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Thread: fight the battle of Lupus by eating right!!!

  1. #11
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    Speaking for myself, I am all for trying something might or could work to make me feel better. But when someone takes the stance that they have THE cure, and saying we want pity and attention for being sick and don't want to get better, then yes I for one am going to speak up. I KNOW how I live my life, how I feel, what I have been through and continue to go through. None of us can know what it is like to be in the other's shoes. Therefore, NONE of us can judge another. This site is for support and information, and maybe a gentle hug now and then, it is not for selling a miracle cure that we all know if it were indeed that then it would be on every news channel and in medical books. So for us standing up for ourselves, if you see that as being critical of others and that we are judging others then I'm sorry. But no one has the right to belittle us, our lives or how and what we choose for our treatments. Just because we don't agree with her doesn't mean we are judging or criticising and I am sorry you see it that way.

  2. #12
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    The point wasn't to say that it doesn't work... But, to say that it works for everyone is wrong, and to tell people they aren't suffering because they don't feel it is right for them is wrong too!!

    If I tell you I had great success with the Atkins diet, and feel wonderful, and you tell me that you don't think it will work for you; Do I then have the right to accuse you of not REALLY being sick?

    The Lupus Recovery diet is VERY soy-intensive... i have learned over the past few months that I can't tolerate soy for the most part... So, I have to find a diet that works for me. And I should not be accused of "not suffering" or being a whiner, because my view and experience is different!

    Nor should I be treated like I don't know what I am talking about, because something doesn't work for me! OKAY???

    THAT is not what this group is about!

    Plain and simple.
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

  3. #13
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    I dont think that Fior was trying to sell her opinion as THE cure, or a cure at all...
    You said if there were "a miracle cure that we all know if it were indeed that then it would be on every news channel and in medical books.." I think this entirely the point that she was trying to make...Modern medicine does not agree with these types of alternative remedies so they arent well known or out there, so the only way we can get this info out is to share our experiences with each other...which is what i felt she was trying to do...not "sell" anything to anyone.

    "NONE of us can judge another. This site is for support and information, and maybe a gentle hug now and then"...I completely agree...I think that the judgement and belittling going on on this post went both ways, thats why I felt the need to stand up for Fior....But we ALL need to be here for each other...Despite the fact that we all experience this disease in different ways, we are still all in the same boat...and we all just want to get to shore safely.

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    Mr. Jill, I'm sorry you feel that way. And I'm sure I speak for everyone here when I say that.

    Now, without speaking for everyone else. My personal problem with the original post was the way it was worded. You have to understand that we have new people visit and join this site everyday. Some of those people are not new to SLE and some are. For those who are not new, how do we know that they have not tried alternatives? For the ones that are new and never heard of SLE until thier dr. uttered it, come her for guidance, support, and answers to questions. There is a fine line in a "support" group. What you say and how you say it can do harm or worse to someone else. In the original post, not once was it said to check with your dr. before making changes. And the tone was quite "as matter of fact". When someone runs across something new or something that did not work for them, that includes this site and others, it is normally worded as "guess what I'm doing now" or "anyone tried this?" Why, because we ALL know everyone is different.

    Then to add insult to injury, once people pointed that out and the fact death is not the only end to lupus, the person who put up the original post starts to attack, in my opinion, everyone on here. We were portraid as attention seeking, whinning, uneducated, not really suffering, drug addicts. If someone wants a warm welcome, that is not how you do it.

    The common saying in this whole thread is "....to help just one person". Well, I can just about promise you that everyone on this site has helped ATLEAST one person in one way or another, and no one was made to feel that they, themselves, were the reason they were suffering. I don't know a person on here that would tell another person that it was thier own fault that they are sick because they have not been positive enough, done enough research, refused meds (because if the lupus don't kill ya the meds will), or drank enough go-go juice. My God, it turns my stomach to even read that.

    The bottom line is.....assumption is the beginning of all screw ups. To assume that everyone here has not tried or is trying to help themselves was way wrong. To try to throw out the "this will work", do it or it's your own fault if you suffer, was way way wrong. I just pray that a newly dx'd "guest" didn't come through here and take off on thier own. I guess we will have to incorporate a disclaimer on all of our post....."this is just me, talk to your doc. first."

