That’s very likely the last resort yes. If all else fails I will have them take the responsibility of me stopping the medication.

My ribs are also hurting today with some remnant pain from where I had the embolisms so that’s fun. But that part is actually fine, because I took the blood thinners yesterday evening and so I know this is just remnant pain. And it’s not disabling pain, I don’t even need a painkiller for it. I’m not sure a painkiller would do anything either tbh. If I didn’t have the medication though I would feel like I need to go get checked out at the hospital so not taking the medication is impossible, it would cause me too much anxiety. Because how can you tell if it’s just lingering pain or the embolisms coming back? IF you can even feel the embolisms. The clots can form in bigger arteries and move down into the capillaries and that’s when you start feeling it, but they can be causing problems even before that and you would never know.

And then when you’re disabled they still want you to work no matter what. You get no help. You get a health emergency that you didn’t ask for and you get punished for it. You’re expected to do everything yourself and go back to creating value as soon as possible. Strangers on the streets understand my problems better than doctors and other ‘experts’ do.

I’m sorry to hear about that. It seems like there might be options for you, but it can take time to work yourself up to it. Sometimes a solution has huge drawbacks but eventually with time they might not look so bad and the positive outweighs the negative. I’m more of a homebody and being on discords (communist discords) and talking to people there even if it’s just through text helps a lot. In time they become friends.

Thanks comrade. I’m not sure yet what the treatment options are but I’m optimistic about getting a new hematologist (hopefully, if the hospital accepts to take my case). One thing is clear my current hematologist is useless, I keep thinking about that appointment where she kept agreeing with me and my symptoms but then refuses to do anything about it. I need at least something, you know, seeing that they take this seriously and understand how difficult it is for me. Not making me run around in circles.

I’m not gonna lie it would suck to have spent 9 months utterly disabled and then have to do protein monitoring or whatever for the rest of my life (and all I get is a “welp, you’re fixed now”), but that’s something I’ll cross if I get there. We have to assume the risk is there so it’s possible I could stop monitoring and live my life normally for idk 30 more years but then suddenly get another PE. But I’m optimistic about the second opinion.

I’m basically repeating what I said in the post lol. I’m still confused at the hematologist. She’s like “well there’s that… but I don’t recommend it”, I had to ask her later in the conversation to learn that I could monitor my D-dimer at home, she didn’t think to even explain the treatment options to me and then she’s surprised I disagree with them too?? Like yeah between the two monitoring my blood at a clinic every week doesn’t seem like much of an improvement, how do you even live with that? Then she sends me off with a “keep me updated in a month or so” as if my symptoms would magically go away. I basically left the same I came in. But really I think what bothers me is that like I said they’re gonna tell me “well let’s just put you on warfarin” and send me off with a pat on the back, and I’ll have to start monitoring my blood and go back to being a good worker drone like everyone else despite this added challenge. No help, no empathy, just “well you have a treatment so you should be fine lmao”