Posted by karen (205.188.193.158) on October 30, 2000 at 08:40:15:
in as much as there is no breakthrough medical information coming in right now, no dedicated research into this affliction, all we can do collectively is come together like this, share information, network
and join OUCH. We have to do things on a community level. I urge everyone reading this to do at least that.
Let's fight with the one arm not tied behind our back.
As for privately, the best advice I can give is find friends from this board with CH/Cph. Talk to them.
Learn what works for them and what doesnt. Have someone you can call when the rest of the world doesnt understand you. Its a fighting start to getting back control of your life.