Hi Heather,
I am so sorry about what you are going through ((hugs)) Lets hope your original doctor in Cali can help you.
I am not doing so good, the pain is bad
I have however heard from Great Ormond Street Hospital, London (UK) I am going to see a doctor there on the 25th March. He will have a look at me and if he feels there is something he can do he will try and help (from what we have been told by my PM doctor, he is really good) There is also a 3 weeks intense physiotherapy/treatment course that I could go on.
A tutor came to see me today about home tuitoring. He is really nice and helpful and I start home schooling on Tuesday. So that is something positive.
I am trying to get out with my friends more but it is hard because of the pain. I went out with one of my friends today, I had a good time but man I was tiered when she went home lol.
If there is anything I can do just ask.
Love
Alison