitis mid-dec to mid-jan. so we were/are pretty well-stocked on essentials? that was reassuring, as i was obviously, noticeably sick by last friday.

i was hoping i would get better over the weekend but i did not. still couldn’t find a thermometer anywhere. governor had issued the state-wide stay-at-home order on uh...thurs? weds? but already being sick, and already working from home, and not going out, it didn’t really affect me much?

i feel like i should mention at this point that since the state of emergency was declared and we started to transition to working from home, i’d been trying to ration my social media (tumblr/twitter/insta) time for my sanity. but also not having information makes me feel helpless, so i had the CDC covid page up and checked every day. and then the colorado state covid page too. seeing the numbers of confirmed cases double, and triple, from week to week was... hm.

also one of my younger siblings moved from colorado to arizona at the start of march, and presumably lost their phone because i haven’t heard from them since despite poking. that hasn’t been concerning during a global pandemic. not at all. they’re probably not dead. i mean, you’d think a bitch could call their older sibling to let them know they’re not dead, but whatever. i’m sure they’re fine. probably. anyway.

where was i. so by the weekend i was Not Feeling Well At All Actually. my cough had become “scary.” my housemate did all the dishes in the kitchen despite not being responsible for most of them. i felt, and sounded, disgusting.

i checked the covid testing requirements again, and basically found that in colorado you had to be dying to be tested for covid. cool.

monday rolled around, still not better. i ended up having work computer issues (their end, not mine) where i basically ended up laying on the couch in my office while IT did IT things. a blessing. i slogged through the rest of the day. just felt like i wasn’t tracking well, couldn’t focus on shit. that evening while watching shows with husbeast & housemate, i had a truly uncontrollable coughing spasm/fit that seemed to just go on. could barely talk without coughing. i coughed all night. i basically didn’t sleep.

tuesday morning i woke up, and started coughing again. i could hear a crackle echo up my throat when i breathed if i was in the right position. i sat up to try and get my breath. i think it was like 6 am. spouse creature (already awake from my coughing) gently rubbed my back. i started crying. i just wanted to sleep, and i couldn’t sleep, and i couldn’t stop coughing, and i felt like i could barely breathe, and things just hurt, and i couldn’t think straight. i felt so... defeated. i think it freaked out the spouse creature. i usually only cry during children’s movies.

i took the day off of work. i hadn’t taken a day yet because i was already working from home, and it was the end of the month which is the busiest for my team, and my boss had said last week that if i felt i could work, they needed me. by tuesday morning i was out of energy and also fucks. i got in the queue for a teladoc appointment. per the CDC and colorado covid websites, telehealth visits are to be the first option in order to help prevent the spread, etc. also i would have done teladoc anyway bc i don’t have a PCP.

it took a few hours to get connected with a doctor. i think i started coughing while he did his intro thing. he basically said, well i think i know what you’re calling about, but why don’t you tell me. i told him. and coughed some more. he said my symptoms are consistent with covid, and in a perfect world they’d be able to get me in for rapid testing, but they couldn’t. that basically people are only getting tested at this point who are getting admitted to the hospital. some people were able to access testing through their PCPs but even that was drying up. he advised me to self-isolate (already on it lol) and for my household to self-quarantine for at least two weeks from when i started showing symptoms. and i could un-self-isolate once the majority of my symptoms calmed down AND when i didn’t have a fever for three days straight with no meds. he prescribed me an inhaler and a cough suppressant pill, though he said the cough suppressant might not do much since it didn’t seem to be working for anyone else with similar.

husbeast had run out to get some more supplies by the time i got on the vidcall with the doc, mostly liquids and electrolytes. he went back out once i gave him the rundown, to fill my prescription and get me the good costco chicken soup once they were open. he also, miracle of miracles, managed to find and buy a temporal thermometer at costco for like $45 i think. a true champion. my temp seemed to be fine in the afternoon, a touch above normal but fine. i’m not actually sure what my personal base temperature is. i should also say that i’d been consistently taking dayquil and sudafed since the previous weds.

that evening my temp started to go up. and up. or at least i think it was tuesday night. maybe it was weds? freaked out spouse, i got up to 102 F even with sudafed and additional acetaminophen. i basically had a fever from tues through this morning (friday), while taking pills like clockwork. always seemed to get worse in the afternoon/evening and be better in the morning. today at least it’s stayed below 100F, even mostly below 99F.

the cough and difficulty breathing has been the worst part. i have delicate baby lungs to begin with, and i have allergies and a history of childhood asthma. so i’m already paranoid about my breathing even with a normal cold. but to hear that i would have to immediately proceed to emergency services should my symptoms progress to: can only get a few words out, can’t stand up or walk across the room, can’t maintain conciousness, to hear that was... something. because then it’s basically like, okay, if I get pneumonia and my lungs are filling up, then i can go see a doctor in person. cool. and i know it says on the websites that there’s no approved treatment for coronavirus, that treatment for less severe cases will be the same at home as it would be in person, but shit. i woke up so many times last night feeling like i was fighting for air, waking up because i was coughing so hard i had to sit up all the way to breathe, and i kept thinking, what if i just stop breathing in my sleep? not like i would notice, right?

it’s been scary. i’ve been trying not to freak out my people with more crying and whatnot, but i’ve already got anxiety and this shit aint helping. i’m trying to stay relatively calm and not make them deal with me losing my shit on top of already taking care of me and bringing me soup and water and pills and asking what they can do for me. i’m tired of being sick. i want a new pair of lungs. i want to not feel like i’ve been hit by a truck. my ribs hurt from coughing so much. my chest hurts. my whole body aches. the headache keeps coming and going. i can’t stop fucking coughing. i don’t want to die, i just want to maybe go into a coma and wake up when this is all over. once the line of dump trucks has stopped running me over.

and i’m just so mad at the lack of preparedness in the US. i’m so pissed that i can’t even get tested, i can’t know for sure what the fuck is happening to me. i’m so mad that the cheeto is president during this. i hate this fucking timeline. i hate that we don’t even have clear numbers on cases because of mismanagement. i hate that i keep feeling like i’m about to throw up because i’m coughing so fucking hard. real fucking reassuring to know that the symptoms i’ve been told to watch for, to know that i need to go to the hospital, are the same ones that constitute an emergency and would mean that i would basically have to be rushed there. wearing a facemask if we can find one.

ugh. the other worst part is that i haven’t even been really coherent enough to write. and i’ve only been able to settle on a few things to read and watch. being sick makes me picky and like, impossible to please. so i’m spoiled for choice with 4+ streaming services, but nothing sounds good. and my people are working from home, but they’re still working. they can’t spend all their time with me. i’m bored, and everything is garbage, and there are only so many times i can rewatch the princess bride. i have been napping quite a lot, but even that doesn’t take all day.

maybe i’ll write some crackfic. then it doesn’t have to be coherent. and it would be in the spirit of covid to write some real absurd shit i think.

anyway. i might delete this later. i feel better for getting events put down and venting. also i apologize, i have no idea how to do a readmore cut on tumblr anymore.

#long post #covid diaries #plague memoir #meatspace recollection #meatspace adventures

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