CurseAvoider

That's right, you thought this was over, but it's not!

I went to see the new hematologist yesterday. I didn't have to explain too much, she basically agreed straight away that this was not a situation I could continue to be in. To be honest back in January I was reconciled with being disabled like this for the rest of my life, but now not so much. But it's not because of anything fancy, it's just that the side effects (or rather the intolerance to the medication) is getting noticeably worse with time and who knows how much worse it'll get in 6 months, one year, or even 3 years? I can't "coast by" on this medication any longer.

She got me started on pradaxa which my previous hematologist never even mentioned. I'll be trying it out for a month and we'll see how it goes. I'm not expecting a miracle, but it works on a different coagulation factor than Xarelto and Eliquis, so maybe I'll tolerate it better. If not, there's still the old blood thinners (the anti vit K) but it's kinda like being diabetic, you have to manage it for as long as you take it which for me is probably rest of my life. I'm taking it one week at a time though, fingers crossed lol.

The new hematologist also said that my xarelto dose of 10mg a day was too low for my case and the previous doctor shouldn't have recommended that lol. IIRC we dropped to 10mg because we wanted to see if a lower dosage was more tolerable but when it was clear it didn't she shouldve told me to go back up to 20mg?? I don't know if that makes sense lol. Basically I've been on 10mg xarelto since december and after a month when we saw my tolerance didn't improve we should have gone back to 20mg but we didn't.

Oh, since she recommended a higher dosage (even confirmed with her colleague), I also asked if it was safe for me to stop taking the blood thinners for a day or so, as the previous dr said that I could elect to stop it for like a weekend if I was going somewhere that was a concern, e.g. going skiing or smth. New dr said no, don't do that lmao. Only case it would make sense to do that is if I need surgery.

Much better experience overall and she takes it seriously, but I think she also takes it seriously because I didn't ask about disability. Once you do that they put up the stop signs and change the subject. In her opinion we can do the older blood thinners no problem, which my previous hematologist said we couldn't do. I trust the new one more lmao

I was feeling pretty anxious all of last week because I had my first appointment with my welfare case worker today. If you've been following my posts you know why this is complicated for me. It's not just the welfare appointments as well, they normally want you to open an unemployment file as well, and both of these give you monthly appointments every month. On top of all the doctors appointments I have to schedule and the problems I have that make it difficult to do too much in a week.

Thankfully my case worker was super nice and understanding. I explained my health problems (that the doctors say are not health problems), and she basically instantly waived the unemployment requirement and told me to focus on my health. I do have an appointment with her at the end of april to keep her updated, but this is manageable. she also asked if I preferred the afternoons and I said yes so I can manage my medication better (I had to wake up at 6am this morning just for the anti-emetics, and chose not to take the stomach acid inhibitor because I have to eat 1 hour after taking it. I can do that, but only for one day at a time).

That's a huge load off my mind at least and I feel this rollercoaster is finally stabilizing. I have an apt with my therapist next week. I was yelling at her in my post last week but honestly the rest of the time she's perfectly fine. It just bothers me that despite being a doctor she can't prescribe me anything or make a certificate for anything. But they have their specialty and don't/can't stray from it.

The week after that I have the apt at the new hospital for a second opinion, and that's basically my month of march lol. I can only do like one thing per week, maybe 2 if I'm having an especially good week (but you never know if it's a good week until it's next week), so it helps just being able to space these things out and that's what I was worried about. There's still a lot of work ahead for me, including actually fixing these symptoms lol, but at least things are progressing in some way.

I guess you have to celebrate the good times when you can. For anyone who might be ardently following the adventures of Curse Avoider, I realized that I'm doing weirdly well today. No symptoms whatsoever. I had a 2h convo with a friend about their video game without even realizing until after it was over that I didn't get queasy once. After that I took a shower and brushed my teeth -- brushing and mouthwashing usually gets me on the brink of puking, but nothing either.

