I'm thinking about completing my DNR forms just in case I go into the need for life support again. My husband and I are having deep discussions about this and he can't get used to the idea. I want him to understand that I'm tired of fighting and if I get so sick, like I did in April, I want to go home. We had to stop the CellCept since I've got infections and my digestive system is torn up to the point where I almost went to the ER the other night. Believe me, I'm not a fatalist, but want to be proactive and face reality since I've already been there once. How do you feel about this?
One of the hardest parts of this disease is the so very long recovery period after a severe flare. Many don't understand but yes you do get so terribly tired of trying to hang in there. A DNR is a personal decision and your husband should respect this. If for some reason your bady does just fail and a cardiac arrest occurs- perhaps this is God's way of giving you peace after a long battle.
Loriken,
At some point you and your husband are going to have to agree to disagree on this. Before I was diagnosed, just my husband mentioning his life insurance and making sure he's provided for me when he dies would bring me to tears. We're still newly weds, and I've lost both my parents in the last four years, and I cry easily : ( But now that I've been diagnosed with lupus, I've thought about the possibility that I could go before him. Bless your husband for the love he has for you, he doesn't want to give up. Tell him that you love him so much, that this is your gift to him. My brother in law is still brought to tears when he talks about having to make that decision for his father.
Pray about it together.
Trisha
Hi Lori,
Like pobbie said DNR are personal to the individual although your asking our opinion....if it was me although i'm in the UK i'd go for it because there's only so much our bodies can take mentally besides physically and if it got to the time where my body would'nt except help no more, then ste would have to understand the fact.
We all may have partners and husbands and also love them but nobody is owned by another person.
Love Terri xxx
Bless your precious hearts for being so open with me. We have lost 4 out of 5 parents and we don't have any children. My husband will be very well taken care of when I'm gone. I have a pension and life insurance from my former job and he will receive these benefits when I pass away. We talked again and he knows how I feel about this.
His Mom had Lupus and developed Leukemia, after many years on steroids, and she made the decision to stop all treatment. We lost her 4 days later and she was SO brave to make the decision on her own. We lost my FIL in 2003, MIL in 2006, my Stepfather April of 2007 and my Mom October of 2007. My natural Father is still with us.
I don't know if I could go through what I went through in April again....it took everything out of me and I'm still trying to recover.
We continue to pray, but I'm at peace with knowing that I got sick for a reason and have fought as hard as I could...and will continue...until I'm called home.
Lori
Lori,
A friend of mine confided a month ago that he was ready. He survived a heart surgery that had a low percentage of survival. That was about 4 years ago and he's still here. He's still coping with illness and he's tired. He said he wasn't going do take his life, but if he were called home now, he's ready.
I think its wonderful that you are open and honest with your husband. I have a coworker, and her husband was diabetic and he just stopped taking all his meds without warning. That was 7 or 8 years ago, he just stopped, and she had 3 young sons and medical bills and she's not over it.
Thanks for starting this discussion, it was brave of you
Love, Trisha
Trisha!
I'm so sorry to hear about your coworker's husband...how tragic!
Your friend is brave and prepared and that is how I want to be! I don't want to take my life, but will be ready when my time comes. I can't explain what I went through BEFORE I crashed...they were poking me with needles and trying to get me to eat and I was too sick for them to find a vein. When I woke up, after a 5 day propofol coma, I had the full life support stuff going on. I lost over 30 pounds in 3 weeks, while in the hospital. Anyway, my body was done and I'll be ready if, and when, it happens again. Hopefully, I'll be around for while longer!
Love to all,
Lori
sunrisetrisha said:
Lori,
A friend of mine confided a month ago that he was ready. He survived a heart surgery that had a low percentage of survival. That was about 4 years ago and he's still here. He's still coping with illness and he's tired. He said he wasn't going do take his life, but if he were called home now, he's ready.
I think its wonderful that you are open and honest with your husband. I have a coworker, and her husband was diabetic and he just stopped taking all his meds without warning. That was 7 or 8 years ago, he just stopped, and she had 3 young sons and medical bills and she's not over it.
Thanks for starting this discussion, it was brave of you
Love, Trisha
Lori,
I can't imagine what it must have been like to waken to full life support. I think you are thinking clearly, and unemotionally right now and you know what you can and can't handle. I hope you're around for alot longer : )
Love, Trisha
Thank you Trisha! Hubby and I are going out to lunch now. It is a beautiful day here in Katy, Texas and the first day of Fall. My tummy is going to have to deal with whatever we decide to eat...LOL!
This is such an amazing group of friends...I am blessed!
Lori
Hi Lori,
It is a good discussion here you've added...as it's a really good view of aspects and how we feel and when the cloth is ready to be thrown in...there's most likely alot who could'nt talk about it like you have besides discussing the issue with your hubby.
Getting to know you through we talking i just hope to god you can keep fighting as hard as you can and don't let the disease beat you....when i said i'd do it in my previous comment is when i'd totally been through the mill and mentally took down but i would still keep trying as hard as you can.
