Thanks mike... ugh, I completely forgot about the skin cancer risk.... I live in the south and have been in the sun most of my young life (hardly any sun from 25-now.32) just been too busy or ill.. However I will be outside a lot this summer (heat makes my symptoms worse, so I'm a bit nervous).. but that is a very good point...as have worried that I have a basal cell already.. I feel like It is a constant battle in my mind... do I accept that THIS is as good as it can get.. I am thankful for where I am.. but then what if there is something that could make me even better.. make me not feel completely awful.. but if it makes me more sick then i'd regret it!

They are thinking I may have crohns too - so weight loss is a major issue with me.. when my stomach flares I drop weight like crazy.. plus I used to be in good shape - had good muscle.. and the last 2 years I've been sick with all my GI symptoms plus muscle weakness... I struggle to keep my weight up..