There’s “talk” in the media about Big Pharma phasing out some drugs that aren’t used so much, ones where there are alternatives, things are becoming more difficult to manufacture.  They need to save money.  Oh, dear god.  My precious Clobazam/Frisium.  I still need to increase the dose as I’m still seizing, still sick.

Nobody gets it though! For the Typical Absence Status Epilepticus (or at least my case) there are no alternatives! The only ones who understand are my medical team and pharmacists (and some Neurologists if they’re on the ball?) Clobazam is a benzo used specifically for epilepsy, and the best for catamenial problems! Catamenial is my problem!

Big Pharma isn’t saying diddly, of course.  Saying diddly? Saying something that’s gotten me a little shaken up if the media (well, it’s the media) is correct? My pharmacy said I was the only customer who filled scripts for the med! A drug not used so much?

Well, I already knew my options were limited from the start.  I’m already on two Anticonvulsants and there are a whackload more that are contraindicated.  They exacerbate either Absence Seizures and/or TASE and/or even my IGE (idiopathic generalized epilepsy–no known cause, spreads to entire regions of brain, blah, blah…)

I already tried one before the Clobazam.  The Evil Depakene.  I don’t want to talk about that, as it has traumatized me for life.  Well, alright.  Seriously, though.  It was UGLY! From the trauma, I can’t remember what I wrote exactly, but you can do a search if you’d like.

Two other Anticonvulsants are left.  Ethosuximide/Zarontin is one.  I would rather not touch one pill as the list of side effects is HUGE.  It could turn out to be The Evil Zarontin!

The next is Levetiracetam/Keppra.  As far as I’m concerned, Keppra is one of the most useless Anticonvulsants on the planet.  Granted, I’ve never tried it.

First, it is one of the LEAST understood Anticonvulsants for mechanism of action.  In fact, I will venture to say that it is not understood period.  At least with others you might get a hypothetical, but with Keppra, “We have no clue.  Take it if you want.  Actually, here.  Take these for free.  Even we can’t tell if they’re the real thing or placebo.”

It also has quite the lovely list of side effects.  Yeah.  That’s a good choice.  I think I’ll take a drug that won’t do squat, but will make me go insane.

So in reviewing things, at that point I was feeling pretty dejected.  Would I manage to finally get all fixed up, just in time for Big Pharma to rob me blind again? Then I saw it.  How did I miss it in the journal article? I guess I was too wrapped up in the above two and all of the other Anticonvulsants.  I looked it up, and WHOA! Now, this is one FREAKADELIC drug!

It’s called Acetazolamide.  If you don’t click on the link, it’s like, what is this thing? Some kind of “Superdrug?” How can it be used for:

1. Glaucoma
2. Dural Ectasia (a symptom associated with Marfan’s Syndrome)
3. Central Sleep Apnea
4. Acute Mountain Sickness
5. Congestive Heart Failure
6. Drug Induced Edema
7. Decrease in CSF in Idiopathic Intracranial Hypertension
8. Periodic Paralysis

…and…drumroll please!

Absence Seizures, Myoclonic Seizures and CATAMENIAL EPILEPSY!!!

There’s a bit about an “allergy” regarding the compound of the drug.  I say I always have it in hospital, but it happened when I was about 18 or 19.  Also, perhaps different.  I won’t bother getting into that, though.  Let’s not jump the gun.

I learned another new word today regarding my epilepsy and seizures, too.  This is SO cool.  I always thought it was a proprioception issue, but no.  When I seize (and definitely if it’s more severe) I hold my left arm up against my side, and sort of across my chest and stomach.  This is when I’m stumbling around with Wonder Cane or his brother. It’s called Supination.  From a Neurological perspective, it totally makes sense.

So, if it’s working for me, it should be for you.  The ftp LIED!!!

“Fallen Angel” by Alphaville

Yesterday, it took me a full day to do a few things that would only (should only) have taken a few hours.  And speaking of hours, several days ago I was on the phone with their Customer Service Dept.  I thought we’d made some progress as the damn thing wasn’t even set up properly on baby MacBook’s Network.  Thank you ISP employees.  Thank you product too, as you came with no instructions.

They didn’t listen to me regarding the the further Network problem (as they couldn’t get any further than what we did as far as Macs.)  I kept telling them what I think is the problem.  If it exists on my end at all.  I’ve done everthing.  Even REDONE everything on their end! I even repaired my HD (good anyway as I thought I was going to lose it.)  All repaired.

