Archive for June, 2011

Hi Folks,

First, thank you very, very much for your concern and support while I’ve been jerked off my Clobazam/Frisium.  It means the world to me.

I promise I will get back to all of you on this blog.  I will open up all my emails, Twitter Follows, talk on Twitter even, the whole lot.  I just can’t right now.  I’m too sick.  I can share what pretty unbelievable things have happened, as well, when I come back in better form.

But as the post title says, want a bit of knowledge? A great (the greatest?) example of how I really am “crazy” sick.

I have just duct taped all of the locks in my apartment.  I am not joking.

I’m having Complex Partial seizures and wandering around outside, completely unconscious in the middle of the night.  Yes.  I am now being forced to lock myself up in my own living space so I can’t escape.

I was going to write about this yesterday but too sick.  Still sick.  Hours and hours waiting and not admitted.  At least I tried.  So, no option for help there.  Only option is to keep working with the pharmacies for Clobazam/Frisium.

Forgot had backdoor possibility contact to closest hospital’s inpatient pharmacy for Clobazam.  Said they had in stock but didn’t know of any problems with suppliers.  Going now.  If they run into problems then will just be discharged? Geez had to find info on my own.  Whatever.  Got it anyway.

Going to take forever to pack and more stuff.  Eyes so blurry can hardly see and so shaky.  Hopefully can even make sense to paramedics and even ER folks.  So maybe gone for while.  Idk.

Okay.  Bye.  Thanks to all.

I don’t even know what to call it.  Ugliness? Or maybe I’ve got the direction wrong.  I’m way at the bottom not the top of things.

It’s been a week off the Clobazam/Frisium now.  I can’t believe what’s going on.  What’s happened.  I may have used up all of my words and thoughts for that last comment so maybe I’ll just type here.  Tell you.

Yesterday was the worst.  For my head anyway.  But my body? Food’s now gone.  Out of the question.  Not exactly “proper dinner/table conversation” but the last time I tried to eat (a few days ago), I completely lost all bowel function in my pyjamas.  Seriously.  As soon as I put down my measly meal, I felt a stomach cramp, and…

Oops.  Wee PA had wee accident.

Right now? I’m drinking a bit of tea but I kind of don’t care for it.  In fact, straight for the ginger ale after I had half of my first tea.

My head? I was too out of it and retarded to realize I was having Simple partials all along.  At least with that Thermoregulation jazz that happened after my first tonic-clonic.  Right.  Those would be Autonomic.  Then some pin-prick feelings.  Yep.  Another type.  Then another obvious one a few days ago.  Olfactory.  And yesterday.  That was a beauty.  A big, fat one.  Right on the heels of…

Let’s talk about my sleep.  One Simple partial.  One tonic-clonic, and yesterday.  Another tonic-clonic and later in the morning, the eyes start blinking, I’m going blind, the jaw starts twitching, epigastric rising.  Virtually non-functional all day and today, still pretty goddamn rough.  Wonder Cane to walk everywhere.

It looks like some pills are coming in from suppliers but nothing concrete from them all still! I’m not fucking touching one pill until I can find out if they are available inpatient! I can’t re-start and then quit again.  No one can fucking tell me! I fail to understand why this is so bloody difficult.

What? Short of me crawling into Emerg. on my hands and knees, how am figure it? If they don’t have it, I may as well stay here kick’in and a’freakin’ and a’thrashin’ all about in my own bed! That’s the problem.  They won’t be able to do anything for me.  At least my place is mine and I won’t have to deal with the noise and chaos and insanity of a hospital.  I have enough insanity going on by myself, thank ya very much! I don’t need to share yours in your bed beside me.

*pauses to breathe*

I was thinking yesterday that I now have a MUCH greater empathy for those who have more severe forms epilepsy.  Even intractable.  I have NEVER seized so much in my life and with such unpredictability! I suppose I should consider myself lucky because at least I know the reason why.

I had mentioned before that after several weeks of being offline after moving, I didn’t know how to come back.  It was in a brief post that really didn’t say very much.  Just that I didn’t know how to come back, a lot had happened beyond my control, I’d made a list, and I was freaking out about merely touching my blog.

