The TwiLyme Zone

For everything that is related to Lyme and/or Lymeland, but doesn't fit in the other forums. Speak your mind, connect, ask help, etc.
minitails2
Posts: 1001
Joined: Sat 3 Nov 2007 10:27

Re: The TwiLyme Zone

Post by minitails2 » Fri 16 Apr 2010 4:26

Spanky ( I just can't type that with a straight face!),

You wrote:
And you learn to see the difference between those that are trying to help others...or just lend their voices to the discussion...

...and those that are trying to achieve some sort of status within this godforsaken"community"...(if you can call it that)...those that are getting "off" on this and are in it for themselves.
I agree. I too have learned to tell the difference between those who really want to help and those who want to think they have more prestige than others. I suspect we both agree and disagree regarding who those people might be.

I also believe that there are some posters who hide behind a diagnosis of lyme when they may not, in fact, have lyme. I think some people are just looking for someplace to belong which I think is pretty sad.

User avatar
Spanky
Posts: 2762
Joined: Sun 20 Jul 2008 19:40

Re: The TwiLyme Zone

Post by Spanky » Fri 16 Apr 2010 16:43

"minitails2"Spanky ( I just can't type that with a straight face!),
Me neither. :D

Spanky wrote:

"And you learn to see the difference between those that are trying to help others...or just lend their voices to the discussion...

...and those that are trying to achieve some sort of status within this godforsaken"community"...(if you can call it that)...those that are getting "off" on this and are in it for themselves".
I agree. I too have learned to tell the difference between those who really want to help and those who want to think they have more prestige than others. I suspect we both agree and disagree regarding who those people might be.
Well, I think that what happened between myself and a few of your friends or allies, or whatever you want to call them...may actually have some larger implications in terms of Lymeland...as an indication of how some form their ideas of who is, and is not, an "enemy" of the Lymed peoples.

And from what I understand, the stated "mission" of the girls at Lymegate is to clean the place up and "TAKE NO PRISONERS".

So, I guess that they are on a "mission from God", so to speak...and whatever they dish out in terms of verbal abuse is somehow justified. Could be a problem, though, if you don't know who the enemies actually are.

To quote a famous line from the Pogo cartoon strip during the Viet Nam war..."we have met the enemy...and they is us".

But look what happened with me...first, they think I someone else. Clearly. And they start attacking on that basis. Trying to bait me into a confrontation.

And all I was doing at the time was asking questions of the Jones defense fund that NEEDED to be asked...even for the benefit of the Jones people...to get out in public necessary disclosures. Wasn't an attack on the fund or the legitimacy of asking for dollars, even...just questioning whether the public was being properly informed.

And Fin admitted that she deliberately disrupted what I was doing. Okay? She admitted that SHE didn't think that I should be allowed to ask those questions and tried to shut it down. And she did.

So...much later, she is actually attacking the Jones Fund, directly...much worse thaan I ever did...and I assume that we all now understand that I am not JS, Esq from Philly, right?

Soooo...from my perspective...I have to ask why in the hell I am still a "bad guy"? I mean...they completely got it wrong...and started "taking no prisoners" on someone who wasn't bothering them at all...and were victims of their own faulty thinking. They ASSUMED. And when I take exception to their attacks? You see? Off and mouth running...way, way, off...

So, hell...from where I'm sitting...they look like, well, less than coherent, shall we say?

And it seems to me that this is how a lot of this "evil" enemy stuff gets started...the whacky online jumping to conclusions.

And I suspect that is also how the IDSA became "enemies", too...along with a lot of the doctors researching the disease and trying to HELP people. An interesting, if somewhat disturbing process...



And so far as the "prestige" business goes...dunno exactly what you mean there...but I do think that some of what we talk about routinely does involve some specialized knowledge...whether in the sciences or law.

And that fact just doesn't seem to bother a lot of online posters. I have a law degree. A lot of what is discussed here sometimes involves legal principles that laypersons probably shouldn't be expected to understand. But someone also needs to explain that what the Wonk is saying is not accurate, or simply present another side of the picture. Likewise, some of the things that Fin took a run at...really had very little meaning or relevance in the overall scheme of things. She simply was simply out of her depth. Didn't understand the concepts she was trying to deal with...and she got all upset when I told her that.

