Licking my wounds-or what a nice board we have

[eyeamdry]

Folks, this really botheres me, but I shouldn't let it.  It does show what a good, flexible and helpful forum we have though.  I have been bothered lately by my muscle weakness in my legs and I thought I'd drop by an MS site and ask a few questions.  That was the title of my post........asking questions. 

I asked about my muscle weakness, said I had Sjogrens, and I knew sometimes the MS mimics SS and vice versa.  I also mentioned a little about MS because my niece (by marriage) has MS and is wheel-chair bound.  I mentioned by marriage so they wouldn't think I had a bloodline to MS.

Well, I got chewed out for just about everything from a-z.   How dare I presume to know---about MS.  How dare I talk about a "wheel-chair bound" person.  I must have offended from New York to California.  One made a joke because I thought just because I had a non-blood relative, I thought I'd have MS.  (My mentioning it was just the opposite.)

I also said I'd rather have SS than MS and I got reamed for that.  Well----------------------------

I offended no one because I was there asking questions for me.  My niece is truly in a wheel-chair so that is a fact, not sure how they could take offense at that.   Ticked because i "knew a little about MS."   Anyhow, they ripped me some new eyeballs. 

We have people stop by here all the time with silly, good, some rather dumb questions and I've never seen a response like that.  People truly are asking because they think they have SS--or their Mom does, or aunt, whatever.  They don't come on here to be chewed out.

I know it's easy to be taken wrong on the internet, but let's make sure we keep what's good here.  I honestly wish I'd not gone to their place!!   If I'd gone there with some bogus stuff or a "cure" I could understand the wrath.  Oh well.  Just have never seen such nasty on any board.  I frequent a cancer board and they are very cool, just like this one. 

Take care all,  Lucy

[JannaLee]

You know...the last thing I need is mean people....especially when I'm worried or not feeling well!

Lucy honey, you can stay with us and be loved and encouraged.

Too bad they didn't answer your queries while they were chewing on your poor little dry eyeballs!

Sadly they will probably not help each other either.

Go figure!

[quiger]

Hi Lucy,

I am sorry to hear you had such an awful experience. I can't understand why you would have received so many negative responses. I have always felt that our members, including you, were very special and our staff is amazing. Regardless of the questions, everyone deserves a respectful reply.

Maybe you would have better luck at a different MS site. Our site's co-owners once belonged to an MS site before starting Sjogren's World. I can ask them which one if you'd like.

I hope you are feeling better and will have a good week.

quiger

[eyeamdry]

Nope, I don't need an MS board, just wanted to ask a couple of questions and said so in my post title.  I didn't have "lots" of mean replies.  Only two.  But they were baaaaaaaaad.  It's weird because people stop in here all the time asking about SS.  As they say, no question is dumb except the one you don's ask.  I have big shoulders and can handle the rude person(s).  She can keep the members of their board way down by doing what she is doing.  :-)............  Lucy

[Patze]

Hi Lucy,

I too got an attack response once for asking a question on a another board (for an unusual condition I also have).  I don't post on that board anymore as I don't particularly care for the "attitude" I've received.  Now that's sad, I would much prefer to deal on a board such as this one; everyone is welcome and helped.

Oh well, their loss.

Patze

[Pooh]

Lucy I am so sorry you got such rude replies.  It sounds like they are upset with the world and are taking it out on anyone they can.  That's so sad.  They would get so much more out of life helping others than wallowing in their own self pity. 

I am so glad you are happy with our site.  I personally don't know what I would without each and everyone of you.  We have a great familyhere. 

Take care and stick around with the ones who love you and care. 

Hugs, Pooh

[irish]

Lucy, Boy, did you ever have a fun day!!!! I visit a Myasthenia board and I have seen some really royal and rude battles over the years. I don't get it. Boards like this are to help people not "dun" them. Sometimes I think that people have too much time on their hands and feel sorry for themselves or something. It is like they want to pick a fight just to spice up their life.