Well, I’m obviously back.  This is the third post I’ve written in a row for three days? That would seem to indicate that I’m actually back.  Yes?

I’m not sure.  Last night, and earlier this morning (i.e. when I first woke up), my original thoughts were to not bother signing in at all.  Anywhere.  Just disappear.  Again.  That would be for some of these reasons on this list, and for being so sick now.  I just wanted to isolate myself.  Run away and hide from the online world.  To somehow make it balance out with how much I feel like a caged animal in the real world.

Some of the reasons on the list are more or less resolved, because I wrote them around mid-May.  Some of them are ongoing.  I’m still dealing with them.  They will just resolve themselves with time? It’s obviously been some time since I wrote this list, but I said I would post it before.  I like to keep my word.  I will make edits as necessary.  Also, this post is quite long.

Reasons I Couldn’t Come Back Online in No Specific Order:

– A cutting.  A different experience this time around.  Maybe worthy of a blog post? Although, I am NOT happy I did it!

– Getting audited for my taxes I submitted earlier in the year.  WTF??? Never in my life! No wonder my return wasn’t coming despite watching my bank account like a hawk! (EDIT: this is just some “random” thing.  Nonetheless, great timing, YAY ME!!!)

– Getting stuck in MAJOR PTSD Hell (three different elements there.)  A couple I am still living with on a regular basis.  The other provided me with some different insight.  Which was both good and bad.  If I can phrase it that way? Definitely would require posts to explain all of that business.

– Fights and upsets with both my friends J. and P.

J. is an ass, and we’ve had serious blow outs where I’ve had to question our friendship continuing (not sure if you know that history.)  P.??? We never have any issues! Great timing again for a first one!

– baby MacBook almost died to the point of requiring service.  Requiring money I do not have.

– Fighting with the stoopid guvmunt to hopefully get more money (not related to the audit.)

– Running around for more medical appts. for the stoopid guvmunt to hopefully get more money.

– I’m sick.  Gastro. issues.  I was way before, but I didn’t notice.  Things were too hectic and too busy.  Now, I’m noticing! Gastro Man wants to wait to see me until I’ve seen the Hematologist in June (re: the anemia.)

– The Bone Density Scan. (EDIT: to keep this one simple, negative, no Osteo-anything.)

– More about being sick.  I’m gaining weight at a rapid pace! I was barely hanging on to the high 90’s a few months ago, but Non-Arsey Neuro’s scale said 110lbs.  Then, two days later for the Bone Density Scan, it said 115lbs.  Five pounds in two days??? How is that even possible??? MORE PTSD!!! Everything is looking like malabsorption, I’m anemic, my Vit. D is so low! I’ve stopped eating altogether.*

– Not having anyone who understands, feeling so alone, isolated, lonely, not a part of anything, so if I did come back, would the online world be the same (HUGE FEAR.)  I even thought of taking my blog down (seriously, for good this time.)  Now that’s NEVER happened! I just felt, “What did it matter? What’s the point?”

– Not adjusting well to my new surroundings, even though I know the area.  Severe agoraphobia, so much that I can’t leave the intersection in front of my building–except for my doctors, and for scripts where I have no choice.  This results in more fear, panic, anxiety because I can’t go further than one intersection from where I live! (EDIT: I’ve always been in cars, but did make it out once for DIRE medical necessity.)

– Asperger’s Hell due to not adjusting to my new surroundings and “change.”  I can’t follow my regular behaviours, patterns, routines, even “rituals,” if you wish.

– Picking up my scripts requires me back to go back to my old neighbourhood.  It’s not far away, but when I do go and see it, I get so sad and upset, I want to cry.  I miss it, as I can’t live there anymore.

– Where’s my Social Worker??? (EDIT: I have finally reached her after about six weeks.  She was going to discharge me.  Now, she has seen how much of a wreck I still am.  Now, she is no longer discharging me.)

