Guest guest Posted June 16, 2001 Report Share Posted June 16, 2001 Hi there. The inspiration and support from this group is overwhelming and I do appreciate your kind words. and I understand what you mean when you say you feel well you want to do as much as possible cuz you are right there are more bad than good days.. Have you tried for SSI and have you had any luck.. I have had a ruff time with this disease and thinking that i may end up alone is the hardest thing for me right now.. Who would want me if something happens with this relationship .. I dont know you are right I will take it one day at a time.. and when you dont feel well take it from me a nap helps.. not overdoing it.. YOu are a inspiration to me and thanks for caring > Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2001 Report Share Posted June 16, 2001 Hi Terry. Was just reading your letter and just wanted to remind you that when you feel you are a burden think of how they would feel without you. You hang in there and try not to let it get you down. Good luck with your tests. All we can do is take a day at a time. I have had a burst of energy this week and have been cleaning like a mad woman. I know I'll pay for it later but..... My husband keeps saying your doing too much but so many times I'm too tired to do things so I just have to take advantage of the good times. I have gone back and forth about my job. I'm so afraid if I go out on disability I'll get worse. Probably sounds screwy to you. Lots of times now when my joints are killing me I don't even want to tell my husband because I know he's sick of massaging me. My daughter, Maranda has been my biggest help. She will be leaving for Calif. when her husband returns from Japan. Two yrs. before they can move back. Sorry I wrote so much,just needed to vent and I felt your pain. Judy,Pensacola,Fl.AIH98 --- themountaineers@... wrote: > HI there. I am also one of the lucky people who > developed this out of > control disease that they do not know alot about. I > was just > yesterday told that I am in the cirrohotic stages of > my auto immune > hepatitis. So, once again I must go and get the cat > scan done and the > gastro scope and probably a dreaded liver biopsy.. > > I am like you scared every day not knowing what to > do or how to get > help since SSI just seems to blow us off.. This > disease and our > syptoms are for real and we never know what the day > holds for us cuz > her disease gives us no warning. > > Just the longing for retreat and little comfort. I > have a significant > other but this disease has changed me so much and I > am just tired. > Tired of fighting, tired of feeling like I am > nothing but a burden to > them. I know that they would be better off without > me but I continue > to get up every morning and do what chores I can.. > But like you my > sex drive has pretty much turned into something of > the past. Not that > I dont long for it but I am afraid too because of > all the abdominal > pain we suffer. > > I wish that we could make the government and all > others see exactly > what we have to go through every day. This is > chronic and fatal and > that we deserve some type of benefits.. and help.. > to live a semi > normal, happy , rest of our life... > sorry to burden you. thanks for listening.. > Concerned,scared, tore > up. Terry IN WVA > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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