It's a non PMR/GCA related blog post... read it, don't read it; like it, don't like it.
It's all good!
rantingsofamadwomanblog.com...
{Please refrain from posting long, in-depth, serious, opinionated, editorial like comments here, as the site moderators/administrators find it difficult to monitor and mange the volume. Please feel free however to send me a "Chat" message, and berate me privately.
The ability to reply to this post has been turned off.
Oh my, mamici, maybe you should have let that one go 😂😍
Hi, Thank you, I appreciate the honest feedback. 👍🏻
Oh , Mamici ,
I do wish you had remembered the saying about not to poke a sleeping bear , especially as that bear had gone back for a nice nap, and not written this rant.
You know , if you read my replies on the original post and our private chat that I am not a person against change or variety.
I said then , I think , that there is room for more variety in everything , more chat , more groups , more information to fit all tastes and styles.
But ,as I pointed out on the original post that you chose to delete , people also have the right to reply , even if that reply disagrees with our point of view.
You say in your rant that our perception is our reality , and in the case of your rant on this incident I have to say that saying really does apply .
I read through the comments , both positive and seemingly negative , that people made about the new FB Page and I read your responses to them too.
Rather than reading diatribes of doom , or comments that were aimed against you, or intended to put you off the new venture , they were just replies of concern about how they hoped a new group would not affect the group on HU or polite explanations of why they felt they could not join.
The replies were not meant to personally attack you or to undermine what you were trying to achieve . They weren't even against change only voicing some people's concern about how they thought this change might change their enjoyment of this forum.
But , unfortunately you missed the truth and saw reality as what you perceived it to be.
We could see that from your replies as the post ran on.
They became more exasperated as the day progressed , despite people's return to your replies to try to reassure you that they did not mean any offense to you personally from their response.
At the end of the day you perceived an attack because you had come up with a good idea but you didn't expect , and were very surprised , that others may not agree with you and want to say so .
Unfortunately , because you chose to delete the post, other people who read your new rant will not be able to judge this with a balanced eye for themselves . For Example, the fact that through the day some members who had originally taken against the idea had actually practised the right to change their minds and decided to join you on FB.
But.....You chose to take down the evidence .
You removed people's right to show their opinion , on what I still believe is a good project , on an open forum.
The people whom read your rant ,and had their say previously , will be unfairly judged , or upset, by the view your rant creates of their comments. Because in reality , those comments were not as bad as you perceived them to be.
People were not against change . On the whole they just expressed the reason the changes you suggested wouldn't work for them . Most importantly , they were concerned about how changes may change the way we get to use the forum we are currently on.
I personally hope that your new group helps lots of people in the way that works for them , just as this one does for those that use it.
I also hope , that you leave this post , your link to the rant, and all of its replies up this time so that people can judge their views on it for themselves.
I know that my reply may be perceived as a personal criticism , it isn't meant to be ,it is more a practical and objective one. To create change we do not have to perceive or create any negative feelings or offence.
I disagree with your opinion of what happened last week and the way you have dealt with it in your rant because of the way I feel it can affect others.
I hope you can accept my opinion , and my genuine good wishes for the new group , and understand that sometimes we all need to agree to differ and remain friends.
Good luck , Bee
" people also have the right to reply , even if that reply disagrees with our point of view." you say , ....remember your own reaction when I hoped the HU forum would stay the same ? Even though many agreed with me, I was met with a : live and let live - and long and heavy argumentation. Not fair. Now you defend the opposite viewpoint..... almost funny.
I am defending the right of us all to give an opinion and have it read.
I did write that to you , and I am sorry if it gave you offence it wasn't meant to , and I take no offence to you disagreeing with me , or pointing it out openly , I am glad you told me so that I could apologise.
My point here is that creating a rant based on a criticism of people on the forum for disagreeing with you when people cannot see the original post , or make judgement for themselves about the opposing views on that post , like your own , is unfair to the people who wrote those opinions in the first place.
It isn't really conducive to maintaining the good feeling and the confidence we have to speak our minds here.
It seems unfair to me to close a post on an point and then attack people afterwards for taking part in it.
Hope you understand , take care , Bee
Yes I understand. Thank you for the apology. I feel much better now.
Again sorry and glad you understand where I'm coming from. Take care
Hi BE, Thank you for your comment.
I’m sorry you’ve experienced such an unnecessary backlash. What is the matter with some people? It’s all happened so quickly, one minute I read an invite to join a new forum you felt would be good and before I’d done anything about it it was cancelled. I get the gyst of why and, without reading any of the comments, feel you did the right thing. Bet you feel like you’ve been run over by a truck! As you say a polite refusal is sufficient but some people are like a dog with a bone. They’re entitled to an opinion but why labour the point to such an extent? You’ve done the best thing so put it behind you now - it’s not worth it and as we say in Yorkshire ‘there’s nowt so queer as folk!’ 💕 xxxx
Thank you T, I appreciate your honest feedback, support and love.