However I'm also not too optimistic about it. It's possible that I'm just in a good period, or having just one good day. Tomorrow may be entirely different. If not tomorrow, then next week will probably swing back the other way.

I wonder if it has anything to do with the 2 anti-emetics I took on Wednesday, but they would probably be out of my system by now, 48 hours later. Or maybe it's because I took my blood thinner right after eating, which I usually don't do. I usually take it maybe 15-30 minutes before or after eating at the very least.

Definitely will have to repeat the last one again to see if it helps. But it can also be completely coincidental -- I also had some good times last year without symptoms, and then they came back a few weeks later.

I'm supposed to meet up with someone tomorrow, make some pocket money (private IT work, it funds my caffeinated drink addiction lol) so I'm hopeful I'll be able to do everything in one sitting because it's gonna be a long job.

I'm stressed out over the appointment I have next week with the welfare office because if they don't want to accomodate my health needs then I'm shit out of luck. I'm just stressed out, and I told my therapist all of this, and told her I can feel a panic attack coming -- I don't know when exactly, but I feel that if this keeps going like this with me being shuffled around I will start having panic attacks. She told me to focus on the positives lmao.

Like yeah my dr gave me anti-nausea medication but I had to take 2 of them for them to work today. You're allowed 3 a day AT MOST because this type of medication is no joke. I puked on the fucking side of the street (after which I took the 2nd dose) while going to my appointment and this is apparently considered normal. Apparently I should just accept that I humiliate myself on the street every time I go out and puke my guts out in front of everyone. And I have no idea if this medication will work again next week, or how long it works. My dr prescribed it "just in case" bc it's better to have it than not have it. But I have to test out how to take it and when by myself. The therapist said "well but at least you've been able to make it to all our appointments so far" I think to help me but it's just making me worry now that they will use this against me. I don't go to the appointments because "I can". I go because it's better than not going even if it's torture for me. Do you tell a fucking cancer patient (bc that's the example my shitty hematologist used) "Well at least you come to the chemo appointments so how bad can cancer be 🤪" fucking dipshits. I have to pace my schedule and time and not overload myself. I can do one, maybe 2 things a week if I'm in a good period (I'm not in a good period rn). Otherwise it exacerbates the symptoms. I don't consider forcing me to behave like an able healthy person to be either ethical, reasonable, or just. I may go take a first opinion with a lawyer tbh at this point.

All I want is to have the space and time to focus on my health for now until I get back to a more optimistic mindset but nobody in the medical body seems to understand that. You treat patients like shit then when they get depression or anxiety disorders your reaction is "gosh if only there was something we could have done to prevent this" YOU fucking caused this jesus. I'm fucking hanging on on well wishes from fucking doctors. What if the welfare office doesn't want to accomodate me because I don't have a certificate? What if the 2nd hospital offers no option? What if I have to monitor with blood tests every week for the rest of my life? What if I can't make it to my apt next week or another time, and have to cancel, and they tell me to go to my dr to get a certificate, and the dr doesn't want to do a certificate, and so the welfare office closes my case because I cancelled "without justification"? They will do that.

My 2nd hospital opinion is scheduled on the 21st of march. That's a month away. I won't have any solution until then at the latest. And you can plead and tell them how difficult it is all you want, they will follow the fucking procedure because if they don't it can cause problems for them and we wouldn't want that would we. Anything but not following proper procedure.

Being nice doesn't save lives. I spent a pretty crummy Monday because I received a letter from the welfare office and they want to meet me next week, and it pulled me into a spiral. I'm doing better now, I think.

But anyway. It got me rethinking some stuff and listen comrades, don't let people be incompetent just because they're "nice" or friendly. Being friendly doesn't save lives. I used to be like that too when I was unsure of my skills or didn't have experience. I thought being nice and friendly with other people would make up for it. It doesn't. Everybody knows you're a fraud, you know you're a fraud, and you hope they won't say anything about you being a fraud because at least you get along well.

