Hi Terri....this is SO beautiful...thank you for sharing it with me!
Love and hugs,
Lori
Tez_20 said:
Hello Lori,
How have you been today my friend...hopefully your ok and i'm thinking of you dearly.
Hugs Terri xxx
Hi Ann,
I didn't want my husband to make decisions for me because I know he would allow me to be hooked up to machines so he could come visit me as long as possible. That is unacceptable to me and I'm putting my wishes in writing, with the DNR, and that way I will make my own choice.
It is hard for me to believe I'm even thinking about this, but it is reality and I want to be ready.
You are my HERO!
Love,
Lori
Ann A. said:
Dear Lori,
As you know, I have only completed an advanced directive and not a DNR. Thanks for calling the difference to my attention. You are my hero, too. Thank you for opening this important discussion.
Well, I saw my rheumo today and he refuses to give up on me and wants me to really think about the DNR forms. He says it isn't my time to go and we still have options to try and he wants me to stay positive and continue to fight. We determined that my wish to complete the DNR forms was mostly due to my severe depression raging again and I've decided to hold off on signing anything right now.
I'm back on 1000mg of CellCept per day and we hope to increase it to 3000mg in the next few weeks. He wants me to be patient and give it another try with the hope that I can try Benlysta again in the future. It will take some work, on my part, to prepare for Benlysta again, but I'm willing to do what it takes.
Today was very emotional and I can't tell you how much I rely upon my rheumo to be up front and honest with me. I'm very lucky to have him taking care of me. He told me that he gets frustrated that he can't do more for me, but we won't give up.
Love you!
Lori
Hello Lori,
Lovely to hear you've got a good rheumo as that goes such a long way with us and the needs that we require regarding help...sorry your down with depression but i am pleased with your positive thoughts on driving yourself still foward...it's nice to hear plus good for other members suffering.
Good on you for holding off on the DNR besides anything else.
I'm wishing you the best of luck with the cellcept and also Benlysta if you have to turn to that.
Thank you so much for updating we Lori... as your health alone is of great concern.
Love you dearly Terri xxx
P.S Keep fighting mate as it helps such alot.
Bless your heart Terri.....you always make me smile and I adore you!
Much love!
Lori
Bless your heart Julie! I hope you're feeling better each day! My husband had to make decisions for me when I was put on life support back in April of this year. The hospital put me on life support when I crashed and it happened during the middle of the night when my husband wasn't there. I'm still not myself and will be recovering from that traumatic illness for a while longer.
I'm still conflicted about this, but feel that I still have options available as to treatment and will take each day as it comes. I just turned 50 and all of my doctors keep telling me that I'm too young to think about leaving this world again. They want me to stay positive and I'm trying.
I have a Living Will, in case there is no hope, but if I had had the DNR in April....I would have died and no longer be on this earth today. As it turned out, I worked really hard to get better and was able to come home again.
Thank you.....I adore you!
Lori
jujubeee said:
I think you have to make the best decision for YOU. Something you can live with, excuse the pun, lol. My husband and I discuss everything, including THIS. When you don't have your health, you have to be prepared for anything. Especially with lupus. We discuss a possible afterlife, a different spiritual plane, what if's and what to do WHEN. It's important to us. It's just a matter of staying one step ahead. If you are prepared it is much easier for both of you to handle you letting go or him for that matter. It is part of life. Much Love, Julie ps. I had a tia at the end of June and it has taken me the last 3 months to really recover and get myself back. I'm also on Cellcept. This disease is SO up and down Lori, you never know where you stand. Enjoy what you can when you can! And believe me, should something happen to you and you and yours have decided on the DNR, then he will NEVER have to feel he did the wrong thing. That in itself is important enough for you to do it on your own if need be. Look ahead Lori. In all ways. Love Julie
Same here mate and your strength besides being so positive i do admire with people with Lupus because giving up says the disease has beaten we.
I shall keep going until i drop dead and that's it....i hope it does'nt stretch to the age of 50 though because otherwise i was made to suffer, such alot to deal with.LOL
Hugs to you Lori xxx
loriken214 said:
Bless your heart Terri.....you always make me smile and I adore you!
Much love!
