Archive for May, 2010

MP3 of the Moment is just sitting there in silence, looking all forlorn.  That’s my job.  So, let’s put something up there while I’m working on another post for today.  Something actually came to me as some post material.  I suppose?

Uh…what to pick.  Something…okay, I just kind of grabbed…nah, I don’t know if I like that one.

You know, being post-“ick”tal© is so goddamn sucky.  Stoopid PA. Duh…  And I’m going to write a post? Well, at least I’ve got all day (and night?) to do it! *laughing*  Let’s see if I can make it happen!

I think it should be something kind of mellow(-ish?) as I am post-“ick”tal©.  Yes.  Hmmm…

Oh, I know! I just have to find it.  Martin Cradick! From Outback! Doing his own thing in Cameroon with the Baka tribe! W00t!

“Spirit Of The Forest” by Baka Beyond

I am trying to get her going.  Wee PA wants to get something written here but she is semi-verbal at the moment and not thinking very clearly.  The post contains subject matter that is complicated, so now may not be the time.  In fact, it is definitely not the time.  She is not capable of composing it properly, in my opinion.  I do think it would be good for her to write it, however.  Although, we may need to discuss an appropriate time.  It may have to wait a while.

Spock is not available.  His counsel is not needed here.  Actually, it would serve no purpose.

She is still at her friend J.’s, so another important factor is actually getting her home.  She needs to get back to sorting out issues at school.  She must attend to these practical things immediately.

She is actually fighting with me about writing this.  However, she is not strong enough to beat me.  I am easily taking control of this battle.  That is part of why she is struggling with the post she wants to write, and why she cannot do it now.  It is about control.  It is about fighting battles.  If I allow her to silence me, she will never have any hope at all.

Whoa.  I can’t remember when I had my earlier gastroscopy but they used Midazolam for my sedation.  I also can’t remember what I felt like post-surgery back then.  Right now, I can’t remember much period.  That’s because they used something different: Propofol.  Oh, holy shit.

When I first came to in recovery, what a blast, man! WHOO HOO! No more whoo hoo.  After resting for a bit, getting hydrated, finishing off with some vitals and removing my IV, all of that…I got up to get dressed.  It was then I figured something might be…a bit “off?”

J. came with me, as you’re supposed to have someone take you home.  I’m at his place right now but another reason for that is, Gastro Man works out of a group of hospitals that are even further away from where J. lives.  J. lives two hours away from me via public transit.  Traveling on my own, regardless of my condition, would have been utterly ridiculous.  Well, after the Propofol? If I had to go anywhere on my own, it would have been on my hands and knees.  Yes, I definitely brought my cane!

It appears I may have suffered some side effects? Yes, I am still feeling completely zoned, but some of the less common ones are nausea and agitation.  Yay.  Also, the anesthetist was particularly interested in my epilepsy and seizure patterns–definitely my most recent events.  There’s a bit of a contraindication.  So far I haven’t seized! *rolls eyes*  Don’t feel Gastro Man is in any way incompetent.  No, he is excellent, as is the rest of my team.

We had a good chat about my six minute procedure (it’s amazing what being under a general anesthetic will do to warp your world.)  He said no cancer, no ulcerations.  Just a whole whack of biopsies and our continual focus on malabsorption issues (or hell, anything else?) I also reminded him to get in touch with Sweetie GP.  He said he’d email her to keep her in the loop.  He also told me to call his office in a couple of days to make an appt. to review the biopsies, as they’ll come back fairly soon.  We need to review my blood work, as well.

I won’t be able to make it home tonight.  I kind of wish I could.  Some friends of J.’s came to pick us up and they are staying for dinner (that I cannot eat right now!) I also cannot socialize right now.  This couple are lovely, though.  They know I am completely bananas, totally mental.  I’ve popped a Valium and am sitting here being barely social on the couch right in the middle of things! Lord.


Surprised I could even put this post together but it’s allowing me to continue to be anti-social and also…keeping my brain…sort of…working…?

Pre(r)amble: I had another migraine recently.  Three days ago.  I’m still recovering from it today.  The same thing happened with the last one.  This is not what used to happen.  Something else is going on, as well.  I’ll get to that at the end.  An interesting correlation?

