Special Threads For VIP Members

[rdmc]

Hi IntoDust! I hope you are doing well.


I have been a member for a decade and it's uncommon to have someone's name in the title, especially a newer member. It's more common for a new member to arrive and initially start a bunch of threads seeking answers. It may appear they are monopolizing the boards for a little while, but over time it balances out. Some people start a new post for every question that pops into their minds and others may ask a dozen question in a single post. I believe these are just personality differences between people.


I'm sorry that you may have felt marginalized or that others are getting special treatment on this board. I can assure you that it's not intentional and your imput IS valued - just like this post. I understand where you are coming from and tend to avoid the posts that you are referring to. I believe others have also said their peace and will engage less moving forward. That's how these things tend work themselves out.


I'm glad you posted this because if you are thinking it, others probably are as well. Rest assure the past few months of the board activity is an anomaly. I hope you will hang around a bit longer, ask your questions, provide your feedback and see if the board doesn't improve for you. Thank you again for voicing your concerns.


I wish you well...

I've been around since 2003, so let's just say, for awhile.

Over the years things have changed, a lot. The board used to be so active, it was almost impossible to keep up with. Things are at a much slower pace now, in fact I might check in
every few days, and things will have changed little. I know that much be discouraging to people,
especially new members, who are expecting a more robust activity.

I have noticed what you've said, and Marcus alludes to. I call them "stars" (not VIPs) and I haven't been on here much lately to know if there are any right now. But the ones I'm thinking of, in the past, had an answer for every thread. I'd assume they had much more info about MS than the "average bear" (hope everyone's a Yogi Bear fan to understand that ), and it almost felt like they were in the medical profession. They would correct other folks threads on technicalities, and would basically "take over" the board by posting an "answer" to every inquiry. Folks would even start threads asking specifically for that "star's" opinion.

These cycles would come and go. I don't think the "stars" would last for more than a few months then they would fade out, and not heard from anymore.

Then there are the multi post threads whose numbers rise because they answer every person who posts to them. This could be true gratefulness for a reply, a way to run the original thread up into double digit pages, or just need for attention. I can't be the judge of what is really going on, it's just what I think when I see that pattern.

Third type I've seen are just multi posting folks...I just see those posts as folks who truly want information in order to validate their type of symptom or the course their MS is taking. I see those posts from people who are new, and people that need reassurance or information, and I cut them a break because most of us have been in that situation at one time or another. I recently posted about an MS symptom I've acquired, I know it's MS related because the docs have told me so, but I was wondering if anyone else had dealt with it.

The names in the title must be something new, I really hadn't noticed. But there was a time when the reason you saw a name in a title it meant that the poster is posting in order to find if "name in the title" had been heard from by any other poster. There was a time when you could email through the site, so the thread starter would be wondering due to concern about someone's health. And sure enough, it would turn out that person was in the hospital or laid low by their MS for a few days.

But with all it's "idiosyncrasies" MSWord forums are the best place to go for information. If I were new and needed information, I'd use the search button first instead of wading through the recent pages of threads.

Well that my opus on the issue...Sorry to be so prolific.

[Daisycat]

I don’t remember starting that thread or even posting in it for a week.

Ive avoided this part of the boards because my view that a life with this disease isn’t worth it for me isn’t popular or welcome..

So please show me where I did anything to cause that thread...

[Daisycat]

Kitty

can you please show me these threads I’ve opened recently that ask the same question?

I think the mri one was the only one and that was to get an idea about if people have to / how drs view no mri.


I’ve learned my questions aren’t welcome here so for the most part it’s me and dr google. Things like mris I’ll ask here because I figure I’ll get better answers.

[kittysmith]

It's just...

Kitty

can you please show me these threads I’ve opened recently that ask the same question?

I think the mri one was the only one and that was to get an idea about if people have to / how drs view no mri.


I’ve learned my questions aren’t welcome here so for the most part it’s me and dr google. Things like mris I’ll ask here because I figure I’ll get better answers.

