Gastroparesis & Me

doctor: have u tried not getting worse

My idiot doctor has decided to pull my line because she thinks I'm using it as a crutch and by removing it I will magically be able to eat. That makes sense right?! FUCK NO IT DOES NOT. I'm highly annoyed with this whole situation and no one wants to listen to me, the fucking patient who knows what is going on in the day to day scheme of things. I have decided 100% that I am transferring care or just not getting care at all at this point because that's about the same level of helpfulness Doctors are these days. I am so fed up with this kind of care. I have been to multiple hospitals and the inexperience these people have with GI motility disorders is sad and pathetic. I guarantee you I know about this stuff than them but they don't want to listen because that would meant they'd have to admit they don't know everything and God forbid they don't know more than a patient. How I will sustain my nutrition? I have no idea. How will I stay hydrated? I have no idea. How am I going to survive? I have no idea. Now I know that last one is a little dramatic but it's also true after a while my body is going to start shutting down and either another line will have to be placed or another extreme measure will have to be taken. I'm seriously concerned about these things and not on healthcare professional seems the slightest bit worried.

Fuzzy socks and ER visits on my snow days. My Central Line had a clot hanging on the end of it clogging my line so ended up in the lovely ER while we are in a blizzard. They put some of the clot buster liquid through both lumens of my line to hopefully unclog one side of the line and prevent any fibrous clots from forming in the other. Hopefully it will be a nice short visit with no admissions 🙌🏻

Sometimes you hit your rock bottom and it's because of something you have no control over, but that doesn't make hitting bottom any easier. Can't go back up to Umaine due to my GI issues, my liver, and my kidneys & while I knew it was coming it has not made this weekend of not being able to go back any easier. I'm so upset to being away from all my friends, my sisters and my support system. I just feel so stuck and like everyone else is reaching their goals and moving forward and I'm just stuck.