May 3rd, 2019 at 06:30pm
Okay I don’t want to be that person because I do not have a chronic illness such as yours (I’m epileptic, but that’s kind of small potatoes in comparison to CF, or at least the kind I have), but anyway, pleeeease advocate for yourself. Tell these doctors what you are going through and your experience and history and EVERYTHING. Don’t become a number to them. Don’t die trying to avoid the hospital, which I hate too, so it’s understandable. But just. Advocate. Even if it means taking a tone or having a freak out because they can’t feel what you feel.
Second, could you tell me what your nosebleeds have to do with your overall condition? Like, what part of CF causes that to happen? I’m not super familiar with it and am curious.
Oh believe me, I do advocate for myself. But sometimes there are just some people that are no reasoning with, no matter how hard you try. And sometimes it doesn't payoff to pick certain fights... I have to choose my battles.
As for the nosebleeds, CF causes an over secretion of cement-like mucous, so it really gunks up my sinuses. I've had 6 sinus surgeries throughout my life so far. And with each surgery, there's a chance of hemorrhaging, like I've experienced twice now. If my sinuses get too dried out, they bleed. But like I mentioned, my ENT (ear, nose, throat) doctor wonders if I might have a bleeding disorder because of HOW MUCH I have nose bleeds.