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WARNING: You Think This Place is Seriously Fucked Up Already?

Posted Jan 18 2013 12:00am

I subscribe to an online newsletter from an Epilepsy Organization. Thus, it is “forsooth.” Two weeks ago there was a great big “WARNING” like in my title, except in their title, things continued in upper case.  I would have been a fool to try and hope with all strength and power that this wouldn’t happen–but I am a fool and I did hope.

Exactly like a year and a half ago.  June 2011.  The suppliers could not get my Clobazam into any pharmacies–or at least not enough of it.  I need it to treat my Typical Absence Status Epilepticus.  The supply chain went dry and I had to quit cold turkey.  It damn near killed me and I’m still trying to recover.  A year and a half later.

 Work with Non-Arsey Neuro.  We came up with the most pathetic strategy  this happened all over again.
 Call my pharmacy to see what’s happening on their end. I did today as I’m due for all of my refills.

My pharmacy is already screwed by the suppliers.  However, for at least the next month (of my new script) they have enough in stock. Or so they said.  I only have a month’s supply in my bathroom right now.  Last month’s.

I contacted my old pharmacy who basically held my hand through the hell of losing it before.  They don’t see a problem…yet? They are going to try and start ordering as much as they can, as fast as they can, and set it aside for me.  However, the supply chain could disappear within days just like it did before.  They’re going to keep me constantly aware of everything just like last time.  And vice versa.

My current pharmacy is not that loving and caring.  Fat chance.  If they run out of it and can’t get more? That’s it. They can keep trying but obviously I will probably have run out of it by then.


I’m so unbelievably scared right now.  If I lose this a second time? The results could be devastating.  I’m not trying to sound like a Drama Queen.  I’m actually being very serious.

Every other Anticonvulsant other than what I’m on (and what I’ve tried) will make it worse.  Except for two.  Two that I’ve never tried and who knows? Plus, a very whacked out drug that treats a shitload of other things, but it still could be tried. Along with the shitload, there is an indication for catamenial epilepsy. However, could I actually convince a Neurologist to go that far?

I’ve been crying all day while trying to “problem solve.”  

Gravol too, as I felt like I’ve been going to puke up (and out) my entire gastro system.  Actually, time for more? I’m about to start crying again and barf…

My sleep’s gonna be a mess, but sorry! Take one more Valium than prescribed? Just for today?

So yeah.  This place and everywhere else I am, may get exponentially, seriously, more fucked up.  Because I will be.

Ah, I’ll add all of my diagnostic Categories as they got exponentially, seriously more fucked up when I lost my Clobazam the first time.

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