How do you cope with cruel comments ... 
sincerelady
16 y
4,109
† Cross †
Hi All,
This is my first post on the board, so forgive me for being long-winded. But here it goes...The last three weeks seemed to be better for me because I was doing an Antibiotic therapy treatment to kill off H. Pylori bacteria that were most likely causing the periodic severe stomach pains I was experiencing and I think that the treatment may have inadvertently helped reduce the odor-causing bacteria in my gut.
During the two-week period I was taking a standard liquid probiotic (by America's Health) because I knew the treatment would kill both good and bad bacteria and everything seemed to be better, not completely gone, but I sensed it was better. Then the two week treatment ended, I decided to try Culturelle largely because it didn't have to be refrigerated, but I think the odor simply came back full force.
I've heard nasty comments and reactions from passersby and I wanted to reach out to you all to hear how you mentally deal with comments from complete strangers (in my case) that are just so cruel. Please share your thoughts. Thanks very much!.
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- Re: How do you cope with cruel comme... mpdela
16 y
4,155
This is a reply to # 1,241,166
Hi sincerelady,
This is a very complex question you ask. There are different levels that need to be addressed when addressing this problem, systematic social behavior, the perpetrator of insults, and the sufferer’s psychosocial needs are some.
To address the 1st issue, systematic social behavior, I believe the focus should be on raising social awareness of the existence of a metabolic condition involving the malfunctioning of the liver resulting in body odor. When you first began to feel body odor, did you know that such a thing existed? Well, neither does the rest of society, including most in the medical field.
You may want to read my previous post here in CureZone http://curezone.com/forums/fm.asp?i=1240444 regarding an organized effort to raise social awareness that is taking place at the present time for you to join us. This whole effort is resulting in a great deal of psychological healing for the sufferers who choose to get involved, and all sufferers are invited to participate.
The 2nd aspect that needs to be considered when you become a victim of discrimination as a result of BO is the question of, ‘who is the perpetrator, or the person insulting you?’ Do you even like this person? Sometimes we are so preoccupied with wanting to be loved and accepted by others, that we don’t stop to think whether we even like this person. Do you think this person is worth your time of day? Only you can make this decision.
A 3rd aspect that you need to consider is your psychological need at that moment. What would be more healing for you at that moment, to express your anger, to express your thoughts, or to ignore it and focus on other more important things in your life? We can chose when and where we want to address this issue and we can set boundaries and limits regarding when and where we let people into our lives and when to keep people out of our lives.
I think it's necessary to realize that we can’t change the world in one encounter, but we can protect ourselves from injury by understanding that we have alternatives regarding how to process each assault internally (in our minds) and externally (in our actions), and that we can ‘choose our battles’ based on the calculated outcome. Sometimes the reward is just to release our anger and our pain by speaking out, and other times we feel better not reacting at all and blocking it all out of our minds.
We need to do activities that help us feel empowered. To the degree that we feel empowered, to that same degree we are not victims. What activities have helped people feel empowered? Sharing our experiences and odor management protocol with each other as we do in these forums. Many sufferers find that participating with other sufferers in organized activities to promote social awareness and scientific research is a very healing process. Participating in these activities creates a sense of camaraderie and a support system that helps us cope with the physical, social, and emotional challenges this condition brings.
María
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- Re: How do you cope with cruel comme... #17924
16 y
3,911
This is a reply to # 1,241,195Hi
I hope you don't feel too bad. I usually feel bad when somebody makes a comment. Really bad, but then try to bounce back really quickly.
If you think of it as truthful feedback you can see a strangers comment in a positive light. Feeback is really useful because you can look to see if something you ate or did during those few days was wrong, causing the odor to be worse.
Secondly they can sometimes let you know what you smell of. Most people we ask for help tell us we don't smell and don't have a problem, -friends and family just being kind. When a stranger makes a comment you are getting the truth. It may hurt but leads you closer to knowing what is wrong, what you smell of and perhaps you are more motivated to look for a cure or plan a new diet.
