Wow, your post touched me. You are like the best sibling ever, no lie little brother of the year award to you! Im 20, and have a twin sister who has told me she hated me because of my lupus, but my mom has always been there for me. I can tell you from my side is that I am so glad that my mom let me take control with my medical stuff, 13 is not too young to know what to do and when to take meds. Now that I read this I realized I will do the exact opposite of what the few things my mom and sometimes sister tells me to do. I think it has to do with the fact that with lupus you can't have any control and when you say when to take meds and do things and does help with the loss of control over your life. I wish I found this site when I was first sick because it would of helped alot to know there was others who had the same problems. Your sister should check out this, even if she doesn't want to talk to anyone maybe she could read some of the blogs and forums. You know maybe it be good for your parents to check out this site too might help with understanding your sister if they talk to some people on here.
Okay thanks... I didnt really know the difference, ill do that next post if i figure it out
Hi There and welcome to WHL! You are an amazing brother and she is lucky to have you!
I am so sorry that I have not responded sooner but I must be honest and say I seldom come to "this side of the room". I think you would get so many more responses if you would post this, or any future topics, in the forum instead of the blog section. Many of our members don't come over here and there is such a wealth of knowledge within our community and I want you to have all of it available. If you don't want to do that and you want to keep posting over here feel free! This was only a suggestion not a rule!
Thanks. Sorry if I seemed really mad at my parents, but it’s not that I’m mad... I’m just really stressed too. I love my parents unconditionally and wouldn’t want anything to happen to them. I think that everyone is just really scared of what might happen to her in the future. I wish that it was me that got sick instead of her; I would give anything to take it from her. I'm worried for her and can’t seem to concentrate on school work, or do anything without thinking about what she is going through. But I know for a fact that my family is one of the lucky ones. Others have it so much worse and unfortunately some people going through what KC has don’t have a such a caring family to run to. I don’t like being angry but sometimes that is just how I end up venting all of my stress. Thanks for the support =)
Hi, I don't know if you'll log back in; but I think you are right about a counselor. Also wanted to say that your families are dealing with fear of the unknown. Everyone is scared and deals with it in their own way. Your stepmom is dealing with this as best she can. If it seems insensitive, it may help if she joins you and your sister and your father in a family meeting where you air your feelings. I'm not saying this is what you should do, but as a divorced mom my perspective may be off or prejudice against stepmoms
I just wanted to say that your family is dealing with sudden chancein their lives and fear of the unknown future is scaring them and you. Fear of the unknown is hard to deal with. You all need to talk it out. Going to a couselar would be the best way to deal. Hugs Nonna
It has been a rough year for everyone; too much has changed from the way it used to be. My sister does the same thing, when she gets aggravated she won’t do the exercise she needs to and won’t want to talk or anything. (Causing she to start to retain fluid and gain water weight and then she will get sick and that's just no fun) I do my best to keep her in a good mood so she doesn't get too angry and her symptoms don’t start to flare up really bad. When I see she’s unhappy I hang out with her for a while and tuck her in when she’s going to sleep and she is usually in a better mood. (I don’t want her going to sleep in a bad mood. I'm always paranoid that since she is stressed that day she will have an episode and no one will be there to notice and I don’t want her to be alone while going through that.) Also, I have tried hinting to my parents that they are doing something wrong anytime I can. They never seem to get it. I have even told them what they were doing wrong that wasn't making my sister’s situation any better and it's almost like they ignore me and I find it really frustrating! (A good example is is that my step mom came up with this idea to have KC make her meals separate from us and thinks it’s brilliant. But the way I see it is that every dinner my sister will be left out of the good food we are eating and compare ours to her (not so good) food and then start to get depressed. So I suggested that our whole family eats the same thing KC is eating to show that we are supporting her and we are there tp help her. And that by us eating the same she might think," Well if my family can change their entire diet for me I think I can change mine for them". It'd be kind of a motivation boost for her. But the best response they came up with is,"well you can eat the same thing she's eating... if you want." So I guess the whole part of supporting KC and showing her that we love her and everything just whooshed right over their heads! I don’t know what it is why they can’t even consider changing their diet for my sister.) They can make me really frustrated a lot now. But I do my best to not to show any sort of negative emotions around my sister. (So she doesn’t see me in a bad mood and then she gets in a bad mood to.)
I really hope that soon she will find a new normal self again. But I know she won’t be able to do it without any help and support from her friends and family. But it’s difficult to support her being only one person in the household ( I have 5 sisters, 2 live with my mom 6 hours away, 1 is in college, and the other seems to avoid her normally by going in her room... and my dad and step mom help a liitle bit here and there so you can see how I’m sort of stuck.) But what my Mom and I both think will be really beneficial to KC is a counselor! I can’t even imagine how stressful her situation can be. She went from being in college and having a fulltime job, and she could eat what she wanted when she wanted and was a very joyful person to having lupus, a strict diet, and constantly having stress, and stress thrown at her every day. That’s a really big change in her life and adjusting to it is not an overnight task. A counselor could help manage stress and frustration and hopefully help her realize that she will need to start to take her diet and new lifestyle seriously. Otherwise she will be like she is now for the rest if her life and nobody wants that. I want her to be able to move on with her life and learn that she’s never going to be the way she used to be again. (in a good way) And even if getting a counselor doesn't go the way I would have hoped it to, at least we tried. It can’t hurt to try. But at the moment I’m not sure what my dad and step mom will say about the idea yet... but soon everything will start to get better and she will have her lupus under control and I might be able to get a goodnight sleep again.
Thank you so much for replying back to me, I appreciate the advice. When I logged on and saw someone replied already and I was so excited...!
First thought: You're an amazing younger brother. My brothers will not even help me by bringing something I ask for when I'm flaring and can barely walk.
I'm almost 19 and I can't even imagine all of what your sister is going through. It sounds like its been a really rough year for all of you. Maybe since you see the stress that your parents are causing her you can find a way to let them know that you don't think its helping. When my mom got like that with me it just made me really aggravated and made me not want to do things, like take my pills, even less. While your sister will never be her old normal again, I'm sure in time she will find a new normal and she will be healthier. I hope things start to get better for her and your family.