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.

lmao knew it couldn’t last long.

Strangers on the streets and people who barely know me are more attentive my needs than fucking medical professionals. If that doesn’t create class consciousness within you once you experience it I don’t know what will.

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

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”

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.

I’m basically spending the evening now trying not to puke (i don’t know if I mentioned that but nothing comes out, I “just” go through the motion like my body is trying to puke my lungs out, but nothing ever comes out) because I pushed myself too hard. Even when I’m doing fine (relatively speaking of course) that means planning the day in advance and pacing myself throughout, and limiting my activities. I was doing mostly fine coming home from the hematologist, but afterwards I called family and friends to update them on what came of it and all this talking exhausted my “nause-o-meter” lol. Now I can barely do anything but sit down and type this.

You were indeed the one I was referring to! After talking to more people this evening I also think that they really, really don’t want to take responsibility for a potentially wrong move. The play seems to be that to get a doctor to do something, you need to present them with an even worse outcome. Although in your case with the “therapist” she really seems to think she’s untouchable. I should have told my hematologist that since she thought I didn’t have an illness that doesn’t prevent me from working then I should stop taking the blood thinners. See how she feels about taking responsibility for that lol. But tbh although we were reaching the end of the appointment she seemed kind of in a hurry to be rushing me out asap when I mentioned the certificate, going from one topic to the next very quickly and then basically saying “alright thanks bye”. I’ll be better prepared from now on.

I’m truly sorry to hear about what you’re going through. They drive us mad with bullshit. Studies even show that cutting out all this red tape would actually save money, but no, we have to torture and run sick people in circles so we can appear tough on fraud.

My hematologist works 2 days a week anyway, I can’t do anything with her. Sometimes I need advice on the spot but she only calls me back the next day. If I don’t pick up, she doesn’t leave a message or anything. The receptionists don’t even understand the problem half the time . One of them didn’t even know my blood thinning medication by name when I mentioned it and this is the cancer and HEMATOLOGY department. What can you even do with that.

Thank you comrade, wish you strength too. I haven’t reached that stage yet but I’m sure I will. I’m thankful to have a good therapist, she gave me advice regarding disability benefits, one thing I should have done is ask for certificates for sick leave since last year. I should have done that because it helps a disability claim, but I will be doing it starting on Thursday when I see my hematologist. Since I haven’t had a job or unemployment benefits since January last year I didn’t need any certificates and didn’t think to ask, but it would have helped process it faster if I need to submit it (which I know is what’s gonna happen already, but I have to play along with the process). I just hope they don’t hold it against me that I didn’t have certificates last year to deny me benefits.

Solidarity with your partner. I got the genetics test to my knowledge pretty much all the ones they knew to give me, and they came back negative. We have no idea how I developed these clots. The moderna covid vaccine which I got in 2021 was actually pulled from the market over this problem, but they say the clots develop over like two weeks to a month. Mine came three years later, so it’s probably not the cause. Because of that I have to treat it as if I could develop more embolisms any day if I wasn’t under treatment.