Hi there @Jolanda, I’m happy to introduce you to the wonderful community of Living With Facial Pain! I am saddened to hear of the loss you’ve had. I’m so lost for words, I don’t know what to say. It just really saddens me to know what you’ve been through. I hope you’re doing okay now. If you have any questions, please feel free to message me.
I’m so happy to have you in this community and I think you just came to the right place to learn more about your diagnosis. Our community is full of people who loves sharing their own symptom and treatment experiences. So, I encourage you to start getting involved by creating your own discussion thread. You can do this by going to the home page of the community and then look for the “+” button in the right quarter. After creating your thread, just click the “Create Topic” button and that’s it. 
Eymie