Blame the uncertainty around Brexit maybe. It is certainly a common response to change. I love folk in all their adorable quirkiness. I love you too if I could reach you on your high horse. 🙇♀️🤦♀️💆🏻♀️🙅♀️ Xx
*Ha, spit my tea out*
Nope, my horse is right down in the muck with everyone else's horse. 🤷🏻♀️
🐴 Equine flu I expect. We catch everything going with PMR/GCA. Just don't get verbal diarrhoea - I couldn't do without your wit and courage x
After I hit send I thought it might seem rude but was meant as lighthearted joke.....
It was!!!! OH, sorry.. a lighthearted funny joke, not rude!!!!
🤣🤣🤣🤣 I’m afraid I may already have verbal diarrhoea!
Everybody has a high horse. Not everybody’s carriage is pulled by large blue cats though.
Meow?? None taken.
If the cat fits........
It's a good old saying Mel... Oddballs we all are!...The problem is with those that think they're not!! But we all fit into that category at sometime & express our view!
You're ok!! Stop beating yourself up if you can!!
Thanks PD, I'm fine... just needed to get that off my chest before it turned into a cancer.
Oddballs we all are!
Well Melissa I agree 'diversity' is everything (this is of course coming from someone who has often herself been regarded as TOO 'diverse'). I still can't see any real issue here except perhaps a wee 'fear' that if you weren't around this forum so often it might not be such 'fun' - although surely we ALL need FUN !!! But ultimately you made it clear this was just another option for those who want it and having had a test run here on HU most of us know what driving in your 'car' would be like - and I certainly know I'd enjoy the 'ride' ... TRULY it is up to is as adults to decide to accept or decline such an opportunity ... after all there are surely MUCH larger 'life decisions' we all have made and will yet have to make ....
XXX
Thank you Rimmy, You're too kind... Yes, definitley!!! It should be crystal clear what "driving in my car," would be like! BANG! CRASH! BOOM! EEEEEEK!
Never a dull moment!
Darling Rimmy the peaceful darling xxx
As I said previously I’m sure your idea was done with the best of intentions, and maybe you were surprised by the reactions from some, but should you have been?
This forum has many people who are struggling with health and maybe other issues, and the thought of changes (although not forced upon them) is just too much to cope with.
Unfortunately when someone has a serious illness the thought processes are not a clear cut as pre-illness, and people are quick to jump conclusions, and maybe too quick to form an opinion and express that opinion.
And maybe take exception to others comments?
We all deal with life and illness in different ways, who’s to say what’s the correct way.
Move on, life’s too short.
Thank you for your comment DL. Yes, who’s indeed gets to say what way is correct?
Meliasa,
I think the ideas is a great one, but then change is part of life for me. It is a place I can easily post things that come up that aren't for here.
As others have said, we would miss you from here, you do brighten it up 
I think I'll have to look at cross posting, well posting here and a link there.
Keep up all the stuff you do
Julian
xXx
Hi, Julian, Thank you for your comment. We're happy to have you visiting the FB site and feeling comfortable posting there! 👍🏻
Hope you'll still remain active on this forum too. Have to spill my tea regularly 😂 😘
...two blogs in two day, multiple comments on other posts, and numerous "Likes." That's active, right! 🤗
......and love when tea gets spit out! 😘
Hey, tomorrows another day. go forwards don't, look back yesterday is gone now. Roll on tomorrow and let's have a bash at that!!!!!!!! Love your posts.
Always moving forward, but never want to forget where I've been, or what I've learned!
Thank you!!!! ❤️
I think it is great and brave you posted this. I totally understand you. I have experienced the same here a few weeks ago. And it is very important for the health to get things off your chest, and to let people know how things are felt and perceived. Well done you lovely lady.
Hi MP, Thank you. I appreciate your opinion and your kind words.
