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Thread: Hmmm... Why did this happen?

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    Default Hmmm... Why did this happen?

    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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    First let me say what was echoed in the blog section about what a wonderful brother you are. "why" is a question I no longer allow myself. This disease sucks. Sometimes it is worse than others but it does suck. It sounds like your sister is going through a very severe bout with Lupus since you mentioned CNS involvement (Central Nervous system). Not everyone has seizures and organ damage but when you draw that straw it is an even more difficult disease to handle. The good news is that most of these things can be controlled with meds however it takes awhile to get them sorted out and figure out what works and what doesn't. There is no cure but the meds do work to keep it under control but it takes awhile to get there. The bad news is that sometimes the meds that work stop working and they have to be changed again. It is all just part of the process.

    You said something that is often said by younger people and although I understand it completely it still worries me to hear it. "They never give her a break from Lupus". While I understand what you are saying and we have to learn to live as normally as possible within the confines of our disease, we can never forget that we have it and we can never forget that it is our meds that keep us alive in most cases. Too often in the search to be "normal" people look for things that they think will allow them to stop their meds and be young and healthy again. Please, Please remember that it doesn't work that way. We all wish it would but it doesn't. 40 plus years ago almost everyone died from this disease (except for a few lucky ones) but now we understand what meds will help keep our disease under control. Not gone, but under control. Never let these facts escape your head. It is temping but these facts, above all, will keep your sister alive.

    Don't think think that what I said above means that we don't get to enjoy the life we have. We do! It is just a "new normal". We have to have things that we enjoy or it isn't worth living. Our dreams may have to have changed but that doesn't mean we can't find new dreams and make them a reality. With the help and support of family like you your sister will be able to get beyond the initial hurdle of getting this under control and she will be able to have a long, prosperous and happy life!

    Welcome to our WHL family! It is ALWAYS wonderful to have supportive friends and family join us! Please make yourself at home. Ask questions, tell stories or just do whatever it is that you need/want to do. We are really glad to have you here!!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Hi Seige929;
    Your sister is so very lucky to have you as her little brother. I can tell, from your post, that this entire situation is a bit stressful for you too. However, you have a lot of insight about your sister and the situations that may be causing her excessive stress. I do hope that you mother moves closer and your sister is able to live with her, especially since it seems that she is much more at ease with your mother.
    You are correct in your assertion that a counselor might be helpful. I always advocate that it is just as important that we take care of our emotional health, as it is that we care for our physical health. I am a avid advocate of therapy for those of us who suffer from this disease.
    Your sister has lost something very important...her health. This is a loss that is as devastating as losing a dear friend. She is grieving that loss and, as such, is loathe to discuss her feelings because she probably does not understand them herself. So, some form of therapy would probably be a good thing for her.
    On top of losing her health, she has had her free will of nutrition taken from her and her life is filled with "can't do" and "don't do". This is a very difficult life to live, one in which you feel that you have no control, whatsoever, of any portion of your life. Her reactions (and behaviors) are pretty much what any of us would do if we felt that way..we'd take control by doing/eating what we want. It is difficult to weigh the pros and cons when you feel that you have no control and no options.
    Do you think that your sister would come here and participate with us? She would find that this site is filled with people who truly understand how she feels, who are more than willing to give her support and who can offer her advice on how to eat healthy without feeling deprived or guilty, how to exercise without feeling fatigued and exhausted, and how to deal with medications in order to find a regimen that works for her.
    Please know that we are also here for you whenever you need us. I am so glad that you found us and that you reached out to us . Please stay a while and feel free to join into any conversation that you like.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    hi seige,

    firstly thank you for caring for your sister.

    we have a few other members your sisters age, if she wants to talk to someone that she can relate too.
    ritz has been a member here for quite a while, give her a personal message, if you want.


    as others have said, lupus never lets up..... it does get better.
    lupus is a problem with our auto immune system. once the balance is again maintained..... life gets better.

    we need medication to keep this balance,
    and at times this medication needs changing.
    at times our system goes out of balance again.

    we are never normal.. as we used to know it.
    but life can be good.

    someone who might interest you
    is rob.
    basically he used to fly airplanes and make bombs and guns for a living.
    he got sick, and had to give up these things.
    he also has some brain issues, like your sister.
    now he is lerning to be a drag car racer.
    (life can be fun) but our limits are changed.

    remember. once we can get our system under check, (with medication), life can get better.
    never normal as we used to know it....... but better than what she goes through now.


    once again thank you for caring, you are a great brother and i like what i see.
    thank you for being you.

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    i will see if i can get her to join too... i think that you guys are awesome and would really help =)

    Thanks!

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    Quote Originally Posted by siege929 View Post
    i will see if i can get her to join too... i think that you guys are awesome and would really help =)

    Thanks!
    we would love her to come here.

    if she does...... have her tell us she is your sister.
    it makes it easier to put 2 and 2 together.

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    I'd love to talk to your sister if she wants to talk to someone her age who also has lupus whether it be on here, facebook, email or whatever. How are things going?
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

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    That would be awesome! The only trouble is gtting her on WHL without bugging her too much about it... i can't force her too join, but i think she will want to come one and check it out.

    Although i think it would be great if she got to talk to someone her age. Thanks.

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