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Bobbi0725 
7:34pm, February 16, 2009
Well I went for my weekly check-up on Wednesday and got my weekly supply of the Xyrem. The nurse told me that the last 3 patients recieved the placebo and backed out of the study. I really can't say that I blame them since we can't take anything for the pain except for tylenol (whatever......ugh) and then they were getting no active ingredient to help them. The nurse also slipped and told me I was getting 4.5 mg per dose which is the lowest dose of the active ingredient I could get. But she said that very soon the dosage would increase. I think she meant that the new medicine would increase (to 6 mg per dose) cause it acted much differently that night when I took it. I still am not sleeping more hours, just more restful.......except for last night. I have been taking it and going to sleep around 11 and back up at 2 or 3 in the morning. I took it last night and didn't wake up till 7 this morning. That's the first time I have had more than 4-6 hours sleep in a row and I feel pretty good this morning. I have alot of stiffness but it usually wears off in a few hours after I'm up. I have a busy day ahead of me.....and the last time (2 weeks ago) I made plans for a day out of the house I had a flare and was sick for over a week and lost 2 days of work. I'm not sure which is worse......my Mother's wrath or a week of being sick. I'll take my chances and hope I don't get a flare over going to a pic-nic today.
I also want to say how much I appreciate everyone on this board. It has been such a blessing to know that I can come here, read your stories, laugh and learn.
Hugs to everyone :)
Bobbi
