Ben's Friends Guidelines Reminder & Additional Issues of Concern

General
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Hi Everyone,

This is a wonderful Forum with incredible Moderators and Members. Let's work together to make it even better.

I know it's easy to get caught up in emotional issues but we have to remember Ben's Friends Guidelines.

They protect us all and are found on the Main Page.

Let's Keep it Nice & Clean
1. No Spam
2. No Personal attacks
3. No Offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos)
4. No Profanity, sexual references and illegal activity subject matter are not allowed in the Chat Room.
5. Specific doctor or hospital names mentioned in a negative context, for legal reasons.
Specific doctor or hospital names in a positive context are welcome.
Thanks for your cooperation.

The main one we have issues with on Forums is:

#5

Specific doctor or hospital names mentioned in a negative context, for legal reasons.
This not only protects Ben's Friends but Members from unwanted lawsuits.
I totally understand we all have negative experiences with Medical Providers and Facilities. You can still discuss the situation just please not by using names.
We also have had an issue on another Forum about Members feeling Bullied, so lets be respectful of all Members and agree to disagree.
Let's keep Natural Healing tips & recommendations on the Natural Healing Group. We have had Member complaints that some Members feel uncomfortable with some of the Natural Healing Discussions for various reasons.
I actually started the first Natural Healing Group and it is so successful, we added it to every Ben's Friends Forum. It is an excellent venue to share and discuss information and tips.
Thanks,
Tracy

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This is the Disclaimer for the Natural Healing Group.

Disclaimer:

As always, we recommend that you follow the treatment recommendations of
your doctor. But if you have found safe, natural remedies that offer relief for your symptoms, you are welcome to discuss them here.

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I hope that everyone abides by the no spamming rule and only posts relevant information for each forum. As users, we don't have the time to wade through spam and marketing by specific groups. Patients sign up for specific forums, for information and support about a specific illness.

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I also understood that this is not a forum to be used by representatives of Companies, Services, Doctors or hospitals to advertise.

5

I get you dislike the Cleveland Clinic Frances.

Its a shame you missed the most recent educational event. you would have learned a great deal about the connection of PsA and Vascular disease. It was great conference. The increased rates of occlusive vascular disease with PsA patients is very concerning, and one of the major reasons we have a shorter life expectancy.

This dying thing from occlusive vascular disease can be avoided if you know what to look for and understand it can be treated. I realize you probably didn't know what vascular disease and its connection to PsA is , but to carry the ignorance and rant into several threads and call out the one of the founders group members (tracy) for passing on an educational opportunity is just plain foolish. Put another way - this is her playhouse.

Of course there is a promotional aspect to any group presenting an educational event. The Psoriasis Association and Arthritis association events you promote are no different. Everyone has bills to pay.

I'm sorry that your public ranting resulted in being called out publicly. If you have question about something ask

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Frances,

Ben's Friends does not make one cent from any Facility or Medical Provider. This is an educational service only. The web chats will continue to be posted. I am sorry they offend you but have faith you can rise above your personal issues to understand the positive educational opportunity all Members receive. This is not Spam. Please try and focus on the positives of everyone on this Forum.This is a really great Group.I have also found with my illnesses if you hold on to anger and negativity it makes your physical and mental health much worse. I want everyone to be as healthy as possible, especially you Frances. I honestly believe you are a good person that misunderstood not only who I am but the purpose of the Health Chats. I hope you find peace while you are in the middle of your physical illness torment. That may sound like an absurd comment or that I don't understand. I more than understand. My uncle died from PSA complications. I have been seriously ill since 2001 and not only faced death multiple times but live through daily chronic pain that never gets below an 8 with pain mgmt and the current headache I have started the beginning of May. The headaches are from increased CSF pressure. So please do not think I am just a healthy person trying to offer misguided advice or make money. That is the farthest from the truth. I truly care about every member and want the best for each one.

Frances said:

I also understood that this is not a forum to be used by representatives of Companies, Services, Doctors or hospitals to advertise.

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So you don't work for the Cleveland Clinic?

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She works for Bens Friends and is a sponsor of this forum. She would be the sheriff. I realize you don't want advice so ignore it. But attacking Tacy in two seperate threads is not the best idea. I was hoping I made that clear. Apparently I didn't So this time I will be blunt. You have had several posts removed today can you guess whats next??? She is here because I asked her to be.

Frances said:

So you don't work for the Cleveland Clinic?

