Member and Mods: discussion & debate

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014


    Whew computer problems.

     

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014

    "This happens in the collective. It affects everyone. If it isn't discussed in the open, how can the members know that censorship is occurring. If one is censored, all are censored." quote sas from above post.

    I was censored. I was, also,  told there isn't a rule re: number of post .  Mods--We think that 1-3 posts is truly maximum. Eighteen should not be necessary for you to get the information out there " . But there is no rule. It was there choice to delete my post b/c they decided I was spamming.

    My post went to only threads that were usual posting threads. Some were frequent. Some less frequent. Spamming is indiscriminate posting. Mine were not.  The mods deletions were not based on a rule. It was based on discretion.

    Why is this dangerous? Anything at any time, can be censored for whatever reason the Mods want too.

    Breastcancer.org is a 501c-3 approved charitable organization.  The courts have upheld that 503c-1 in regard the the Freedom of Speech,   "The Free Speech Clause provides such expansive protection that the courts have noted only a few narrowly drawn categories of speech not protected. These include “fighting words” (i.e.,close-quarter communications that would immediately provoke a fight), “obscenity” (i.e., depictions of hard-core sexual acts), child pornography, and words that create a “clear and present danger” to public safety (e.g., falsely shouting “Fire!” in a crowded theater).22  All other speech – and especially religious speech – is protected." None of these were breached in any of my communications.

     Mission statement(?)"Breastcancer.org is a nonprofit organization dedicated to providing the most reliable, complete, and up-to-date information about breast cancer and breast health as well as an active and supportive online community. As a nonprofit, Breastcancer.org relies on donations to ensure that we can provide our valued resources free of charge. Please help us continue to provide these resources to others by making a donation at any level to Breastcancer.org."

    If this is BCO's mission statement, my action to disseminate information ,(in)"the most reliable, complete, and up-to-date information about breast cancer and breast health ", meets their mission

    This is from the Terms of Use: "Breastcancer.org disclaims any duty but reserves the right to monitor online communications and to edit, abridge or remove content that Breastcancer.org, in its sole discretion, determines to be harmful, offensive, unlawful or otherwise in violation of these Terms of Use. Breastcancer.org does not guarantee that it will post every message submitted, and reserves the right to disclose any message submitted as necessary to satisfy applicable law, regulation, legal process or governmental request.

    My opinion is that the section negates the law re: free speech by including  "Breastcancer.org, in its sole discretion".  Changes the meaning entirely.  Discretion is arbitrary, it's not bound by rules. I have been told by other members and it was stated in a post above that it's their site -their rules. I assert that  there action in regard to me are questionable by law b/c of the 501c-3 requirement to "expansive protection" within the Free Speech Clause. The language in the Terms of Use makes discussion problematic b/c of the verbiage "in it's sole discretion." Again, the rules of being a 501c-3 approved charitable organization take precedence. If that be true, then the burden on them is to not be arbitrary in their discretion. 

    This is from the Terms of Use, Acceptance of Terms: "Breastcancer.org may change these Terms of Use at any time. The changes will appear in these Terms of Use, and your use of the Site after any changes have been posted will constitute your agreement to the modified Terms of Use. Therefore, you should read these Terms of Use each time you access the Web Site, before you begin using it."

    Broad statement that is scary. One day something's okay, next day it isn't. No clue why the language was accepted in the original request for 501c-3 approval.

    Right now there is heated debate on "Baubles for Boobs".  The members are freely stating their opinions to the use of the term. I support their right to do so. I stated my opinion in a post regarding a beneficial organization, and how to use Social Workers to find money. I then disseminated to areas of best viewing within my scope. I was deleted. How we members approached an area of concern is different. The outcome was different too.

    For those that believe the PM's shouldn't have been made known. Freedom of speech. Take the time to read a generic Sunshine Law.

    There have been few postings, but many viewings 800 in 54 hours. What number I account for I don't know. Now there could be many reasons for no interaction.

    1. this issue is of no concern

    2. the Mods do not want to respond---reason unknown

    3. Viewers think I'm wrong, but don't want to get involved

    4. viewers think I'm right , but don't want to get involved.

