@Janet Dafoe (Rose49) thank you so much for the snippets of what life is like at Stanford. Every snippet is important to maintain hope. Science and funding process is so slow. There seems to be no sense of,urgency unless you are either a patient or a family member- but there are a few exceptions to this. That is so frustrating. I keep on hoping that physicians and health care professionals i have contact with could understand what is happening in my body and what it feels like, but they do not have the slightest interest. I had a 4th surgery to my ankle as of late and things didn’t really go well att he hospital, i had to stay 3 night, in a room with 3 other patients, always one who could not stop talkimg loudly with the call bells ringing non stop amd seemingly no one answering them. There were horrible pain issues and the doctors that came to visit could not even ask me questions about my condition, they simply read in my chart and who knows the kind of informtion that is written in my chart. I was over-sedated and people kept poking me seemingly every 5 minutes just to remember to breathe, and yet i was in so much pain. I had fevers and sweats and yet no infection. The local ansethesia I got, the tubing disconnected and so that cathether was pulled out. Things went south after that. It will take me a long while to recover from this. There is so much work to be done, and it is too much work for the very few ‘believers’. The experts are now at retirement age with no one to take over. Scary times.