Family with Lupus

[hlafarlett]

Hi my name is Heather.

Three days ago my sister was diagnosed with Systemic lupus erythematosus (S.L.E.)

She has part of her left lung shut down and spots on her right....her kidneys are also shutting down. So as you can probably guess they also told her she only had six months to live.

This has been a bad blow to our family and I have tried to deal with it the best I Know how. I work at a hospital so I looked into what is SLE and what happens as it progressive. I have always had this need to know everything cause I hate surprises.

We have never got on great but this is one of those things that you forget everything else and try to make the time you have left the best you can. But part of me cant. I am so mad because I thought we had more time to grow and make up and become closer. I am mad because she has focused on her and what makes her happy which she should but it means I can't resolve all my anger, Im not going to burden her further.

I am also angry at God....why didn't he let us know sooner....we could have done something to slow it down. I just cant imagine being diagnosed and told you are going to do in the same moment. She is convinced she can get it into remission but everyone else (including her md) is saying thats not possible.

But most of all I'm sad...I have to say I have never been this sad in my life. I keep wondering how I am going to get through this.....how do you? How can you make everything happy when all you can think of is this is your last Xmas....that she may not even make it to her birthday...Help!!! I need some guidance on this.

[helloos]

Hi Heather. First I would like to say I am sorry that your sister has this diagnosis and all that you are going through. I think finding out more about Lupus is helpful for you and your family. It is heartbreaking to get such news all in one instance and have no time to prepare or adjust to the situation. A lot of people do have Lupus and can live normal lives, however others are not as fortunate. I would have a second opinon at least so that you and yours can understand this diagnosis and what is happening and feel comfortable knowing what the result is by more than one doctor. There are a lot of treatments available but it all depends on the availability, where you live, and the severity of the disease.

I am sorry that I do not have that magic wand to make things better. I am sure that others will come here to help you a little more and other suggestions. I am not a doctor, so I can tell you anything for sure.

I can say that your feelings are normal and you are in the right place to address them also if you would consider maybe counseling would be helpful. The emotions you feel and your sister feels is like a roller coaster. Up one minute, down the next, mixed emotions...the why, the what if's....etc. It is normal but a pain in the butt !!

Try to keep your faith in your beliefs as it will help you through this. Try not to look back to the past but to the present in finding peace within yourself and with your sister to make these days not so stressful. No one knows what lies ahead and sometimes someone close is taken by an accident and we are in the same situation of wishing we could make things right. I guess if you have the chance now, it would seem that would be best to do. Family know we love each other, but are different. That is the good thing about family. You can do anything and you still have the love and forgiveness. Try to remember that God does not create illnesses or accidents but he will be there to sit with you and be beside you through your trial and difficulties.

Please read some posts as they will be helpful and informative and you ever need to vent email me or send a message.

I know what you are going through and it is hard, but take a day at a time.

I wish I could do more for you. My thoughts and prayers are with you and yours. Hang in there.

[jude mack]

Hi Heather

First, WELCOME, I am sorry it isn't under better circumstance. And I am sorry to hear about your
sister, lupus is hard enough to digest, the prognoisis is for your sister must be devastating. As Paula
mentioned, some do go on to live close to normal lives. And the second opinion could be the best
thing you can do for your sister to be sure any other options are covered and you and your family,
can feel secure with her diagnois.

I think you are doing exactly what a sister would do, you have put aside past anger to help your sister,
you are here for support and knowlege, and believe me, many will be here to support you through, such
a trying time. So please keep on posting and let us know what is being done for your sister, and if you have
questions, wer'e here for you. My thoughts go out to you and your family, and my prayers. style_emoticons/<#EMO_DIR#>/hugbetter.gif

Take Care
Jude style_emoticons/<#EMO_DIR#>/flowers.gif

[cris]

style_emoticons/<#EMO_DIR#>/hugbetter.gif Hello, I'm so sorry to hear about your bad news... BUT do not give up on her and the will to live, believe me I was told in my early 20's I might not make it also, and I am still here. If she believes then you should encourage her, I know sometimes these doctors go by the books and statictics but I am telling you to be strong, she is young and she has all of her family there, I went to a lupus meeting once a long time ago before I had any knowledge of how bad lupus SLE can get, and a youg doctor stood up and told a story of her being on her death bed with all of her organs shutting down and the priest comming in to give her her last rights, and here she is standing in front of the room yrs later healthy as can be telling her story so please just say prayers and I'll say prayers and she will get through this. Keep us posted on her condition , Please.... God bless Take care cris style_emoticons/<#EMO_DIR#>/hugbetter.gif

