Just Say'n

[kwhompus]

I'm sensing some frustration from the members of this forum. Some post are hard to ignore,like that of a train wreak. Maybe we can limit our post to a less authoritarian and aggressive comment or response. I personally don't like being lorded over on how I should feel or live. So, I'm just saying, lets have a little mutual respect for one another,our mistakes and our downfalls. Peace out and God bless you all.

[Amore55]

Very well stated and I completely agree. I have lived with this for 31 years and prefer to make my own decisions...good, bad or ugly. I was actually diagnosed 16 years ago with first symptoms manifesting 31 years ago.

We all must choose whether to use traditional medicine, so called alternative medicine or anything else. But please do not jam any opinions down my throat. Love to all, Kelly xx

[kwhompus in reply to Amore55]

Clink (of glasses)

[starlight5 in reply to Amore55]

Agree, especially on a daily basis!

[kwhompus in reply to starlight5]

I know right! How come I feel like I'm going to be in so much trouble when dad gets home.😃

[Amore55 in reply to kwhompus]

Sometimes, a wonderful bunch of people can bring about change. A much needed change, right? Way to go with the clink of glasses!😁🤗🤗🤗

[kwhompus in reply to Amore55]

This is a great example of how important words can be. Either they are supporting or damaging. We must take responsibility for what we say.Yes, its a free country, BUT.....we also can suffer the consequensies for what we say.

[kwhompus in reply to Amore55]

I think you began a much needed discussion.

[falalalala]

Agreed!

[kwhompus in reply to falalalala]

thanks for the support!

[Allen5280]

I dont know what you are attempting ro get across. Might need to be a little less vague and if its my stuff then just private message (now chat) and we can discuss. However, i will say if i feel like i need to post something i live in the USA where it is free speech so might be a good idea to adress the issue in the post your talking about. Because what you mean, i haven't the slightest clue.

[starlight5 in reply to Allen5280]

I don't believe she was referring to anyone in particular but there is a member who tells us daily what we must do and how we should feel regarding the treatment and symptoms of this disease.

I enjoy your posts, there is truth to them about how devastating this disease can be.

[kwhompus in reply to Allen5280]

Why go to private chat if its a free country?

[Allen5280 in reply to kwhompus]

Ok then just tell me, although ive recieved several messages from others telling me its probably not me.

[kwhompus in reply to Allen5280]

I don't believe it's you, but if you have said something hurtful,please take note.

[Allen5280 in reply to kwhompus]

I would never say anything hurt intentionally, some people take things the wrong way is what im saying and i dont think anyone here would.

[Amore55 in reply to Allen5280]

You are so very loved, Allen!

[Allen5280 in reply to Amore55]

Thank you

[Iona60 in reply to Allen5280]

Hi Allen5280 and Hi Kelly Amore55 . Miss you guys.

[Allen5280 in reply to Iona60]

Hey Iona60 How are you?

[Amore55 in reply to Allen5280]

Hey Iona! Remember when we used to chat a lot?

[Iona60 in reply to Amore55]

I PMd you on this site and texted you. Did you get either one?

[Amore55 in reply to Iona60]

I did, sorry I have not replied yet. Late tonight, but plan to pm you tomorrow! Much love! And I have new phone, will give it to you so we can chat again. 😁

[Amore55 in reply to Iona60]

Iona, miss you too. See comment below.

[mrsmike in reply to Allen5280]

I always look forward to hearing from you!

[Allen5280 in reply to mrsmike]

Thank you mrsmike

[Mermaidia11]

Good point/post lovely kwhompus

(The time difference explains this late post)....

No one likes to be told what to do or how to feel or proceed.

My personal fave is when someone says ‘be positive’ when my mood is through the floor.

(Walk in my shoes for a day and you will see what a sanctimonious patronising statement that actually is)

We are only experts at our own illness in truth, and can only offer loving advice from our own unique experience?

It’s not ‘their way or the highway’ - and any posts that seem like that are seen for what they are and ignored?

Demonstrating tolerance. kindness, compassion and understanding no matter; what seems to be the rock we have to bear in real life and on the internet- (and we have all learnt the hard way to do that. )

There’s so many beautiful, wise souls here.

My cheese slips off my cracker at times. but hey we are all only human with a difficult incurable disease to travail

Together right

Love n hugs to all

[kwhompus in reply to Mermaidia11]

"My cheese slips off the cracker". I am so going to use that comment if you don't mind. thanks for understanding my comment.

[Turtlepie]

I joined this group to get knowledge, support and a safe place to be. I chose to get notified by email because I didn't want to deal with Facebook kind of stuff. I have had just a few times that someone was critical of what I posted. I read it gave a short response and moved on. I also was getting harassed by someone I reported it to an ambassador and it was taken care of. I don't always read everything on hear except for those that respond to me. But I feel that this place is supposed to be a safe place and it bothers me that we are having this descusion and that I am not seeing some that regularly replied to me. I hope that this will not end this form like how it was when I first joined. I really enjoy sharing my experience with my medication and my craft. I have not been able to do much of my crocheting since I got sick so no finished projects yet. You all mean something to me and I don't want to lose this safe supporting forum

[kwhompus in reply to Turtlepie]

Me either. Today is a new day and a great time for a fresh start!

[Doubled51]

Morning y’all. I guess I’ll have to put my 2 cents in.

I joined this forum close to 4 years ago and there were only 100 to two hundred people. Jes or Jimeka correct me if I’m wrong. But I joined because the invitation was that it was a safe space to ask for info and that it was a place to receive advice if needed and to give advice if I could. Plus we could depend on each other for compassion and understanding when needed and also to be there when we need to vent that it was alright to be frustrated with this crazy disease. We come to get answers from people that understand because we are all afflicted with the same disease that nobody understands but people who live it daily.

It has grown tremendously and with growth sometimes things get forgotten like our government is today it’s not always for the best. But I try to read what I need and ignore what I don’t because when one thing gets corrected another appears.

There are a lot of awesome people here who love each other here so let’s not let one bad apple spoil the barrel.

I hope everybody understands what I’m saying because it’s with love and respect for you all.

I love you all

Donnie

[kwhompus in reply to Doubled51]

Well said Donnie and message received.

[Doubled51 in reply to kwhompus]

Thank you. As the saying goes just take what you need and leave the rest.😋😁🤭.

Donnie

[JTZES]

I hope I am not the reason for your topic. I only respond to the people that are asking for help with an issue.

I'm not a doctor but will share my experiences that I have been through. It's not my attention to put anyone down. It's just meant too assists the person that posted the question.

I am pretty straight forward which doesn't appeal to everyone but I don't recall posting anything that would put anyone down. Just trying to help.

I love this group and want to stay in good standing with everyone ❤

[kwhompus in reply to JTZES]

your comments have always been appreciated, but I'm not the boss here.

[lbenmaor]

Well Stated.

Best Wishes,

Leslie

[Midgey_Midge06]

I love this forum and wud be lost without everyone.

[rjoneslaw]

well said

[kwhompus]

thanks for your support. I wish my comments had not fallen on deaf ears.