But the weirdness is this.  Somehow, in trying to secure a connection with my Airport over a year ago, one has “stuck.”  The data stick connects to it.  I never could do it with my Airport (which of course I’m not using now!)

I’ve tried to make it inactive, delete it, secured the changes, done.  Delete, gone from baby MacBook.  And so, restart everything, even to the point of the stick’s software, pulling out the SIM so it “knows” the change.  Then, unbelievable!

The Data Stick is shown on my Network.  It always has been.  But when I’m given the prompt for my password to connect to it (since I locked up the delete) the Stick brings it back!

And what’s even more bizarre is that it says I’m connected to that Network via an Ethernet Cable. O_o

I am using a USB Hub because the ports are too close on baby MacBook, but that is NOT an Ethernet Cable to a Network! And it’s a goddamn Data Stick!

Finally, it MUST be their problem somehow.  The Stick or the SIM is defective? If I try to connect to it via my own Network Settings on baby MacBook, I get an error regarding them?

I need to do this today.  Otherwise, I may not be able to for a while.  I’m heading straight into the vortex of my Typical Absence Status Epilepticus right now! I guess the increase to 80mg isn’t really doing the job? Well, maybe a bit better? Just have to see as this is the first day of the insanity.

I should take a bath.  Where’s the tub? Have to write up my long list of notes for these fucktards so they can get what’s really going on, too.

Ugh.

Ah, the joyful holidaze.  Such sweet, blissful memories.  Ahem.

Christmas can be odd for me.  That also includes the point leading up to it.  I can’t always tell what to predict, yet sometimes it’s like I have a crystal ball disguised as a snow globe.  What I feel could be either neutral or downright hellish.  This year, my prediction was: Downright Hellish.  Was I correct? I’ll let you know.

The memories.  It’s not always about the childhood trauma anymore.  Nope! I’m a big girl now! Other years have passed, where arguably, those experiences outweigh the things I recall as a kid.  At least those that the Dissociative Amnesia still doesn’t hold so tightly in its grasp.  I do remember some things.

I have an older sister, and of course as all children do, we’d wake up at ghastly hours filled with excitement about our pressies.  Our stockings were always placed full at the bottom of our beds.  Was that some kind of “ruse” to keep us so busy, we wouldn’t bust out of our bedrooms like total maniacs? If so, not a very successful one.

We were happy to wait.  Neither of us were stupid.  We knew it was around 0500hrs or something! Not to mention, “Santa” had arrived, and we were already on such high amounts of adrenaline, we’d only had a few more hours to sleep than…yeah, those adult people who were supposed to raise us.

Nonetheless, Male Adult really required no sleep, so he came down shortly after we did.  But that didn’t matter.  We’d have to wait hours for Female Adult.  Okay, non-bio dad and mom.  Nobody could get her out of bed because she was so depressed.  So, maybe we’d get around to opening our pressies close to lunch? Then she’d go back to bed.

Pressies.  I never got what I wanted.  I could never understand why.  Even at about six-years-old, wee Aspie PA would write out her Christmas list in this manner.  I would compare the prices to keep the items evenly distributed financially.  I also kept the prices reasonable.  I knew the household budget, so I never asked for anything that was astronomical in cost.

Yes.  At that age.  It is called (beyond me being an Aspie) growing up in a very traumatic and abusive household.  Where you must parent your parents and try to maintain (if lucky enough to create!) order out of complete chaos.  Because that is your job.  No, more than a job.  For me, it was my destiny.  I was deified by my mother, due to her religious delusions.  But that’s another post entirely.

We were always late for every family get together.  Even if it wasn’t Christmas.  We could not get my mother out of the house! This was no doubt the (hypo)manic stage hitting, plus toss in some OCD? She’d constantly check if ovens, irons etc. were turned off.

And by late? I mean about 2-3 hours! Sometimes, dinners got cold while everyone was waiting for us, the other children in the extended family got so cross and upset.  I know damn well all of the adults became MORE than cross!

The shame.  The embarrassment.  Plain and simple, our family sucked and my mother was a total lunatic.

Oh, but let’s quickly put those skeletons back in the closet! I see them parking the car! They’re here! Well, those people are out of my life now anyway.

