Guest guest Posted October 5, 2001 Report Share Posted October 5, 2001 Pamhplet for families! I LOVE THAT IDEA!!!!!!!!!! Amy > > Re: to surgery or not to surgery, that is the question? > > > > Jenn > <snip> > > I also wanted to suggest you have your parents join > > this group and if they do not have internet access > > maybe you could print some of these postings. > > Jenn > > If you could handle having your parents join, or maybe have them get the > daily digest....I think this would be an excellent opportunity to educate > them. It wouldn't be just you saying or experiencing these things...there > is 100 of us! > > To be honest, I don't think I'd want my parent on the list...too much > information is not good for her (lost my dad last month.) My mother, and > especially my sister was the same way as your parents. She just couldn't > fathom having surgery, getting worse, needing more surgery and having that > be the norm. She was continually after me to find another doctor, sue, etc. > It was exhaustive to talk to her (I stopped talking with her about four > months ago and I've got to tell ya...my energy spiked about 10% within a > week.) I was constantly comforting her...it was a total reversal of what it > should have been. I was the one that had to " deal " with her issues over my > decline..not the other way around. > > With my mother it's total guilt. She feels guilty over never telling the > pediatrician we had in Mass. about what the pediatrician in Oregon said > after I was born (the " tell-tale " sign of an open hole after birth.) > > I had constant bladder/kidney infections, painful legs, etc while growing > up, feet problems as a child, and she never put two and two together and > told our new pediatrician about my open hole at birth...or maybe she didn't > want to face what it meant...that's my suspicion because of little hints she > says during our conversations. > > She cries all the time about this stuff, and to be honest...it's getting > old. I don't cry over it and I don't want to sound unsympathetic...but > after almost five years of this, she should be accepting it by now...I am. > I know that sounds really cold, but to try to talk to someone, especially > over the phone, and have her cry every time or be told that the minute we > hang up she cries, it gets to be too much. I don't tell my family anything > anymore...which makes it hard on me. > > Anyway...it's very difficult having a family support network that doesn't > help and sometimes makes things worse. I think a lot of us deal with this > issue. Maybe we should come up with some kind of pamphlet for our > families???? > > Kathy Quote Link to comment Share on other sites More sharing options...
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