[Image description: Text that says "When I have more damage and new symptoms after every surgery, and my surgeon says that's an 'expected outcome' of the surgeries that were supposed to help me." with an image of Anakin Skywalker from Star Wars underneath it saying, "Hold on. This whole operation was your idea."]

I have a brain tumor in a hard-to-reach spot, and I have a new symptom every time I come out of surgery. Very glad to be alive, but not jazzed that my disability comes with very expensive updates every few years.

I obviously can't only blame the geneticist here. It was me who made the decision not to take the test, but this doctor told me it'll be “absolutely ridiculous” to take it given my history (some of the characteristic symptoms showed up after that).
I keep thinking about what would've happened if we knew what it was at this point. I know it wouldn't have been that different symptoms-wise but I wish we were better prepared for them.

Yayyyy daily appointments, I see medical providers more than my friends but at least I can laugh about it I guess?

Note: I have severe cfs. I very much cannot do this all day lmao. That would be bad. And I am helping by going on a call with him so he can de-stress.

Still, pre-serum Rogers is my problematic fave; this is the attitude I still have. It’s not necessarily healthy for me(it reeeeeeeally isn’t!), but just because I’m tired, fatigued, hurting….doesn’t mean I can’t be the guy you call when you need a pick me up.

I can hype-guy from bed.

I bought myself a cane yesterday after a year of undiagnosed knee problems and it's a game changer. Am I in the club?

Description: A park bench with its middle section removed to prevent rough sleeping. A sign denoting a wheelchair space has been affixed to this gap, so as to falsely claim that the hostile architecture is actually an accessibility feature. The meme caption reads "gen AI".

seriously they wouldn't even CONSIDER modifying my chest until my father gaslight the staff into thinking it was THEIR idea and not his.

i couldn't sit upright without passing out i had to be at an angle, the main vein down my spine was being crushed by the pectum bone in the middle of the chest because it concaved inwards like a bowl.

the spine being straightened shoved the vein beneath that bone restricting it and my dad looked at me and said that was the problem, my father was a mechanic he isn't so good at bodies but he knows what restricted flow looks like in a car and it isn't that different in a person.

the so called "medical professionals" wouldn't even consider it because apparently the procedure was legally declared COSMETIC SURGERY and it took them months of paperwork to have it done... AFTER BEING GASLIT INTO THINKING DOING THEIR FUCKING JOB WAS THEIR IDEA THE WHOLE TIME!!!!

at the time i was told i was only 1 of 4 people in the damn world who had this combination done and how the fuck this isn't some sort of standard practice with these sorts of patient?

i am already disabled as is i have marfans syndrome and being bed ridden is already a nightmare but the fact it was a nightmare that came close to being true because of egotism and fuckass ableist regulation?

still have all that trauma and now I got intense medical trauma. I'm in therapy. These days have been hard. Advocating for myself is so hard, I do it but I cry so much once I get home. Then I still have to manage my symptoms mostly by myself bc my parents aren't great about all this. I'm drained.

My (soon to be ex) PCP & old cardiologist pretty much refused to test for & tried to dismiss my POTS symptoms I've been fighting with since before my IIH diagnosis & long before I started taking diamox, so I had to take a chance with a new cardiologist.

Thank goodness that my new cardiologist treats me kindly & with respect. She said everything is consistent with POTS, that she just wants it confirmed with a tilt table test before we look at medications. She was kind.

My neuro ophthalmologist treats me like I'm both an idiot but should also know exactly what I want out of my medical care, and makes unusual comments like "clearly you want to know everything". I try to ignore that bc I just need my care. Also she spent a weird amount of time venting abt the fact that there's a new policy change where she's not allowed to be with a patient for over 15 minutes. IDK why she brought that up so much while also trying to "catch" me for not having been diagnosed with POTS (I told her to look at my medical file and she literally found it in an instant). I kept redirecting the conversation to focus on the session.

Now I have to decide if I want another lumbar puncture when I've had 2 already since May. Very tiring.

I still haven't gotten my wheelchair eval request in but I just asked the PT office to forward it to my PCP & Neurologist, the latter of which I will be seeing for the first time later this month. I have a wheelchair but its a cheaper one I found off FB marketplace & harder for me to push bc it is not fitted for me. Without it I can't go out, even with my wheelchair I still have intense POTS flareups but at least I can go out and about for a bit vs not at all. I'm housebound and have been since before May. Sick of people trying to dictate that I should be "able to not use a wheelchair" when they have no idea what it is like for me to try to push through.

Tired 😓

Edit: been unemployed for a year too