Non-Arsey Neuro! Oh, how he makes me laugh! How we make each other laugh?

Today we discussed the new “addition” to my seizure profile.  Reflex seizures.  Well, it would be of no great leap to consider anything to do with light as a factor.  What with my eyes blinking all the time and me going blind so often.  Actually, not long ago, when I lost my vision, I had a pleasant change from my normal black.  Everything went red! I’m not kidding.  I was making terrible jokes about being so angry!

“I’m seeing red! I’m seeing red!”

Well, more jokes abound today.  After we also cleared up the business of me “thinking” my way into having Simple partial, bilateral, motor seizures (my legs start going haywire–or they don’t–and I fall over) we moved on to “Pattern Recognition.”  Oh, if you have no clue about me “thinking my way” into a seizure, ’tis true.  Higher cognitive functioning can cause this to happen.  And as such, the type of cognition that I was engaging in resulted in just the seizures I was having.

Pattern Recognition! Oh, how drool (oops, a bit of a seizure funny there, I drool a lot!) droll we became.  With pattern recognition, your jaw can twitch.  Mine has twice now.  Non-Arsey Neuro burst out laughing and said, “Oooh! Don’t look at my tie!” I did him one better.  I lifted my arm in rebuttal: “Oooooooh! Don’t look at my shirt!!!”

I’m wearing a long sleeved, tartan, flannel shirt over a turtleneck, today.  If I tied it around my waist, I’d be the perfect extra for a Nirvana video.  Well, if Kurt Cobain was still alive? No matter.

End result? We’re not doing anything with my meds.  We’re just going to keep my brain travelling along on its own, little, spastic trail…  What’s the count, now? Simple partials, Complex partials, Atonic seizures, Reflex seizures, tonic-clonics.  Le sigh.

And that correlation up there? My migraine recovery time and what is happening? Yes, the duration is longer, but I am feeling different things, also.  I am nauseous well after the event, I am cognitively impaired, my emotions are affected, I’m remaining both photophobic and phonophobic for longer periods.  Gee, does this sound familiar? Like I’m post-“ick”tal©? However, it’s not exactly the same.  No.  I can definitely tell the difference, as when I am post-“ick”tal©, I am much more ill!

I may actually have to give Arsey Neuro some credit here and say he really was worth something–other than merely being a tie or shirt sleeve to wipe my arse with! First, he was always curious about my Limbic system and now I have been for quite some time, as well.  Second, he was always curious about a link between my migraines and my seizures.  Hmmm…

At any rate, I’m tired of my brain.  Not just the epilepsy and the migraines–all of it! I wish it would just go away! But it won’t. *shrug*

Maybe next time I seize and lose my vision, I’ll see another colour.  Not red? Maybe that’s something to “look forward to?” *rolls eyes*

I’m taking a break from school right now.  Not really a self-enforced one.  No.  The last class that I was taking ended on Friday, so there is a bit of a hiatus at the moment.  Which is kind of good in a way.  I have a boatload of medical stuff to take care of so I don’t have to worry about missing class time.  Ironically, two things today and tomorrow.  The Universe is in alignment for me? Well, not exactly in a “stellar” way, I would say. *rolls eyes*

I have to see Non-Arsey Neuro, today.  As I have just spewed and bitched all over Twitter, I have learned that the Stoopid Guvmunt Drug Plan I am on does not cover my migraine meds.  I had a suspicion, so I wanted to check their Almighty Formulary to be prepared.  Of course, I was right.  Migraine meds are obscenely expensive.  There is a form that I have now printed off to have your physician beg that you be “exempted.”  I’ll see what they say and then wait six months to be reimbursed (if I am exempted!)

Tomorrow? It’s endoscopy time! Not really a big deal as I had one with Gastro Man ages ago.  I’m just elated we’re not doing another colonoscopy! Not that either of the procedures are a problem.  I go conscious sedation–I have to–and everyone gets conscious sedation for a colonoscopy.  However, the prep for a colonoscopy will KILL YOU.  I guarantee, if you ask everyone that has had one, they will tell you exactly that.

