Guest guest Posted November 20, 2004 Report Share Posted November 20, 2004 Dear sweet Carla: I am so sad that your family is missing out on what could be a beautiful relationship with a wonderful woman. Thank goodness you have friends that do come and support you. It is hard for me to understand family turning their backs on you. That makes me feel so sad. Carla, what I have learned in life is that " real " family is not necessarily those related by flesh and blood, but a real family is one who comes along side you and loves you and support you. You certainly have a kidney family here on this board who care very much about what you are struggling through! I am glad the swelling is going down some, and that you have decided to seek out a second opinion. Having IgAN and a second disability I am sure makes things much harder Carla. You are very inspirational in that you are able to live on your own and cope with both your IgAN and your disability. I know words can't make it any better, but just know that you are close to our hearts and in my prayers dear Carla. Here is a " " hug for you too! In a message dated 11/20/2004 5:06:56 PM Pacific Standard Time, carlotta1230@... writes: > > Hi, ! > First of all, My thoughts and prayers are with you and the > decisions you will be making. Just to let you know, we all stand > behind you all the way. > Second, My feet is still swollen, but not nearly as bad. I double > up on the Furosemide, like my Nephrologist said. That helped some, > but I am feeling very weak and tired. I have been noticing a lot > more fatigue in me then usual. I am also hurting a lot with my feet > with fluid built up in them. > I go see my Primary doctor on Monday and I will tell them about > this and make him refer me to another Nephrologist. I am just so > tired of dealing with this. It is so hard, because I feel so weak > and drained. It has been a long time since I felt like this before. > I am really scared. Because I just feel more fatigue then usual. > It scares me, because I live a lone and I am in a wheelchair. That > is why I repeat myself. Because I do everything for myself. But all > my friends knows me and comes offer to help me take better care of > myself when I am feeling really fatigue. But you know, I don't want > to be a burden, like my family saids I am to them. I told them that. > My friends says that I am not a burden and they offer to help me. > I know I will have this for the rest of my life and I know this > will get worse. But uncertain how it will affect me also having a > disability. As for now, It is a struggle. But by the grace of God, > and you all and my friends I am making it. > I am feeling down right now. I will explain. Any one can jump in > if they want. Because of the rejection of my family don't want to be > around me, because they don't want to be with someone with health > problems. I am so sad. I can't help having health problems. I know I > have to keep my chin up and say every blessing and I do. But I just > wish my family would accept me and love me for who I am. > Sigh.....BUT I know that it will never happen. I just keep them in > my prayers and that is all I can do. > Now, I feel there will be more of a rejection in finding a > boyfriend and a husband, for that matter. But I am not looking. I am > just saying. Not many people want a relationship with someone who > already has major health issues. > Again, I feel like I am having a UTI. I usually do with retaining > water. Gee, will this ever end. I get one thing working right then > another one fails on me. > I feel like crying, because all this makes me so angry and feeling > so sad. But you know, Now I can't. I just get mad at myself and I > know I need to stop being that way. But I am having some help > dealing with this. > Well, Sorry to keep writing. I just needed to talk. Take Care, > everyone! > Carla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2004 Report Share Posted November 20, 2004 Dear , Thank you and everyone else for your words of encouragement. This is a wonderful group. Thank you for your encouraging words about families. I am so glad there are other ways to look at this. I haven't ever thought of that way to look at that. Yes, I am so grateful that I have a kidney family here on this board. It is a great feeling to come and get the support you need. I am so grateful for that. Ok, I will write more tomorrow. I am just crying and having a hard time seeing. I am just so upset. But I will be ok. Take Care, everyone. Carla > Dear sweet Carla: > > I am so sad that your family is missing out on what could be a beautiful > relationship with a wonderful woman. Thank goodness you have friends that do come > and support you. It is hard for me to understand family turning their backs > on you. That makes me feel so sad. > > Carla, what I have learned in life is that " real " family is not necessarily > those related by flesh and blood, but a real family is one who comes along side > you and loves you and support you. You certainly have a kidney family here > on this board who care very much about what you are struggling through! > > I am glad the swelling is going down some, and that you have decided to seek > out a second opinion. Having IgAN and a second disability I am sure makes > things much harder Carla. You are very inspirational in that you are able to > live on your own and cope with both your IgAN and your disability. > > I know words can't make it any better, but just know that you are close to > our hearts and in my prayers dear Carla. > > Here is a " " hug for you too! > > > > In a message dated 11/20/2004 5:06:56 PM Pacific Standard Time, > carlotta1230@y... writes: > > > > > Hi, ! > > First of all, My thoughts and prayers are with you and the > > decisions you will be making. Just to let you know, we all stand > > behind you all the way. > > Second, My feet is still swollen, but not nearly as bad. I double > > up on the Furosemide, like