hhmmm... why did this happen?

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10 months ago my older sister was diagnosed with Lupus, and since then I have been overwhelmed with the amount of stress and frustration from everything. My sister started to see symptoms in early November 2010 and then when she was diagnosed everything was flipped inside out. So, the first few months of her having lupus seemed to go on for years and years! She was in and out of the hospital for 3 or 4 weeks at a time and was in the hospital through Christmas, New Years, and even her 19th birthday. She had to have been home for only 3 weeks max the first 3 or 4 months or so of having lupus. All the doctors have been doing is giving more medications to her to the point where she was taking almost 50-60 pills everyday which made her sick all the time. But finally they realized, "oh wait, 25 prescriptions may be a bit over doing it". The doctors dropped a bunch of then so she was down to 16ish. She has had many emergency room visits and hospital visits and most of the time they didnít really learn anything. I always tried to stay positive and say that she will be home next week from the hospital. But then usually what had happened is the doctors said that she will be able to leave tomorrow and then something horrible happens like seizures, and episodes, or some crazy allergic reaction from a medication. When this happened she was put in the ICU (intensive care unit) and put on a ventilator because of all the fluid retained in her lungs. One time when she was in the ICU they decided to have a dialysis done and she ended up losing almost 50lbs of fluid weight and looked wonderful! But of course it came back gradually. And Because of her kidney problems and fluid problem she was on a sodium restricted diet which is really difficult to follow being that everything has salt in it! Her kidneys got better from the restricted sodium and are almost back to normal as of now. But then her potassium started to become a real problem. It would be really high and she would have to go to the hospital and it would go to low and have to be sent to the emergency room. So it was sort of crazy with that. The doctors also have her on cytoxin once a month which I think is helping but it really just seemed to make her sick the next week and lose her appetite. But now she is not on the cytoxin but on an even more restricted diet. Her doctors have just been basically been giving her a huge list of what she canít eat which is a really big adjustment from eating what you want. From everything happening so suddenly of course she is really stressed which makes her lupus symptoms flare up really really bad. I have been trying to keep her not stressed and keep her occupied and in general hanging out with her, but she always seems to be stressed! Itís so difficult to handle everything in my life at the moment.

But I think I have an idea of some sources of stress are. I think that they are coming from my parents. My mom and dad are divorced and live 6 hours apart. We live with our dad and step mom, and I think that they have been handling my sister the completely wrong way! They constantly yell at her and never know how to give her a break from lupus! We could spend all of dinner and the rest of the day listening to them saying," you are not allowed to eat this, donít forget to call the doctor about your perscritiption. You need to sort out your pills tonight. Do this do that etc". They never stop nagging her about it. They are practically suffocating her with it! They donít do anything that makes sense either. They will tell her donít eat this but then go to the grocery store and buy it which is not a good thing because when you buy it and tell her not to eat it of course she is going to hide from everyone because she is being told not to. And when they catch her sneaking food they yell at her for it making it worse because then she will hide more and more and we wonít be able to do anything about it. Oh and my step mom came up with an awful idea that my sister will be cooking separately from the rest of the family which I take as pretty much saying that they could care less about what she eats and just want to worry about themselves. God forbid have to spend a little extra money on low sodium food. Which by the way they havenít been doing a very good job in. Itís like they donít care to take the time and effort to look at the labels when buying food and looking for sodium and potassium. But I know that they do care and want to help her. They need a whole different approach though. I donít get it. If her little brother wasnít there to support her (Iím her little brother) I think she would go absolutely insane with the constant stress and anger. Although, she would be so much less stressed if she talked to others about it and expressed her feelings. But the problem is is that she wonít open up to anybody. I have tried countless times and so has everyone else in the family. I have heard from other people that have lupus that the best thing you could give them is a counselor. If she talked about everything she could be able the get a lot off of her chest, and it would , make her less stressed too and allow her to want to move on in life past these difficult times. Otherwise she will be like this her entire life. Nobody wants that obviously.

Another thing on top of that is that since our mom is so far away it makes it difficult for her to see her when she is in the hospital or something. This makes it a whole lot harder on my sister and my mom. My mom handles K.C. so much better than my dad. My dad is a great person but itís just that at his house it seems always to be sooo tense. But at moms house it is so much better the way they approach her without getting mad. They laugh and know how to have a good conversation at the dinner table. When we are at our momís house my sister always joins in the conversations and smiles and seems to be her normal self before she got sick. Unlike in my dadís house. But unfortunately she wonít open up to our mom either. My mom also spends so much time looking for food right for kc. her and I could spend hours at the grocery store looking at every label so we can be sure what is best for her to eat. Soon she is moving closer and K.C. will probably move in with her. I think that it would be better for her if she moved in with our mom. The most difficult thing about this whole situation is watching my sister do something she isnít supposed to be doing. Like sneaking food and not exercising. I donít like it obviously but there is nothing I can do really. Hopefully she will learn what she has to do and stick to it and get really dedicated to getting better and then she will be on the right track to starting back into a job and going back to college and all that. But right now it seems as though that she is trapped in her own nightmare and can never get out of it. As much as we try nothing we say seems to ever make her want to help herself and we know that the only person who can do that is herself. But everyone tries to support her still and show we are still here for her. That why I think a counselor will help her organize her thoughts and everything and kind of snap her out of her world and come back to reality. Once she can do that she will be able to focus on her goals and get back into her life she lived 10 months ago. I just am completely overwhelmed by this and Iím sure everyone else in my family is too... I just want her back to normal. I would do anything at all to heal her and I would ask for nothing more.
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  1. ritzbit's Avatar
    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.
  2. siege929's Avatar
    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...!
  3. Nonna's Avatar
    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
  4. siege929's Avatar
    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 =)


  5. tgal's Avatar
    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!
  6. siege929's Avatar
    Okay thanks... I didnt really know the difference, ill do that next post if i figure it out

  7. Mica's Avatar
    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.