Your few messages above have actually really helped and yes, does make me feel like I'm not alone.
I did share with my husband my fears and although he's optimistic things are fine, he did reaffirm that whatever happens, we'll face together.
I'm working on the disability insurance before getting worked up, so that will take a few months. In the meantime I'm going to kick whatever this is in the butt. I do enjoy the small things in life, and I don't think I want that to change. I'm going to stay as active as I can and if I feel tired, I'm going to make myself get up, because I can.
I'm in healthcare, and the knowledge of this is almost a double edged sword.

Things happen to people everyday- accidents, diseases etc. Stuff happens. Its just that with this, well, we almost know what may happen.

How do you deal with the anticipation of what may follow- how much longer will it be before I'm in extreme pain/too weak to walk/unable to work etc??