my Nephrologist said. That helped some, > > but I am feeling very weak and tired. I have been noticing a lot > > more fatigue in me then usual. I am also hurting a lot with my feet > > with fluid built up in them. > > I go see my Primary doctor on Monday and I will tell them about > > this and make him refer me to another Nephrologist. I am just so > > tired of dealing with this. It is so hard, because I feel so weak > > and drained. It has been a long time since I felt like this before. > > I am really scared. Because I just feel more fatigue then usual. > > It scares me, because I live a lone and I am in a wheelchair. That > > is why I repeat myself. Because I do everything for myself. But all > > my friends knows me and comes offer to help me take better care of > > myself when I am feeling really fatigue. But you know, I don't want > > to be a burden, like my family saids I am to them. I told them that. > > My friends says that I am not a burden and they offer to help me. > > I know I will have this for the rest of my life and I know this > > will get worse. But uncertain how it will affect me also having a > > disability. As for now, It is a struggle. But by the grace of God, > > and you all and my friends I am making it. > > I am feeling down right now. I will explain. Any one can jump in > > if they want. Because of the rejection of my family don't want to be > > around me, because they don't want to be with someone with health > > problems. I am so sad. I can't help having health problems. I know I > > have to keep my chin up and say every blessing and I do. But I just > > wish my family would accept me and love me for who I am. > > Sigh.....BUT I know that it will never happen. I just keep them in > > my prayers and that is all I can do. > > Now, I feel there will be more of a rejection in finding a > > boyfriend and a husband, for that matter. But I am not looking. I am > > just saying. Not many people want a relationship with someone who > > already has major health issues. > > Again, I feel like I am having a UTI. I usually do with retaining > > water. Gee, will this ever end. I get one thing working right then > > another one fails on me. > > I feel like crying, because all this makes me so angry and feeling > > so sad. But you know, Now I can't. I just get mad at myself and I > > know I need to stop being that way. But I am having some help > > dealing with this. > > Well, Sorry to keep writing. I just needed to talk. Take Care, > > everyone! > > Carla > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2004 Report Share Posted November 20, 2004 Carla I have a saying that I used to post at the end of my e.mails its: " The bond that links your true family is not one of blood, but of respect and joy in each others life. Rarely do members of one family grow up under the same roof. " Bach from " Illusions " I have a difficult time with my family too. They just don't " get it " . When I was first diagnosed my sisters all had to rush out here like I was dying (prior to that I hadn't seen them in years)...when they realized that I wasn't dying...well they went right back to their " what do you mean you feel lousy? " ways. It is hard to cope without family, but as the saying above states family doesn't have to be bound by blood alone. Your friends care and though it may be tough to allow them in due to how your blood family has made you feel, let them in and you will be rewarded. It took me a long time to realize that friends could become family, it's incredible what a transformation your life can take when you have them there. Here is another one of my favorite quotes from Bach: " Here is the test to find whether your mission on Earth is finished: If you're alive, it isn't. " --- Bach Thinking of you dear Carla, Amy G. Re: IgA-Carla (To ) Dear , Thank you and everyone else for your words of encouragement. This is a wonderful group. Thank you for your encouraging words about families. I am so glad there are other ways to look at this. I haven't ever thought of that way to look at that. Yes, I am so grateful that I have a kidney family here on this board. It is a great feeling to come and get the support you need. I am so grateful for that. Ok, I will write more tomorrow. I am just crying and having a hard time seeing. I am just so upset. But I will be ok. Take Care, everyone. Carla > Dear sweet Carla: > > I am so sad that your family is missing out on what could be a beautiful > relationship with a wonderful woman. Thank goodness you have friends that do come > and support you. It is hard for me to understand family turning their backs > on you. That makes me feel so sad. > > Carla, what I have learned in life is that " real " family is not necessarily > those related by flesh and blood, but a real family is one who comes along side > you and loves you and support you. You certainly have a kidney family here > on this board who care very much about what you are struggling through! > > I am glad the swelling is going down some, and that you have decided to seek > out a second opinion. Having IgAN and a second disability I am sure makes > things much harder Carla. You are very inspirational in that you are able to > live on your own and cope with both your IgAN and your disability. > > I know words can't make it any better, but just know that you are close to > our hearts and in my prayers dear Carla. > > Here is a " " hug for you too! > > > > In a message dated 11/20/2004 5:06:56 PM Pacific Standard Time, > carlotta1230@y... writes: > > > > > Hi, ! > > First of all, My thoughts and prayers are with you and the > > decisions you will be making. Just to let you know, we all stand > > behind you all the way. > > Second, My feet is still swollen, but not nearly as bad. I double > > up on the Furosemide, like my Nephrologist said. That helped some, > > but I am feeling very weak and tired. I have been noticing a lot > > more fatigue in me then usual. I am also hurting a