[hlafarlett]

style_emoticons/<#EMO_DIR#>/Thanx.gif Thank you guys for your warm support and wishes. It has gotten easier with each passing day. My brain has calmed down but I think that has to do with resignation and the brain shutting down some parts. I think it just hit so much harder for us because of the holidays. At least we can make these last ones more special than the ordinary.

I haven't talked too much with my sister and she has stopped talking to the family at the moment....which has been noticed by all. Is that normal???? I just keep telling myself its because she is working through it all.

She has also decided to move to Indiana for some strange reason to live with a friend, uprooting her whole family to do it....I think she has gone nuts. But I dont dare say anything negative...How do I handle all these radical changes? Are they normal? Does anyone have any idea why she is moving away during such a delicate time????????? style_emoticons/<#EMO_DIR#>/shrug.gif

[bugsy]

<span style="color:#3366FF"><span style="font-size:11pt;line-height:100%">hiya

First of all i would like to wish your sister all the best for the future and hope that things will change for her and they can get this disease under some sort of control so that she will see next christmas and the after that too.

I can not quite understand how part of you is still holding back from making peace with your sister, you have been told she as 6 months to live and you are wasting valuable time been mad.

I haven't spoken to my sister for nearly 8 years and i have been ill for 5 of them, she as been no where near and truthfully i wouldn't want her to come and give sympathy just because i am ill, it would be so false, if we couldn't sort things out in the time we had before i became ill i don't want to sort them out now.

As for your sister moving - let her go, if i had been told i had only 6 months to live, trust me i would be trying to fit in everything i had wanted to do before the day i die. If this is the way she is handling the fact that she hasn't got long left - then let her get on with it.

I think you need to start focusing on your sister and the time she as left and not on how mad, sad and angry you are, she is the one trying to cope knowing she is gonna lose everything.

I wish your sister all the best - Jo.</span></span>

[Clare.T]

I have had to wait 24 hours before trusting myself to reply to your post.

A friend of mine says that " 'normal' is a setting on a washing machine ". It's also the name of towns in AL and in ILL.

People with lupus usually assume that their friends and families will be supportive and understanding but this is very often not the case. One thing is sure: it is as likely to bring out the bad in people as the good.

People with lupus need to avoid stress as much as possible. Many stresses are unavoidable and simply have to dealt with. Others can be avoided and have to be if at all possible, and that includes what we call toxic people.

You seem entirely focused on how rotten it is for you, how awful it would be if it was you. Perhaps you need to be more honest with yourself. Your reactions are extremely distasteful and you show zero sensitivity to us.

Of course it's not possible to comment on individual circumstances, maybe your sister is in such a parlous state, I hope not, but speaking generally, I would never "guess" that any doctor would say a lupus patient would be dead within six months. Even with near total loss of kidney function there is dialysis and kidney transplant. Maybe one of yours could be used, there's a thought.

There are also very powerful treatments these days that literally can make the difference between life and death. Lupus is not always progressive to death. As they say, while there is life there is hope.

And who is everybody else who agrees that she can't recover ? There's nobody to give her any hope by the sound of it, nobody to ensure she has the best quality of life possible on her terms and the most expert treatment available.

How "normal" is that !

I'll be keeping your sister in my thoughts praying that all goes as well as possible for her, and above all that she finds happiness and loving selfless companionship, relief from pain of every sort.

