Hi Emmaleeak

So sorry to hear this. It is scary when you get that first diagnosis and frustrating when you have been looking for action for such a long time. And, then you have to wait weeks for further tests and the board review to stage everything and recommend a plan. What helped me was taking constant notes and keeping journals. I had one for my feelings and thoughts and one specifically for medical notes. I would review them often and find new things to research or take action on or ask someone about. It made me feel better to do something.

Coupling all this with C19 restrictions is tough. I would call loved ones after my meetings and just download. In some ways, it motivated me too. When I was recovering in the hospital this April, I did everything I could to get home soonest possible so I could be with family. Hang in there! Hoping for a complete picture for you soon and good doctors/support.