#me and my bowels need to have a discussion man to man about a ceasefire until this crap gets resolved

[rabbitindisguise]

it's late but I'm getting all worked up before bed because I had weird test results and they just didn't do anything!!!!!!!!!! not even a "everything looks normal" just "weird weird okay I'm leaving" sometimes even leaving the room before I could be like "Wait hold up"

frankly I think it's probably wise to ask for someone to go to an appointment with me to quickly get all the referrals I need and tests done that make sense given my symptoms but it's a bit short notice for an agency for patient representatives (who mostly get second opinions, and I'd need to figure out insurance for that) and everyone else has like School or Work and stuff

and like I'm mad enough about this stuff that I can do some self advocacy running off of pure anger but 1) I don't want to sabotage the somewhat decent relationships I have with my doctors and 2) as much as I joke that this is my full time job I'm seriously underqualified and it's stressful as hell when I'm alone in a room with a person who basically has my life in their hands. I was mostly adjusting to the idea that if there was a problem someone would do something, but ever since the seriously concerning bloodwork has come back I haven't heard a peep. It's like they think because I'm up and talking I'm somehow healthy as if I haven't personally done a hip reduction multiple times by myself- because they don't believe it ever happened, though even when presented with test results they don't seem to wake up until you repeatedly shake them into sense

Therapists have a lot of problems and the patient/therapist relationship has the thorny bit where they can have you institutionalized against your will, but doctors can both do that AND cause problems through negligence. I have more self respect from therapists than I ever will from how I get treated by doctors because they are capable of treating people like equals.

And like I can't do my best work when I'm like physically a mess because I acted on the advice they gave me and I can't hold anyone responsible for it without going through the effort I should be saving for repairing my health. People ignore me when I basically present my symptoms on a silver platter and don't do anything when I tell them to do stuff that they assume I don't want. It's infuriating.

It's also really frustrating watching people go through their own health struggles and feeling like I'm helpless and giving the wrong advice. I feel like my answer should always be to fight it every step until you're sure it's fine but money is Such an issue and also going to so many appointments can cause problems that are nebulous and unclear, hospital to hospital, system to system. I have no idea how to correctly go to the doctor or if there even is such a thing! People have been giving me advice but there is no fix, I'm never seeing the same person, I'm shuffled off from one person to the next and they won't even agree that I'm disabled to sign my forms one entire year later and I did all the things I'm supposed to the letter

I'm doing my stool sample tomorrow and calling to schedule more appointments. I'm messaging my neurologist to follow up on cluster headaches and an MRI, talking about my problems with emgality, and asking about why my prescription is currently in limbo. I'm going to call the nurse line to see what I should do about the test results, schedule an appointment with my actual specific PCP, and start typing up the ungodly level of paperwork I need to create for the next appointment and a treatment plan based on my symptoms. And then as a treat next friday I'm going to tell my story to my therapist to explain why I haven't been doing the therapy stuff I want to be doing this week instead of trying to do it and failing -_-

The main things I need to figure out is if 1) one of my prescriptions is causing this 2) if there's any possibility there is actually a bacteria infection 3) what other things I could have symptoms of 4) what intermediate treatment options I have between now and the endoscopy for the Problems

eventually I'm going to have to type up a bunch of treatment guidelines for MCAS and surgery so I'll need to get a consult through my doctor and a bunch of papers through the EDS support groups if I can. Plus all the documentation for my RFC form, citations from my doctors notes, records requests from tufts, my previous hospitals, and get my password recovered for an online portal/records request if I can't.

and in the meantime I'm going to have to sleep. Ugh. I know I procrastinated on laundry but it's like. How am I supposed to do all the things? how is anyone supposed to do all the things??? I see all the work people have to put into being people and it's a wonder any of us are moderately functional. I want to be physically stable enough that I can have good, positive, and stable relationships with the people I care about. And we have plans this weekend ;-; and I still haven't edited the wedding photos OTL

Edit: this is the part where my therapist/housemates tell me I'm not responsible for literally all the things and I should rest and where i remind myself that thinking I have to fix everything is also in and of itself a type of grandiosity *sigh* baby steps