I'm done making excuses for others tbh. My hematologist may be "friendly" but if she can't help me she can't help me. It's not my job to make excuses for her i.e. "I'm sure she's trying her best" or "at least she answers my calls". The current situation is that she and that shithole hospital can't answer my needs and I need to advocate for myself. You need to advocate for yourself too. If someone seems like they're trying to pull you into some bullshit just say no, get up and leave. I'm done with frauds and other sweet talkers. And I'm done being nice to cover up for people who refuse to help. I don't owe them anything.

Everyone is just trying to save their skin by shuffling problems around to other departments so they never have to take any responsibility for it. Almost everything in my current situation is provided or owned by the state - the hospital, the welfare office, and the unemployment office I will have to register for probably. And everyone just wants to shift you around so you're not their problem but someone else's. The hospital doesn't want to write a certificate because what if they get audited and have to justify it. The welfare office doesn't want to accomodate to your disability needs without a certificate because what if they get audited.

I also need to stop minimizing my symptoms and be clear about how debilitating they are. I think I got better at this. But this means stopping being "nice". But being nice doesn't save lives, competence does.

EDIT: you should be both nice and competent if you can! But if I have to choose, I'm choosing competence over friendliness. Nobody likes an asshole but sometimes you have to be one, and sometimes you'd rather have one on your side because at least they know what they're doing.

If you follow the adventures of the Curse Avoider (the name is ironic), you know that I had a GP appointment today. I got the recommendation to the other hospital and they'll probably call me later this week or the next to make an appointment.

She took it seriously at least. I think I really need to easily convey just how disabling these symptoms are for me because they see me in front of them and think it's not that bad. When I mentioned that I try not to take long drives (e.g. to the other hospital) because I could have an episode behind the wheel and what do I do if I'm on the highway, she seemed to understand that something needs to be done.

I asked about a certificate also, mentioning that the hema didn't want to make me one and couldn't explain, and she said (they're both women fyi if the pronouns are messing up with your sequence of events, all my doctors are women actually) that they need to exhaust all medical possibilities first before doing that and then determining just how out of work this puts me. I said yeah that's fine, if it's the process it's the process. I just need them to take this seriously and understand that this is where I'm at, and I need their help on this. I'm the patient and every doctor tells me a PE is serious but I feel like nobody takes it seriously and I have to come up with my own treatment plan.

Anyway, I got the recommendation for the other hospital and hopefully move my case there because I can't with this shitty useless local hospital lol. I'm not expecting a miracle solution even though my family is because I think we've done all the tests and even if we knew the cause what would it change? I'm still at risk for clotting. Unless we can tell for sure this was caused by my 2021 covid vaccine or something (they pulled the moderna one because of this btw, but it happens in the first few weeks).

So that's the next step, is seeing a doctor at that hospital and seeing what they say. I basically have three options:

1. Keep taking the NOAC (that's your word of the day again from last thread, these are the new blood thinners that don't require any monitoring) but become disabled. This is what I'm doing rn.
2. Stop taking the blood thinners entirely, but no doctor recommends that -- not the hema and not my GP today. It goes contrary to my diagnosis which is unprovoked pulmonary embolism.
3. Go on the older thinners but they also come with their own issues (frequent monitoring, being careful about what you eat, and it's an all or nothing thinner so higher propensity for hemorrhages and difficulty to stop bleeding). This may be what the hospital recommends, I'll only know when I see them.

She also gave me some medication to help manage the symptoms, but it's not stuff you can take long-term, more like until I visit the hospital. I also have to try it and see if it helps, so I said okay sure.

If I'm disabled I'm disabled, I accept it. And if they figure they can safely do the older thinners then that's what it is, I accept it as well. I think. But I need solutions, I need them to follow through and not stick me in limbo where I have to call back in "a month" when they haven't changed anything and I've been having these issues for over 9 months lmao.

