Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 Sunny, First, don't give up, honey. All of us have family members who don't understand, or won't. In the end that is their problem, not ours. Second, there is something called a Living Power of Attorney, or whatever your local hospital calls it. In California, they give you this option to sign as soon as you are admitted. You can probably find something on line that will answer for your needs. It basically allows you to make your wishes known, legally, before something happens, so that it is unnecessary for another person to make the decision for you. YOU make it, and only YOU can revoke it. I think that is what you want, right? About praying for God to take you, why not pray, instead, that God grant your family compassion, insight, and kindness? Sounds like a better plan to me, anyway. We love you, and want you with us, and I'm sure your husband does, too. Think about him before you make that prayer, honey. Loving hugs, MM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 Sunny I am so sorry that you are going through this with your family. you know if you need to talk to someone you have my number you can call me anytime you like. We are all hear for you sweetie. If there is anything that you need just call me or if you don't have my number anymore i can email it to you just let me know. You are in my prayers. Love Kimi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 Hi I thank you all for your kindness. I do know you care and that means alot. We all go through this from time to time, but it is just a bit more severe this time. I bet a list of the times people were the most crass would be interesting. I have one right off the top of my head... I was in the hospital with severe out of control asthma that had collapsed my right lung. I had a chest tube in and was in ICU. Family were allowed to visit only 5 minutes at a time. When I was able to talk at all, I told family members via the nurses and very short phone calls NOT to come up as I couldn't breathe well enough to visit. Well, one family member who is above ALL rules showed up anyway just as I had begun a fifteen minute breathing treatment. He came up to my bed and looked at me like I was a bug on a pin. Not being able to speak, I nodded toward the only chair next to me. Instead, he paced around in a circle for about two minutes then looked at me with a sneer and said, well, I guess I will shove off since you won't talk to me. " Can anyone top that one??? I hope not!!! know that everybody in this groups loves you and cares about you! > > sunnione4 wrote: > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 Hi I thank you all for your kindness. I do know you care and that means alot. We all go through this from time to time, but it is just a bit more severe this time. I bet a list of the times people were the most crass would be interesting. I have one right off the top of my head... I was in the hospital with severe out of control asthma that had collapsed my right lung. I had a chest tube in and was in ICU. Family were allowed to visit only 5 minutes at a time. When I was able to talk at all, I told family members via the nurses and very short phone calls NOT to come up as I couldn't breathe well enough to visit. Well, one family member who is above ALL rules showed up anyway just as I had begun a fifteen minute breathing treatment. He came up to my bed and looked at me like I was a bug on a pin. Not being able to speak, I nodded toward the only chair next to me. Instead, he paced around in a circle for about two minutes then looked at me with a sneer and said, well, I guess I will shove off since you won't talk to me. " Can anyone top that one??? I hope not!!! know that everybody in this groups loves you and cares about you! > > sunnione4 wrote: > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 Hi I thank you all for your kindness. I do know you care and that means alot. We all go through this from time to time, but it is just a bit more severe this time. I bet a list of the times people were the most crass would be interesting. I have one right off the top of my head... I was in the hospital with severe out of control asthma that had collapsed my right lung. I had a chest tube in and was in ICU. Family were allowed to visit only 5 minutes at a time. When I was able to talk at all, I told family members via the nurses and very short phone calls NOT to come up as I couldn't breathe well enough to visit. Well, one family member who is above ALL rules showed up anyway just as I had begun a fifteen minute breathing treatment. He came up to my bed and looked at me like I was a bug on a pin. Not being able to speak, I nodded toward the only chair next to me. Instead, he paced around in a circle for about two minutes then looked at me with a sneer and said, well, I guess I will shove off since you won't talk to me. " Can anyone top that one??? I hope not!!! know that everybody in this groups loves you and cares about you! > > sunnione4 wrote: > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 but then my hubby threatens to Baker Act me so I snap out of it. Doesn't someone saying this to you hurt you when you need compassion instead? How are we supposed to snap out of it? I would love for someone to clue me in. I have been trying for 20 years and the it just won't SNAP. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 but then my hubby threatens to Baker Act me so I snap out of it. Doesn't someone saying this to you hurt you when you need compassion instead? How are we supposed to snap out of it? I would love for someone to clue me in. I have been trying for 20 years and the it just won't SNAP. