Thanks everyone for your replies. I know it's very messed up with my family (mainly my sister) for some reason being resistant to me going to the hospital and if I were in a different more reliable living situation, I would myself go to the ER, but my living situation adds to my problems with this.
Because of the extreme nature of what happened to me in the hospital and being so out of it and sick once I was out of the hospital, I've had to move in with my sister and her husband. I was living a completely independent life before all this and now I've become very dependent on my family. I am SO SCARED of doing or saying something wrong because I totally fear making anyone mad and having to look for somewhere else to live. If it were the old me, it wouldn't have been such a big deal and I'd go ahead and get to the hospital anyway, but the fact is, I need a caretaker whether I like it or not and I can't even fathom the thought of having to leave and take care of myself. Not at this point anyway.
I'm not sure what the actual issue is with my family; it's mainly my sister, who is a wonderful, lovely person and I know she doesn't mean to, and thinks she's doing what's best for me, but in the process she's flat out ignoring things I tell her about pain and other strange things I feel. Why? I don't know, and it's something I have to deal with to get through to her. But it doesn't help when I go to the doctor and when I try to bring up how bad the pain is and how I think there's something wrong, and all he can say is that I'm a medical miracle and shouldn't be alive and that I am alive should be enough, so what if I hurt? It's that kind of bs I'm dealing with from everyone...just be glad you're alive because you're not supposed to be. That's the attitude EVERYONE in my family and now my new doctor also has, so it's like I have no one in person to turn to who isn't completely biased by what's in my medical history.
Part of my sister's problem, I think, is when I first got out of the hospital, I was still pretty out of it: I don't remember much about the first month I was home, but that's partially because the first week and a half I was home I was completely abusing my pain and anxiety medications. Not because they made me high, because they didn't, but because the normal dose does nothing for my pain so I took 2 or 3 pills at a time. My sister found out about it and at that time she was doing everything all the time for me, including changing/emptying my bag, cleaning me, feeding me, everything. When she saw I'd taken a lot more meds than I was supposed to, she took them from me and hid them and just gave them to me however many times a day the bottle said. Which is fine, I understand why she did that, but she's STILL doing that too. I have to ask her to get me a couple pills for a freakin headache too, she even keeps headache pills away from me.
I think it's that whole thing, she took my pills when I had a blockage and was in severe pain, rocking back and forth, sweating, throwing up, BEGGING for her to take me to the hospital (and she didn't), thankfully it passed but I think she thinks, because I initially abused my meds, that I'm faking it when I tell her how much it hurts. She doesn't realize the LAST thing I really want to do is go to the hospital, I already spent months there last year into this year and I never want to go there again unless it's an emergency, so to ME it should say something, that I'm seriously in pain if I'm actually asking to go to the hospital. But she doesn't see it that way.
She goes in with me for my doctors' appointments: that's not because she wants to, I've asked her to go in with me because I have such a terrible memory, and she remembers things I want to tell or ask my doctor. But I'm gonna start a new line of dialogue with my doctor that ends with him saying "if you feel that way go to the ER". I think if she hears it from HIM, she'll be more open to taking me next time I'm feeling that way.
It's all so very twisted and messed up. Nobody asks for this, but then sometimes the whole existence is altered: no more independence also means no more free will apparently, and now my sister who used to just be my best friend is also acting like my mother, which is just weird to me.