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Or to be exact, being expected to do so. When I was first diagnosed with type two NASH (apparently type one is little known, but curable..and type two is even less known and not *shrugs*..or that is what I am told) I was told "You will be lucky to live 2 years. Nothing we can do but make you comfortable."
For two years I wallowed in self pity, and basically did just roll over and wait to die. But..obviously .. it never came. Despite there being no cure..it just sort of went into hibernation. I wasn't cured..but it was just .. not getting worse. No rhyme or reason why. After awhile, I got tired of feeling sorry for myself, and decided what happened would be out of my control anyhow, so might as well live
I've beaten the odds for 13+ years. Recently its been acting up again, and it is another round with the doctors. Who INSIST I need to be bed ridden in a hospital, just waiting to die. Cause I have 'no more then six months'. Which since it pumps toxins back into my system instead of cleaning it like it should, it is a bad thing. I get it. Heck, some days I have NO energy and the pain can be unbearable. I went through it 13+ years ago.
We all are not guaranteed tomorrow, so pardon me if I don't feel like laying down and dying. If it does take me down, it's going to take me down kicking and screaming and living my life. Pardon my language but screw it and the horse it rode in on.
They keep saying things like "If it wasn't inherited we could put you on a list, and get you a new liver and everything would be fine." Which doesn't help at all. Since my blood would poison any liver I get, no list for me. Too 'high risk'. So why bother telling me that? False hope, cause it is not gonna happen.
Meds can 'ease the symptoms', but to do so they would basically put me in a walking fog where I would hardly know where I am at. Wouldn't stop anything, just make it easier for me and harder for my loved ones. Again no thanks. When this thing has me in the ICU then we will talk, until then, go away please Dr.
I heard you the first million times Doc. Nothing can be done, need to let you 'ease the symptoms'...yada yada yada. I got it, I had it for 13 years. Now..listen close.
I. WILL. NOT. JUST. LAY. DOWN. AND. DIE.
Sorry just had to rant. Grrr.
For two years I wallowed in self pity, and basically did just roll over and wait to die. But..obviously .. it never came. Despite there being no cure..it just sort of went into hibernation. I wasn't cured..but it was just .. not getting worse. No rhyme or reason why. After awhile, I got tired of feeling sorry for myself, and decided what happened would be out of my control anyhow, so might as well live
I've beaten the odds for 13+ years. Recently its been acting up again, and it is another round with the doctors. Who INSIST I need to be bed ridden in a hospital, just waiting to die. Cause I have 'no more then six months'. Which since it pumps toxins back into my system instead of cleaning it like it should, it is a bad thing. I get it. Heck, some days I have NO energy and the pain can be unbearable. I went through it 13+ years ago.
We all are not guaranteed tomorrow, so pardon me if I don't feel like laying down and dying. If it does take me down, it's going to take me down kicking and screaming and living my life. Pardon my language but screw it and the horse it rode in on.
They keep saying things like "If it wasn't inherited we could put you on a list, and get you a new liver and everything would be fine." Which doesn't help at all. Since my blood would poison any liver I get, no list for me. Too 'high risk'. So why bother telling me that? False hope, cause it is not gonna happen.
Meds can 'ease the symptoms', but to do so they would basically put me in a walking fog where I would hardly know where I am at. Wouldn't stop anything, just make it easier for me and harder for my loved ones. Again no thanks. When this thing has me in the ICU then we will talk, until then, go away please Dr.
I heard you the first million times Doc. Nothing can be done, need to let you 'ease the symptoms'...yada yada yada. I got it, I had it for 13 years. Now..listen close.
I. WILL. NOT. JUST. LAY. DOWN. AND. DIE.
Sorry just had to rant. Grrr.
I don't think it is bravery. Just heard the sky is falling for 13 years, now I no longer bother looking up. First two years, I did just lay down and wait to die. After that, got bored of hearing it from the doctors.
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