Guest guest Posted January 25, 1999 Report Share Posted January 25, 1999 Sometimes I feel so overwhelmed by all of this. Should I take the meds, or not take the meds. Should I go to the doctor, or not go to the doctor... there are so many " what if's " floating around. In my life I have ALWAYS been a " control freak " my life has always had to be in control...and I was almost to the point of being obsessive about it. It's funny that a disease in which there is NO " control " for...would strike someone who valued control the most. Yesterday, I took 3 of my nephews to the park, and I sat them down to explain to them about this disease. I told them that " Aunt Tiffy has something wrong with her liver, and it makes her sick sometimes " Bless the youngest ones heart...he said " what's a liver? " (he just turned 6) I told them that right now it makes me feel sick..and that I will end up getting a lot " sicker " . After all this was said...the middle child (he just turned 9)..looked up at me..with tears in his eyes and said " I don't want you to go " . It took all my strength to keep from bawling my eyes out right in front of them. I told them that I wasn't going anywhere...and I was going to be around for a very long time to pester them. The oldest Nephew and I have always been very close...during the whole conversation he kept his head down (he will soon be 12), and remained quiet. After the other two children took off to play...he looked up at me with tears streaming down his cheeks...I asked him if he had any questions...and with hurt filling his eyes...he simply said no. I'm sorry for the long winded story...I just wanted to share with you, one of the hardest things I have ever had to do. I wanted to scoop them all up into my arms and tell them that everything was going to be okay...that I wouldn't be sick....but I couldn't..all I could do is keep my own tears from dropping. Have any of you had to do this? God bless and keep you all, Love, ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 1999 Report Share Posted January 25, 1999 Dan, I agree with you that it is A LOT for children to handle. I have always had a very close relationship with my nephews and I told them so that they didn't feel cheated. This way they heard it from me. But..I only gave them a VERY shortened explanation of the disease. The only thing I really said was " Aunt Tiffy has something wrong with her liver, and it makes her sick " . Their mother had told them that I was in the hospital because I had an infection in my liver...so they already knew some of it. I feel that they should know what to expect...and know why I haven't felt well lately. This is just my point of view though. ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 1999 Report Share Posted January 25, 1999 , I feel kinda strong about this. My wife and I have a very good relationship. We're always talking, even around the kids. As they hear about my disease, it worries them. I regret that they know as much as they do. This disease is hard enough for us to bear, why should we impose such burdens on little kids? I'm so used to telling it like it is, but now I'm rethinking this. Dan > Re: No meds approach > > Sometimes I feel so overwhelmed by all of this. Should I take the meds, > or > not take the meds. Should I go to the doctor, or not go to the doctor... > there are so many " what if's " floating around. In my life I have ALWAYS > been > a " control freak " my life has always had to be in control...and I was > almost > to the point of being obsessive about it. It's funny that a disease in > which > there is NO " control " for...would strike someone who valued control the > most. > Yesterday, I took 3 of my nephews to the park, and I sat them down to > explain to them about this disease. I told them that " Aunt Tiffy has > something wrong with her liver, and it makes her sick sometimes " Bless > the > youngest ones heart...he said " what's a liver? " (he just turned 6) I > told > them that right now it makes me feel sick..and that I will end up getting > a > lot " sicker " . After all this was said...the middle child (he just turned > 9)..looked up at me..with tears in his eyes and said " I don't want you to > go " . > It took all my strength to keep from bawling my eyes out right in front of > them. I told them that I wasn't going anywhere...and I was going to be > around > for a very long time to pester them. The oldest Nephew and I have always > been > very close...during the whole conversation he kept his head down (he will > soon > be 12), and remained quiet. After the other two children took off to > play...he looked up at me with tears streaming down his cheeks...I asked > him > if he had any questions...and with hurt filling his eyes...he simply said > no. > I'm sorry for the long winded story...I just wanted to share with you, one > of > the hardest things I have ever had to do. I wanted to scoop them all up > into > my arms and tell them that everything was going to be okay...that I > wouldn't > be sick....but I couldn't..all I could do is keep my own tears from > dropping. > Have