Beautifully written!!!!! Sooooooooooo true! At least things are better after this last IV IG - can't wait to have a port put in!!!!
Merry Xmas!!!!
ERin
Quote:
Originally Posted by rumpled
*clap clap clap*
We have the appearance of being ok, no one can look at anyone and see blood tests (even though I do try to point out that my tan and dark knuckles are from my high ACTH) and yeah, I have been told well, you look fine, did great today etc. when I know tomorrow or even later I will pay for trying to look normal and enjoying myself.
Who wants to be sick? I am not quite sure what they expect to see but I have been in SSDI (disability) for a couple of years and got it first try. That would not happen if I was just fine. Yeah, so I do push myself in the rare instances when they come around as I want to pretend for a while too - I know I am going to hurt later. I guess unless there is an obvious physcial manifestation - we need a sick-o-meter on our foreheads (which, by the way, would be most helpful for most docs who are oddly blind too!) so it is patently in front of their eyes.
I still get *well, maybe you will feel better tomorrow* and I roll my eyes - dude, do you not understand the meaning of CHRONIC? Hey, if the health fairy came along and waved her wand, I would dance naked in the streets (no one would like that), but I do not see that happening. I usually say fine when people ask me how I am and some take that, instead of being polite - as I am on my way to health! So if I tell them how I really am, they cannot understand it and if I am polite, they think I am great. No win.
End of rant...ooops.
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