I'm working, so I don't have time to go through all your threads. I will just say this. Every thread you start is negative. From calling yourself a "cripple" or a "curse" to your "Trip to Switzerland". People try to help, and you continue to reject every idea or notion from those of us who are also living with this disease. You have threads with multiple pages of people trying to help and you telling them why their suggestion won't work for you.

A while back, I posted a message to you about my cat. I was trying to be as kind as possible. We talked about our kitties. I felt like I had made a difference and we had a connection. The very next day you were back to posting about "Dr. Google" and being crippled. It hurt me a lot. I was sure I had helped in some way. I have never seen you comment on someone else's thread. Maybe helping someone else out who is having a hard time would help you with your perspective. You don't have to accept your curse, but you could try to be more positive and thankful for all the attention you have received. I hope you stay on this board. You seem to be a really nice person who is going through a rough time. Anyone who helps animals has to have a good heart.

Hang in there. It does get better...if you let it.

[mercadies25]

Is it a common occurrence for certain members of MS World to not only monopolize the boards, dominate the conversation and even get special threads with their username in the title? It’s turning into a bizarre VIP treatment.
Or is this a rare situation?
I haven’t been a member for very long so I’m hoping one of the older members can chime in here.
I haven’t been posting much and to be honest, I’ve been really turned off by what the boards are turning into. I said months ago when I first began posting that I was disappointed but I held out hope that things would turn around. They haven’t. While it’s a little quieter right now, it’s a lull and it will start back up again. It’s a predictable pattern at this point.
I understand wanting to help someone in need, but at what cost? Is all of this special attention actually helping in a meaningful way or is it feeding into other issues such as a need for attention?
Just look at the amount of replies in specific threads and tell me what it says to other members who have their own questions, issues, rants or stories to share.
Is the “increased traffic” really worth it if others don’t feel they have a safe place to share their equally valid posts?

Thank you!

[Daisycat]

Kitty

I’ve stopped posting 99% of my questions here because I’m not going to be positive.

To me I don’t have what I do consider a curse and I will end up in Switzerland if it ever comes up but for now I’m just living as if I don’t have this. Except no smoking.... but I guess it’s ok.

I did pay my car off 2 years early so there’s that.

And I try to avoid other threads because of how negative I am. I feel it’s better for me not to make their thread negative.

But like ive said I’ve found my way to deal with it. Denial , excersise, piercings and tattoos, concerts, and working all the side jobs. (Gotta Pay for the concerts somehow)

and im sorry I hurt you. Thinking of this thing makes me depressed. I’ll never be ok with it so I am just making the most of however long I have left

[kittysmith]

Okay, but what about others?

Kitty

I’ve stopped posting 99% of my questions here because I’m not going to be positive.

To me I don’t have what I do consider a curse and I will end up in Switzerland if it ever comes up but for now I’m just living as if I don’t have this. Except no smoking.... but I guess it’s ok.

I did pay my car off 2 years early so there’s that.

And I try to avoid other threads because of how negative I am. I feel it’s better for me not to make their thread negative.

But like ive said I’ve found my way to deal with it. Denial , excersise, piercings and tattoos, concerts, and working all the side jobs. (Gotta Pay for the concerts somehow)

and im sorry I hurt you. Thinking of this thing makes me depressed. I’ll never be ok with it so I am just making the most of however long I have left

But what about trying to help others on the board? Go on other threads and say something positive to them, even if you don't feel it yourself. Help someone who is down. Wouldn't it be great to encourage others?

Everything you just said in your reply you have said a million times. If you aren't willing to accept it, why ask for opinions from others? I hope the newly diagonsed know that MS is not a death sentence. If you want to live like there's no hope you are welcome to your opinion. It's sad that you have accepted what you think is your fate. You don't have months, DaisyCat, you have decades to enjoy life. It's a gift.

I really hope you start living instead of waiting to die. You are more than a disease. You are a tallented, caring, intelligent, animal loving person. Don't forget how special you are.