So, back to my “prediction.”  It was 50/50.  More or less.  60/40? Basically, things weren’t so bad during the day.  However, when the night came and it was dark? Things got ugly.  Let’s not forget that this also continues for at least another week.  So, whatever form of torture being endured, ensues until New Year’s.  Maybe even long past that?

Ah! One more thing.  Whoville didn’t have a happy ending either.  The Grinch is still sticking pine needles up through my mattress and pillows while I’m sleeping.

I wanted to try and explain why I couldn’t do it via my feelings, instead of repeating the simple phrases: “I’m sick” and “I’m scared.”

However, before we proceed, there are some things you should know:

1.  This is all about me.  It has nothing to do with any of you as readers.

2.  I’m still a bit unstable in terms of making an initial increase of the med.  That means, I may be prone to more “disappearances.”

3.  I was/am not like this on a constant basis, yet I didn’t/don’t have much control.  See #2 and as you will read.

4.  I will try not to write in a clinical manner (as I tend to do a lot.)

5.  I have not felt a lot of these feelings before, and in such a fashion, so I actually think I deserve an award for staying offline, ironically.

6.  THIS IS LONG.

These feelings were intense.  At times, I was so desperate for any kind of relief.  I really felt my brain was just not capable of handling so much.  A see saw, a roller coaster? Which of the three would be crushed first? Things would change so fast. Even from one second to another.  It was unbearable (and still can be.)  These feelings can hit immediately.  Right out of nowhere.

Here, I will insert clinical.  This is regarding my epilepsy if you don’t know.

I felt lonely, isolated, confused, and so full of self-doubt.  At times, those feelings of self-doubt would turn into self-loathing.  They would grow even larger to loathing the entire world and everything in it.

I was agoraphobic.  Sometimes, that agoraphobia would spill over into feelings of paranoia.  This would be why I would have to stay away from Twitter, for example.  It would be overwhelmingly triggery.

It was like there was a huge party going on, and I never got my invitation in the mail.  If decided to go anyway, I would walk into a house with massive amounts of people whooping it up, loads of helium balloons and awesome music playing.

There would be a never ending flow of champagne or any other beverage of choice.  Even if I dared to say one word, the room would fall silent.  Everyone would stare at me like I had three heads with pig snouts, my left arm had just been sawed off, and I smelled like I was wearing a dirty diaper.  Needless to say, I would run away screaming through the host’s front door.

There would be the days where I would be incapable of leaving my bed due to such deep episodes of depression.  All would be dark and I would continually ruminate over certain things.  I could not stop no matter how I tried!

I would only get up to drink some water and go to the bathroom (I didn’t even bother with my blessed tea.)  I’d smoke endlessly, because I couldn’t do anything else.  No cognition or concentration beyond the rumination.  No TV, DVDs or books.  Are you kidding? Just enough room for some good ol’ PTSD.

My PTSD.  It shot to such insane levels that I would have tearful, emotional outbursts at the most benign things.  Sometimes, they didn’t even make sense! I freaked out when I saw a piece of fluff on the floor! I became so hypervigilant, I can’t even count the number of times I actually saw the minutes change on the clock.  I would jump in fright if the lightest thing touched my skin—real or imagined.

There were times, I would sit immobile.  I just couldn’t move.  I think during a couple of them, I simply felt “numb.”  Oh, what precious times, they were! To just feel numb.  A tiny respite. It didn’t matter how tiny, just that I could experience it.  I could feel nothing.  Nothing at all.

My Asperger’s also continued to grow exponentially.  How many periods of being non-verbal? I don’t mind being non-verbal, but one time I felt so embarrassed about it! Never am I embarrassed about any of my mental health issues! I’m a bloody Stigma Buster!

I began to have more and more meltdowns, and then began to self-flagellate for having them.  I kept beating myself up for being a “baby.”  The worse the meltdowns got, the more violent I became.  This vicious and painful cycle could only be stopped with immeasurable time.

When the meltdowns stopped, then, a new cycle would happen.  I’d start beating myself up, for beating myself for having Asperger’s.

Not surprisingly, there were continual thoughts of suicide and self-harm (cutting.)  I did no cuttings and went nowhere near suicide.  I just endured the feelings as long as they lasted, and eventually went away.