    5. fear of retribution

    sassy

  • Beesie
    Beesie Member Posts: 12,240
    edited May 2014
  • wrenn
    wrenn Member Posts: 2,707
    edited May 2014

    i think you need to get your brakes checked

  • Teka
    Teka Member Posts: 10,052
    edited May 2014

    *deleting prior public posts*

    Not going down the rabbit hole.

    Staying in the sunshine!


  • 208sandy
    208sandy Member Posts: 2,610
    edited May 2014
  • FireKracker
    FireKracker Member Posts: 8,046
    edited May 2014
  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014


    Wrenn  I'm basically done. This will go no where, but I've said what I wanted to say. I've helped thousands of people with info. here and the real world.

    What the Mods assume is everyone is good at searching. I can search, and I can teach. Two strengths. Can't change a tire. Does it say anything about me? Nope.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2014
  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014
  • LilacBlue
    LilacBlue Member Posts: 1,636
    edited May 2014

    I know of no public discussion board that would allow spamming, particularly when moderated.  I understand  altruistic behavior and motives, yet netiquette in this instance, takes precedent over self will.

     

  • mema4
    mema4 Member Posts: 574
    edited May 2014

     During my appointment with my MO last week, I was joking with his staff they should enter the Pink Piggies contest with BCO. I thought it would be fun to have them get him to join them as he is quite good natured. One of the patients walking in said to not bother, that she heard it was crazy now, meaning us!. I had seen a few things I thought was crazy but didn't think it had gotten that bad. I didn't know what was going on.  So tonight I started searching to see what all the talk was about, not only because of what she said, but because I began to think about all those little things that had bugged me when I read them.  When I saw this title on Active Topics, it sounded familiar to something that was mentioned elsewhere.

     I've seen two areas now where it seems some have lost the vision of what I think BCO originally started out to be.  I knew of one thread last week that was one complaint after another about this site, things like fighting, disrespect, all those words we use to describe adult situations that get out of hand. Another way of saying a bully is a bully is a bully.  I came to this site for one thing and one thing only and that is to talk about breast cancer...selfishly, my breast cancer. I needed support, help, resources and a place to belong. I have found a lot of things I didn't care about, like recipes, vacations, computers, some high school type cliques and absolutely nothing to do with what I needed. But, I also found some ladies that helped with breast cancer issues, women that didn't try to scare me to death, women laid the truth on the line and helped me get the fear out.  Everyone has different things they want to talk about so you just search till you find a little here and then a little there. So, I just moved when I landed somewhere I didn't like. No big deal.

    What surprises me most, is that there are people with BC that like to fight with each other. I guess I always thought this disease had to bring us all together. Not so. People fight here about the darndest things...the color pink...ribbons...whether boob is appropriate or not...foobs...runs or walks or any kind of fundraising...research....doesn't matter.  I like pink and I'll walk for even a penny if it helps fund a grant or research; I walk wearing purple because my nephew has epilepsy and they need every penny they can get; I wish we would walk for organ donation awareness (green) but no such luck. Bullying is blue...schools have started to display those ribbons according to my teenage grandson. All cancers, every disease you can think of seems to have it's own color. I have tremors so I'm sure their color is under Neurology.  My lovely father-in-law is dying of lung cancer, has only 2 months to live. His color would be white. My husband has a tiny white ribbon on his lapel this week. It's just a piece of fabric but for some it is bitter and for others it is hope, that's all, just a bit of fabric. But even the fact that a person would recognize any disease with a ribbon causes dissent. Or so I've learned.

    I've seen all of you here on different threads and you've seen me. It has never, ever been my way to anger or blow up a situation. I learned that humbling a long time ago, when I had my first seizure and began my current state of trembling!  Facing my cancer, I found facing my own mortality humbled me. Everything doesn't have to be so perfect. I don't have to be perfect and no one else around me has to be and that includes this site. All the survivors, the moderators, all are people raising their hands like children in a classroom does when they want to be called on for an answer!  It's so cute when that happens (I used to teach). You stretch your arm and wave, saying pick me, pick me, I think I know the answer, I can help!  You don't have to answer, but  did that desire to keep that type of desire going just disappear recently or was it never here? 178K members and I'm not sure of this site's reputation.

