I say not anymore but to be honest I never knew what the problem was in the first place. First we thought it was the blood thinners, now I've tried literally all of them and I still have issues, so of course logically it means the thinners are not the problem. Or are they?
I've had a pretty bad week all of last week, actually since I went to see my dr on Monday last week. Socially though my symptoms are mostly inhibited, which makes it hard for people to see how bad it gets and I think they either don't really get it or outright think it's not as bad as I make it out to be (how can you make "it takes me 20 minutes to put on a t-shirt because I have to fight the urge to puke at every step" clearer). I was doing fine from the moment I got into my dr's office, but upon getting home symptoms came back pretty quickly. From Monday up to Friday evening I basically even had nausea while doing literally nothing (watching youtube videos, which sometimes even that is too much and literally the only thing I can do outside of watching paint dry is read a book).
I invited some friends on friday to celebrate one year of the PE and right up until they rang the door I was actively fighting not to puke, outright thinking "should I get it over it now and hopefully that way it gets better when they're here?". Just as I was thinking about it the door rang, I went to say hi, and 2 minutes later the symptoms disappeared for the entire night. I was actually doing pretty good, because even when I don't have nausea I can kinda feel something is wrong in the abdomen area. But I digress.
Since Friday night though? I've been doing pretty well. I feel like never before. But I also feel like it's gonna come back, because it's been going on for a year now and I don't believe it will just get up and leave like that out of nowhere.
The one thing that has changed in regards to the meds is I got back on Xarelto beginning in May after around 1.5 months without it.
What do you even do in this situation? When I tell people I'm doing better for the past 3 days only (to be clear) they think I'm cured. But I can also feel that physical activity such as walking triggers mild symptoms again. I don't think it's as simple as "oh he's doing better job done all good move on with your life".
I'm grateful that I've had some past few good days. I want to get better. But I also know with 99% certainty I'm not actually better, and doing anything will trigger back the symptoms again and I'll be back to square one. If the weather is good this week and I'm still feeling good I'll try to go take a walk and see how I fare, that's about the best troubleshooting I can do on my end.
What is even the problem at this point. It's not the medication but changing the medication makes things better for a little while. Social situations (depending) inhibit symptoms for a while. I say 'depending' because since a couple months ago going to my therapist does not stop the symptoms, she actually saw once how difficult it was for me to even talk (couldn't get more than 5 words out without getting the urge to puke). It's like, I can puke on the fucking side of the road while walking there, breathe heavy in the waiting room, and then as soon as they call me over I'm suddenly all good. There is a clear link with physical activity (of any kind) though. Sometimes after eating I also feel mild nausea and sometimes I don't. No idea what that means either.
My best guess at this time is something similar to how you can puke if you exercize on an empty stomach. This is your body's way of saying "I don't have the nutrients currently for what you're asking me to do so take it easy". In social situations, my body may decide that it needs to prioritize this over trying to send me a message or expel whatever it wants to expel that it can't. I have no idea but it seems to make sense to me.
I gotta say, as someone who has been both a deep skeptic and a cancer survivor, it is worth exploring complementary practices. It sounds like there is a strong mind-body connection to your symptoms based on your reports that changes in social dynamics (being alone -> going to doctor; waiting for guests -> guests arrive) cause changes in your experience of your symptoms. I have engaged in multiple types of "woo" and I have experienced things my skeptic history tells me I should not have been able to experience.
Since looking into it, it seems this is actually a common story - a person has chronic, persistent, or long-term dynamic and medical professionals only take them so far, so they explore the scores of different "woo" out there and end up finding some things that change their experience of their symptoms. Different people respond to different things, efficacy is suspect, but the person reports alleviation of symptoms and achievement of desired outcomes.
If you haven't explored complementary modalities, I would recommend them to you based on my experiences.
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.
I can't imagine what you're going through, and it sounds difficult. You my empathy and my sympathy. There are some complementary practices you can engage with via video call. I find direct person-to-person works better for me. But many people I respect have found benefits from working with people via video call. There is something out there for you. You are not trapped and you are not doomed. I know you'll find something.