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 Sunny, Don't give up just because your family members don't understand what it is like to live with Lupus!! I have not been in touch with my 'Family of Origin ' in many years because they ignored the fact that I was being sexually abused as a child......by family members! And secondly, I swore that MY KIDS would never be put in that danger! Some of us just have lousy families! Thank Goodness you have a wonderful and supportive Husband. I would also suggest you check with your doctor to see if you neen your antidepressant dose increased. Here in Texas the documents you are asking about is called a ' Living Will ' and a DNR ( Do Not Resusitate) I have one on file at my local Hospital. That's one of the things they usually ask when you are first hospitalized........I also see packages for the Living Will at the Pharmacy with all the forms and information needed to fill them out. Ask your Doctor about these documents......I' m sure he will know what they are called in your state, and how to go about getting them . In the Meantime don't forget that WE ARE ALWAYS HERE FOR YOU.....even if we can' t phisically help you......We can Spiritually and Lovingly help you to get over the rough times.....WE love you! To my fellow Lupies I want to commend all of you on how good your spirits and attitudes are with coping with Lupus. I have had it for so many years that I don't remember my life without it.At this point in my life, however, my lupus is becoming much worse. More organs are involved now and I am struggling to maintain a somewhat normal lifestyle in spite of it.But my biggest problem is the way people around me handle it. I have a husband sent directly from God who has been by my side from Day one. He understands my limitations and takes up the slack for me on a daily basis.Yesterday, I changed my policy of never asking my immediate family for help. It unleashed a ton of opinions of me and my life. It was a day of total heartbreak for me as I am being force to realize that they truly don't care about me unless I am well. My disease is disgusting to them. I don't have money as I can't work. I have too many bills. I should snap out of it. I am having a pity party. I should buck up.Needless to say, it put me into a total depression that I am still struggling to overcome today. One of them called today to give me even more garbage as they feared I may take my own life. But the one thing I might have wanted to hear.. compassion.. was not on the agenda. Only more judgment as to how I should not be depressed as I have so much and blah blah blah.Today, my phone is off and I am swallowing tranquilizers as often as I can without ODing. Yes, I WOULD like to do myself in, but I am a Christian and I don't believe in it.Instead, I am praying to God to do that for me.I have instructed my husband that, should the Lord decide to answer my prayer, that nothing be done to keep me alive.Do any of you know what kind of document is needed to insure that they won't? I don't want him to be put in the position to have to fight with my other family members. They are more than aware of my deep depression as my disease worsens, but only one called today to see if I was okay. That one wasn't happy that I was alone and blasted my husband for leaving me alone. ( He had to go to work...) But, she made zero effort to come watch over me herself.The beat goes on.. but hopefully, soon, without me.I would like to hear how you all feel about your wishes should you become unable to make them yourself.If you feel like I do, that you are tired of living in a painful body in a world of uncaring people, how would you handle making sure no one blocks God from taking you?Thank you all for always being a HUGE support to me. You have no idea how many times reading your posts has helped me.Love to you all,Sunny"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 Sunny, I know at times all of our spirits are low. Sometimes it is hard to have a positive attitude about life. During that time we need someone to lean on. You mention your wonderful husband. I have one of those, too. He means the world to me. At times he might become frustrated,too. I think that is because he cannot " fix " what is wrong. We make sure we take our low points to God in prayer. Do you have a pastor or elder of your church you could talk with? I live over an hour away from my biological family, and when I need help during illnesses, it is most often my church family that is available to help. While I have a loving biological family, we all have our little medical quirks. If you need to, rely on your churh family, and your Lupie family to help see you through the hard times. If you need your house cleaned, maybe there is someone in the church that can do that for you, and if you have something you do while being quiet (Embroidery, crocheting, knitting, etc) you could do that for them. In our church we have an exchange of services. You find what someone needs done that you can do, and then look for someone who can help you with what you need done. It might be worth a try! In Minnesota, we have the Living Will, too. In it you get to decide when to use extrodinary means, and when the medical profession should cease and let you go. I had to do one when I had my heart surgery. You need to have it on file with your doctor, the hospital you use, and other health care provider, and one in-hand. That way, many people know your wishes. I must say though, you have been very encouraging to others in the group, and we feel you are like a biological sister to us. We wish we could be there in body, but are with you in thought and spirit. Please let us know how you are doing. We are concerned for your welfare and love you deeply. Puppy > I want to commend all of you on how good your spirits and attitudes > are with coping with Lupus. I have had it for so many years that I > don't remember my life without it. > At this point in my life, however, my lupus is becoming much worse. > More organs are involved now and I am struggling to maintain a > somewhat normal lifestyle in spite of it. > But my biggest problem is the way people around me handle it. I have > a husband sent directly from God who has been by my side from Day > one. He understands my limitations and takes up the slack for me on a > daily basis. > Yesterday, I changed my policy of never asking my immediate family > for help. It unleashed a ton of opinions of me and my life. It was a > day of total heartbreak for me as I am being force to realize that > they truly don't care about me unless I am well. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 Thank you so much, Puppy. Your love and concern means alot. I do have a strong faith in God and that is why I am still standing after 20 years of lupus. I will check on help from my church. Thank you for your kindness. I will stay in touch and I love you all, too, Sunny > > I want to commend all of you on how good your spirits and attitudes > > are with coping with Lupus. I have had it for so many years that I > > don't remember my life without it. > > At this point in my life, however, my lupus is becoming much worse. > > More organs are involved now and I am struggling to maintain a > > somewhat normal lifestyle in spite of it. > > But my biggest problem is the way people around me handle it. I > have > > a husband sent directly from God who has been by my side from Day > > one. He understands my limitations and takes up the slack for me on > a > > daily basis. > > Yesterday, I changed my policy of never asking my immediate family > > for help. It unleashed a ton of opinions of me and my life. It was > a > > day of total heartbreak for me as I am being force to realize that > > they truly don't care about me unless I am well. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 Thank you so much, Puppy. Your love and concern means alot. I do have a strong faith in God and that is why I am still standing after 20 years of lupus. I will check on help from my church. Thank you for your kindness. I will stay in touch and I love you all, too, Sunny > > I want to commend all of you on how good your spirits and attitudes > > are with coping with Lupus. I have had it for so many years that I > > don't remember my life without it. > > At this point in my life, however, my lupus is becoming much worse. > > More organs are involved now and I am struggling to maintain a > > somewhat normal lifestyle in spite of it. > > But my biggest problem is the way people around me handle it. I > have > > a husband sent directly from God who has been by my side from Day > > one. He understands my limitations and takes up the slack for me on > a > > daily basis. > > Yesterday, I changed my policy of never asking my immediate family > > for help. It unleashed a ton of opinions of me and my life. It was > a > > day of total heartbreak for me as I am being force to realize that > > they truly don't care about me unless I am well. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 Thank you so much, Puppy. Your love and concern means alot. I do have a strong faith in God and that is why I am still standing after 20 years of lupus. I will check on help from my church. Thank you for your kindness. I will stay in touch and I love you all, too, Sunny > > I want to commend all of you on how good your spirits and attitudes > > are with coping with Lupus. I have had it for so many years that I > > don't remember my life without it. > > At this point in my life, however, my lupus is becoming much worse. > > More organs are involved now and I am struggling to maintain a > > somewhat normal lifestyle in spite of it. > > But my biggest problem is the way people around me handle it. I > have > > a husband sent directly from God who has been by my side from Day > > one. He understands my limitations and takes up the slack for me on > a > > daily basis. > > Yesterday, I changed my policy of never asking my immediate family > > for help. It unleashed a ton of opinions of me and my life. It was > a > > day of total heartbreak for me as I am being force to realize that > > they truly don't care about me unless I am well. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 Thanks Kimi. I might just do that since you are close by. This has been scary for me as I usually don't go into this deep of a depression. But it is just happening this time no matter how hard I try to stop it. Maybe it is just too much as gone wrong this year beginning with the horrible death of my dear aunt, the skull fracture of my son, my mom's accident and having to take care of her for so long while I was sick and now the hurricane with all the work generated by it's aftermath. On top of that, my daughter has gone and now I am facing not having the funds to let her stay at college where she is so happy. It has just been alot that seems to just not stop. It has made my health take a huge dive and this time, I am not in control of it at all. If I need to talk I might just give you a call. But be prepared for my boo hoos. There are alot of them lately. Email me your number again just in case I can't find it. Love you all, Sunny > Sunny I am so sorry that you are going through this with your family. you > know if you need to talk to someone you have my number you can call me anytime > you like. We are all hear for you sweetie. If there is anything that you > need just call me or if you don't have my number anymore i can email it to you > just let me know. You are in my prayers. > > Love Kimi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 Thanks Kimi. I might just do that since you are close by. This has been scary for me as I usually don't go into this deep of a depression. But it is just happening this time no matter how hard I try to stop it. Maybe it is just too much as gone wrong this year beginning with the horrible death of my dear aunt, the skull fracture of my son, my mom's accident and having to take care of her for so long while I was sick and now the hurricane with all the work generated by it's aftermath. On top of that, my daughter has gone and now I am facing not having the funds to let her stay at college where she is so happy. It has just been alot that seems to just not stop. It has made my health take a huge dive and this time, I am not in control of it at all. If I need to talk I might just give you a call. But be prepared for my boo hoos. There are alot of them lately. Email me your number again just in case I can't find it. Love you all, Sunny > Sunny I am so sorry that you are going through this with your family. you > know if you need to talk to someone you have my number you can call me anytime > you like. We are all hear for you sweetie. If there is anything that you > need just call me or if you don't have my number anymore i can email it to you > just let me know. You are in my prayers. > > Love Kimi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 Thanks Kimi. I might just do that since you are close by. This has been scary for me as I usually don't go into this deep of a depression. But it is just happening this time no matter how hard I try to stop it. Maybe it is just too much as gone wrong this year beginning with the horrible death of my dear aunt, the skull fracture of my son, my mom's accident and having to take care of her for so long while I was sick and now the hurricane with all the work generated by it's aftermath. On top of that, my daughter has gone and now I am facing not having the funds to let her stay at college where she is so happy. It has just been alot that seems to just not stop. It has made my health take a huge dive and this time, I am not in control of it at all. If I need to talk I might just give you a call. But be prepared for my boo hoos. There are alot of them lately. Email me your number again just in case I can't find it. Love you all, Sunny > Sunny I am so sorry that you are going through this with your family. you > know if you need to talk to someone you have my number you can call me anytime > you like. We are all hear for you sweetie. If there is anything that you > need just call me or if you don't have my number anymore i can email it to you > just let me know. You are in my prayers. > > Love Kimi Quote Link to comment Share on other sites More sharing options...
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