View Full Version : i cant accept what happened

11-04-2011, 09:41 PM
It seems as though its been years since my older sister was diagnosed with SLE, yet its barely been 10 months. This is really difficult to deal with. I cant concentrate on anything anymore, i constantly worry about her...I cant accept that this has happened. Too much to take in at one time. I love her too much to see her so sick all the time. I wish i got lupus and not her, i miss the my the old KC. The way she laughed and always talked and never got off the computer because she would get into her novels she was writing, and she would always want to talk about them to me and tell me everything and was always so energetic, and happy. She is just so different now with lupus. I'm worried that she will be like this the rest of her life. I don't want that, no one in my family wants that.

11-05-2011, 02:11 AM
i have placed an answer on your other post.

thank you for being you.

11-05-2011, 07:26 AM
I replied in your other post as well Siege.

Hang in there.

06-06-2013, 03:09 PM
I understand about it being hard and I'm not sure if this will help but ill give it a try :)

Even if she's not feeling up to it maybe you can talk to her about her story ideas. I know you can't bring it all back the way it used to be but maybe bringing some of those little things back that she loved to do. It might cheer her up :)

06-07-2013, 11:37 AM
It is so nice of you to be there for her. While it is very difficult for us to adjust it is hard on family and friends as well. Just like many Lupus patients need to find a professional to speak often our families do as well. It is a hard adjustment for all of us. We will be here to try and help as we can. Welcome to WHL

06-07-2013, 01:07 PM
Having the love and support of family is just as important as any medicine....I know you can't make the Lupus go away, but I am sure your love and support is a huge help to your sister....

06-07-2013, 01:41 PM
I can't tell you how happy I am to read your post. I think it's so fantastic that your so supportive for your sister and have actually taken the time to understand her and lupus. My twin was and still is so cruel when dealing with my lupus, so for me I love to see people like you! Just being there for her is really all she needs from you. Your sister's old personality is still there, she's just tired and doesn't feel good but that doesn't mean she doesn't want to hear from you. You have to be prepared that this is for life, sure there are going to be times where you and her are going not going to even notice lupus is even there anymore and she is just like her normal self and there are going to be a lot of times where she doesn't feel good like now. Your sister and your family is still in that adjustment period,I think it takes a few years to get comfortable with lupus not just physically but emotionally. Because I don't feel well and haven't really been me for the past few years I am not as talkative and energetic as I could be when I feel well, but I would love it if my sister called or text me just to talk. The only time I felt like my sister even made an effort when I didn't feel well was when we would just lay in her bed watching Wheel of fortune(which we love) I loved it because it was something we both enjoy and I felt like she actually cared for me, it only lasted a couple months. Anyway the point of my story is find something that you both can enjoy that she can do when she is in a flare like now and it might seem she's not interested but she probably will just be thrilled to have you there and hang out or talk with her. Just imagine for us lupies that there is a lead blanket covering her hiding and weighing down her normal personality but inside her personality is still there it's just hard to show through that lead blanket. Thats the best way I can explain it and I hope it helps.

Craig Dempsey
07-30-2013, 10:28 AM
It's been a while since I posted to WHL. My wife has SLE and it is very hard for family to deal with. We don't know what to do or say. When we do we are usually wrong. I stand by her side doing anything I can even if it's just to listen to her. Our kids have a hard time with it because they are kids. Kids can be insensitive at times without even trying. Her sister tried something different...she cut herself out of our lives completely rather than to deal with it. That has made my wife worse mentally. Nothing has helped her yet. She has been on every drug I can think of and is currently on benlysta infusion #9 with zero positive results so far. Her Dr literally has thrown his hands into the air saying he doesn't know what else to do and that we are just wasting money on copays. It's HELL! Every single day I pray for a cure, I pray that I was sick rather than her, and I pray that she could be out of her misery.

My only advice is to just be there for her. She will appreciate it. I am sorry to sound cynical but I too am losing hope. I am lying to her every time I tell her things will be ok or when I tell her she will feel better. Clearly I need a support group. I am sorry to have gone off in another direction with this post. Nothing I just wrote has ever been said out loud. I am the rock that's supposed to hold everything together and I am crumbling.