Guest guest Posted April 6, 2002 Report Share Posted April 6, 2002 She didn't say for sure, but she did say that having a liver disease makes tends to make people have skin conditions. I told her that my guess was that this was autoimmune related and she shook her head yes. That was about all that was said. I am finding that the more the PSC progresses stranger (and more of them) things seem to happen to my body. Not only do I have the rash I have problems with my circulation, and now you can see my veins in my legs, arms and hands. It's almost as if my skin is becoming more transparent. Of course, it isn't really it's just my veins are more prominent and then there are those ugly vericose veins. I wasn't expecting a lot of this until I was ALOT older. Oh well, I've been telling the docs for years that my body thinks it's 103. (Really, I'm only 38, 11 mo., and a few days old!!!) :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2002 Report Share Posted April 6, 2002 She didn't say for sure, but she did say that having a liver disease makes tends to make people have skin conditions. I told her that my guess was that this was autoimmune related and she shook her head yes. That was about all that was said. I am finding that the more the PSC progresses stranger (and more of them) things seem to happen to my body. Not only do I have the rash I have problems with my circulation, and now you can see my veins in my legs, arms and hands. It's almost as if my skin is becoming more transparent. Of course, it isn't really it's just my veins are more prominent and then there are those ugly vericose veins. I wasn't expecting a lot of this until I was ALOT older. Oh well, I've been telling the docs for years that my body thinks it's 103. (Really, I'm only 38, 11 mo., and a few days old!!!) :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2002 Report Share Posted April 11, 2002 Maureen, Thanks for the prayers, we'll be needing all that you can send up! And, I do know that God accepts me the way I am, tears and all. I know that he has given me so much by answering my prayers. You see, when I was first diagnosed the docs said 3-5 years, no more, without a transplant, but I asked God to please let me get my daughter raised and whatever happened after that I would accept *graciously*. So when I cry and ask for more I feel like I'm not holding up my end of the bargain, and that I am not appreciative of what He has given me so far. However, when I am rational, I know that he knows my heart and that I am TRULY grateful for the blessings he has given us (my family included). Obviously I am thinking clearer today so hopefully it will last. Thank you again for your support and prayers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 So when I cry and ask for more I feel like I'm not holding up my end of the bargain, and that I am not appreciative of what He has given me so far. However, when I am rational, I know that he knows my heart and that I am TRULY grateful for the blessings he has given us (my family included). Obviously I am thinking clearer today so hopefully it will last. Hey , Sorry to hear all your latest worries. God knows what it is like after all he was a man and knew tears and laughter. His earthly father died when he was quite young, his cousin the Baptist was killed but he knew happiness too. so just look to Him and he will gladly support you now and always. Love Barbara (UK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2002 Report Share Posted April 12, 2002 So when I cry and ask for more I feel like I'm not holding up my end of the bargain, and that I am not appreciative of what He has given me so far. However, when I am rational, I know that he knows my heart and that I am TRULY grateful for the blessings he has given us (my family included). Obviously I am thinking clearer today so hopefully it will last. Hey , Sorry to hear all your latest worries. God knows what it is like after all he was a man and knew tears and laughter. His earthly father died when he was quite young, his cousin the Baptist was killed but he knew happiness too. so just look to Him and he will gladly support you now and always. Love Barbara (UK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2002 Report Share Posted June 15, 2002 - Sending prayers your way. So sorry about your latest news. Take care of yourself. Do what you can for your mom- but make yourself & your family the top priority. My mom was similar- very needy/great at making her daughters feel guilty. DON'T! You've been wonderful to her & now you need to do the same for yourself. God bless! Kath Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2002 Report Share Posted June 16, 2002 Your Mom is going home (to Florida) June 26? Why not ask her to leave it open ended, instead of the return date of July 8? Tell her you want to be sure you are "recovered enough" to care for her in the proper way. All airlines allow an open ended return. That way you won't have to have a talk with her now, your family will be more comfortable with a date for her leaving - and when the time comes that she starts to ask about coming back you can talk to her over the phone instead of in person (quilt trips are harder over the phone.) At that time you can talk about her coming back but ONLY under certain conditions. Such as an apartment or assisted living center. Plus your brother and step father are there to care for her if needed. You already know her doctor's care there was ok. Barb In Texas Son Ken (28) UC 91 PSC 99 she is down there June 26-July 8. I hope things get settled soon! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2002 Report Share Posted June 16, 2002 Your Mom is going home (to Florida) June 26? Why not ask her to leave it open ended, instead of the return date of July 8? Tell her you want to be sure you are "recovered enough" to care for her in the proper way. All airlines allow an open ended return. That way you won't have to have a talk with her now, your family will be more comfortable with a date for her leaving - and when the time comes that she starts to ask about coming back you can talk to her over the phone instead of in person (quilt trips are harder over the phone.) At that time you can talk about her coming back but ONLY under certain conditions. Such as an apartment or assisted living center. Plus your brother and step father are there to care for her if needed. You already know her doctor's care there was ok. Barb In Texas Son Ken (28) UC 91 PSC 99 she is down there June 26-July 8. I hope things get settled soon! Quote Link to comment Share on other sites More sharing options...
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