Guest guest Posted January 31, 2000 Report Share Posted January 31, 2000 > Luanne, > as the care giver we go thru alot more that others would expect...and since we > always have to have that strong " we are > getting thru this " look we can get very TIRED and then feel ashamed because we > are not the ones who are sick...It is a cycle that never ends. The outside world thinks this but I know that this group doesn't I think that's why I'm on it so much because I get so many warm fuzzies. Our friend's understand more than most about what we are going through because we have spelled it out for them. I think they can imagine what Phil is going through more than me, maybe not. It's just nice to know people who truly understand. I'm feeling so pressured about taking on this President of our square dance association and the people we are closest to that we met through this, have backed out and decided they have more important things to do - in the year we are President. I feel abandoned. The people that are supporting us live farther and keeping a relationship with them in the future would be harder. The main people that were our support at church had a falling out with the minister and have left the church. We really like the minister and his manor of preaching (which we can relate to so we don't want to change churchs. Besides Phil has taken the position of Treasurer). He is a good delegtor and I'm not too concerned about his over-doing it there. They needed someone with his knowledge and business sense. All these things give him a sense of worth since he is on disability. They give me a sense of frustration and panic and in a lot of ways I feel left out. I know that doesn't make sense. As they say, you have to be there. Anyway I feel like I'm not the sick one so I have to give in. Just as you said. It's hard. Phil does pay attention to my health and watching out for me and puts a great deal of importance in keeping me well. Do you want to hear something ironic, he was very close with his inlaws they were is real family. They didn't want him to marry me because I was too sickly. What a crock. I think my health problems (none serious) have helped me to be more understanding of his illness and what he is going through. > ...One of > the main reasons I think this type of message board is so > important....information and lots of support for all...Like you with Phil. > .Ty > wants nothing to do with being on this and talking about himself...He so > tries to ignore what is going on...NONE of his friends really know the truth > about why he is always out of school and in the hosp....He is thinking of > telling his girlfriend some of the truth.. If they are at all serious he should do that. Even though there might be a risk but he owes that to her and that will show how well she can handle it in the future. > .Most of his friends know it is an > AUTO-IMMUNE problem but they don't really ask questions and Ty doesn't offer > anything... It's got to be so hard for a teen who hasn't even begun his life. I don't know how you bear it. > > Have you gotten a beeper for Phil yet. No his is just a status 3 and with O blood it will probably be a good 2 years unless is gets very sick. He got listed mainly because of the infections. His liver tests are still good and the biopsies haven't shown much if any liver involvement. It's his main bile duct that is the problem. > ..I understand your mixed feelings > about him being listed....It is definitely a YEA......BUT situation. We were just paniced because they were taking 2B and beeper (I don't have a clue where that was coming from) but he is exactly where we wanted him. On the list so that when he needs it he'll have put in his time. It's obvious that Kaiser and the UCLA tx team are very concerned about the infections and more agressive BUT then there is UNOS and the amount of livers available. is much worse off and she doesn't have a beeper yet and she's a 2B. She is a different blood so at least she isn't in competition that would be hard. But we know she will need one sooner. I'm amazed at how good she looks and she has a real nice figure too. - - I'm jealous of that. > ...Take > care of yourself....Phil and everyone here need you..... Thank you that makes me feel so good, actually it makes me want to cry. I have grown to love all of you so. I never knew that I could care about people so much. I never have before. > > Enjoy your lovely weather...we still have plenty of snow here in NJ...but it > is not as cold...Its about 34 out....compared to what we were having, -20's > for month of January....brrrrrrrrr.... > For us it's been brrrr the last few days it's only been up to 50 or 60 and rainy so it feels colder. There has been frost on the rooftops in the mornings. Last night they said snow would be down to 6000 or maybe 5000 feet. We live about 2000 and in a more deserty area than LA nothing like Las Vegas though. We have plants with buds flowers on them outside, I bet they are confused. > Thanks again for sending that message to JQ... > As you probably noticed, even though I gave her your idea which sounded like she'd follow it, she hadn't. She's supposed to go to the doctor tomorrow. Pray for her. > Luanne Ty's mom > Peg > > ------------------------------------------------------------------------ > Save 50% at MotherNature.com! See site for details. > http://click./1/766/4/_/24674/_/949331046/ > > eGroups.com Home: /group// > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
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