I also believe that there are some posters who hide behind a diagnosis of lyme when they may not, in fact, have lyme. I think some people are just looking for someplace to belong which I think is pretty sad.
Well, speaking for myself, I don't care if I have Lyme or not. But I do have a note from my doctor, you see...they are the ones that say I HAD it. I would give a great deal if they would just change their minds, right now...

Personally, though, I think you need to be careful with that sort of thing. You don't have enough information to make those judgements about anyone.

And back to what I said originally about the verbal abuse and personal attacks:

...there are real people on the ends of these internet connections.

I REALLY don't think that kind of language is appropriate UNDER ANY CIRCUMSTANCES, do you?

But what I think that I can tell you with a great deal of confidence is that if all the girls have to do is to sit around and call other Lyme patients names or comment on what we say here...then that is considerably beyond pathetic.
Last edited by Spanky on Fri 16 Apr 2010 18:34, edited 1 time in total.

Cobwebby
Posts: 1716
Joined: Mon 29 Oct 2007 0:55

Re: The TwiLyme Zone

Post by Cobwebby » Fri 16 Apr 2010 17:47

Someone said:
I also believe that there are some posters who hide behind a diagnosis of lyme when they may not, in
fact, have lyme. I think some people are just looking for someplace to belong which I think is pretty sad.


Lyme Disease took me out of society, the workforce, the family- so I turned to the internet. At first I was looking for information and someone to connect or identify with. It was a profoundly sad time in my life.

But now? It's like, once I took the first keystroke, I am hooked on Lyme boards- it's familiar territory and the posters a familiar. I don't know if I still have Lyme Disease. My LLMD seemed to indicate that it is never really gone. Nevertheless I don't think LD is controlling my life -but posting on Lyme Boards is! :bonk:

I am well enough to work. I am well enough to do things in the community. I am well enough to enjoy life. I am not tied to a ridiculous schedule of meds-and yet-here I am on this beautiful morning which I think is pretty sad.

I may not, in fact, still have lyme. I don't know. My joys and sorrows seem to be linked to how people respond to me on boards.

I've been thinking that the only way to control this addiction may be to discontinue internet in my home- again. It was a necessity at one time(discontinuing service) and I felt a certain amount of freedom. It was kind of refreshing. And I got to my favorite place more often- the library. I was able to practice 'controlled' posting. :)

But as soon as I picked up service again-one keystroke and I was hooked all over again which is really sad.

I have entered the realm of the Twilyme Zone- and I'm scared- will I ever get my real life back?
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

User avatar
Spanky
Posts: 2762
Joined: Sun 20 Jul 2008 19:40

Re: The TwiLyme Zone

Post by Spanky » Fri 16 Apr 2010 21:32

"Cobwebby":
But now? It's like, once I took the first keystroke, I am hooked on Lyme boards- it's familiar territory and the posters a familiar. I don't know if I still have Lyme Disease. My LLMD seemed to indicate that it is never really gone. Nevertheless I don't think LD is controlling my life -but posting on Lyme Boards is!
I am hoping that some of us who are getting better and getting on with things will, if not stay, at least check in once in awhile to give hope, help and encouragement to those who are just beginning.

And, although I am feeling so much better now...I clocked my pulse at 115 yesterday just sitting still...so, yeah, when is this over?

Exactly?

Will it ever be "over" entirely?

Cobwebby
Posts: 1716
Joined: Mon 29 Oct 2007 0:55

Re: The TwiLyme Zone

Post by Cobwebby » Sat 17 Apr 2010 6:09

minitails2 wrote:Carol,
I'm okay. I only do things on-line I want to - too much of a hassle otherwise. I truly believe it is good for Fin to move on. I can't say if she'd agree or not. I am also very sorry about what happened to you although I don't pretend to understand what happened. I'm glad you're doing well here on LNE.

Thanks for your concern.

Mini
What happened on LG will never be understood -because it just plain doesn't make sense. It has brought to light how much of my life, thoughts, feelings are tied up on the internet when they shouldn't be. I'm feeling like it's time for me to cut the umbilical cable.