Love you dearly Lori....Terri xxx
Bless your precious heart Ann! I am with you all the way as my family is at odds with my wishes. I've signed up to donate my body for any skin, organs, etc. that can be used. After that, I want to be cremated and sprinkled someplace special. My husband is having a fit about my not being buried with him. We can be buried together, but the place he wants is $10,000 for a double decker plot and they will require a plot for my ashes! My Dad, the only parent we have left, is on my side. My brother will be the Executor of our wills, if we happened to pass away together, and he isn't exactly excited about my final wishes, either, but I hope he will do what I ask in the long run.
I've already told Hubby that I'll donate his organs, too, unless he puts it in writing that he doesn't want me to. Anything we can do to help someone else live is totally worth it! I also told him that I wouldn't want to keep him hooked up to machines if there were no chance of his recovery.
Ann, I'm wiped out, too. Every time I see my rhemo, I tell him that I'm just so tired and he keeps telling me not to give up. My body is wiped out. I had to cancel my appt. for last Friday since I was in so much pain. When I see him next time, I'm going to arrange for DNR paperwork. I already have a Living Will, but I want to add the DNR part now that I know I've already been called home once.
My hubby and I were at the rheumo, October 10, 2003, and the doctor told both of us how sick I was and to get my affairs in order. Hubby nearly fell out, but I knew already. We have the annual get your affairs in order talk at the beginning of each New Year....here I am....still getting the lecture!
Love to all!
Lori
Ann A. said:
Dear Loriken,
I am not very sick at the moment. I get out of bed and go to physical rehab three days a week. I am working at getting stronger and more agile. But I have been living with lupus for 46 years. Every year has required its own kind of fight and I am tired. I am deeply tired. I have had four-five surgeries in the last four years. I have completed my advance directive. I take a copy of my advanced directive every time I go to the hospital. I make sure that each of my physicians has a copy. My daughter is okay with the decisions that I have made in my advance directive as she is the one who gets to tell them when it is time. My son on the other hand will not help me with the power of attorney forms as I have asked him to do. I want him to have the financial power of attorney.
I just thought it would make sense to split the responsbility up since my daugher is the one who understands my emotions best and my son is the more rational and responsible one. But he wants nothing to do with it. He doesn't want to sign any papers. He doesn't want to talk about it. My daughter and I can actually laugh and make jokes. My daughter does not follow the same spiritual path that I follow, so I have even talked with daughter in law about my funeral service. I am not very sick right now and I am not depressed but I am very tired. I know the circumstances under which I would choose to not fight any longer. Sometimes in order to make it through a day I have to listen to Mahalia Jackson sing "Trouble of the World." I am not rushing. But I want my family to understand the circumstances under which they must allow me to go. I stopped fearing death so long ago. I do have some fear of the artificially extended life.
I hope that you and your husband can reach an agreement that brings you both peace of mind.. I wish you the best. Have you asked him what his choices would be if he were to need you to make a decision for him?
Thank you Poobie! I think my hubby finally "gets it" since I was so sick in April. We keep talking about things and he doesn't want to discuss it and keeps asking me why do I keep bringing it up. Well, it is reality and he needs to be prepared! I don't want the life support, like I was given in April, and want to pass peacefully.
I'm still very depressed at the thought that I was called HOME, but brought back to life. Many people don't understand why I'm so upset....they think I should be thankful! I'm just too tired to fight sometimes.
Love and hugs,
Lori
poobie said:
One of the hardest parts of this disease is the so very long recovery period after a severe flare. Many don't understand but yes you do get so terribly tired of trying to hang in there. A DNR is a personal decision and your husband should respect this. If for some reason your bady does just fail and a cardiac arrest occurs- perhaps this is God's way of giving you peace after a long battle.
Love you Terri! I'm not giving up, but I'll be ready to go when the time comes. No more tubes, needles, people having to wipe my butt for me. I spent a week and a half in the bed and the nurses had to bathe me and clean me up after I had diarrhea in the bed....very graphic, but that is what happened. Tube feeding made me sick and I couldn't tolerate it. It took two weeks to finally get strong enough to be able to sit on the potty and take a mini shower by myself.
This is very personal, but it is the truth. I won't do this again and I know the Lord will be waiting for me when my time comes.
Lori
Tez_20 said:
Hi Lori,
It is a good discussion here you've added...as it's a really good view of aspects and how we feel and when the cloth is ready to be thrown in...there's most likely alot who could'nt talk about it like you have besides discussing the issue with your hubby.
Getting to know you through we talking i just hope to god you can keep fighting as hard as you can and don't let the disease beat you....when i said i'd do it in my previous comment is when i'd totally been through the mill and mentally took down but i would still keep trying as hard as you can.
Love you dearly Lori....Terri xxx
Ann, you are my HERO!!!!