    With the help of some of my closest friends, we are putting together baskets for women in our local hospital that has undergone breast surgery. Since a BC survivor was collecting red and pink nail polish we merged our ideas to make our basket more fun. Oh yes, she picked those colors because chemo makes some  nail beds turn yellow. I don't know because I am fortunate enough to not have had chemo. She felt reds/pinks would cover better. Hopefully, we will not offend anyone and I have learned to not overdo any color.   Maybe providing information for newbies to find this site would have been a good idea, maybe not.

    Thank you for allowing me to say my piece. I've not written this much on this site before and I hope it is taken as it is given, with love, concern and hope that this site will have a spirit that shines a beacon of light giving more help than harm. I'll  figure out what to do and where I belong in my journey, but I may have to change my fake name on here!  :)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2014

    Sas, thanks so much for the info on needymeds. I for one have to say that I have learned more from you than I have any publication or doctor chat. Your heart is in the right place and you do a lot of good. And when I need a laugh, you never let me down. So whether it's in a forum, blog or email, I always value you as an adviser and a friend. I'm adding this to my favorites.

  • mmtagirl
    mmtagirl Member Posts: 509
    edited May 2014

    Lostboob, I couldn't agree with you more.  Well said. Come back and join us on January sisters.  We haven't seen you in awhile. 

    As my husband tells me, perfect doesn't have to be perfect. My belief is the mods and everyone on this site is doing the best they can with good intentions.  I am sure some mistakes are made.  Let it go!

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014

    RO Thanks girlfriend, we've been through some rough times together :) Thanks for your opinion :) 

    Lostboob, watch it your heart is showing :)  LB a name change is easy. Go to your profile page click on edit by user name type a new name in then save. I changed mine when our material started showing up on Fb in the early days of OMG They Found A Cure For Stupid. But did it so fast I wasn't very creative. Just me and my dog :)

    mmta :)

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014

    LilacI wasn't spamming by the real definition. Actually, here there is no definition. It's what anyone thinks it is. Even me.  Hmm discretionary :). Here we chose our favorite threads. My sending of the info was to my friends and chosen threads .

    On the web. spamming is indiscriminate sending of junk mail to unknown thousands.

    Even when I posted in early feb. re the CYP system. I used the word spam. Was it a correct use of the term  Debatable.  

     

  • Teka
    Teka Member Posts: 10,052
    edited May 2014

    Emily is fighting with breast cancer.

    Staying in the sunshine!

    https://scontent-a-iad.xx.fbcdn.net/hphotos-prn2/t1.0-9/10369214_728141167245228_4580830211300530943_n.jpg



  • LilacBlue
    LilacBlue Member Posts: 1,636
    edited May 2014

    Au contraire sas-schatzi, this discussion board lives and breathes as part of the www.  Netiquette is very much of what goes on here.  Believe it or not, I have tracked the entrenched position you have repeatedly defended.  You and they... I get it.  Count me in as one of the unknown thousands.

  • Teka
    Teka Member Posts: 10,052
    edited May 2014

    *NO* they, we're individual members on the threads!

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited May 2014

    Self-will run riot

    #3

  • GeorgiaRai
    GeorgiaRai Member Posts: 175
    edited May 2014

    I don't post very often on BCO because I usually find if I read enough responses, someone will say (or has already said) exactly what I'm thinking.  This time, it was lostboob - what a great post and I agree with so much of what you said.  Thanks for saying it so clearly and eloquently.

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014

    Hi doctoring , disastering, and sleepless :)

    Here's one of those spamming things. This was done within my sphere :)

    I know I put this in here somewhere, but just in case. It's a repost of something I wrote for someone else :) sassy

    In case you don't have this link. It's a drug site that is great even though it was done by the government. Why is it GREAT! 1. after putting the drug name in the search box and the list is pulled up, the first drug manufacturer is the one that originated the drug. 2. importance---all the pre-approval clinical trial documentation is there 3. all post marketing data is there 4. hyperlinks throughout to connect within the report for easy referencing between topics.

    http://dailymed.nlm.nih.gov/dailymed/about.cfm?CFI...

