#hank green's note of 'when the american healthcare system moves fast that's when it's time to worry'

[crimeronan]

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.