What do you think made the odor come back strongly? As it does seem to go in waves for most of us. I have taken many strong Antibiotics and wonder if they just kill all the good bacteria. I have loaded up on strong probiotics and got a comment at that time so thought maybe good bacteria can smell just as bad. (they all break down food so could be) Another theory that people have is that systemic Candida is causing the odor. Most Antibiotics are a fungus mold like penicillin. They could aggravate an odor problem if it is caused by Candida or mold toxins. I don't think everyone has systemic candida though.
My theory at the moment is that our livers are not able to detoxify all the toxins in the body therefore what can't be processed by the kidneys and excreted in the urine comes out through the skin. This would also make sense for TMAU where the liver doesn't detoxify trymethl. Perhaps the liver also doesn't detoxify sulphur, for those that have a rotten eggs sulphur odor. Or sometimes it is both and can't detoxify many other substances causing the odor to change and become fecal, garbage, eggy sulphurous, fishy, depending on each day and what you have eaten that day. On good days it could just be a normal B.O smell or a slight breath or foot odor. I know many people say their odor changes and sometimes they don't have it at all. That is true for me. Some days it causes strangers to comment, we have all been there.
I am currently looking into everything that helps the liver detoxify and especially the sulfation pathway.
Take this comment as a blessing in disguise that has motivated you into being more aware of diet and possible causes and their cures. Find the one that makes most sense to you and your body. We are all here to help each other. Let us know if you have any thoughts on what you think is causing your odor.
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- Re: How do you cope with cruel comme... badattitude
16 y
3,556
This is a reply to # 1,241,646Maria and 17,
Those are both extremely helpful responses. I've copied and pasted both.
In addition to this problem I'm bipolar. At this point I'm pretty much a hermit so the comments come mostly from family unfortunately. When one comes after trying SOOOO hard for so long to make huge changes then it's so disheartening. I just don't want to do this anymore and I feel beat the heck up. I came right here because it has helped more than anything finding others who know how awful it is to try to live like this.
I actually finally got the guts to talk to a second doctor telling him what I'd heard on this board. I copied one small paragraph out to show to him and carried it with me. NOTHING! He'd never heard of it.
I just don't want to live like this anymore, who would?- Re: How do you cope with cruel comme... mpdela
16 y
4,181
This is a reply to # 1,248,186
Hi badattitude,
I know that this odor condition is difficult for everyone, but to also have a bipolar condition makes it even more difficult. I'm sorry it can get as unbearable for you as you're saying it is for you right now.
Are you taking medication for your psychological condition? If so, is your doctor checking your liver periodically? How does this medication affect your odor, if at all?
Being in a state of depression makes this condition almost intolerable and unmanageable emotionally, and that’s where you can benefit from meds. There are so many positive turns for the better taking place lately that I would hate for you to give up at this time. I don’t know if you’ve visited the blog that my blog partner and I created only 3 months ago in an effort to unite all the forums to work toward promoting social awareness, research, and to find a cure, http://mpdela.blogspot.com/ .
Another very important aspect of this effort is to also offer support to each other by sharing management protocols that work for some. Slowly but surely, people are minimizing their odor, and some claim to be odor-free most of the time. Have you ever joined our free (in the
U.S. ) conference calls? We’re having our next one tomorrow at 2:00p.m., and you’re welcomed to talk or to just listen in (see my blog for details). Please email me at [email protected] and we can arrange to talk for a while on the phone, or to chat in AIM or MSN Messenger, or wherever you prefer. I think there is much more hope for a better life with this odor condition than you realize. So much is taking place in this movement, and I would love to discuss it with you. This would be a terrible time for you to give up, when things are looking up. Please reach out and email me. We can communicate at whatever pace you like with whichever means of communication you would prefer.
Hoping to hear from you soon,
María
- Re: How do you cope with cruel comme... mpdela
16 y
4,181
- Re: How do you cope with cruel comme... badattitude
16 y
3,556
- Re: How do you cope with cruel comme... #17924
16 y
3,911
- Re: How do you cope with cruel comme... mpdela
16 y
4,155
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