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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 Wed, 2010-10-20 - 13:49

Smallsock,

It is nice to know that there are "normals" out there who feel the way you do.  If there were more people like you, the world would be a much better place for everyone.

Your analysis is absolutely correct.  I do not leave the house on a bad day.  I've had too many seizures in public and too many injuries.  Being home alone just makes a bad thing worse.

People also make the mistake of thinking that we are complaining.  We are simply stating facts, venting frustration, and feeling hurt, angry, lonely, frightened...

It's a tough life without being called names.  I try to remember to use the word survivor instead of victim, but that does not change the fact that I have been victimised.  I, like Tadzio, refuse to stay that way and refuse to be quiet about it.

I hope you check out my blog.  Like my brain, it is a bit confusing.  Like my brain, the blog does many things at the same time, so it can be difficult for a "normal" brain to understand.  There is a consistent logic to it though.  You just have to spend enough time with it to see the patterns.

Thanks for being you.

Baruch Hashem.  Hoshia na.

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

Smallsock,

It is nice to know that there are "normals" out there who feel the way you do.  If there were more people like you, the world would be a much better place for everyone.

Your analysis is absolutely correct.  I do not leave the house on a bad day.  I've had too many seizures in public and too many injuries.  Being home alone just makes a bad thing worse.

People also make the mistake of thinking that we are complaining.  We are simply stating facts, venting frustration, and feeling hurt, angry, lonely, frightened...

It's a tough life without being called names.  I try to remember to use the word survivor instead of victim, but that does not change the fact that I have been victimised.  I, like Tadzio, refuse to stay that way and refuse to be quiet about it.

I hope you check out my blog.  Like my brain, it is a bit confusing.  Like my brain, the blog does many things at the same time, so it can be difficult for a "normal" brain to understand.  There is a consistent logic to it though.  You just have to spend enough time with it to see the patterns.

Thanks for being you.

Baruch Hashem.  Hoshia na.

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

Re: Keppra Has problems too, Whew!

Submitted by smallsock on Wed, 2010-10-20 - 17:48
All I can say is thanks.  You all are the ones who are educating me.

Re: Keppra Has problems too, Whew!

Submitted by sweetc20 on Wed, 2010-10-20 - 16:48
i was diagnosed with epilepsy a few months ago ive had it since childhood but my mother hid it from my father for years telling him i was trying to get attention. after she left it took 3 massive seizures in the park to convince my father i wasnt well ive been on 6 different medications in a 2 and a half month period i also have many smaller seizures during the day and terrible tonic clonic seizures at night that cause the inside of my mouth and tongue to swell from biting it. i react badly symptom wise to most medication keppra was my first it almost put me in the hospital my advice to anyone with epilepsy is to write everything down i do it helps my neuro to know what to do im on gabapentin now which has no effect and in a few months i will be entered into a special epilepsy center to be tested further. living with this disorder has really opened my eyes to myself as well as other people not everyone is so understanding i know that now. and i have to say i do not think everyone can handle this disorder and if they think they can clearly they are mistaken.  when people found out i had epilepsy they treated me as if they could catch it. it was terrible. i guess what they are really thinking is if i have a mental illness or if im slow they think that if i got this way the same could happen to them. my epilepsy worsend when i hit twenty and it was a shock for everyone to see me they way i am now. my dad is trying to help me cope one day at a time and to be positive and im trying epileptics have so much to deal with. depending upon the case epilepsy can be debilitating. others are just fine with medication. my experience has been don't judge others they are trying to cope just like the rest of us.

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