Solidarity to all my comrades. It's tough out there.

I'm seeing my GP (not actually in the UK, GP is just the word I learned) tomorrow and I hope she has better news. I'm not holding my breath because she doesn't know anything about pulmonary embolisms and always defers to the hematologist's advice. If she doesn't have anything to offer me at the very least I hope I can get a referral for the new hospital.

If you followed my last posts, last Thursday I went to see my hematologist and basically came out of it being ran in circles and with no clearer plan in mind. She said at the end "let me know in a month or so how it goes" how what goes?? She didn't say. I've had these episodes for 9 months now it's not gonna suddenly change lmao that's the definition of insanity, doing the same thing and expecting a different result. She basically politely threw me out of her office when I asked for a certificate. So I decided after that to get my case transferred to another hospital where they can hopefully be more available (she only works two days a week come on) and offer actual treatment options. And if my GP is just as useless I'll have to find another one that has experience with PEs. Which is absolutely not something I want to do because at this time anything is difficult to do and I really could do with less effort on my end. But that's how it is when you get sick in capitalism, you not only have to deal with the illness but you get punished for it. Complete strangers on the streets have been more helpful and understanding of my struggles than actual doctors.

I'm not one to usually get mad at other people but maybe I should. Maybe I should admit that she's utterly useless and can't do her job properly when you have a 30yo otherwise healthy patient who suddenly develops several embolisms. Maybe that's what it takes to show how debilitating my symptoms are right now because of the treatment.

I mean they ran a battery of tests when I got the PE including full blood work (the hospital originally ordered the wrong genetics test to give you an idea how stupid healthcare is around here), and including a full ultrasound of my leg arteries. Both came back squeaky clean, I should be in perfect health. When I started having the side effects (the nausea) we did even more tests, including another full blood test, and everything came back perfect again. So at this time the medical opinion is 99% sure this is caused by the medication.

Anyway my day started fine though I underslept a little, but at around noon time I got a nausea episode (I call them episodes now to underscore the seriousness). The only reason they're nausea episodes and not vomiting episodes is because I do everything in my physical power not to puke because even though nothing comes out it's like my body is trying to eject my lungs each time. And it's not just a one off, I can do the motions so to speak 3, 4, or even 5 times in a row. Like I've been sick before with stomach bugs and other stuff like that that makes you puke, and it was never as strong as it is with this shit. Sorry for talking about this so grossly lol but tbh after 9 months of feeling like this on the daily I just talk about it openly now.

I turned this into a wall of text again and removed a bunch of stuff lol. One way I thought of explaining it just now is like a stomach flu that will never go away. The triggers are a little bit different but it's otherwise very similar, random vomit attacks throughout the day and very sensitive triggers. And you get a certificate for the stomach flu lol. But the hematologist thinks apparently I can work with this and an employer will happily say "yes we will hire and pay you for 40 hours a week even though you only work 8 because you're always calling in sick" lmao. Like even just the daily commute would be torture for me with this -- I had one half day of work in December and it was impossible. I got an episode soon after arriving and even just typing a checklist on Word was impossible. I had to give the keyboard to my group and let them finish it without me while I was taking everything I had in my power not to start puking everywhere. Oh but the hematologist thinks it's not a "strong enough" reason for a certificate but she also won't give me another solution lmaoooo she can go fuck herself I'm so over this useless dipshit doctor. I'm giving one chance tomorrow to my GP but if I sense she doesn't get it or she's reluctant and I can't convince her, I'm switching. I'm done wasting my time and being nice, I need a fucking treatment plan that works OR they need to accept that I'm disabled and help me get the care I need. If they can't they don't deserve to keep taking my money.

Hello and welcome to another instalment of CurseAvoider diaries. Yes, the name is ironic. I actually got it from an online username generator and thought it was funny all things considered.

I have a dr friend, well, I've had them for a while actually, but I still have them, and I originally wanted to ask him about my hematologist's refusal to establish a certificate. If you missed that, check my posts on my profile.