Lori
Hello Julie,
Pointless you ever thinking how Lori as, although you suffer like a good many of we...you enjoy posing to much with the video's and helping the site with great detail....bless you mate. :)
jujubeee said:
I think you have to make the best decision for YOU. Something you can live with, excuse the pun, lol. My husband and I discuss everything, including THIS. When you don't have your health, you have to be prepared for anything. Especially with lupus. We discuss a possible afterlife, a different spiritual plane, what if's and what to do WHEN. It's important to us. It's just a matter of staying one step ahead. If you are prepared it is much easier for both of you to handle you letting go or him for that matter. It is part of life. Much Love, Julie ps. I had a tia at the end of June and it has taken me the last 3 months to really recover and get myself back. I'm also on Cellcept. This disease is SO up and down Lori, you never know where you stand. Enjoy what you can when you can! And believe me, should something happen to you and you and yours have decided on the DNR, then he will NEVER have to feel he did the wrong thing. That in itself is important enough for you to do it on your own if need be. Look ahead Lori. In all ways. Love Julie
Hey Terri, (and anyone else who cares to reply)
I didn't think I'd live to 35. Now I'm past 50 and very little quality of life and God keeps sending meback each time my heart stops. Mom has lupus and just turned 80, and her sisters with it are far into their 90s. I can't imagine living 90 years with all this, but I don't think we can get out of it without God being very angry if we take ourselves out. It's so overwhelming to think of so many decades of this pain ahead, so it's better to just think of getting through today, or even just this hour. I've had 2 lupie friends die this month, and 2 more found they have just months to live with cancer, so they will go soon...and I cry because I miss them, but also because I'm jealous that their suffering is over. I am glad for whatever help I can offer people while I'm alive, but I'm getting less and less able to spend time online supporting others. It sre can get discouraging. I am losing friends by the dozen with my inability to think and communicate as well as I did even a year or two ago.
I'm wondering how I can say lupus doesn't have me, when I'm locked in this body that lupus decides every movement and decision, and when I push past my limits, I become unable to even get up to get water for myself. I know that each small thing I can do is a victory, and I'm almost always smiling and optimistic, but lupus DOES have this body of mine. And each time I read "I have lupus but it doesn't have me" I feel so inferior, because it really does have my whole life. Maybe some are not mostly flat in bed with dozens of organs and systems not functioning. Is it those people who are saying lupus doesn't have them? 50 years of thiscauses a lot of damage. So how do I say "lupus doesn't have me"?
Tez_20 said:
I shall keep going until i drop dead and that's it....i hope it does'nt stretch to the age of 50 though because otherwise i was made to suffer, such alot to deal with.LOL
Glad to hear you say that you're not afraid to say it. I've really been trying to figure out lately some people who get upset with me that I don't just push harder and pull myself together. Are they as sick s me and I'm the inferior one, unable to do what they do? Or are they just much more mobile and able than me? Or are they just as sick but refuse to admit that they have any weaknesses at all? I just lost a friend yesterday because she made it her profile pic to say "I have lupus but it doesn't have me", and I messaged her "I'm glad it doesn't have you yet, because it sure has me." Oh I guess one more option it could be, that they might have lupus, but that it doesn't have them emotionally, spiritually. Gosh this makes me sound so bad. I'm just having a weepy day. I don't sound this negative very often.
Know what Lori? I think if the majority of people were honest with themselves, they'd say they want out of this torture too. (Depending on how sick they have become and what quality of life they have.) I don't want to be kept alive on machines either. You've spurred me to action to get forms done. I am isolated and no quality of life. No one would even come visit if I was kept alive. Another question is, if I am conscious and can still write to communicate some, would I accept the intubation just to not feel like I'm suffocating? Such difficult decisions. Maybe in Canada I won't even have to worry about it because euthanasia is done so commonly it's even done against family wishes many times. (But it can't be done if a patient asks for it. Insanity.)
I have been reading this discussion today, and this is not one of my favorite discussions.
I prefer to say lupus is a part of my life. I still get up and go to work, for now. Its getting more difficult, and I'm starting to do pros and cons list in my head - is it worth it? By the time I come home, I'm done. There's not alot of energy left. I cook supper, and then that's about it. As far as I know, its not in my organs (yet). I have concerns, and went over those with my GP today. I got the chance to thank him for picking up on the signals and ordering the blood work that brought me to my diagnosis.
My lupus is mild, it is affecting more today than it was this spring though. This morning my closest co-worker, that I confide in, asked me about my drs apt, and she asked me what pain I have? I thought - "hello? have you not been listening?" But she doesn't know first hand what its like. I don't experience lupus as severely as some of you. My mother died at 74, undiagnosed of lupus. I've been given a chance that she never had. I live for her. I miss her so much, she took a part of me with her, and left a part in me.
Trisha
BLESS ALL OF YOUR PRECIOUS HEARTS! We all deal with our lupus in our own way......I've lost so much due to my SLE, but I've gained a lot, too. I take each day as it comes and try not to think about tomorrow. The simple things in life are SO important now.