But as suggested by Spanky,I'll check in from time to time with this gang, since I've been exiled from our gang. There are so many veterans of Lyme Disease that most questions get answered. My personal experience isn't that much different from anyone else's.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

minitails2
Posts: 1001
Joined: Sat 3 Nov 2007 10:27

Re: The TwiLyme Zone

Post by minitails2 » Sat 17 Apr 2010 8:09

Cobby,
I wasn't referring to you when I said that there are people hiding behind lyme who may not have lyme. You have had a long road with lyme and have lots of knowledge and insight about lyme. You should do what you feel is right. If you want to keep involved with lyme stuff, I think that's just fine.

I also wasn't referring to family members who are often the caregivers to a lyme patient like Bea S is. I was referring more to people who join lyme websites who either think they may have lyme or know they don't but want to be a part of the "community." There seem to be a number of these people on several of the big lyme sites in particular but they can be found everywhere.

That's all I meant, Cobby,

Mini

minitails2
Posts: 1001
Joined: Sat 3 Nov 2007 10:27

Re: The TwiLyme Zone

Post by minitails2 » Sat 17 Apr 2010 8:16

Spanky,

I appreciate your reply, you obviously put a lot of thought into it. I think, though, that there are things upon which we will not agree. I'm tired of the Fin bashing, especially since she can't reply on LNE.

I can't explain what's going on at LG, I'm just a regular poster there. It's not up to me what various people choose to say.

In any event, I don't want to get involved in arguments between people. I was just stating my opinion that Fin was better off not being on LNE. That's all.

Hope all is well.

Mini

Cobwebby
Posts: 1716
Joined: Mon 29 Oct 2007 0:55

Re: The TwiLyme Zone

Post by Cobwebby » Sat 17 Apr 2010 15:44

minitails2 wrote:Cobby,
I wasn't referring to you when I said that there are people hiding behind lyme who may not have lyme. You have had a long road with lyme and have lots of knowledge and insight about lyme. You should do what you feel is right. If you want to keep involved with lyme stuff, I think that's just fine.

I also wasn't referring to family members who are often the caregivers to a lyme patient like Bea S is. I was referring more to people who join lyme websites who either think they may have lyme or know they don't but want to be a part of the "community." There seem to be a number of these people on several of the big lyme sites in particular but they can be found everywhere.

That's all I meant, Cobby,

Mini
Mins- no worries I wasn't taking the comment personally. I was just reflecting on "why am I still online so much?" I tend to post stream of consciousness. :?
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

User avatar
Spanky
Posts: 2762
Joined: Sun 20 Jul 2008 19:40

Re: The TwiLyme Zone

Post by Spanky » Sat 17 Apr 2010 16:04

"minitails2":
I'm tired of the Fin bashing, especially since she can't reply on LNE.
"Fin-bashing"? You must be joking.
I can't explain what's going on at LG, I'm just a regular poster there. It's not up to me what various people choose to say.
Well, we all choose the company we wish to keep, don't we? We are known in life by our friends as well as our "enemies"...

Years ago, I was invited to join a forum, and the type of negative comments that the girls seem to enjoy started to fly...I left.

And quickly.

And maybe those that stay and remain silent in the face of attacks on other Lyme patients are actually supporting that...by their continued silence and failure to protest?

Cobwebby
Posts: 1716
Joined: Mon 29 Oct 2007 0:55

Re: The TwiLyme Zone

Post by Cobwebby » Sat 17 Apr 2010 21:08

I'm tired of Fin bashing,too, anyone who dares to disagree with her or tries to reason with her or tries to stand up for themselves. I was not aware of the breadth of her distortions and incorrect assumptions until I fell prey to them myself. The only way she could muffle the sound of reason was to banish me.

Supposedly , by suggesting that people bashing was not going to attract people I was undermining LG and now they had to work double time to undo all the damage I caused. In other words, by suggesting they keep the trash talk off FB I tarnished their image. At least ,I know what makes ME the bad guy in her eyes .

It does make me wonder, now, about all the untruths that have been perpetrated about people that I assumed were legitimate.

Make no mistake-just because Fin is no longer posting on LNE doesn't mean she has moved on-all you have to do is look at the front page of LG to see that. She still seems to have quite an emotional attachment to LNE and Spanky ,in particular-even if it expresses itself in anger. As long as she holds onto that anger she has a connection.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

Post Reply