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014

    Cowgirl Hi missed your help on the Port thread------come-on back. I can't keep up like I used to, and it needs more frequent bumping:)

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014


    Here's another thing I spammed within my sphere

    Feb 24, 2014 10:23AM sas-schatzi wrote:

    Hi reposting this on some threads, may be old news to some, but to good of info not to pass this on,Sassy

    Cam00205Bluebird144…NJJoined: Apr 2013Posts: 393

    13 hours agoBluebird144 wrote:

    Knitted Knockers Charities is a non-profit that exists to provide free patterns for knitters and crocheters to be able to make knockers and help mastectomy patients get freeKnitted Knockers made by volunteers.

    I love my Knitted Knockers! They are light and soft and warm. Unlike my silicone prosthetic which is heavy and cold when first worn, then it later causes me to sweat.

    I wear my knitted knockers inside a regular bra or tucked in the pocket of a mastectomy bra. They are beautiful, and a godsend to those of us with an uneven mastectomy scar.

    image

    Knitted knockers website:

    http://www.knittedknockers.info/

     

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014

    This is another thing I spammed

    Folks you are here seeking info. I'm posting a link to a thread that may make some "feel uncomfortable" , but it's important because(b/c). It's a discussion of "Talk of death and dying issues"

    http://community.breastcancer.org/forum/8/topic/770023?page=1

    Why is this important if you are just being diagnosed. Well none of us "know the hour , or time of our demise". Taking a look at our finances early on prevents chaos, whether or not we pass from cancer or falling down a set of steps.  Plus, there are many wonderful suggestions regarding preparing things for your children--young or adult that can make you happy by knowing that you can be doing things now ie. scrapbooks, talks, videos on and on. That even if cancer wasn't in the scenario, you would want to do or may want to do for your kids. When reading as in all threads skip what you don't want to read.

    It's listed under the Stage IV mets forum, but again the info is universal.


     

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014


    This was not spammed, but shows intent of recognizing the common problem :) sassy

    sas-schatzi…     FLJoined: May 2009Posts: 10,014  

    Post a reply         

    Aug 18, 2012 02:37AM, edited a few seconds ago    by sas-schatzi

    -It is not uncommon, when people put in an uncommon situation, to act uncommonly. Now I've never said that before, but let's analyse it. It is "not uncommon", many people do it.

    The "uncommon situation" I have never experienced it before. Other phrases used, "it's out of my frame of reference", "I'm clueless". All of these mean, I don't know anything about the problem. I must seek someone that does. I have a plumbing problem, I call a plumber. I have an electrical problem, I call an electrician. I have a, physical problem, I call a doctor. In each situation, I am trusting that the person that I am calling, will correct my problem to the level of working order, before the problem existed.

    Here on BCO our problem started with Breast cancer. This is our common beginning.  Then because of the initial problem, other problems may and do occur.

    From our common beginning, uncommon things occur. In these uncommon situations, I am trusting that the Doctor that I am going to will give me the best information. Doctors refer me to other doctors in specialty areas, when the problem presented to them, is uncommon to their knowledge base. I then go to the specialty doc trusting that their knowledge is the best up to date information available. That what they recommend, will correct my problem, do me no harm, and bring me back to the level of health, I was before the problem occurred

    . Why do people "act uncommonly"?  Applying this to our common problem of BC, if I seek information and treatment intervention, and I perceive the information given or the treatment rendered, has caused a problem, I begin to lose trust. When trust is lost or questioned. My action changes. I then seek new information. Until I have enough new information to allow me to trust again. My action may appear to be an uncommon response, to those that have more knowledge than I.

    Here on BCO, I come seeking new information to validate what the information or treatment, I am receiving is correct. When a problem is posted by a member, other members respond.  Until I can trust again that my information and treatment is correct, I will seek answers. I will pick and chose the answers that resolve my question.