Hi Melissa, I am always fuming at FB but I don't feel you should be bashed for any idea, I love your posts, we need your wit and wrath and good advice. xox Coda
I was one of those people who raised concerns that the new fb page might change this site. I said this because I feel this site offers 99% of people a balance of medical and non medical chats and I wouldn't like that to change. That is my opinion and whether any one likes it or not i am entitled to say this. I am not averse to change in any situation because I accept that everyone has an opinion/view even when that is not my personal view. I said your fb page MIGHT change this site. I never once said to you either publically or privately (when you decided to move our conversation to private chat) that your idea was wrong nor that the world would end if you persisted with your actions. In our private chat I apologised if you thought I was criticising you because that was never my intention and when you asked me "are we cool" I said to you there was never a time we were not cool because we both had opinions, neither one of us necessarily being right or wrong. What I dont understand in all of this is why you think you can do or say certain things, yet when others expressed their opinions you acted like you were being personally attacked. We were not attacking you or your right to open as many fb pages as you like about pmr or any other subject. We were simply expressing our view that we wouldn't want the HU site to change. The problem in all of this is that people are now getting a twisted view of what was said because not all the facts are there for them to make an informed decision based on ALL the posts about this.
I really am sorry you felt under attack because from where I stand that never happened, you just didnt expect the fact other people had opinions and wanted to voice them.
As I said in my original post that even though I didn't want this forum to change I had still joined your fb page. What more can i do? When would you be happy about mine or other people's actions? Please try and see this post for what it is, my opinion on what happened, not an attack on you or others about joining another group/site/page. We need to drop this subject now because it isn't doing anyone any good and that's what I thought this site at least was meant to do.YBx
I don´t think too much private coversation is a good idea, then the rest of us don´t have a clue, and the whole thing become confusing.
Exactly what I think. If it's something personal between you and another forum member that fine, keep it in private chat especially if your chat includes details you dont want to give to everyone, but when a subject starts as an open post and someone makes it private all of a sudden I can't help but think that it's to hide things and then like you say everyone is not aware of all the relevant details and confusion happens.xx
I'm sorry you believe I went to a private with you because I had something to hide. I reached out to many people, privately, in an attempt to stop the number of comments being added to the already long stream; reason being, the Administrator had voiced concerns, with the moderator's ability to monitor large strings of text.
I never had a problem with you or what you did in relation to the fb page and I told you that at least twice and I explained why I had worries about the fb page affecting this site. That was my opinion and as has just been said in a post I am entitled to it in this country. If you didn't want anyone's opinion the you should maybe not have posted openly. I have no objection to the fb page but I do object to having my quite innocent comments being screwed around with to make me seem like baddie. Just so every one knows who didn't get the chance to read everything in context what i said was I was worried moving irrelevant posts to fb MIGHT change this site, which to most people is their lifeline to others who have the disease for medical help but also want a laugh along the way. This whole rant and rave is ridiculous especially as people are joining in that never saw any of the original posts. People just need to get on with their lives and stop asking for approval from others when they make a choice.xx
I went to a private with many people in an attempt to stop the number of comments being added to the already long stream on the post... the reason was that the Administrator had voiced concerns, with the moderator's ability to monitor the large string of messages.
okay, hopefully it did decrease the number of comments.....
Hi YB, Thank you fo your opinion.
I never had a chance to read what was said by you, as I am a new commercial, but we live in a democratic world , and people at the moment in England can have vote on what they want, same here I think, and you should not take what people said to heart, I have enjoyed this site such funny people on here, good luck in what ever you decide. To do
Welcome to the HU site! Please know it's one of the best places to frequent, if you have PMR and/or GCA! And yes, most people live in a democratic world; as such I believe I had the right to create a 5th FB Group, dedicated to PMR/GCA, as I did. Thanks for your comment.
Once again I will apologise if I have upset anyone, and wish you well with the fb.
Hi Blackcat1M, You have certainly not upset me! All good here! 👍🏻
I didn't take anything to heart believe me that's why I am annoyed my comments have been twisted to suit someones agenda. Strangely enough I am aware we have a right to our opinion in this country and as you obviously didnt even see my post maybe you should refrain from commenting on what you think I said. Most people make an opinion based on what they know or what they have seen, not what they have been told happened. What i did say is "I wouldn't want this site to change and that by moving irrelevant info to the fb page this MIGHT change this site.
As you say the site is funny but if all the funny things go to fb which was what was suggested in lots of the original posts (That you didn't see and which has been removed so no one can go back and read) then this site would change. It wouldn't be intentional on anyone's part, it would just happen. I don't think that is taking anything to heart or criticising anyone's opinion or curtailing anyone's right to do something. So I really suggest you get the full details about what was said/written before taking a swipe at people.x
I was not taking a swipe at anyone, what I meant was we are all entitled to an opinion, so if I have upset anybody I am sorry that was not my intention.so I will bow out of this forum and wish you well
No one asked you to bow out of.the forum, what I asked was as you hadn't read my posts then you couldn't reasonably comment on them and I would prefer it if you didn't start having digs at me without the relevant information.
I wouldn't dream of butting in to a debate I had no information on and maybe unreasonably I expect the same from others.