Instead we mostly talked about treatment options and he cleared it up much better for me than the hematologist has done in months. And that's not even his specialty.

Basically, the options that I have would be as such:

1. Take anti-nausea medication to reduce or eliminate them (and stay on xarelto blood thinners).
2. go on the older blood thinners (vitamin K suppressants)
3. stop blood thinners entirely and monitor my D-dimer (clotting protein in the blood), then go back on blood thinners when needed.

Each one has their ups and downs though. For example he recommended a nausea medication but I looked into it and you shouldn't take it for more than 5 days because it can cause irreversible motor damage lmao. I have problems every day all day long so I can't be taking this long-term.

He said that if I was his patient this is something he would start looking into. And I think that's the keyword -- I need someone to actually consider these options seriously and offer it as a treatment, which means they have to follow up on it as well. Can't just send me home with blood thinners I have to monitor every week and say case closed. My hematologist kind of threw around these options as well, but as like something I could elect to do. But when I asked "but what is your professional medical advice?" she said "don't stop the medication, absolutely not".

I need to know that they're following my case and taking it seriously. All doctors (them included) tell me a PE is serious and needs to be taken seriously but I feel like they're just running me around in circles and don't want to take responsibility for treating me. I'm fine with continuing the disabling xarelto and other NOACs (that's your word of the day, by the end of this you will be an expert in pulmonary embolisms -- they're the "new" blood thinners on the market) BUT they have to recognize I'm disabled. It makes no sense to say "yes, you have nausea, yes it's caused by the treatment, yes you have to continue this treatment, but no we won't do anything about it"

I'm seeing my GP on Tuesday and will be getting her opinion as well. The problem with this GP is she doesn't know anything about PE and always asks the hetamologist before giving me advice. So basically useless, I can call the hematologist myself.

I'm going to look into getting my case transferred to another hospital that's apparently better at this type of stuff for a second opinion and to take up the treatment care. Also my hematologist only works on tue. and thurs. which is not helpful when I have an important question about my serious case on Friday morning. I can't do anything with this uselessness.

Then eventually also consider changing GPs and finding that has experience with PE because she can't help either. Basically until proven otherwise I need long-term care for this (even if it's just medication), I have a heightened risk of embolisms and that's what it is.

As was advised to me last time, the specialist refused to sign a certificate for my condition (i.e. a sick leave certificate). I'm not in the UK like the comrade is, but yeah. Same shit everywhere - you cost money and we'd rather put you through endless loops at your expense than give you what you need.

I went to see her earlier today and basically we spent 25 minutes talking about my condition and possible treatments and options. The discussion for that time was pretty much just the doctor agreeing with my assessment of my condition. It went like:

Me: "So my understanding is that there is a risk for another embolism if I stop the blood thinners"

Doctor: "exactly, yes, it's how you said"

We went over this risk, we went over the options (which is basically continuing the treatment long-term, that's the only option), we went over my symptoms of nausea and vomiting, and she agreed all the way and confirmed what I already thought. We also confirmed that it was caused by the blood thinners. But then in the last 5 minutes I ask for a certificate and suddenly she was like "ah but um it's not so easy and um" and I was like ?? we agree on the following:

1. The treatment causes me nausea and vomiting to the point that it makes me almost unable to leave the house and
2. It is her professional opinion that the treatment must continue because there is a real risk of developing another embolism AND
3. there is no other option but to continue the treatment.

But suddenly we can't put 2 and 2 together??

Like every medical professional I've seen underlines just how serious an embolism is but apparently I'm considered cured now, carry on. Should I stop taking my medication, go into anxiety over developing new embolisms every day of my life, develop them anyway (maybe after 3 months, maybe after 3 years, who knows)? Does that seem more reasonable?