    O.K.....I'm done.

  5. #15
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    I did not feel like anyone was belittled until these comments, which I, and obviously others, felt were completely inappropriate, and were interpreted as though our opinions and experiences don't matter if they don't agree...

    Quote Originally Posted by fiorny1
    I will not debate on people's opinion...just for everyone to know, I don't want to be known as a person who is going to sit on this blog and complain and cry about my lupus...some people like to stay sick because of the attention they get..but for those people out there that are severely suffering from the pain and the lupus has dibilitiated them..go to my links and also research other links, educated yourself Help Yourself..like the bible says god helps those who helps yourself!

    So don't give me your opinions, Lupus almost killed me 3 times...and I gotten so much better from just eating healthy, which means whole wheat, soy products, non-dairy and no meat, I went to a certified nutrionist and she as a educated professional knew what kind of diet lifstyle I was talking about and was the only doctor that agreed with me that this may improve my health!
    Besides poeple always come up to me now and they what have I been doing to look so good, especially those poeple closest to me that know what I have been through. So I must inform my experiences..cause I know it can help someone out there who severely suffereing...

    I am positive person and with Lupus you have to stay positive! So please do not give me your opnions ..it sounds to me you are not really suffering...by your response it sounds like you don't know what your talking about but just criticizing me for what..to give some notion of hope..you have educate yourself with this disease cause the Dr's can give you the run around!

    educate yourself first then give your educated opinions!!!
    Most of us HAVE educated ourselves and are just trying to make sure that people reading this board know that everything works differently for different people! Something that can save your life might make someone else severely ill! That was ALL that was being said! There was NO NEED to tell people that they are attention hungry, or not educated, or not really sick! THAT was what prompted everyone to go on the defensive.

    And as a matter of fact, I do believe a balanced diet helps... BUT I also believe that you must find what works for you, and not be made to feel as though you are less than intelligent for having your own opinion.

    Thankyouverymuch.
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

  6. #16
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    I have been a vegan since college - for me it was a religious issue rather than a health issue - but being a vegan certainly didn't prevent me from developing lupus, or from almost dying from it.

    Althought there may be health benefits to a vegan diet (my cholesterol levels are great), it also requires careful meal planning and some study to make sure you are getting complete protein balances and all the amino-acids you need. Although diet coke and french fries might be a vegetarian diet, I doubt any one would claim it's a healthy diet. And for some people a vegan diet may not be appropriate medically - people with certain metabolic disorders simply can't digest certain forms of protein. Additionally, soy is a major allergen for many people. Food allergies are more than a nuisance - they can be potentially life threatening.

    I certainly think people should be proactive about their health, and there are many complementary and alternative therapies that probably deserve further study. But lupus patients are like snowflakes, no two are alike - and something that works for me may not work for someone else, and could even harm them. Penicillin works wonders for many people - it has also killed many people.

    No one - I repeat NO ONE - has the right to judge another's suffering or pain - you cannot know what someone else is feeling unless you live in their bodies - and it is cruel and hurtful to imply that any one would "choose" to remain sick in order to get attention. I'm sorry if this offends anyone, but it's something I feel strongly about. The purpose of a support group is to offer SUPPORT - NOT TO DENIGRATE people.

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    I am not here to argue with anyone, like I said before...we are all in the same boat, and we are all here for support. I think that for me, choosing to help treat my Lupus through diet has at times been difficult due to the fact that many people do not agree with it. So I think I was just happy to finally read someone else posting about succeeding on it as well, even if they went about it the wrong way. And it hurt me as well to read others saying that she didnt have Lupus, and that she was just here to sell something. It is hard when something finally makes you feel good and other people question what you are doing or percieve it in a negative light.

    We all have a right to stand up for ourselves when we feel offended. I hope that I did not offend anyone, I just wanted to hopefully shed a more positive light on the idea of a recovery diet, since it is something that i believe strongly in. It is not a miracle cure, I do still see my rheumy, i still take plaquinil (although a lowered dose), but I do feel great, and that is all I can hope for any of us, no matter what the methods!