lot with my feet > > with fluid built up in them. > > I go see my Primary doctor on Monday and I will tell them about > > this and make him refer me to another Nephrologist. I am just so > > tired of dealing with this. It is so hard, because I feel so weak > > and drained. It has been a long time since I felt like this before. > > I am really scared. Because I just feel more fatigue then usual. > > It scares me, because I live a lone and I am in a wheelchair. That > > is why I repeat myself. Because I do everything for myself. But all > > my friends knows me and comes offer to help me take better care of > > myself when I am feeling really fatigue. But you know, I don't want > > to be a burden, like my family saids I am to them. I told them that. > > My friends says that I am not a burden and they offer to help me. > > I know I will have this for the rest of my life and I know this > > will get worse. But uncertain how it will affect me also having a > > disability. As for now, It is a struggle. But by the grace of God, > > and you all and my friends I am making it. > > I am feeling down right now. I will explain. Any one can jump in > > if they want. Because of the rejection of my family don't want to be > > around me, because they don't want to be with someone with health > > problems. I am so sad. I can't help having health problems. I know I > > have to keep my chin up and say every blessing and I do. But I just > > wish my family would accept me and love me for who I am. > > Sigh.....BUT I know that it will never happen. I just keep them in > > my prayers and that is all I can do. > > Now, I feel there will be more of a rejection in finding a > > boyfriend and a husband, for that matter. But I am not looking. I am > > just saying. Not many people want a relationship with someone who > > already has major health issues. > > Again, I feel like I am having a UTI. I usually do with retaining > > water. Gee, will this ever end. I get one thing working right then > > another one fails on me. > > I feel like crying, because all this makes me so angry and feeling > > so sad. But you know, Now I can't. I just get mad at myself and I > > know I need to stop being that way. But I am having some help > > dealing with this. > > Well, Sorry to keep writing. I just needed to talk. Take Care, > > everyone! > > Carla > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 Hi Carla, I am so glad you can come here and talk about your problems. Your family may be rejecting you, but you can rest assured that we are not. It is hard enough for any chronically ill person to negotiate relationships and family, and doubly harder for you. BTW there is a delightful young man with cerebral palsy who volunteered for prop 71 in California. He and his twin brother (without CP) cut an ad for us that played out here before the election. We had various celebs do ads for us, but the ad that grabbed everyone's heart was the ad showing this CP guy and his twin. The guy talked about seeing this this person who looks exactly like like him in every respect - except for the CP - and thinking what your own life could be like if there was a cure. Please let us know how your appointment goes on Monday. Cy IgA-Carla (To ) > > > Hi, ! > First of all, My thoughts and prayers are with you and the > decisions you will be making. Just to let you know, we all stand > behind you all the way. > Second, My feet is still swollen, but not nearly as bad. I double > up on the Furosemide, like my Nephrologist said. That helped some, > but I am feeling very weak and tired. I have been noticing a lot > more fatigue in me then usual. I am also hurting a lot with my feet > with fluid built up in them. > I go see my Primary doctor on Monday and I will tell them about > this and make him refer me to another Nephrologist. I am just so > tired of dealing with this. It is so hard, because I feel so weak > and drained. It has been a long time since I felt like this before. > I am really scared. Because I just feel more fatigue then usual. > It scares me, because I live a lone and I am in a wheelchair. That > is why I repeat myself. Because I do everything for myself. But all > my friends knows me and comes offer to help me take better care of > myself when I am feeling really fatigue. But you know, I don't want > to be a burden, like my family saids I am to them. I told them that. > My friends says that I am not a burden and they offer to help me. > I know I will have this for the rest of my life and I know this > will get worse. But uncertain how it will affect me also having a > disability. As for now, It is a struggle. But by the grace of God, > and you all and my friends I am making it. > I am feeling down right now. I will explain. Any one can jump in > if they want. Because of the rejection of my family don't want to be > around me, because they don't want to be with someone with health > problems. I am so sad. I can't help having health problems. I know I > have to keep my chin up and say every blessing and I do. But I just > wish my family would accept me and love me for who I am. > Sigh.....BUT I know that it will never happen. I just keep them in > my prayers and that is all I can do. > Now, I feel there will be more of a rejection in finding a > boyfriend and a husband, for that matter. But I am not looking. I am > just saying. Not many people want a relationship with someone who > already has major health issues. > Again, I feel like I am having a UTI. I usually do with retaining > water. Gee, will this ever end. I get one thing working right then > another one fails on me. > I feel like crying, because all this makes me so angry and feeling > so sad. But you know, Now I can't. I just get mad at myself and I > know I need to stop being that way. But I am having some help > dealing with this. > Well, Sorry to keep writing. I just needed to talk. Take Care, > everyone! > Carla > > > > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > To unsubcribe via email, > iga-nephropathy-unsubscribe > Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2004 Report Share Posted November 29, 2004 Thank you Carla and each and every one of you for your well wishes and prayers for my transplant evaluation today. I do feel like I was drinking from a fire hydrant today. I am exhausted beyond what I imagined I could be. I left the house at 7 AM, got home at 4:35 PM, but had to leave for a 50th birthday party for a good friend at 5:15 so no rest for the weary today. I think I gave half of my total blood volume in blood today for all the testing. My potential donor is a preliminary match as far as blood type, but we won't know more for about 6 weeks they said. Still a long way to go, but at least this hurdle is over. I tell you what, they about scared me to death on the post-transplant meds, but knowing I am following in some pretty amazing footsteps of those of you who have had transplants already kept me from bolting out of there :-) I guess the bottom line is that I won't know more for 6 weeks but I will keep everyone posted. Thank you again so much for all your support! I receive so much more than I could ever give here!!! > > Hi, ! > Good luck with your appointment tomorrow. My thoughts and prayers > are with you. I am glad you had a wonderful time and made it back > home safely. > Carla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2004 Report Share Posted November 30, 2004 Hi Phyllis, I am glad he is holding his own. I am surprised that his BUN is so low when his creatinine is so high. Is he feeling ok? Blessings to you too! In a message dated 11/30/2004 2:52:08 AM Pacific Standard Time, pjbpiano@... writes: > > Thinking of you and those awaiting transplants; praying for all of you, > including Pierre. My husband has been waiting for 4 1/2 years, but his BUN has > stayed at 36 and his creatinine at about 4.6 so we are blessed for that > extended time. Blessings for all of you. Phyllis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2004 Report Share Posted November 30, 2004 Hi , Thank you so much for your understanding and comments. It really helps so much to know that even despite the meds you would still go forward. I AM scared of the meds, but I do know that it will be a better quality of life after...like you said, it is just getting to that point of getting it over with. Thanks so much for your support! In a message dated 11/30/2004 7:58:54 AM Pacific Standard Time, garymattcohen@... writes: > : > > Glad you cleared that first hurdle. Yeah, they do take a lot of blood - I > was pretty lightheaded for a few hours and really needed to eat right away. > > As the song goes " The Waiting is the Hardest Part " . Honestly, it was the > worst part of the whole process. I'm not trying to downplay the surgery and the > meds, but the waiting was psychologically the worst. The meds will get > adjusted (a lot in some cases), but they really scare you to test your willingness > to go forward (I think). Anyhow, the side effects I have had so far would not > make me change having the tx one little bit. It sounds corny, and I never > really believed it before, but it is a whole new lease on life. It's hard to > explain how different you feel unless you've experienced it. > > All my best. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2004 Report Share Posted November 30, 2004 Hi Just like everyone worries about the needles when dialysis is in their future, it seems like everyone who may have a transplant worries about the medications they will have to take. Everyone I talk to who is in the same situation brings up the same concern about meds. I do myself, but, not so much now that I personally know so many who have had a transplant. They all seem to be doing fine. My impression from them is that, like dialysis, there is a period of adjustment that may span a number of months, often during which there are a few hospital admissions, where they reduce the prednisone dosage, and where they may change the dosage of or the actual anti-rejection meds. Once they've got it right for you, and you're down to the10 mg of prednisone, it seems like it's pretty manageable. Believe it or not, as far as moonfaces go, the only ones I see that have it are recent transplantees who are still on a fairly high dose of prednisone. None of the ones, men or women, who have had their new kidney for a while have it - at least not among the people I know. I know to say not to worry is much easier than actually not worrying though :-) People who get a live related transplant do best of all of course, because the match is so good that fewer meds are needed. Pierre Re: Re: IgA-Carla (To ) > > Hi , > > Thank you so much for your understanding and comments. It really helps so > much to know that even despite the meds you would still go forward. I AM scared > of the meds, but I do know that it will be a better quality of life > after...like you said, it is just getting to that point of getting it over with. > > Thanks so much for your support! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2004 Report Share Posted November 30, 2004 Thanks :-) Yes, He does know exactly what you mean. In a message dated 11/30/2004 7:57:06 PM Pacific Standard Time, snooksmama@... writes: > > : > It sounds like a very good beginning...preliminary match! I will continue to > pray. I have shortened my prayer for you, , and Pierre..now I just > say, '3 kidneys'!!! HE knows what I mean!! > I'll keep praying!! > , mom to Rob, 15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2004 Report Share Posted November 30, 2004 : It sounds like a very good beginning...preliminary match! I will continue to pray. I have shortened my prayer for you, , and Pierre..now I just say, '3 kidneys'!!! HE knows what I mean!! I'll keep praying!! , mom to Rob, 15 Quote Link to comment Share on other sites More sharing options...
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