– I can’t write or read! I can’t do anything! Yeah, I know.  It means I’m depressed, my ADD’s running full throttle, it’s amazing I haven’t gone into a massive Bipolar cycling spree! (EDIT: I did manage to write and read on a day or two in May.  Whatever.)

– Trying to budget (with severe Dyscalculia), since I ended up getting audited, I’m still not getting full payment from the stoopid guvmunt, and I’ve had to buy new things for moving–MOST unexpectedly.

* – That weight gain? I thought it was some kind of bizarre, medical mystery.  Not so.  It took me a bit, but it has everything to do with what I wrote here, regarding Night Eating Syndrome.  It can cause A LOT of weight gain, and sometimes very quickly.

I’ve been dealing with it for…I can’t even remember how long.  The only way to stop it, is to start eating “properly.”  The only problem is, people get so ashamed, feel so terrible about the weight gain, they begin to starve themselves (if they already weren’t before.)  That just exacerbates the problem.  And of course, it just exacerbates my problem.

Alright.  “The List” is finally posted.

We’ve killed so much of our planet, Big Pharma really can’t kill us.  That’s because we’ve taken away what they need.  Thus, we are only to blame.  Since we’ve already destroyed so much of our precious terrain, forget the following piddly examples of the past, and how we’ve interpreted them:

Jonestown, Heaven’s Gate, the Order of the Solar Temple, the Branch Davidians, the Family International, Las Cañadas Suicide sect scare, the Movement for the Restoration of the Ten Commandments of God.

And probably many more.  Though presumably of much less significance, as they didn’t get much mention in Wikipedia (if any.)

So, you can add them all up, as many as you can find, but it still won’t matter.  The whole whack of us are committing mass-suicide without Big Pharma’s help at all!!!

Please don’t misunderstand.  This isn’t a pro-Big Pharma rant post.  Admittedly, I do have a love/hate relationship with them.  My meds keep me as sane as I can possibly be.  Whether you choose to believe that or not, it is, in fact, true.  However, not to completey cockblock myself here, that last “truism” may be the only one within this entire piece.  No matter.  I think there is truth here, and definite merit to what I have to say.

Yes, I am continuing to rant write about not having access to my Clobazam/Frisium.  Which I have every right to do.  Not just because I’m sick, and seizing, and going out of my mind (note: this in no way affects the writer’s state of mind to write.)

When I found out I had to go off it, I began running around, most assuredly, looking like a desperate junkie.  I wore not a mask of obscene horror, but the true face of someone needing, “Just one more hit!” Nope.  It was the same thing everywhere.  No stock, little stock, scant supplier re-stocking dates (if known period.)

After much convening with doctors, pharmacists, hospitals (only from an outpatient perspective, unfortunately), I was left quite lost and bereft.  Hell, by that time, I should have gotten a camera, and started doing “Man on the Streets!” Eventually, I discovered the real story.

It had nothing to do with politics, and the pharmacists lobbying and pushing for more rights, here.  That was my original thought.  That everyone had gotten their knickers in a knot, and grew beyond such a point, that it seriously was some “Big Pharma Armageddon!” Time to turn down the Conspiracy Theory Meter?

Raw materials.  They can’t find them? Don’t have enough of them?

I’m no chemist, nor a pharmacologist.  Biology and physiology seem to be my best “fit.”  Oh, screw that! My chemistry sucks! Pretty damn well all the way around! And yet, I don’t think it takes too much scientific acumen, to understand the basic concepts.  It’s like a recipe.  Although, before I proceed, if this sounds completely moronic, will any chemistry folks reading promise to be nice?

Big Pharma Medication Recipe:

1. Obtain molecules necessary from certain substances, and measure as required (extraction.)
2. Combine all, and stir until even (compounding.)
3. Simmer for three hours (internal trial testing–i.e. “Let’s see if this works.”)
4. Serve upon fine china, with or without linen napkins (double blind, patient trial testing–i.e. “Will they get food poisoning?”)
5. Patent it, sell it, make it available for take away, and delivery too (Dinner Is Served!!!)