Love,
Lori
Ann A. said:
I have seen loving families fall apart after the death of a loved one because they disagree over things that seem small to outsiders but carry a heavy emotional charge for family. I do not want my kids arguing with each other about what I would have wanted. Like you I want donation, creamation, and my ashes sprinkled on the land of my ancestral homeplace at the next family reunuion. I want an memorial service that reflects my own spiritual beliefs and I want them to dance a joyous - in fact raucous - second line. I am not going to hurry the process in any way. But I have had a longer and more succesful run than anyone expected. No ventilators. No feeding tubes. Kiss me and let me go check out what is on the other side. I am not 36. I am 66. I need to make my wishes known before they decide that I cannot.
Bless you and peace be with you.
Lori,
I was DNR for a while, and my heart has stopped a dozen times or more, but God seems to keep restarting it. I guess if it's your time to go, you will, but if you still have something to complete in this life, you'll still be here. It's a tough life, tough quality of life, but we continue to learn and others continue to learn from us, even if we don't say a word.
Soft hugs, Sheila
Sheila,
Bless your precious heart! You are amazing to me and I know God has his plans for you. You are here to share with me and that is a blessing! THANK YOU!
It was my lungs that gave out....I had severe sepsis and my blood pressure dropped so low that I stopped breathing. They put me on a vent, etc., and that is what I don't want to do in the future. If I come back on my own, fine, but no intubation, feeding tube, catheter, central line in my right neck artery and continuous drawing of blood with veins that were basically gone. The central line was used for all IV fluids and it was awful...I got a head rush every time they would flush it with saline. There were 3 IV leads and I was on continuous IV antibiotics, pain meds, etc. It was hell on earth.
Just checked my blood sugar and it is up to 482 again. This explains why I've been feeling so crappy!
I spend my days writing letters to the troops who are deployed overseas. My letters are typed cause my fingers and hands hurt all of the time. I send over 200 letters per month and have received some amazing replies from our Heroes. Each of my letters explains about my SLE Lupus and why I'm typing my letters. The Heroes have told stories of family members with Lupus and it has really been eye opening. A couple of Lady Heroes, SHEROES, have Lupus and are able to manage the symptoms while they are still in the military...how brave!
I talk about SLE all of the time.....we will find a cure!
Love, Lori
Sheila W. said:
Lori,
I was DNR for a while, and my heart has stopped a dozen times or more, but God seems to keep restarting it. I guess if it's your time to go, you will, but if you still have something to complete in this life, you'll still be here. It's a tough life, tough quality of life, but we continue to learn and others continue to learn from us, even if we don't say a word.
Soft hugs, Sheila
Hello Lori,
Well i am pleased your carrying on and to me we all have to be mentally ready with this disease as none of we know from day to day what's going to hit we...that's only discomfort with the disease being so unpredictable.
Regarding being stripped of your dignity, oh do believe me i know sincerely where your coming from...not with the lupus although i had it and never knew but being paralized for 4yrs having everything done your going through and our monthly issue is the worst and being left with the todds-paralisis which strikes when it pleases, it's a good job i have one broad minded husband who's been doing this for me throughout 11yrs and i thought we'd been together 12 but i've been lucky that my monthly's have been stopped so that's not so bad....if your like me you feel like your in a childs stage.
Lori it maybe personal but i've opened up on here with my friends many times about what i go through and it's nothing to ever feel ashamed about.
My heart and love is with you always but still try and keep going mentally.
Your loving friend Terri xxx
loriken214 said:
Love you Terri! I'm not giving up, but I'll be ready to go when the time comes. No more tubes, needles, people having to wipe my butt for me. I spent a week and a half in the bed and the nurses had to bathe me and clean me up after I had diarrhea in the bed....very graphic, but that is what happened. Tube feeding made me sick and I couldn't tolerate it. It took two weeks to finally get strong enough to be able to sit on the potty and take a mini shower by myself.
This is very personal, but it is the truth. I won't do this again and I know the Lord will be waiting for me when my time comes.
Lori
Tez_20 said:Hi Lori,
It is a good discussion here you've added...as it's a really good view of aspects and how we feel and when the cloth is ready to be thrown in...there's most likely alot who could'nt talk about it like you have besides discussing the issue with your hubby.
Getting to know you through we talking i just hope to god you can keep fighting as hard as you can and don't let the disease beat you....when i said i'd do it in my previous comment is when i'd totally been through the mill and mentally took down but i would still keep trying as hard as you can.
Love you dearly Lori....Terri xxx
Thank you for the love and support! I made the decision to complete my DNR forms and printed them out last night. My Dad and I just talked on the phone and I told him about my decision. He is in agreement with me and I'm going to give him copies of the paperwork.
I hope to be around for a very long time, but my body is tired and I'll be ready to go when the Lord calls me home...the next time.
Love you!
Lori
Hello Lori,
Your welcome from us alland chatting with your dad who understands what your going through sounds like it's totally made your mind up and it's always best someone else as a copy.
Well it's still nice to hear you talking on the positive side and like you say we all know when the towels ready to be thrown in.
Love you dearly Lori....Hugs Terri xxx
Hello Lori,
How have you been today my friend...hopefully your ok and i'm thinking of you dearly.
Hugs Terri xxx