[Mamabug]

But what about trying to help others on the board? Go on other threads and say something positive to them, even if you don't feel it yourself. Help someone who is down. Wouldn't it be great to encourage others?
...

I really hope you start living instead of waiting to die. You are more than a disease. You are a tallented, caring, intelligent, animal loving person. Don't forget how special you are.

I love these two paragraphs.

Good advice for Daisy. Encourage others, rather than focus on self.

[Daisycat]

Kitty

If someone wants to start a thread I can be positive and help with I’m there. Someone needs support about their pet I’ll be positive. About this disease I can’t.

Someone is struggling in school... I can relate. A 50 page paper while working full time wasn’t fun but positive about this disease can’t do it.


I hope I have decades , but I know my limits and it’s a very very fine line. I’m going to live like I have months because I don’t want regrets. I’ll keep doing everything I can to be healthy but I’ll not be positive about what I consider a death sentence.

And most of my posts aren’t about accepting this disease. They are now related to issues such as relationships and drs and what they can force on me.

Ive developed a good relationship with dr google.

I really appreciate your words kitty I really do. I just feel like my entire life is a waste and a mistake because I have this. It is what it is though so I’m going to live every day as I’d it is my last and hope for decades before the line is crossed.

[Myoak]

Is it a common occurrence for certain members of MS World to not only monopolize the boards, dominate the conversation and even get special threads with their username in the title? It’s turning into a bizarre VIP treatment.
Or is this a rare situation?
I haven’t been a member for very long so I’m hoping one of the older members can chime in here.
I haven’t been posting much and to be honest, I’ve been really turned off by what the boards are turning into. I said months ago when I first began posting that I was disappointed but I held out hope that things would turn around. They haven’t. While it’s a little quieter right now, it’s a lull and it will start back up again. It’s a predictable pattern at this point.
I understand wanting to help someone in need, but at what cost? Is all of this special attention actually helping in a meaningful way or is it feeding into other issues such as a need for attention?
Just look at the amount of replies in specific threads and tell me what it says to other members who have their own questions, issues, rants or stories to share.
Is the “increased traffic” really worth it if others don’t feel they have a safe place to share their equally valid posts?

Hello IntoDust,

Thank you for saying something that others may have been thinking, also.

DC didn't start the thread so she is not responsible. Mamabug did for the reasons she explained which seem quite reasonable. Since you asked for older members to chime in, I hope you don't mind if I do.

If I understand correctly, one of your concerns is, "Just look at the amount of replies in specific threads and tell me what it says to other members who have their own questions, issues, rants or stories to share."

This thinking supposes that posting is a zero sum game... a theory in which one person's gain is another person's loss. Actually, the "increased traffic" you mentioned when you asked, "Is the “increased traffic” really worth it if others don’t feel they have a safe place to share their equally valid posts?" makes it more likely that someone would respond to equally valid posts, not less likely, because posting is not a zero sum game.

There is no loss to anyone because of responses to someone else. I believe everyone, including new participants feels safe posting. The mods go out of their way to make sure of that. The mods' generous, compassionate hearts are clearly evident in making everyone feel welcome.

All of us get a little frustrated at times when we feel the has not been the extent of response we hoped to a post but there is never an issue of feeling safe about it.

I believe abundant responses in any thread increases the chance of response to other thread. So, just the opposite of a zero sum game where one loses because another wins. Posting here does not diminish posting there. IMO, the reality is just the opposite. Posting in one thread makes it more likely that person will post in another, I believe. On that basis, I really appreciate DC. She makes it more likely someone seeking information, insight, or help will receive it. DC makes it more likely someone has a safe place to rant, vent, or get heard.

Thank you IntoDust for articulating your feelings. You are a compassionate, pleasant, wonderful person and your voice is much needed and much admired. I do admire you, and I am thankful for you. I love your contributions!

