I don't know if I told you but my husband just turned 54 in July right after he got sick.
I don't cry as much as I did at first. People told me the pain would get better with time but I didn't see how it could. But believe it or not it has. I still cry and I am still sad but not as much as I was. When I go to church I can be just sitting there and will all of a sudden start to cry. No apparent reason. Nobody said anything, or did anything I just cry. Sometimes I feel so lonely that I think I can't stand it any longer but somehow God gives me the strength to go on. I have to. My mother is 87 years old and in fragile health. She needs me. My children need me and my grandson needs me and my soon to be granddaughter needs me.
I don't know if we will ever know the answers to the questions we have about this disease and as you say it is so rare that not much research is being done on it as far as I can tell. I have looked and searched the internet, called hospitals all over the country, talked to drs. but no one seems to be able to say where it starts but I do believe my husband picked his up in Viet Nam and I will forever. I can't prove it but since it is so rare and he was over there where he could have picked up the chinese liver fluke, I will always believe that is where he got it. Of course, the VA will never admit it without solid proof and I don't have that.
Hope you have a good night and a good Mother's Day.
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