[Jimmy-J]

Originally Posted by Sandstrom

My husband also has this rare illness and it is very hard to deal with. He has a very serious case of CVS. Last year was this scariest time in my life.... he wrote a WILL in secret and I,at 27 years, a mother of an eight year old and a wife for 7 years , was starting planning for the end....which just ate me alive... I have this contiunious fear of losing my soulmate, my best friend. It was the first time we had an encounter the illness and it was life threathening. As he body started to shut down, which he was sick over 7 weeks in the hospital, lost of 30 lbs and the list just goes on, there was a doctor that was new to the area that gave him a medicine ( I sure its spelled wrong but...thorazine) shot form, and THE only Med to work ...... I am sorry to hear that you are also sick with this unforgiving illness... best wishes and praying for all those who suffer from this sickness.

Sorry to hear that... Welcome to the forum.