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Tntlamb I am guessing you are the person in charge around here? May I ask WHY you posted this? To me you sound demeaning and I may be a newbie around here but, I really didn't appreciate the things you said in this post. Please correct me if I am wrong but, are we not all here for suggestions?? I may not have been around this group long enough to know who has tried what and that is why I would make suggestions such as Glucosamine Sulfate but, don't belittle people like me as if we do not know what PsA is... I seriously don't think that negative comments is the answer. Educate me and enlighten me but, talk to me and everyone else with respect please.

"Permalink Reply by tntlamb on August 2, 2013 at 5:30pm

Well cat woman. I bet you were wondering when I would come on with a "get over it and get on with it speech." (Your "be gentle" was a clue) Well don't worry I'm not. We all have pain that waxes and wanes. I get it. Thats not what you have got. You have a genuine flair not and increase in owie factor. I know you fight hard every day and win most. Something is amiss and a call to the doctor is in order. Were it me I'd ask for a three day (no more) predi burst, but thats me.

I haven't been around a lot lately but could someone tell me when this board switched from supportive, helpful, and informative to the inane crap we get from our uninformed neighbors who don't know PsA from a hangnail. Trust me, capiscan tea is NOT going to help one through a flare. Diet advice is NOT helpful most of the time but especially during a big flare. Its hard not to wish a real flare on someone giving it - a real flare is the kind you end up with joint replacement surgery)

FWIW- NO one taking a DMarD or BIOLOGICAL should ever eat raw (unpasteurized) honey for the exact same reasons pediatricians say to NEVER give it to children under year or so. The naturally occuring bacteria in it is potentially dangerous to weakened or underdeveloped immune systems."




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Where is the Natural Healing Tips & Recommendations discussions? When I click on discussions at the top it only gives me these two categories:

upload.jpg763×394 31.8 KB

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And still you don't get it. There is a tradition of not hijackking threads especially on support forum. The original poster (a dear friend and AP-RN asked for some suggestions of where to go and what to research based on some lab results indicitive of at lesst a half dozen comorbid disease with PsA at least 3 of which are fatal in all cases and the fourth not fatal with a liverr transplant. The poster was well aware everyone would not understand so asked please not to give her any diet and or naturpathic suggestions. Cutting out tomatoes will not cure autoimmune hepatits or lupus or MS? So what did she get? 38 diet suggestions and 2 posts suggesting she was over reacting and should quit having so many blood tests. The only mistake I made was allowing the posts to remain (another mod got rid of some) and thinking that as most of us have had some neighbor or coworker (thats the bolded part) minimize their disease based on the fact their granmother hsd arthritis and did just fine. Not to mention their coworker cured himself with tumeric would understand, that what they were telling this lady was on the same plane. Considering those complaints lead around here. I was sure some of you would get it. You didn't. Its always helpful to read everything
In a thread before commenting. Sadly instead of reading the thread and realizing it was about a dear lady facing a very seious situation, a couple of you decided it was all about you and how you felt. You should be ashamed of youselves. But instead I am a meany. The mods of this forum have been told to heavily moderate alternative treatment suggestions as result. I am sorry it has to be that way.

You will find those discussions under groups. You will have to join the group. In the meantime I would suggest you all aplolgize to grumpy and offer her support (even if late) Her situation is still not resolved. And BTW ask anybody whos been around for a while, I was being about half funny hoping you would get it. You don't want to see PO'd. Don't offer excuses of I don't know what has been suggested. The OP in that thread made it clear she wasn't interested. It was her thread and her right to do so. Get over it.
SublimeAmiga said:

Tntlamb I am guessing you are the person in charge around here? May I ask WHY you posted this? To me you sound demeaning and I may be a newbie around here but, I really didn't appreciate the things you said in this post. Please correct me if I am wrong but, are we not all here for suggestions?? I may not have been around this group long enough to know who has tried what and that is why I would make suggestions such as Glucosamine Sulfate but, don't belittle people like me as if we do not know what PsA is... I seriously don't think that negative comments is the answer. Educate me and enlighten me but, talk to me and everyone else with respect please.

"Permalink Reply by tntlamb on August 2, 2013 at 5:30pm

Well cat woman. I bet you were wondering when I would come on with a "get over it and get on with it speech." (Your "be gentle" was a clue) Well don't worry I'm not. We all have pain that waxes and wanes. I get it. Thats not what you have got. You have a genuine flair not and increase in owie factor. I know you fight hard every day and win most. Something is amiss and a call to the doctor is in order. Were it me I'd ask for a three day (no more) predi burst, but thats me.