Undoubtedly, the worst negative thought I had to deal with was feeling homicidal.  Now, I think you all know that I would never kill anyone.  At least I’d like to think you wouldn’t and nor would I? Nonetheless, the fantasies and scenarios, the situations.  The plans I mapped out, and who would be my targets.  And why would they be my targets.  Very intense feelings, indeed? Moreover, even worse when you are not afraid of carrying out all that you’ve envisioned.

So, is anyone still with me?

As I mentioned in the points at the beginning, I wasn’t like this all the time.  Just a lot of the time?

There were days when I’d get up in the morning, have my tea and be full of plans and ideas; what I’d like to accomplish that day.  But then, they’d all be dashed.  As things moved into the afternoon, I couldn’t do a thing.  This became so repetitive, that it knocked all hope out of me.  I was defeated.  Over and over.  Day after day.  Every day.

I guess I’ll end things now.  Does that give everyone or anyone an idea why I was so scared to go online?

This blog was launched on November 23, 2006.  Five years up and running.  I have no idea how or why.

Thank you so much to everyone.  It doesn’t matter if you are old or new, a lurker or someone from those past five years.  This blog would not exist unless a single person (excluding myself) had ever read it.

Bless,
PA

Right then.  We need need to go back in time a bit to explain, this; my next pathetic excuse for not getting back to you all by now.

I had a couple of adventures with Accessible Transit this past week.  It was all pretty exciting.  Very unexpected too, so that just added to the adrenaline rush.

I had a big ass Simple partial seizure while waiting to be picked up.  Thankfully the driver soon arrived to hold me as it was one of those “whole-body volcano” types.  My consciousness was okay though.  I could get my words out to him in brief.  We were even laughing about it later.

I was like, “Great timing, huh?” He told me as soon as he saw me, “Oh! I guess that’s my pickup! Look at her!”

But that’s not the real problem.  I had to use them again the next day.  When getting out of the door, I couldn’t get the door shut.  I pushed it as hard as I could, but then lost my balance with my cane a bit.  WHAM! Wee PA hand, get caught in very hard door.

I guess I didn’t scream loudly enough, as the taxi driver just took off.  If something happens, they’re supposed to see if you’re alright first, and then report any accidents or incidents that occur.

I went to my appt, bandaged a small cut and started icing immediately.  Things were already starting to turn purple faster and faster before my eyes.

I had some extra time before the pickup for my drive home, so I ran as fast as I could with Wonder Cane’s brother (not very fast) to a drugstore close by.  I bought a Tensor bandage and a sling.  A big “DON’T MESS WITH MY HAND AND ARM!” sign, and also good for Ms. Klutzy who could bang it around all over on her own.

And thus, typing is difficult.  I am trying to hold up my tiny phone to write this, and my left hand (the injured one) will have none of it.  It is merely holding the other side! If it didn’t hurt so much, it would slap me across the face if I tried to make it type!

So once again, I suck.  I could try “one handed typing” with all of you on my blog, but I really don’t feel comfortable with that.  I don’t know any of you that well, really.  So, apologies there, as well.

EDIT: It looks like I’ve now had to do some one handed typing with myself.  This wouldn’t complete several actions to publish on my phone.  So, now I have baby MacBook out with all its gear.  I can use the hand a bit, but not for long.  I’ll have some tea, then unwrap it and see what happens.  If nothing happens on my blog, you’ll know why.

Thank you, any patient and precious readers that I have left.  Seriously.

Signed,
PA who keeps screaming wolf.

“In The Waiting Line” by Zero 7

Also, it may be broken as I can’t play it.  But the link seems in tact.

I checked and we did have more recent contact than months but it was brief. Very.

I learned quite recently there was a pub nearby where he was spending a lot of time. To go there was my next plan rather than trying to track down his parents I’d never met in the city.

So fucking much for that.

I need to look for any obituaries. *crying now* My “source” is good but did he die when? Or was that the funeral date?

And the cross. His cross. Never, ever picked up from me (always wanted it left with me?)

This may sound awful but I just can’t bear to face his devout Catholic mother. Not as some stranger (Jezebel) who has his cross.

I will keep it. It seems he always wanted me to do so over so many years. Why I have no idea.

Selfish perhaps. But my decision. I feel I “need” it to remember him.

Bless you, sweet G. I love you and never stopped.