But I was not having a dig at you, I was saying you as well as everyone else was entitled to your opinion if anything I was agreeing with you, maybe it did not come across that way, and I did not realise it was a private debate or else I would have kept my shut
No it didn't come over like that but then again it's hard to convey feelings in texts. It wasnt a private debate but you needed to have seen the whole post which was deleted for some reason to understand where i was coming from. I dont want people to fall out over someone elses opinion. I dont object to the fb page in any way shape or form and I am also part of that page buy I get a bit ansty when people manage to screw my words.to suit.themselves.
That topic aside, you said you were a new member.? When did you get diagnosed? If you have any queries make sure you post on the forum and all the experienced one gurus will be long to help and advise.c
Sorry it should say new commer.
Love it. Agree totally. Please don't let it deter you from the FB group it is necessary. I got upset as I got the impression I am a bad guy for being part of the "turning our forum into a chat room" and I am stupid to be upset because it is someone's opinion and they are entitled to it. I took that on and that says more about me. But honestly ....love you, love your writing and the FB group althou not well enough yet to participate. Love this forum too much to ever leave or write less xxxxxxxxxxxxxxxx
DC, PLEASE do not think that any of "this" had anything to do with you, it didn't. No guilt, no regrets, please don't let it upset you. Things like this usually happen for a reason, which may not be revealed until later.
Dc this is nothing about what you have said or done. Do not worry about upsetting anyone. Like it's already been said on many occasions over this subject everyone is entitled to an opinion.xx
To all of you. We are all struggling and in the shit sorry for language. We must stick together even if we have a wee spat. Love you all. xxxxxxxxxxx
Hi Mamici1, just want to say apart from all the amazing information I have gained from HU I absolutely love your blogs. You are a very talented writer and brighten my days. May you long continue! Thank you.
Hi SueMacD, Many thanks for that!!! I really appreciate that.
Maybe a little diversion and humour. Don't be put off by the first minute, it gets better
Let's just get on with life, however we perceive it. We're all in this together.
youtube.com/watch?v=wxrbOVe...
🤣🤣🤣🤣🤣🤣🤣 Hysterical!
Slowdown-this is the best thing I’ve seen all week. Thank you! I’m staying out of the rest of this thread 😘
😊
I strongly believe it is precisely because you are a strong, engaged and very much revered member of this site that the idea has worried so many. Fear of loss is also mixed in with fear of change.
I truly hope there is resolution of much of the turmoil before your knee surgery as we all know stress can affect healing.
Warm regards
PMR2011, What a lovely thing to say... thank you so very much. Yes, I'll take some down time before the surgery. Cheers.
Carry on Old Girl. Loose upper lip!
I have messaged you privately mamici1. Please do not continue to post on this subject. Thank you. PMRGCAuk Moderator
pennyw, May I ask (publicly) why I am the only one being asked to stop commenting on this post/subject? Also, please note:
12 of my 21 comments, were me saying "Thank You" to people for a comment they made to me!
5 of the 21 were me genuinely "laughing" 🤣 at a funny comment that another member had been made.
1 was me telling another member not to feel bad/guilty; that she had nothing to do with the perceived conflict.
1 was me "welcoming" a new member, telling her what a great site this was and defending my decision to open a FB page.
2 of the 21 were me explaining, publicly (because it was insinuated publicly that I had been trying to "hide something") why I took my comments to "Chat," last week; when in fact I did so because I realised the lengthy, emotive comments were a nightmare for the Moderators to manage!
Also, another member, who posted 7 lengthy, sharp, somewhat combative comments above, was not asked to stop posting their comments... may I please understand why?
Thank you, Melissa
Also, I have responded to your private Message and I had I stopped commenting many hours ago!
I don’t know who you are, but whether this debacle was started by a member, or by a humourless snowflake, of an invigilator, you have dealt a severe blow to this site. It was already, in the last few months, degenerating into a forum for one or two who seem to think that the word count is more important than the content.
Many, who in the past have provided us with humour, empathy, and in-depth advice on problems of PMR/GCA, and personal, are rarely here.
I have been a beneficiary of their knowledge and experience.
Melissa was a ray of sunshine on many a dull, painful day. She didn’t force you to read her rants, her replies have always been warm and understanding of the other point of view. She touched a chord in those of us who wished we had her gift of being able to express the humour, irony and plain cussedness of those we come up against,whilst just trying to
plod along.
She was only trying to give a home for those likeminded folk who enjoy a banter.
So whoever you are, shame on you for robbing the site of her
talent.
The ability to reply to this post has been turned off.
So fed up ,need advise 
So many questions..re PMR
P.M.R younger folks 
My Polymyalgia journey so far
Why are my legs suddenly so painful?
