Lizzegrl Posted February 26, 2009 Report Share Posted February 26, 2009 It is a big ditto here too! I take two showers a week at most with not hot water and planning ahead so that I have alot of rest afterward because it totally wipes me out. I had to give up baths when I was younger because I just had too many concussions fr om passing out. I had a no baths without my mom at home rule because I was too unstable. I also get lobstery and can't guage temps very well so I just avoid them. My entire body gets blotchy, I get heat rushes, then chills... you name it. After waking up naked and with a bloody head once too often a hot shower or bath just has no appeal. So I do alot of washing up then cool showers twice a week. It is so nice to have found a place that validates some of the previously unknown wierd stuff that has gone on with my body! I've had this thing since birth, but they have never been able to pin down what the actual cause was until this year. Finding Dr. Grubb was a miracle for me and I'm still learning what the disease actually is and how much it has impacted my life. Quote Link to comment Share on other sites More sharing options...
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