I am touched and I feel a sense of encouragement from your many responses to my promise to try and get us the recognition and the medical help we desperately need.
I will be working with Dr Wiseman ,Helen and several other key people to put together a survey and send it to all of you for reply.
I hope that once I have enough data on the issues at hand I will be able to begin the long, arduous task of petitioning local and regional and even state legislators to recognize us as a definitive group of sufferers in need of adequate medical attention.
Meanwhile, Please hang tough. Dr Wiseman and I need to make certain that anything you fill out or respond to is valid, legal and able to be presented to all parties for review.
I know you all have feelings of desperation, frustration and some of you feel you are not being taken seriously by family, friends and physicians. I hope to be the voice of the many, after I collect your feedback and process it.
I wish you all the love and hope for a more comfortable tomorrow. I will fight for us for as long as it takes. I am so damn tired of feeling this way and I want to be able to validate my pain and your pain to the world, one day soon. Hugs
ginny