    A reminder that BCO management team monitors areas of concern of members. Out of this monitoring, many artcles have been added to the educational material on the main board. Reading the articles on the main board should be a first step. Then coming to the discussion board for further discussion of your problem is helpful. The interaction with others that have a common experiences, validates what we know. We then can begin to trust again.

    Common Law copyright allrights reserved. Aug 2012

     

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014


    Here is another thing I spammed in my sphere

    Apr 27, 2013 08:34AM, edited  Jul  6, 2013 10:02PM    by sas-schatzi

    If you get the AARP magazine this months issue dated may 2013,  there is a story about the safest hospitals and what safety procedures that are in place that cause them to be safe. The article cites that 180,000 people die a year due to medical/surgical errors AND 400,000 drug errors are made a year. The articles states that these numbers are likely higher b/c these are the ones that are reported. I agree. I know you've seen where I've said on the threads "Sorry etc for too much info, just want too make you(BCO memebers) safer". Guess I should stop apologizing for writing stuff in this regard. These numbers are higher then the last set of numbers that I had known. The problem is either getting worse OR there is better reporting. I'll go with better reporting.

    The article cited that one of the safety items was having an ICU Intensivist. It cited that only 35% of hospitals had Intensivist. I was dismayed at this percentage since residencies for Critical Care Medicine have been available since the 1980's. Truly thought by now that the "industry" would have been driven by demand for better care that this statistic would be 70 to 80%. ICU medicine is absolutely in need of a specially trained doc. Just as in all subspecialties of the American Medical Association(AMA), the knowledge and skills of this subspecialty are critical to survival when a patient is at this level of need.

     My hope is those seeing this will locate a copy of the AARP article. Read it throroughly. Then question there local hospitals on each item. Based on what they elicit re:safety of each facility, they can choose the safest hospital near them for care. It can mean the difference between life and death, and or avoidable complications. Spreading the word to others regarding this may save lives.

     

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014

    This is my spam outside of my sphere.

    Feb 25, 2014 07:33AM sas-schatzi wrote:

    I've spammed this around the boards, hopefully, the mods will get that now is the time to get our MO's and PCP's to take our care seriously by protecting us from injury by drugs and or drugs that aren't working for us because of our genetics.

    ----------------------------------------------------------

    Hi Folks, I haven't posted here before, but recently found out some info that has pissed me off in re: the drugs given to me during treatment for BC. I was almost killed  with my one and only chemo. Taxotere was the culprit. I "failed" all three AI's b/c of s.e.'s. All of this could have been avoided had my MO paid attention to the Cytochrome450 genetic testing. Of the six genes tested, I have abnormalities in three. All are major players in the drugs I was given. Had I been tested, it would have been known. The drug choice and /or dosage modifications could have been made

    Rather than rewrite the details here The link below will take you to a thread that has the posts that I have written in the last few days.

    I'm not trying to sell Genelex. Other laboratories are doing genetic testing. But Genelex is the only company right now that provides the application of the genetic results to the drugs we are taking. Other companies, I'm sure are trying to build the same business model. It's the future of drug administration.

    Why? Patients will no longer except being experimented upon with drugs that can harm them. If the docs won't do this because it's the right thing to do it. Then we have to PUSH them into doing the right thing.

    http://community.breastcancer.org/forum/73/topic/7...


     

  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited May 2014

    Dear BCO members, I have Spammed allot. Why? Because the information I send on to others is evidence based or in the case of the Knockers use based. I'm looking out for what might help you and me.

    The post that was deleted by the mods was a post that was looking out for you. The mistake I made was asking to send it outside my sphere.

    I've been spamming if that is the correct word for several years.

    What's beautiful about this scenario now, is it has generated allot of viewings. Those that didn't have access to the original distribution or spamming, now do.

    If anyone wants to continue discussion on alerting members to the value of sending these types of posts, well continue.

    I have created threads that have generated thousands of responses or viewings. Creating anything is a risk. If you want to nitpick, look first at the body of the work.

    Then tell us about how you have made BCO a better place to be :)

  • FireKracker
    FireKracker Member Posts: 8,046
    edited May 2014

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