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Keppra Has problems too, Whew!

Wed, 01/14/2009 - 05:30

Whew!!  My concern over the minority of people who were insulted and/or put down when they got advice
to stop wallowing in self-pity at a time when they needed the most support really rocked the boat!

I know epilepsy is a real challenge;  I know society discriminates against people with epilepsy; and
I know that world governments don't offer enough health care for their citizens.  I have first-hand
experience with those facts, as most everyone here has varying amounts and different dimensions too.

Everybody's epilepsy is certainly different, as is everybody's life;  the common bonds between
everybody here is supposedly epilepsy and how everybody can share their knowledges and experiences
with epilepsy, for the better or for the worse, which is difficult or impossible to predict.

This internet site has great technical information and references, and it is a great site to start
research about epilepsy from;  the professional part is very reliable, and the public feedback part
gives great leads that may or may not be validated in the technical literature here and elsewhere,
and at times leads to very unique resources that wouldn't have been found otherwise.

The commonality of epilepsy's signs and symptoms offers very great support and relief amongst people
here, but, as everywhere else in the world, when a sign of symptom is a bit too unusual it becomes a
stigma amongst the very people here;  illustrating such a problem here leads to a prompt rebuke that
may be overcome and the stigma temporarily corrected with effort and then ignored if a minimal number
of people are involved.

In defense of all the anonymous people that were never or rarely explicitly identified in phrases like
"I'm not one of THOSE whinners," "THEY should discard THEIR professional victim hood, "THEY should just
accept the change and responsibility," "THOSE 'poor me' people better wake up," "I don't wallow in
self-pity like SOME PEOPLE," "why don't THEY accept common sense" etc., I politely tried to encourage
such phrases to be discarded to no avail.  When I made stronger requests I got a few insults, and
when I re-expressed a short version of my life story as a victim of epilepsy and societie's prejudice
against it, and how they shouldn't hold that against people here, the people literally attacked me
in words of violence and remarks of all kinds and "rules" of proper suffrage for epileptics came
raining down everywhere.  When I illustrated that such conduct could prove fatal to a "victim" seeking
help here, the post literally disappeared, and people running to see "the fire" were wondering where
they can find it.  The posts and visits to the particular blogs increased in great number, and sub-blogs
of the sub-blogs popped up.  While the post is still stuck in some blogs, with the bloggers really
complaining about it, I wonder if its going to disappear everywhere and why?

Is it because it illustrates a possible danger inherent in this site to people in dire health?  Is because it
illustrate the abuse epileptic children can receive?  Because it mentions sex and epilepsy? 
Because it cites briefly the destitute life on the street young epiletics may suffer?  The problems
with health care? Or because it criticizes the conduct of a few anonymous people on this site?

Comments

Re: Keppra Has problems too, Whew!

Submitted by zealot on Thu, 2010-10-21 - 00:48

Hi, everyone.

I had a bunch of seizures yesterday/today so I'm having trouble writing, yet hypergraphic.  I am also absent-mindedly reminiscing like in the following post.  I wrote it about a month ago.

http://psychout.typepad.com/blog/2010/09/nys-omh-google-search-watch-new-york-state-office-of-mental-health-whoops-there-it-is.html

I had another bad day(s?).  A bunch of seizures.  I am exhausted and sad.   I deliberately didn't get this post seen by the search engines.  I've had time to think about it now and I would like people to see it.

As long as I don't go public with this stuff I am not safe.  The only way to be safe is to get it out there.  Then there will be no reason to silence me because it will be too late.

Baruch Hashem.  Hoshia na.

Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help!

Hi, everyone.

I had a bunch of seizures yesterday/today so I'm having trouble writing, yet hypergraphic.  I am also absent-mindedly reminiscing like in the following post.  I wrote it about a month ago.

http://psychout.typepad.com/blog/2010/09/nys-omh-google-search-watch-new-york-state-office-of-mental-health-whoops-there-it-is.html

I had another bad day(s?).  A bunch of seizures.  I am exhausted and sad.   I deliberately didn't get this post seen by the search engines.  I've had time to think about it now and I would like people to see it.

As long as I don't go public with this stuff I am not safe.  The only way to be safe is to get it out there.  Then there will be no reason to silence me because it will be too late.

Baruch Hashem.  Hoshia na.

Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help!

Re: Keppra Has problems too, Whew!