There are days when I can't get out of bed and some days when I can't sleep and just lay there. My body has gone through so much and there is much more to go through. My fingers and hands are killing me all of the time and I can't type because of the pain.
If there were a way for me to let go, I would, but I'm a Christian and God isn't ready for me yet. That is MY belief and I struggle with it every day of my life.
My Mom had RA and she passed away, from a blood clot in her lung, on October 4, 2007. She was only 70 years old. I don't know if I will make it to 70 or not, since I've already died once, but I'm still taking one day at a time.
If I get really sick again, I'll complete my DNR forms.
I'm here to listen....I'm with each of you!!!!
Lori
Julie keep rubbing it in mate...mind you i'm 44 i might stretch to my early 50's or 60's... as that's the age my family usually drop dead about...then you'll all be crossing the ocean to see me in the nursing home across the road as ste said if i get to bad it's not fare for him to visit me, at least he'll have me off his back.
(Mandela house). lol
Oh christ i'm in stiches here.
Plus me and Lori are partners in cracking you all up. :)
jujubeee said:
Well Terri (double R double love you) I just turned FIFTY ONE this year, so I hate to tell you it goes on AFTER 50. LOL You are a wonderful silly person!!!! And Lori, you are too!!!
Hello Sheila,
In everything you've said is totally true the only difference is i'm not seeing friends die of it...the only contact i have with Lupus suffers is all of you.
Sheila my mobility to get about his limited using a rollator, if not my wheelchair...the issues i have are outstanding like a good many of we but the main annoyance in my life is the sjogren's really affecting my organs and drying them out and body pain does me in.
Lupus does hold we down but all we can do is keep fighting until the day comes when our number is up and we're called for...so all we can do is love and respect what we do have in life and regarding bed ridden been there and lost all dignity and still do....i just thank god i have an husband who's so broad minded where no imbarressment is caused no more.
Sheila a large hug & kiss to you :) xxx
Sheila W. said:
Hey Terri, (and anyone else who cares to reply)
I didn't think I'd live to 35. Now I'm past 50 and very little quality of life and God keeps sending meback each time my heart stops. Mom has lupus and just turned 80, and her sisters with it are far into their 90s. I can't imagine living 90 years with all this, but I don't think we can get out of it without God being very angry if we take ourselves out. It's so overwhelming to think of so many decades of this pain ahead, so it's better to just think of getting through today, or even just this hour. I've had 2 lupie friends die this month, and 2 more found they have just months to live with cancer, so they will go soon...and I cry because I miss them, but also because I'm jealous that their suffering is over. I am glad for whatever help I can offer people while I'm alive, but I'm getting less and less able to spend time online supporting others. It sre can get discouraging. I am losing friends by the dozen with my inability to think and communicate as well as I did even a year or two ago.
I'm wondering how I can say lupus doesn't have me, when I'm locked in this body that lupus decides every movement and decision, and when I push past my limits, I become unable to even get up to get water for myself. I know that each small thing I can do is a victory, and I'm almost always smiling and optimistic, but lupus DOES have this body of mine. And each time I read "I have lupus but it doesn't have me" I feel so inferior, because it really does have my whole life. Maybe some are not mostly flat in bed with dozens of organs and systems not functioning. Is it those people who are saying lupus doesn't have them? 50 years of thiscauses a lot of damage. So how do I say "lupus doesn't have me"?
Tez_20 said:I shall keep going until i drop dead and that's it....i hope it does'nt stretch to the age of 50 though because otherwise i was made to suffer, such alot to deal with.LOL
This is dedicated to all my friends...who bring the best out on people and can still make them smile.
Love to you all...your ever devoted friend Terri xxx
Julie i could always ask...for when i'm ready to be admitted.lol
jujubeee said:
Can we just send your nursing home afloat and have it drift to us over here for a visit? LOL
There is nothing like being in a propofol coma for 5 days and then laying in the bed, after you wake up, and having nurses wipe your butt for you since you can't get out of bed. I got to be real good friends with my MALE nurses....LOL!
Lori
Terri, you are my HERO! Thank you for sharing this with us!
Love you,
Lori
Tez_20 said:
This is dedicated to all my friends...who bring the best out on people and can still make them smile.
Love to you all...your ever devoted friend Terri xxx
I'm speaking from the heart now...it's so wonderful when you can sign into a site and find discussion's being took serious but where crack and laughter can be involved...this truly makes my day and i'm just totally blessed to know such many members like you. :)