So, these lack of raw materials needed.  Where are they to be found? How about earth? Meds don’t just fly out of the universe, straight into the CEO’s office, of whatever drug manufacturer is listed on your box, or vial.  If you think they do, please call your doctor immediately, or head to your closest hospital.  Not that you will.  Because you’re too far out of your head to care.

Indeed, it would be lovely if our meds could rain down upon us from the universe.  Perhaps they would be stronger, more plentiful, even provide “cures” to make us healthier, wealthier and wise! But as long as we choose to wait for that; to live in such a most bizarre fantasy land, it’s all about those raw materials.  That would also be known as organic chemistry.  Yes?

Therefore, in closing, we’ve done so much to piss off Gaia, I’m paying the price.  Big Pharma hasn’t painted a huge target on me, after all!

Sheesh.  I don’t drive.  I don’t litter.  I sort my trash.  I recycle.  I…

Stumbling down the catwalk patio, stoned out of your mind on cocaine Gravol with a cane, wearing hospital pyjamas, the closest T-shirt within reach, and an old pair of Afghan Socks.  The crowning adornment to the designer’s creation is the addition of a Tilley Hat.  Not only is it fresh and original, but the absolute best choice for reducing photophobia, due to its large brim!

Seriously.  Me outside yesterday.  Close your eyes and picture it.  Even more fun for those of you that know me? Or if you don’t, hunt around on this blog to find pics of me for a better visual.

Wow.  How many days has it been since cold turkey off the Clobazam/Frisium? Five, I think? Gravol, indeed–for breakfast! Also, Ibuprophen.  Both every four hours as indicated! Although, I’m trying to sneak some gentle food into my body before it completely wakes up and actually notices. 

“Purple nin-JAH Food Sneak Attack!!!

Ugh.  Speaking of waking up, I’m having seizures in my sleep? Fucking fantabulous.  Yesterday morning, I could feel my eyes rolling all over the place in their sockets.  Yep, a lot of experience there as far as Simple partials.  I just couldn’t get my hand up to touch/check my eyes!

This morning? Oh, shit.  I live alone, so nobody else is around to confirm any “bumps in the night.” *rolls eyes but not having seizure*

Anyway, I woke up early again this morning and uh…Todd’s paresis from the neck down? It took me a good minute or so to finally get my arm going to reach for my water bottle.  My other arm was “trapped” under the pillow, but I didn’t really care so much about that.  My right one was working, so my upper body was starting to shake it off.  But how about my legs?

Oh, bloody hell! Made of concrete! I could not move them no matter how hard I tried! Time to “un-trap” my left arm!

That didn’t work out so well, though.  My torso hadn’t quite caught up in the mobility department, as quickly as my arms had.  It was a bit of a challenge to sort of “reach” my legs with my arms.  Even still, when I tried to “lift” or “move” them in any way…aaaarrrrgggghhhh!!!

“Purple nin-JAH Had Seizure Attack!!!”

I just gave up.  I mean, really.  I had no choice! Purple nin-JAH was too paralytic! The Todd’s wasn’t ready to leave her legs yet.  I rolled over and went tried to go back to sleep.

When I finally awoke at a more suitable hour, my legs were back.  I got out of bed, and even for a messy sleeper (and that I certainly am!) I was pretty surprised at what I’d found.  A lot of heavy clothes were kicked off the bed, but it was almost like they were “selective.”  Also, there were some things that were buried underneath other things. These were heavy, too.  They got kicked off the bed in an odd way–“selective,” too.  Even more interesting, my duvet was evenly aligned and not thrown all over the place.

Is anyone out there thinking what I immediately thought? If you haven’t quite gotten there, I’ll round it all out and complete the scene. My entire body is kind of sore and stiff.  Most definitely my legs.  Good thing my head was on a pillow!


I have to go to my pharmacy today to pick up some scripts and stuff.  Being driven obviously.  By my friend P.  I’m hobbling around with Wonder Cane, remember? They may have found a supplier with access to the med, now! Please let it be so! This can’t go on for weeks and weeks.