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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 lsdor81 on Sat, 2009-01-17 - 07:26

I'm a health professional, I have epilepsy.  I am not ashamed to say I have it, when it comes to job applications and they ask if I have a disability, I say "no".  I have to agree with you on many points, especially when it comes to those who cannot be treated.  I advise your critics to watch how Michael Moore took those 9/11 victims to get the treatment they deserved for free in a neighbouring country- "Sicko".

If there's one thing the majority of people don't like-it's the TRUTH.  It's as if ignoring the problem will go away, or by magic a miracle will happen.  I think the title should have been "Welcome to Reality"!!

Keep on telling it like it is.

I'm a health professional, I have epilepsy.  I am not ashamed to say I have it, when it comes to job applications and they ask if I have a disability, I say "no".  I have to agree with you on many points, especially when it comes to those who cannot be treated.  I advise your critics to watch how Michael Moore took those 9/11 victims to get the treatment they deserved for free in a neighbouring country- "Sicko".

If there's one thing the majority of people don't like-it's the TRUTH.  It's as if ignoring the problem will go away, or by magic a miracle will happen.  I think the title should have been "Welcome to Reality"!!

Keep on telling it like it is.

Re: Keppra Has problems too, Whew!

Submitted by zealot on Wed, 2010-10-20 - 13:53

You've got that right.

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

You've got that right.

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

Re: Keppra Has problems too, Whew!

Submitted by zealot on Tue, 2010-10-19 - 19:29

Tadzio,

Censorship is alive and well on this site and the internet.   I have caught someone, I am guessing Google, mucking my caches, red-handed.  That is how they bury content on the internet.  I am unusual in that I have the technical expertise to get it back.

On this site, they can take whatever they like off-line.  I've not read the details of the user agreement lately, but I do know they can and do remove content that violates their policies or that they deem "offensive."

I believe that much of what you and I both express veers off into that last bucket.  Idsor81 has it right.  People don't like the truth.

One of my solutions to disappearing posts is to post the same content under multiple headings and to always back up copies.  That way I can always repost and re-esablish links.  I keep an eye on my caches and often link directly to them.  This keeps the content from disappearing from the search engines.

And, oh yes.  Keppra.  It has big prolems.  The Teva generic and brand name Keppra are the only forms that are not simply poisonous.  I would be dead if a good pharmacist hadn't heard my pleas and special ordered the Teva for me.  The generics all dump their payloads immediately resulting in toxic levels dropping precipitously to sub-therapeutic levels causing more seizures than they prevent and the dreaded Kepprage, which results from toxic levels.

I've lost track of how many rants I've had so far this day.   I fell asleep and thought it was tomorrow morning, but, alas, it's still today.  Well, I'm still looking forward to tomorrow.

Baruch Hashem.  Hoshia Na.

Lots of Love,

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

Tadzio,

Censorship is alive and well on this site and the internet.   I have caught someone, I am guessing Google, mucking my caches, red-handed.  That is how they bury content on the internet.  I am unusual in that I have the technical expertise to get it back.

On this site, they can take whatever they like off-line.  I've not read the details of the user agreement lately, but I do know they can and do remove content that violates their policies or that they deem "offensive."

I believe that much of what you and I both express veers off into that last bucket.  Idsor81 has it right.  People don't like the truth.

One of my solutions to disappearing posts is to post the same content under multiple headings and to always back up copies.  That way I can always repost and re-esablish links.  I keep an eye on my caches and often link directly to them.  This keeps the content from disappearing from the search engines.

And, oh yes.  Keppra.  It has big prolems.  The Teva generic and brand name Keppra are the only forms that are not simply poisonous.  I would be dead if a good pharmacist hadn't heard my pleas and special ordered the Teva for me.  The generics all dump their payloads immediately resulting in toxic levels dropping precipitously to sub-therapeutic levels causing more seizures than they prevent and the dreaded Kepprage, which results from toxic levels.

I've lost track of how many rants I've had so far this day.   I fell asleep and thought it was tomorrow morning, but, alas, it's still today.  Well, I'm still looking forward to tomorrow.

Baruch Hashem.  Hoshia Na.

Lots of Love,

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

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