She "explained" that a certificate is made bc of disease e.g. cancer, and once the disease is treated they go back to work. I was like okay but I'm still disabled lol. If the medication causes a disease, i.e. a disorder of structure or function in a human then surely you can diagnose that disorder that I'm currently feeling? I get that nausea doesn't sound "serious" but it's debilitating. Like yeah my life isn't threatened but if I can't operate normally (and I seriously can't hold down a job like this, any sort of effort such as leaving the house may trigger a day-long crisis. Doing that for even a day is unreasonable, much less for a long-term job).

I have two possibilities to explore currently, which is my psychiatrist (who witnessed how difficult it was for me Tuesday, like I had to stop at several points for minutes at a time during the session to do everything in my power not to puke), and my GP. I plan to call my GP tomorrow and get an apt to ask about a certificate and a recommendation for a second opinion. There's another hospital, though it's a bit out of the way, that apparently has a good hematology department. I'll insist to get a recommendation there, though I think I can probably just call for an apt directly. Regardless it's probably a good idea that my GP knows where this is at currently.

And then after that I'll see what else opens up and I'll start being a dick if I need to lol. Some bureaucrat can't decide what my day-to-day is like for me.

Using a throwaway to keep anonymous because I'm not ready to tie this to my main account yet, but you've probably seen me around.

Last year I suffered an unprovoked pulmonary embolism. If you don't know what that is it's blood clots in the lungs. I had several showing up on the scanner, with part of my lung being collapsed from non-usage. Thankfully, I had physical therapy and I'm doing great now in terms of lung capacity, back to pre-illness levels.

How to describe it, you basically go to bed feeling fine one night, and wake up the next day with searing pain in the ribs. I'm 30 (actually just turned 30 at the time it happened) and I understand not everyone gets pulmonary embolism as their 30th birthday gift lol, so that was worrying.

The treatment is simple, because some 10-15 years ago what's called new blood thinners came on the market. you just take a pill in the morning, it thins your blood and it dissolves the clots. Back in the day you'd have to get blood tests done every week to make sure the older blood thinners worked. You take the medication for 6 months and after that you should be fine.

Except my embolism was unprovoked, meaning that we have no idea what caused it. In that case the medication is extended "long-term", which is a nice way of saying "assume it's for life". It doesn't mean lifetime per say, it just means that we don't know when I can stop taking it.

For 9 months now I've had absolutely terrible nausea, as if my body was completely rejecting the medication. It can happen at any time of day for any reason, but is usually linked with physical effort (even any light physical effort like putting away groceries) or talking for more than 2 minutes. It can quickly transform into vomiting, though thankfully nothing comes out, but everything else is as if I was trying to puke my guts out.

It's difficult to convey how debilitating it is without writing a wall of text. This is the third time I'm rewriting this part lol. Just to give you an example, I used to go to the gym 3-4x a week before the PE. Because of the nausea, I can't go anymore. There's no point. Even if I feel fine before going, I know I will get sick on the way and even worse during the exercise. So what's the point of inflicting myself this kind of torture just to get half a workout in. That's the kind of decisions I have to make on the daily. Before we knew it was the medication side effect I thought maybe if I got back into a routine and physical exercise it would go away, but it didn't lol.

I had my specialist on the phone this morning to talk about the "new" medication I've been trying for a month (it didn't fix anything) and she basically said there's not much more she can do. We've tried all the medications because my case is quite specific in what it requires, but I have an apt with her on Thursday to talk about it more. And going on disability. If there's no solution (and I'm not expecting a miracle solution to magically make all of this go away), then I'll have to go on disability benefits. I mean, I've already stopped looking for jobs because what's the point? I know I can't handle one right now, I could barely handle going to the interview. I avoid long drives because it could be dangerous.

There is one silver living and it's that I was more of a homebody before that, so it doesn't completely upset my life. But I won't lie it does do something when you learn you can't do the stuff you could do before, instead of choosing not to do it before. that was a wall of text anyway lol, i tried.