I do still have important and outstanding things to do regarding school, but they will take some time.  I have another course.  Originally, I was told I could take it at my leisure.  That may change.  It may turn out to take place in a classroom setting.  I also still have to get my Clinic Rotation set up.  Regardless, both of these will take…time.

That leaves me…with time.  From January, it was full steam ahead.  As “time” passed, things slowed down.  Now? Shit.

Having a schedule always provides me with stability.  It always has in the past. *sighs*  Sure, sure…now, get up at the same time every day, make your own schedule of things to do.  If you’re going to say I can do it, I’m going to say: “People, do you know what you are asking of me?” *shakes head*

Maybe? Maybe I can? Maybe I can do…something?

I get so tired of question marks hanging over my head! This is just one of several hundred, that have already been floating around since this morning! I’m always swatting at them like annoying, little mosquitoes! Sometimes they go away, but others? Boy, do they bite! Hard.

The Universe, time, questions…so much unknown, anyway.  For now, at least?

Goddamn it! There’s another one of those bloody things! *waves hand back and forth over head*

Oh, boy.  With some of the dreams I’ve been having lately, I’m not sure if Jung’s rolling in his grave, or getting ready to jump out of it and come running, screaming into my bedroom! Sheesh.

The most recent one actually provided blessed me with a nocturnal orgasm *laughing*  I certainly didn’t mind that! It’s been a very long time since I’ve had one of those! I can just imagine (or not!) what’s running through all of your heads regarding its content! Well, there is more to it–and I’m not tellin’! It’s taken me a while to integrate those extra details, but if I go the Jung route… *shakes head*

I’ll write them chronologically.  Also, I can’t remember when exactly these happened, other than “recently.”  I usually don’t remember my dreams so I don’t keep a journal or anything.  Maybe now it’s time I should!

#1 – My mother is a hoarder and has loads of boxes full of keepsakes etc…  I was lied to about all of this years ago.  I was told she had thrown them out but when I discovered she hadn’t–well, why should I have been surprised (about both being told a lie in the first place and the fact that she still had them!) That’s just background material.

In the dream, she hauled out each and every one of them! She told me to go through anything! Everything! Whatever I wanted, but she would be back in 20 minutes.  That was all the time I had.  I wasn’t happy about that.  Well, I was happy I could finally look into the boxes, but I was so nervous and anxious about the time limit!

#2 – Someone very close to me gave me a gift.  It was a purse.  They gave me two choices.  I could open it now to see what was inside, however, if I waited, I would be rewarded by them like I couldn’t imagine.  I chose to wait.  The dream ended at that point; the purse untouched.

#3 – I was a mermaid.  I was swimming along with great ease, enjoying the sea, the ocean…  I felt relaxed, happy, playful.  This went on and on and on…  Then I leapt out of the water! I flew out of it so fast! I went airborne like a rocket! After I landed, I went back to my happy, little, playful self on the shore.

So, have at it, Jung.  And I’ll tell you the rest of that other dream, you know, the one gave me the orgasm.  Hell, you probably don’t even need to wake from the dead to put all of this together!

“…just go to your Happy Place…”

How often is that phrase (to loathe or not), used when we are told to lie down (or not), close our eyes (or not), and relax? Now, I cannot do that.  Now, I will not do that.  It is completely counterintuitive and counterproductive to what I am trying to achieve.  If I were to do that, it would mean only one thing: denial.

A link needs to be supplied to this post for background, of course.  Should someone find themselves here out of nowhere, reading that may give them some further understanding.

This is so hard.  Well, two things.  Writing this post, and trying to conduct this “work” on myself.  I am utterly, physically and mentally exhausted (NOTE: I left out “emotionally.”)  It’s funny (i.e. ironic), what can happen when you are in a state like this.  Your defenses are down, if not obliterated, altogether.  It makes this “work,” as I said entirely tongue-in-cheek before, “easier.”  It’s amazing what thoughts and feelings seem to automatically rise to the surface.