Submitted by 3Hours2Live on Thu, 2010-10-21 - 01:28
Hi Zealot, Something might have hit someone's "buttons", as the "report Abuse" has been actualized and a couple postings have already been "Flagged". The truth must be an "Abuse", and/or they're after my responses as having too much truth too!!! Some Catch-22 might pop up. Whew!!! Away from my clusters, some of my seizures work as a relief, while many of my short ecstatic seizures have somewhat of a nearly immediate "hangover" that I can often emotionally "induce"(?) away. I hope your seizures don't bunch up with dire intensity and frequency. I'm lucky enough that extra Keppra will quickly impede build-up of my cluster bunches. Lots of Love, Tadzio

Re: Keppra Has problems too, Whew!

Submitted by zealot on Thu, 2010-10-21 - 08:02

Tadzio,

I've noticed a lot of offensive things on this site, but your posts are not among them.  I cannot tell you how many fora there are asking people to participate in "research" and contact authors directly.  This is in direct violation of the sites stated policies.

I have reported nyu-epi twice and it is still here with posting privileges, yet we are censored.  Go figure.

I'm glad it's not me losing it.   I thought I saw posts going off again on again.  You criticise the "powers that be," not individuals on this site.  What you do is not offensive.  The personal attacks that are heaped on you; those are offensive.

epi-help (less?), when are you going to start doing your job?  You are so busy censoring us that you fail to protect us.  You are more concerned with protecting the dubious interests of those who run this site than the vulnerable people you claim you are here to serve.

You find the Harberview Horror and my story to be offensive and censorable content.  Why?  I was put in four point restraints for the crime of having epilepsy.  I can't work anymore so  I don't have the luxury of encountering discrimination in the work place.

Stories like mine and Tadzio's should be front page news.  We are poster children for the ravages of improperly treated epilepsy and discrimination.

If you really wanted to make things better instead of selling poisonous meds and expensive medical equipment you would be helpin us, not censoring us.

Please reconsider your positions.  epi-help and webmaster claim they are fellow epileptics.  How about treating us the way you would lke people to treat you?  I only started calling you epi-helpless and RingMaster after you guys went after me for telling the truth.

Here's the link to my latest post:  Epilepsy Carpe Diem:  The Jewish Zealot Lunatic Leper Creates Images of Auras

http://psychout.typepad.com/blog/2010/10/epilepsy_google_health_mayo_clinic_medline_plus_webmd_www_epilepsy_com_en_wikipedia_org_wiki_epilepsy_www_epilepyfoundation_o.html

I hope I don't get "spam, slam, thank you, m'am"ed.

Baruch Hashem.  Hoshia na.

Lots of Love,

Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help!

Tadzio,

I've noticed a lot of offensive things on this site, but your posts are not among them.  I cannot tell you how many fora there are asking people to participate in "research" and contact authors directly.  This is in direct violation of the sites stated policies.

I have reported nyu-epi twice and it is still here with posting privileges, yet we are censored.  Go figure.

I'm glad it's not me losing it.   I thought I saw posts going off again on again.  You criticise the "powers that be," not individuals on this site.  What you do is not offensive.  The personal attacks that are heaped on you; those are offensive.

epi-help (less?), when are you going to start doing your job?  You are so busy censoring us that you fail to protect us.  You are more concerned with protecting the dubious interests of those who run this site than the vulnerable people you claim you are here to serve.

You find the Harberview Horror and my story to be offensive and censorable content.  Why?  I was put in four point restraints for the crime of having epilepsy.  I can't work anymore so  I don't have the luxury of encountering discrimination in the work place.

Stories like mine and Tadzio's should be front page news.  We are poster children for the ravages of improperly treated epilepsy and discrimination.

If you really wanted to make things better instead of selling poisonous meds and expensive medical equipment you would be helpin us, not censoring us.

Please reconsider your positions.  epi-help and webmaster claim they are fellow epileptics.  How about treating us the way you would lke people to treat you?  I only started calling you epi-helpless and RingMaster after you guys went after me for telling the truth.

Here's the link to my latest post:  Epilepsy Carpe Diem:  The Jewish Zealot Lunatic Leper Creates Images of Auras

http://psychout.typepad.com/blog/2010/10/epilepsy_google_health_mayo_clinic_medline_plus_webmd_www_epilepsy_com_en_wikipedia_org_wiki_epilepsy_www_epilepyfoundation_o.html

I hope I don't get "spam, slam, thank you, m'am"ed.

Baruch Hashem.  Hoshia na.

Lots of Love,

Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help!

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