DC, I would like to respond to something you said... that you can't be positive about this disease. You miss the point entirely. It is not being positive BECAUSE of disease; it's about being positive IN SPITE of it! That is the challenge. That is the struggle.

DC, I appreciate your posts. You are real, you are raw, and yes, you can be a pain in the butt, sometimes. But you just being you is affecting lots of people for good, I believe. And btw, I have seen tremendous progress in your life since your first posts just a couple months ago. And I can certainly thank this platform and the people who sacrifice to make that possible.

Sacrifice is a good word... giving up something valuable... time, effort, money, reputation, desire... mindful that another's need may be met. To me, nothing is more noble, more kind, more needed, more appreciated, more respected, or more worthwhile than giving of self for another's need. That is true, unfeigned love.

I may not get to express my gratitude to everyone I'd like to but I hope, in some sense this, post may help accomplish that. And, if there are no angels to kiss your cheek and whisper 'well done' then surely the satisfaction of living to your best instincts will establish your heart and mind in settled peace, knowing you lived superbly well, not because of disease, but in spite of it.

Thank you, IntoDust!

[marti]

Kitty

If someone wants to start a thread I can be positive and help with I’m there. Someone needs support about their pet I’ll be positive. About this disease I can’t.

Someone is struggling in school... I can relate. A 50 page paper while working full time wasn’t fun but positive about this disease can’t do it.


I hope I have decades , but I know my limits and it’s a very very fine line. I’m going to live like I have months because I don’t want regrets. I’ll keep doing everything I can to be healthy but I’ll not be positive about what I consider a death sentence.

And most of my posts aren’t about accepting this disease. They are now related to issues such as relationships and drs and what they can force on me.

Ive developed a good relationship with dr google.

I really appreciate your words kitty I really do. I just feel like my entire life is a waste and a mistake because I have this. It is what it is though so I’m going to live every day as I’d it is my last and hope for decades before the line is crossed.

Daisycat whatever you post please remember there are younger kids and teens looking in here.

[Daisycat]

Daisycat whatever you post please remember there are younger kids and teens looking in here.

I do actually... I’m not around kids ever and my only interaction with them is at work so what I might think is acceptable might not be.


Myoak

I just can’t be positive with this disease. My feelings are known (actually a mild version of how I feel ) and I am not going to look for ways to accept this.

People here have decent advice so if I need help with certain things I’ll post here. As for all things related to being positive I just can’t.


So since I can’t accept this disease I’ll do everything to avoid thinking about it.

No more mris is my first goal.

[Daisycat]

And myoak

don’t worry if most people here don’t want me to post because I’ll never be mrs positivity who dances with joy because I’m alive I’ll gladly leave.

The only way I’ve improved is because I try to avoid thinking about this and mostly am doing ok.

certain things (like maybe losing my medicine if they change copays make me come back here)

I had everything figured out but the chance that losing my medicine is a real possibility now terrifies me and is making it hard to not think about this.

[Myoak]

DC, I am delighted to accept you just as you are! You are fine just as you are.

IntoDust, I hope I didn't come across as facetious. I am totally sincere in thanking you for your posts. I believe you know, or you should know, that there are people coming to this site looking for the knowledge and good judgement you have to offer. Thank you for giving of yourself!

[pennstater]

Daisycat - please don't feel you are not welcome to post. If you have questions, ask. If you are afraid, but just need to get it out and aren't looking for answers, let people know that. Start your own threads, warn people if negative, let people know up front what you want from the post responses. That way, easier for people to skip if they can't relate/don't want to participate. And those that can relate and can be helpful to you, can post.

One thing to keep in mind. While you don't understand how anyone can accept MS and be happy in life, others here don't understand why you choose not to since you seem to live in partial denial, anxious and unhappy with life. That is the catch-22. We all remember feeling some of what you are and don't wish that on anyone. Probably why it is hard for people to not push you towards acceptance.

But there are others who may relate. So please start new threads when you need to.

Also hope you have no issues with copays. If you do, reach out to the pharmaceutical company and see if they can add some copay assistance.