So far today (as far as I can remember), I’ve had the following:

  1. I’m scared.
  2. I’m confused.
  3. I wan’t to kill myself.
  4. I’m lonely.

Oh, bloody hell that last one! Again, what rises to the surface when you’re not expect…? How long has it been since I admitted, said, admitted…oh, bother! Admitted that one to myself? Years and years! Merely days ago, I would simply have said, “I’m just a hermit.”

That’s not true.  Alright, I live like a hermit.  That is true.  Nonetheless: I.Am.Lonely. And that one’s a biggie.  That one implies–hell, more than implies–it clearly indicates a void in my life.  Completely born from my “being born.”  That one’s going to take some time to sort out.

So.  How am I attempting to “sort things out?” Well, I can’t take full credit for all of it.  Or at least the “last step?”

A long time ago, I was having a talk about this whole ball of wax that refuses to melt, with this blogger.  She gave me that portion of it, and it is a visual idea.  I’m finding it helpful, as I am not a visual person.

First, when these feelings I cannot and will not deny, wash over me, pierce right through me, I have to let that happen.  It may cause nausea, numbness, palpitations, fear…it doesn’t matter.

Second, I have to recognize them.  I have to stop everything.  I need to try and clear my mind of all that is going on around me and focus on those feelings.  I need to see them for exactly what they are.

Third.  Once I have a grasp on that certain feeling, I know what it is, I then need to validate it.  This means not judging it, not tying it to any other external stimulus or stimuli in my life.  I need to just accept it for what it is.  Immediately as it is occurring.

The fourth step is the visual one.  I need to picture an “Adult PA,” holding a “tiny, wee, child PA.”  I picture that as best I can.  The Adult PA is holding the child PA in her arms.  She is rocking her back and forth.  She is stroking her hair.  The child PA may be crying (so far she hasn’t yet, but the “Real, Living PA” has been close!) Then, in my head, I say the words that the Adult PA would say to the child PA, based upon the circumstances.

That’s what I’ve come up with for now.  We shall see.

But I need to see me.  And it’s hard.  That’s why I’m not talking.  I’m regressing.  And I’m also trying to function.

The thought came to me last night.  It’s very hard to explain.  Even if I had a therapist I can’t imagine what the fuck.  I need to try and turn how I grew up entirely on its head, then backwards and do it alone–to myself.  At least when there was another party involved to “parent” it was “easier?”

I’ll be back…who the hell knows when.  Sorry for worries and lack of response, I really am.  I’ll get to you all.  But that’s just it.  Just one of how many things I need to tackle? Sorry, sorry, sorry… *hangs head in shame*

I don’t even know if this is possible.  But the ways I’ve always been…it’s killing me.  Body, mind and spirit.  It’s ruining my life.  Or it already has? It may still continue to do so?

Speaking of body, yes, physical health problems.  I saw Sweetie GP today, and on top of all the other items outstanding, she’s ordered a whole battery of tests.  I will also be seeing her Dietitian.  Sick, I am.

I am a prisoner of my own mind and body.

There were two more seizures that happened I didn’t blog about.  One occurred last Thursday and another nocturnal last Saturday night.  I am very sick.  Or still very sick, as I never fully recovered since all of this started two weeks ago.  Two weeks ago.  Seven separate events within two weeks.  More than ever before.

I am a prisoner of my own mind and body.

All is different.  My cane has to be with me everywhere.  These seizures are happening so quickly.  Before, I had warning.  I had at least some sense, perhaps, where things would go.  What the outcome would be.  Now?

I am a prisoner of my own mind and body.

I am going to see Non-Arsey Neuro in two weeks.  Will there be anything to do? Titrate my meds? The seizures are idiopathic along with my lifelong condition of epilepsy.  And thus…

I am a prisoner of my own mind and body.

I didn’t even bother to pick up any more anti-nauseants on the way home today.  I am out.  Who cares? Who cares, indeed.  Well, I suppose I care about some things.  But I’d rather not.  Why?

I am a prisoner of my own mind and body.

