and the prognosis has changed yet again. don’t get me wrong – the team of doctor’s, specialists and all support folks are the best. truly. but (yes-there’s always a *but*) i admit it gets frustrating when the diagnosis takes such a long time due to complexities or not fitting a specific profile and yes, when the prognosis changes with what seems to be the wind. frankly, i’m tired. mentally. physically. emotionally. and yet all one can do is look each day in the face and keep moving. no matter how long or short the journey to the end may be.
is me is really me 
Good girl. I am sorry for your struggles ❤
XOXOXO!
You are so very strong! I totally admire you. I can’t imagine how hard this is. Hugs to you xx