You just keep coming here babe(this is a non sexual remark ) and we will all just be nice to each other.  It is bad enough to not feel good and then to have to put up with people who take it out on others because they are ill is not a fun thing to deal with. I know that we all have our bad days and our days when we may sound crabby or whatever, but I don't think I have ever seen anything on this board like I have seen on others. A couple of boards I have visited have used very foul and nasty language---like R rated.

Smile Lucy, we love ya!!!!!!!! Irish

[Katybarstool]

Me too Lucy!!

Stay away from those mean people. I'm glad you don't need them.

Kathyx

[wen.uk]

Blimey what a nice welcome you got then !!!!!  Some folk think they have the monopoly on ill health unfortunately, and can be quite blinkered towards others.  After reading your post I consider myself so lucky to have access to a site such as this, as I truly don't know what I would do without it some days.

[Sandra]

I always think that when people respond to questions (no matter where) like that that they must be really struggling. Perhaps lack of knowledge contributes as well. Your questions are totally rational to me anyway. I also have a first cousin who has been institutionalized for years now because of her MS she is now only my age 46. I have been having some nervous system problems over the past year or so. Tremors, pain, weakness and my bladder has been driving me crazy, 8 UTI's since Oct 07. My dr's question MS all the time, but there are no scientific reasons so that's where it ends. I think for sure that auto immune symtoms overlap. Your questions are good and so are the people who battered you I'm sure, they are just lacking in the understanding department. I do have to agree with you about this board though, thanks eerybody for living and letting live, who needs more stress and pain. Wishing everybody a great day. Sandra

[Sjenny]

My daughter worked as an aide to someone who was wheelchair bound with MS and that woman was angry and demanding most of the time - my daughter, who is very pleasant and hardworking, could not please her.

Doesn't MS cause brain lesions or scarring?  Maybe the lesions impact the personality of some patients.  How come brain injury never makes anybody nicer?  It's just not fair.

Sue 

[mompain]

It is sad that people can't be nice when someone is just asking for help.  Maybe you just need to make a copy of what you wrote here and let them know how you felt after their responses.  Sometimes people just don't realize that they are being like they are until someone points it out to them.

Needless to say, this site has never been anything but wonderful with all of the post that I have ever read.  Yes, sometimes I, and others, ask what some might consider a dumb question.  But, as I always told my students at school, the only dumb question is the one that you don't ask.  If you don't ask, you will never know and you will remain dumb on the subject.  Smart people ask questions and ask for help.  In that case, I would say that we have some really intelligent people on this board.  Don't you all agree with that???   I think so!!

The way that people are received on this board are what makes it so special.  The attitude of caring and understanding that I have seen here are what people in pain and who have health problems need.  No, we do not need a pity party, but we do need an attitude of care and concern and we definitely get that here.

I say we need to give a GREAT shout out to our moderators, members, and all the other wonderful people who are part of this board.  I personally thank you from the bottom of my heart for all that you have done to encourage me in my walk with Sjogren's and how to deal with it.

[wen.uk]

I say we need to give a GREAT shout out to our moderators, members, and all the other wonderful people who are part of this board.  I personally thank you from the bottom of my heart for all that you have done to encourage me in my walk with Sjogren's and how to deal with it.

Mompain I couldn't have put it any better.  Thank you.

[genko_b]

Yes, I agree. The moderators and members here work so hard to set a caring tone and yet emphasize information which will help us all with our struggles.

Genko

[eyeamdry]

Well, gee, a check of "that" website shows the nasty posts gone and one of my posts removed.  There is no indication the thread was edited.........not a sign of the not-so-nice posting lady.

I had no plans to write any more on the thread no matter who said what.  When I saw this all edited and deleted, it frosted me because of the ill will she put out there.  I just posted "why was this edited and deleted, and by whom, without any remarks indicating this had been done?"  I hope Ms. not-nice doesn't attack anyone else asking questions like that.   I'm outta there.  Must be that someone else thought her remarks were not proper, besides me. 

I'll stay around here, where we answer all questions.  I've seen posted here "the only dumb question is the one you don't ask."  Nuf' said.     Lucy