Dear Sunwest, reg123....an open letter

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Dear Sunwest, reg123....an open letter

Postby cheerleader » Sat Dec 26, 2009 11:59 am

You have given enough information on here for the TIMS resident Miss Marple to put together your story. I'm a mom, too...and my husband has MS, and I care about this community. I cannot imagine the internal torment and suffering you and your family have been thru. Reg/sunwest has started many webpages outlining the horrific treatment of her son, a young man who had tumefactive MS and died in a UHN hospital in Toronto, Canada. Reg/sunwest believes he was murdered for his organs and had a lawsuit dismissed. She is looking for US media interest in the story-

http://prommpt.org/index.php?pid=31

I'm not sure whether it is rage you're venting here because some MS patients and caretakers are on here sharing and helping each other, and it hurts because this came too late to help your son. That would be understandable. But you need to let us get back to our conversations and get some help. Your angry, accusatory posts here are not helping anyone. And if you're on here looking for US media coverage...believe me, this is the wrong tree! We've been talking about CCSVI for a year, and the US press isn't very interested.

So, my thoughts are with you- Mom to Mom-I wish you well. I've been very open with my identity on here, so I hope you know I'm not the "enemy"...just another woman, human being, mother and wife.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby cheerleader » Sat Dec 26, 2009 2:18 pm

Bump....please read and get some help.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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I agree.... seek help!

Postby dialed_in » Sat Dec 26, 2009 3:52 pm

Pretty sad legacy that you're leaving your son with all of these posts attacking the very people that are trying to find a cure for the condition he suffered from.

If you even had a son that had MS, which I doubt.

If he did, all you are doing now is making it harder for those with MS to get anyone to listen to them about CCSVI. I'm sure your son would be embarrassed and disgusted by your posts.
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Postby cheerleader » Sat Dec 26, 2009 5:10 pm

dialed-
I've been on here over 2 years, and seen a fair share of trolls and folks interested in picking fights. I'm not one for fighting or making nasty comments- more interested in how we can help each other. But at a certain point, you have to say enough. This is a very tolerant community...we have believers and non-believers -in a higher power or CCSVI :)
We have MS patients and those who love them. We have a lot of people looking for answers...and we've been able to help each other along and made some good friends in the meantime.

NHE is an incredible moderator...but I felt it was time to get the back story...this individual has several pages on the internet, and posts on many different MS and health blogs-
http://www.mashcan.org/
She needs to find another place to vent. Not on the CCSVI forums.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Johnson » Sat Dec 26, 2009 5:45 pm

Thanks for drawing the line, but being compassionate about it, cheerleader.

It is obvious, from the writing, that reg613/sunwest/... is in a lot of pain and confusion. Having experienced a lot of those things myself, I had no thought that it was a standard troll, but rather someone in dire need of intervention and empathy. I can do little about the intervention, but I can, the empathy.

This is an emotionally dark time of year for many people. I hope that we all have someone to turn to for hope and kindness. (don't go to thinking that I am soft, reg613. No one gets my body parts)

I appreciate the graciousness extended by NHE, cheerleader, and others.

Today was longer than yesterday. The light is returning.
My name is not really Johnson. MSed up since 1993
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Postby Lyon » Sat Dec 26, 2009 5:56 pm

.
Last edited by Lyon on Mon Nov 21, 2011 9:14 pm, edited 1 time in total.
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Re: press delete. you may!

Postby Johnson » Sun Dec 27, 2009 2:13 am

sunwest wrote:Oh dear, castigations from the blessings diva.

Please delete the account "sunwest." It's hard to find internet sites that aren't dominated by the passive aggressive born-againers. You people are everywhere and in order to try to improve anything the rest of us have to get past you first. Hence our efforts.

The thing we have to do is have websites without comment sections. That will take away your pulpits and things will be a lot more progressive.


No one notices, nor suspects, he who is not obvious. Know your enemy, but know yourself better.

I just made that up, but Lao Tze probably said it a long time before me.

reg613, or whatever, you are being tiresome. If you really want to disappear, just quit posting here. You will be forgotten within days, if not hours. But perhaps being forgotten is not what you really want. Huh?

You are not the first, or last, who has run into iatrogenesis (ie: most of us here), nor to an unsympathetic, or incompetent court. We here don't really give a flying fig what you think of our motivations, or personalities, so kindly fig off.

You are deleted from my consciousness - which wants to focus on my own recovery, and not your torment. Quit the narcissism.

/empathy
My name is not really Johnson. MSed up since 1993
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