ALOHA Fizzo,

Yeah, it's unbearable. I ask the same question of myself daily. I honestly don't know how I've been able to survive as long as I have. I've read your posts and know how deeply you suffer. Unlike you, I haven't had any response to meds or therapy yet...but...I'm hoping for even just a moment of relief in the next few weeks with Nardil.

Some days all I have to hang onto is the thought, "well, I've got to hang in here long enough until they find a new treatment that I can try."

I look up all the current worldwide Clinical Trials at least weekly and know they are making some progress. There's a lot going on right now and I want to be first in line should something new become available.

In the meantime...most of my days...are filled with "postponing Sui" 5-minutes at a time. I am loved and will do whatever it takes to prevent causing others harm. I keep things very simple and congratulate myself for even simple accomplishments like taking a shower. ("YIPEE, YEAH, GOOD JOB...YOU DID IT!!) (I'm sure glad no one can hear me!)

Remember, you HAVE had some reduction in your symptoms which means it CAN happen again. Hang onto that fact in those dark, hopeless times.