I haven't been around a lot lately but could someone tell me when this board switched from supportive, helpful, and informative to the inane crap we get from our uninformed neighbors who don't know PsA from a hangnail. Trust me, capiscan tea is NOT going to help one through a flare. Diet advice is NOT helpful most of the time but especially during a big flare. Its hard not to wish a real flare on someone giving it - a real flare is the kind you end up with joint replacement surgery)

FWIW- NO one taking a DMarD or BIOLOGICAL should ever eat raw (unpasteurized) honey for the exact same reasons pediatricians say to NEVER give it to children under year or so. The naturally occuring bacteria in it is potentially dangerous to weakened or underdeveloped immune systems."




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Thumbs up! Thanks.

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Agree no one knows what i flare up is like until they experiance it for themselfs.

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With all due respect, It's hard to agree that this group is completely supportive when there are members that think they have the right to talk to others harshly, as if their opinion is the golden rule. It truly is a shame because there are not many places for people to go for support. And to be honest, I was hoping this place was one of them. I hear you loud and clear SublimeAmiga and completely agree!!

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This has been on ongoing problem.

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Living with PsA support group needs to be more supportive, I think. We cannot see it, but I am sure many of the people who seek this site may be in tears looking for someTLC and someone who understands the nightmare they (and we) are facing. Many times, a kind word, a "I understand what you say" may soothe a troubled spirit. Information is out there, and it may be easy to find. A shoulder to cry on and an ear to listen is not. I am sure we can point them in the right direction if they are misinformed using tact, while at the same time thanking them for pointing out a good and valid question, not making them feel dumb because they asked.

Newly diagnosed people should be felt welcomed and not shut them because they are asking the same questions/same forums extensively discussed. Should there be a moderator that deals only with newbies in a patiently manner?

In essence, this site has some room for improvement. Listening is a virtue.

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It's only been a few days but, since I have posted in here my concerns I have had SEVERAL new members approach me in a private manner and they ALL say the same thing "I was afraid to post because I didn't want to suffer ridicule!" They had witnessed VERBAL ABUSE and PUNISHMENT. What people don't know is that for punishment all my posts were deleted after the first one and I was not able to reply to anyone for that day, I am guessing 24 hours. I am not the only one this has happened to. There are a lot of GREAT members in this group that have come to me and been very nice and supportive. I stayed for that reason and I would like to be able to learn more about PsA.

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I've been on this site for about a year now. Like many other new people, I've thrown out some interesting/oddball ideas. I have never felt scolded or abused, and the responses that I have received have been evidence based.

I think that we need to remember that many of us come here in a delicate condition, without being particularly knowledgeable. I work in an online environment, so am well aware of how easily things can be misunderstood. That said, that goes for all sides. Rather than laying blame, keep in mind that it's harder to understand tone online, and give people the benefit of the doubt. Reread your posts. . Could somebody take something the wrong way? Joking can easily be misconstrued as being mean. I pretty much never joke around online, unless it's disgustingly obvious that this is my intention.

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I agree this is a problem - a very real problem here.

SublimeAmiga said:

It's only been a few days but, since I have posted in here my concerns I have had SEVERAL new members approach me in a private manner and they ALL say the same thing "I was afraid to post because I didn't want to suffer ridicule!" They had witnessed VERBAL ABUSE and PUNISHMENT. What people don't know is that for punishment all my posts were deleted after the first one and I was not able to reply to anyone for that day, I am guessing 24 hours. I am not the only one this has happened to. There are a lot of GREAT members in this group that have come to me and been very nice and supportive. I stayed for that reason and I would like to be able to learn more about PsA.

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I agree Gelita

Gelita said:

Living with PsA support group needs to be more supportive, I think. We cannot see it, but I am sure many of the people who seek this site may be in tears looking for someTLC and someone who understands the nightmare they (and we) are facing. Many times, a kind word, a "I understand what you say" may soothe a troubled spirit. Information is out there, and it may be easy to find. A shoulder to cry on and an ear to listen is not. I am sure we can point them in the right direction if they are misinformed using tact, while at the same time thanking them for pointing out a good and valid question, not making them feel dumb because they asked.

Newly diagnosed people should be felt welcomed and not shut them because they are asking the same questions/same forums extensively discussed. Should there be a moderator that deals only with newbies in a patiently manner?

In essence, this site has some room for improvement. Listening is a virtue.