    It is great that we can all come to this forum to express our opinions...even if it ends up in debate. I, and I am sure everyone else, have to deal with being offended all the time with the "..but you dont look sick.." scenario, so we do need to be able come here and talk to each other without being offended. I hope that we can continue to this....thanks,

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    I first want to say that fiorny1 I think you started your post off wording your opinion to all of us the wrong way. There is no harm in stating what works for you and that we may want to reseach it and try it out. But they way you tried to "sell" the vegan diet and juice it made everyone a little uneasy. And when you finally wrote back yesterday and you expressed that all we do is complain and cry about our lupus, was the wrong thing to do. I'm not sure when you were diagnosed with lupus but many of us have had it for years. I myself have had it since I was 11 years old and I am now 27. I have been up and down some hard roads but there are many others on this site who have gone through and are going through a lot worse than me. We need this site to vent our frustrations with this disease to others who understand us. Healthy people with absolutely no health problems have absolutely no idea what it is like to live with this chronic disease. So we need to lean on one another. And to you, it may be a complaint or a cry about their lupus but to me and many others it is just a frustration that they need to put out there that someone can relate to or help them feel better. Depression comes along with this disease for many and we need to not be judgemental. You surely had no problem telling all of us the problems you went through. Noone said anything about you being a complainer. I am happy for you that this diet and juice have worked so well to make you healthy. We all wish you nothing but good health. But please remember not every medication works the same for each person and neither does every diet. And God does help those that help themselves as you quoted from the Bible. But you don't have to start a new diet to have God help you. Prayer to Him is just as important. He has helped me through every step of my life. And I pray He will continue to keep ALL of us healthy.
    Diagnosed in 1990 at age 11.
    Trust in the Lord with all of your heart!

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    Ok...Fiorny1.
    You have broken one of my strict rules on this forum...attacking our members. You requested that you not be judged, however, in that same post, you handed down you judgments on everyone else in this site.
    I wish you the best in your quest for good health and we will continue on our quest for good health.

    Saysusie

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    Default Re: do the research

    Quote Originally Posted by Fiorny1
    I will not debate on people's opinion...just for everyone to know, I don't want to be known as a person who is going to sit on this blog and complain and cry about my lupus...some people like to stay sick because of the attention they get..but for those people out there that are severely suffering from the pain and the lupus has dibilitiated them..go to my links and also research other links, educated yourself Help Yourself..like the bible says god helps those who helps yourself!

    So don't give me your opinions, Lupus almost killed me 3 times...and I gotten so much better from just eating healthy, which means whole wheat, soy products, non-dairy and no meat, I went to a certified nutrionist and she as a educated professional knew what kind of diet lifstyle I was talking about and was the only doctor that agreed with me that this may improve my health!
    Besides poeple always come up to me now and they what have I been doing to look so good, especially those poeple closest to me that know what I have been through. So I must inform my experiences..cause I know it can help someone out there who severely suffereing...

    I am positive person and with Lupus you have to stay positive! So please do not give me your opnions ..it sounds to me you are not really suffering...by your response it sounds like you don't know what your talking about but just criticizing me for what..to give some notion of hope..you have educate yourself with this disease cause the Dr's can give you the run around!

    educate yourself first then give your educated opinions!!!


    Uh excuse me..y are u jumping on the defensive side?? FYI: Everyone blogging here has their own opinions about EVERYTHING..so if you can't take criticism then y are you here?!

    We are all here to learn from each other..not get ticked off b/c someone isn't agreeing with you on what treatment works for you.

    I'm not one of those people that expect everyone to give me sympathy JUST b/c I have Lupus...I don't want sympathy. And for your info I am a very positive person..I mean geez, you have to be if you expect to beat the odds with living with this disease.

    So in regards to ure comment..I'm not passing judgement on what works for you...I think you misunderstand the comments that ppl leave about what u posted. If what works for you is helping you in ure health then I think thats awesome..great job..but like I said in my previous post, it doesn't always work for everyone living with this disease. Just try keeping an open mind

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