Oh, Leila,
Forgive me. I didn’t see the first part of your post, or the encouraging response from Red.
It sounds like you have a good team of doctors - that’s key, as is getting emotional support from friends and family because it IS a shocking diagnosis, in part because it’s so rare.
I was diagnosed in 2016 and honestly, what helped me the most was tapping into my inner strength and resilience. That, and like Red said, appreciating the joys, whatever they may be for you, even if it’s binge watching your favorite show.
Good luck with your many appointments. It gets easier, promise.