Life is full of surprises and by definition they are not foreseeable: we can't be certain of anything.
You can't read it in a book, perhaps just as well

Clare

[RAD1]

Hi! and style_emoticons/<#EMO_DIR#>/flowers.gif for your sister,

My father has lymphatic lymphoma for the past 16yr or longer. he has been able to be put in remission each time he has become so very ill. You know what has helped him the most next to his chemo ?? His belief that he can kick his illness!!!! He just turned 81 on Nov. 11th, yes he has many probllems but he has faith that he CAN deal with what comes his way. And yes he has truly been through so very much.
Because of what I have seen with him over the years, I can say that if your sister wants to go, let her go, support her, it IS ALL about her now, and she needs to be stress free as much as she can be now. Tell her you love her and are proud of her, encourage her. You will never be sorry for that.

Ruth

[helloos]

Hi there.

The others have posted nicely and gave good advice.

I just was trying to think if I were told that long to live,would I run, would I stay?

Hmmm....some part of me would be scared and maybe not want my family to go through this. Maybe that part of me would run away from them. The other part would want to spend every last minute with them.

It is a hard one. Maybe the best thing to do is to have a talk with your sister. Tell her that you will deeply miss her and that you were really wanted to get to know each other more and spend more time together and that you wanted to be there for her and help her. Maybe she needs to hear that her family is there for her? I am just suggesting, as I have no idea about your situation or hers. I am just thinking maybe you really want to say these things to her. It seems that you love her sincerely but maybe you both haven't had the relationship you both want and desire. Sometimes just letting that person know that you love them, want to help them and want to share things with them despite the differences..... will help.

She must be going through a lot in her mind. Sometimes things are drastically done when your world is turned upside down. I think you should see where the best treatment can be given to her. Maybe there is hope for her as the others have said. Maybe you can ask her to come to this site and find some support or other places that people who are in the situation can help.

If you can't say these things to her, maybe write them. Sometimes that is what I do when the situation is too hard to say and you think you might mess up, etc.

I hope that this works our for you and I really feel like you need to speak with your sister.

[rwb200]

Hello
First let me say thank you for writting this. This is a subject that is very seldom brought up or mentioned.
It is a very bad blow to find out that a Loved one has something that they know no cure for. It is even worse to be told that you have only six months to live.

This is very hard for the family and even more so for your sister.
If she is doing what makes her happy then she is doing what she needs to do for herself at this point.
At some point she may have a need to try and mend damaged brideges. If not please do not push it. Just enjoy the time that you have with her.

But let me say this. Just because a Doctor says something it does not mean that it is gospel. We must all remember that Doctors do not know medicine they practice medicine, next we must remmeber that predictions like this are only an educated guess.

My Grand Father was told he had six months and was with us for another 7 years.
A cousin was told six months twelve years ago and she is still with us.
Doctors can not say how things will progress, how the person will respond to treatment, or what a persons will to live will do for them.
Of course they could be correct and at this point you need to make the very best of what ever time you have left. Make today as good as it can be and don't worry about going back and rehashing old injuries.
These things can not be corrected, they can not be repaired if they have hung on this long. Just rember that we are all human, we all make mistakes, we all have things we would undo if we had the power to do it. No one has this power and failing to get up and go on only serves to eat you up inside.
You do not say what it was that happened and it truely little matters at this point. Go on and make today the best that it can be for the both of you. Enjoy what time you have left if it be a day or years.

[here]

I am sorry and perhaps I should not write this. I don't mean to offend anyone, but I just think some hard questions need to be asked here. But before I do, I think Clare is right and many others. Many people recieve blows about their health only to prove that the doctors were wrong and live longer and stronger lives.

Seems to me that this is about your sister. She is ill. She needs support. She needs love. She needs encouragement and people to tell her that she can beat this thing! Anything less than that is absolutely not acceptable.

Now for my question, why did u post? What help are u looking for? Not to sound unempathic, because I feel for your pain, but I just don't understand your posting. This is not about you or your relationship. I don't mean to sound harsh. Please forgive me. But you need to move past this and not make it about you. You have been given a wonderful chance in a not wonderful way to recogncile with your sister. How many people have had someone taken from them unexpected and would have like to had made things right before that happened?

Your sister is dealing with something very hard physically, emotionally and spiritually. She needs support.

[Graciella]

I have to agree with everyone else, I think your feeling guilty before anything has happened. Take this time and mend or at least try to mend those wounds from the past. Don`t live with regrets of what you could have done. Do it while you still have time. Good luck and God Bless