Today i had a day off of school so it was going to be just me and my sister and we had plans to watch a movie and play video games and stuff. So we were both excited for today to come. So she woke up and said she was still tired (from being in the hospital the last few days) and to wake her up at around 12:30, so i told her i would. And when 12;30 came she wanted another half hour, so i figured she needed to catch up on some sleep after little to non e for three days or so. So i went to wake her up at 1:00 and she wouldn't wake up. I started to worry and called my dad and he said to let her go and she should wake up. But then she started to have one of her episode and a spike in her chest pain so i stayed with her and tried to talk to her and help her through it. And when she started to calm down a lot i left her alone again hoping she would fall asleep, wake up and be better. But about 10 minutes later i heard a really loud thud and i freaked out because i knew it was my sister. I guess she was walking and blacked out after 2 steps from her bed. and then fell flat on her face. So i tried to see if she would get back in her bed and i called my dad again to tell him what had happened. then another 5 minutes later or so, she started to have REALLY bad pain and was literally screaming in pain and was still unconscious. At the same time she was twitching a lot to the point where i wasn't sure if she was having a seizure again or not. So i called my dad again told him what was going on. He said that i shouldn't worry and that it is part of her episodes she has. But of course i was still freaking out and worrying. Trying to help i rolled her over on her side and got her her pillows and a blanket so she could be more comfortable. And i laid beside her for the next 2-3 hours holding her hand praying that she will be better. I didn't know what else to do help. It was really difficult to be alone in the house while Kc was having an episode. I don't know what to do anymore. I'm so confused. I wish icould just take her lupus from her.
quite a few of us have read this post.....
it is difficult to know what to write.
your sister will never be back to exactly what she was.
we hope and pray, that she will be alright.
with most of us.....
once our medication is sorted out.....
we become more normal.
it is not easy to get the balance right.
sometimes it takes weeks........
for others unfortunatelly it can take years.
the body has to adjust to each medicine change.
eventually it is hoped a balance will develop.
i feel your pain, i went for about 30 years without any medication.
i did not have the "eposodes" your sister has.
there is quite a few on here that do.
i wish you peace of mind.
it is never easy watching someone you love suffer.
you cannot take away her pain, but you can comfort her.
thankyou for being her comfort.
Your sister is very lucky to have you.
Like Steve said, it takes a while, until the right meds are in place.
I am sure it really helps her, that you are there for her.
Maybe you can go with her to her next doctors appointment and ask the doctor. what you should do, if this happends again.
Good luck to you and your sister.
I know you feel helpless, and that you feel like you cannot do enough to help your sister. What you need to know, is that you ARE doing so much for her. Having just one trusted friend or family member who is willing to help a person with Lupus, and be there for them on both the good days as well as the bad, is the greatest gift a person with Lupus can receive.
It's hard for those who don't have this disease to understand just how alone and isolated we can end up being. To find out you have an incurable, chronic, and sometimes fatal illness is bad enough. But then add to that, people who will say things like "but you don't look sick", or call you a lazy hypochondriac, or ignorant, hurtful healthcare "professionals" who treat us badly, and the situation becomes even worse.
When I was diagnosed with SLE in 2004, I had no support at all, nobody to lean on, nobody who understood or cared. The isolation and despair drove me to do desperate things. I would have given anything to have a person like you in my life. I believe that if I had just one understanding and supportive person in my life back then, I would not have acted on my desperation.
You need not feel bad, as your sister is very, very lucky to have you in her life. And have hope, because things will not always be this bad. It took me a good year and a half after my diagnosis to get the disease activity under control and begin to really adjust and accept the situation. Those were tough times, but I got through them and although life is much different for me now than it was before I was sick, life is indeed good.
Tell your sis to hang in there, as there are still plenty of good days ahead.
I just want to add my name to the list of those who are so moved and concerned by your post. Lupus affects everyone in a family. While your sister is struggling through a very difficult time, so are you. Neither one of you will be the same. Your love and support is truly a gift.
I beleive you will both see better days. Hang in there. Give your sis a hug for me.
Hi CJ! I just spent some time reading your blog posting so I could catch up on your situation. I feel totally overwhelmed and I am a total stranger. I don't remember seeing how old you are, just that your sister is 19 and you are her younger brother. First of all, let me echo what everyone else has said about how amazing it is that your sister has you for support. You are an incredibly caring and committed young man with amazing insight into your family situation. Maybe YOU should consider a career in counseling... In the meantime, please take care of yourself. It's hard to do that when someone you love is so sick, but you need to find people you can vent to and have fun with. We are your new cyber-family, but we can't give you a hug or a mental break from your stress. Make sure you hang out with your friends when other people are around to watch over your sister, and find a trusted adult to talk to on a regular basis.
I have a 20 year old daughter who is also not able to work or attend college due to multiple health problems, and I have lupus myself, so I understand some of the stress you are under. Your sister is very ill, and I can't imagine how scary that day must have been for you, especially since you were looking forward to a special time with her. Honestly, I would have been calling 911, so you are braver than I am. I don't know what to tell you about your sister's episodes, but Debbie's suggestion that you go to her next doctor appointment is a good one. You might also want to keep a diary of what you see, and (with her permission) record her having an episode so that the doctor can see exactly what is happening.
Your blog talked about the diet and exercise issues. It sounds like you are willing to change your diet for her - so maybe if someone is making a separate meal for her, they could make enough for you, too? If you have an interest in cooking, maybe start cooking for the 2 of you and whomever else is willing to do low sodium? Do you have a Wii or XBox with a game that would help your sister to exercise or is there something that the two of you could do together that would be easy enough for her? I have to tell you that exercise is really hard when you are already exhausted. I'm not very good at it because it feels like I have to make a choice between exercise and getting the laundry (or whatever chores are stacking up) done. Ultimately I know that it will give me more energy, but that's really hard to visualize when I can barely get through the things I have to do to take care of my family. If your sister can find a way to exercise that is enjoyable, it will be easier for her to do.
My thoughts are with you, CJ. You have way too much responsibility for someone so young, but I know having you is such a blessing to your sister. Take care, my new friend.
Thanks guys, this makes me feel a whole lot better! I'm so happy I get to be a part of this cyber family... oh and f.y.i, i am 16 years old. Still in high school unfortunately, haha. but i think i can get through this. Thanks again for everything guys!
I've just read this thread, and it brought tears to my eyes. You are such a great younger brother!
You are doing just what your sis needs for you to do - being there for her and being supportive.
There are some threads on this site written by people who have seizures as a symptom of their lupus. I've never had one, but I know that some of our members, like Tgal, are very experienced with them. Read the threads that you think might help and try to get your sis to read them, too. Encourage her to join WHL along with you. We will be very glad to have you both as members of our cyber family and we'll try to answer your questions.
Hugs to both of you,