He him if you’re wondering. Anonymous alt account. The name is from a random username generator and I found it funny (ironically) considering the reason I made this account.

  • 17 Posts
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Joined 4 months ago
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Cake day: February 11th, 2025

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  • I’ve thought about it before and it’s probably going to be my next step. An acquaintance gave me some of their traditional medicine and I would have taken it, but it contains ingredients that are natural blood thinners and I’m not sure how it’ll interact with my thinners on top of that. I know someone who does hypnosis maybe I’ll ask them if they can see me lol. It’s just hard to get out of the house because even if I’m doing better right now I’m pretty sure symptoms will come back as soon as I do physical activity again. We’ll see how the walk goes hopefully later this week.




  • Thank you comrade. I’m not worried yet because it’s been going on for a year and while it has gotten worse it’s also stabilized and declining very slowly, but right now I’m also completely in the dark as much as my doctors if we will even find the problem lol. For now all I can do is be optimistic and just go to the exams as hard as it is to get there.




  • It takes its toll on the confidence (or rather trust) you place in other people. I can’t say it’s been all bad. I think it’s definitely made me more assertive of my needs and less patient with bullshit, which I’m still trying to figure out if it’s a good thing or a bad thing. Lots of stuff being rethought and overall I think I’m growing as a person from this, even if it’s too early to really focus on that. Right now I live in survival mode, just day to day, planning out my weeks (plural) in advance. though today has been a VERY good day, possibly due to the meds switch, so I’m also in a better mood and not so much in survival mode lol. We’ll see if it sticks. Eliquis did that too the first day and then it was actually worse after 2 weeks.

    I got so used to state services being beyond abysmal than when things work I’m almost confused lol. In my last post I was saying how understanding my welfare case worker was and so far all the payments and stuff have been super timely. It’s almost too good to be true lol.





  • felt absolutely terrible today before leaving for my side job appointment. I took 2 anti-emetics and had to push the apt back 1 hour just so that the medication could have time to work, thankfully the client was understanding. It’s anxiety inducing to be in these situations where you feel like you’re on the verge of puking before leaving because you don’t know if you’re gonna be able to drive, if you’re gonna be able to stay at the appointment, and so you start asking yourself is it worth even trying because what if you get an episode behind the wheel.

    But I managed to drive myself there with some difficulty on the road and had to take my 3rd dose as I arrived as I was still feeling it. Which also means I can’t take the anti-emetic anymore today, and ideally you should space out your doses. Also as I was leaving I was starting to feel the queasiness coming back slowly so it’s possible this medication is just not strong enough.






  • honestly my litmus test now is do they understand the problem I’m facing right away and do I get off vibes. I’ve also associated professionally with bullshitters and you think well at least they’re nice so it can’t be that bad! But they’re incompetent. They can barely do anything. Now if you want my involvement you have to earn it, I’m gonna stop giving it out so freely and focus on myself too. In terms of health there’s doctors that easily make certificates, like they barely ask anything. Apparently they’re pretty well-known. If all fails I’m going to them lol.


  • I’m doing better physically with the medication my dr prescribed last week (upping pantoprazole from 20mg to 40mg. She also gave me anti-nausea medication but you should be careful how you take it, so for now I plan only to take it if I have a difficult episode or I know I’m gonna have one e.g. I have to go out). The first time I took the nausea medication I felt better than I’d felt since all this began. Like it reminded me that even when I’m doing “good” I’m not feeling as good as I was before the symptoms began, if you get what I’m saying. But alas it only works the first time lol.

    It’s moreso psychologically now that it fucks with me lol. I’m seeing my psychiatrist tomorrow so of course I’ll be talking to her about it. I feel like I’m gonna have a panic attack eventually. Haven’t had one yet, but I probably will if the odds keep stacking against me like that and I keep having to run in circles with a bureaucracy that doesn’t want to actually solve problems. You feel completely abandoned by the state and you expect the worst in terms of how they’re gonna treat your disability. All I need is to be able to say “look it’s not gonna work out today, can we reschedule” but I have no expectation they will even grant me that. Because that would be taking responsibility.

    The good news is she can make a certificate for panic attacks? lol





  • 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.




  • 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”



  • My local hospital is not rated very highly. Full of interns, which is fine they need to learn, but it’s MOSTLY interns that you’ll deal with. They threw me out the door after 1 night despite every doctor telling me since then that a PE is a serious disease because it costs too much to keep patients longer even though we pay for healthcare.

    I opted for the emergency doctor on rotation since it was a weekend that day, and got an appointment with him. He did a blood test, saw the D-dimers, and ordered a scanner “just in case” even though at 30 I shouldn’t be having blood clots. It’s totally possible that if I had gone to the emergency room instead they would have diagnosed me with an infection after 5 minutes given me antibiotics and sent me on my way. Like, there’s a close to 90% chance that’s what they would have done.

    And then I pretty much only got interns during my stay. Which is finish but you know for this type of case maybe it would be cool to have a senior doctor do a personal check too.