Pre(r)amble: I’m still post-“ick”tal©.  It’s been a week since that nocturnal seizure and I wonder just exactly what happened.  I have never experienced complete paralysis from Todd’s paresis other than when I had my tonic-clonic.  I have also never been post-“ick”tal© for this long other than when I had my tonic-clonic.

However, I am no longer walking with my cane like a tiny, female version of the caustic and cantankerous Dr. House! Also, I think the nausea has finally started to subside.  I can eat more than soup and bread or crackers–or just plain old nothing at all.  My cognition? Well, that’s what this post is all about.  If I ever imagined I was in Kansas before, I sure as hell ain’t now!

Finally, please bear with me if you can? Due to my “cognition,” and how I need to try and explain things, this post is/will be long! Alright, let’s give it a go!

I can barely “comprehend” the fact I am still attending school.  What I am studying isn’t so difficult, but when I come home, what do I feel like? I’m a piss-assed, totally, blitzed, wasted drunk! A man looked at me walking home the other day with an expression of combined curiosity and repulsion!

I usually crow on and on when I’m post-“ick”tal© about how “I can’t think.”  No, it’s just that my thinking is “impaired.”  But I’ve never thought of it as “altered.”

Another thing I crow on and on about, is the notion of people who are mentally ill being more creative than NTs.  That, I cannot stand.  With all of my diagnoses, I’d be the richest woman on earth in terms of my “creative successes,” don’t you think? Hey, even with my writing alone! “Screw you, J. K. Rowling!” *laughing*

Even though epilepsy is not a mental illness, I’ve never considered any creative aspects of it it terms of anything I’ve done.  Of creative persons cited with epilepsy, (at least in terms of writing, although I would say overall), is Dostoyevsky.  I’m hardly Dostoyevsky. *stares at chair that is more like Dostoyevsky*  Although, I wrote a poem a few days ago that I think is alright.  I’ve also written about epilepsy when post-“ick”tal© *laughing*  I guess I just couldn’t pass up that opportunity!

So, back to my cognition.  What am I thinking? How am I thinking? It may have started with air.  Literally, I had to get outside with my cane when I had no choice, the first day when I was post-“ick”tal©.  Presumably, that gave my brain a healthy boost of oxygen to assist in its repair.  Lack of cerebral blood flow can, or may possibly, cause hypoxia under certain circumstances, types of seizures, body/brain localization etc…  Therefore, a physiological first step.  There’s more to the picture, though.

I am a shallow breather.  I don’t breathe well.  Sometimes, I even forget.  It’s probably because I’m just not a relaxed person.  At.All. *rolls eyes*

While resting throughout all of this, I was practising some deep breathing and focusing on a particular situation that was bothering me.  I actually fell asleep! When I woke up, I wasn’t so much bothered by that situation.  I did the same thing the next day when I felt panicky about some class material.  I was even afraid I might have another seizure!  Same result.  ‘It’s okay, PA.  Just breathe and see it for what it is…’

Huh? This…isn’t…right.

That day earlier.  I was outside with our current Instructor and another woman from class.  He remarked how blue the sky was, not a cloud in it.  Normally, I would never notice such a thing.  I looked up and was momentarily frozen by its colour.  The next day, it was clear and blue, too.  I continued to stare at it.  I even noticed a very, shiny, black car drive by and thought it a strange…sort of…contrast?

Why is my brain doing this? I’m noticing a lot of things in such simple, visual forms; if I keep breathing in…out…in…  I also must add, I am not a visual person.

If complicated issues arise? Breathe in…out…in…  I know I won’t remain stress free completely, of course.  Being post-“ick”tal© is a bit of a trade off.  I get a break from the extreme pressures of life by becoming very ill.  When I am no longer so ill, those extreme pressures come back with a vengeance.

I don’t mind this altered way of experiencing things.  Not at all.  But I’m still sick, you see.  I’m debilitated.  I cannot really function, even though these words may convey some idea to that effect.  Maybe?

I need to be a fully, functional, human being in order to survive.  I’ve been “non-fully, functional” for too long.  Waiting each day to wake up and see if you can then function, get on with your life.  It is not a way to survive.  This is when my epilepsy frightens me the most.  That is neither an alternate, nor an altered reality.