any of you had to do this? > God bless and keep you all, > Love, > > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 1999 Report Share Posted January 25, 1999 Forgive me if I've told this group before, but I'll repeat it just in case. My CTs all showed air in my ducts, presumably because of blockage, until I had been on Actigall for 23 mos. There is no evidence of air, suggesting that bile is now flowing. Having said that, I have had chills and fever again with the chest heaviness and achiness and I think my pluerisy is back. I feel rotten, but at least it's not liver-related. Penny ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 1999 Report Share Posted January 25, 1999 - I dealt with a lot of the control issues that you talked about, and one of the most frustrating thinks about being ill, whether it is PSC or something else, is the control it exercises over our lives and emotions. Sometimes I think that our physicians underestimate the emotional impact of our illnesses. I've yet to have any of my physicians talk to me about how I deal with my PSC, whether I feel like I'm coping well. I've spent a lot of time working with a therapist to deal with my emotions and control, since I have a rather fragmented family and was diagnosed right after a job relocation and had not really established any local support. As part of this I did a lot reading and found these 2 books to be most helpful. Love, Medicine and Miracles by Bernie Siegel, M.D. Close to the Bone, Bolen, M.D. Siegel's book deals with being able to choose our attitudes within illness, the impact they have on us. Although he talks about a lot of " miraculous " cures in the book, his goal is to help sick people be in charge of their illness and their lives while ill. This has really helped me with dealing with my physicians, making med decisions, etc. This has been around a while and is available fairly cheaply in paperback. Bolen is a psychiatrist at UC San Francisco and works almost entirely with breast cancer patients. Using a lot of mythology she explores the emotions of people who encounter life-threatening illness, the stages they go through from diagnosis to whatever the resolution ultimately is, and how to cope with the stages. I heard Bolen speak once and she is the only person I have ever heard talk about how patients remember the moment of diagnosis, yet I can remember mine as if it was yesterday. This is a recent book and more expensive. Hope this helps. Russ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 1999 Report Share Posted January 27, 1999 Dan, when explaining to my nephews...I could have given the the straight forward version. Instead..I gave them a very shortened version. In there minds..this disease is about as serious as having a " cold " . I told them because I didn't want them to feel left out. I didn't want them to wonder why " aunt Tiffy " hasn't felt good lately. And I wanted them to know what the future may be like. I told them that I may get a yellow color on my skin...but if that happens don't worry because there is medication my doctor can give me to make it go away. That part was important to explain to them. My grandmother (their great grandmother) was VERY " yellow " when she died, I didn't want them to think I was going to die if I turned " yellow " . It was not at all to have another shoulder to cry on...I would NEVER discuss these things with my nephews...they have enough to deal with on their own without adding that to it. Of course they were sad to hear that I was sick...I am their aunt. But again I downplayed the seriousness of it. I also made it known that if they had any questions..they could ask me. I think by having it out in the open..and letting them become a part of it...it will be a little less scary for them. They no longer have to wonder what is going on with me...they know now..and it makes it a bit easier to explain for example..why I don't just jump up and run out to play with them anymore. But...they also know that I will soon be feeling better again..and that I will be able to do more things with them once I am feeling better. Sorry for the long winded letter. ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 1999 Report Share Posted January 28, 1999 Dan-- Food for thought. I'd like to think the reason I told our kids is because they knew something was wrong and I'd rather tell them just enough so that they won't think the worst. It's hard not to tell them something when their mom is out of state in a hospital and won't be home for awhile or when I'm not at work and in bed or on the sofa. I agree-it would be nice to let them be kids and not exposed to the pressures of life until they need to face it. Unfortunately, that is something we can't always control as we would like. I would never dream of " crying on their shoulders " -- in fact, I am there for them to cry on mine and tell me how THEY feel about it. It's better that than they harbor feelings inside. It's a hard situation for everyone. C. ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
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