Archive for June, 2012

A funny phrase from my ex-friend J.  It was always hauled out in reference to things being “broken” that were so necessary, but rendered useless.  This always resulted in pure frustration.  Construction work being done that screwed up any way of travelling.  Renovations of stores that people needed where there were no alternatives within reach.  You get it.

Well, my blog? Maybe not “Under Destruction.”  “Under Construction?” “Under Malfunction?” Yes.  I like that one.

My blog is forthwith: Under Malfunction

But bugger me! Comments! Twitter! I still haven’t…  I want to say yes, as always I will get back to you, but what if I can’t? Every single one of you who I haven’t responded are still so important.  I will try.  Very hard.

What this post is about is that I need to leave.  Who the hell knows for how long? But it’s the cancer.  Or strong possibility of it.  Or Barrett’s Esophagus that is pretty freaky, but a little bit better (just a very little bit, perhaps?)

Could it be nothing? Well! A whole chicken coop of eggs on my face! Still, I wouldn’t complain.  All the chickens could shit over my entire body to boot!

I even ‘fessed up to my mom whose father died of it, and she then went off the deepest end of immeasurable mental insanity within five minutes.  Well, I guess if you can deal with your daughter trying to top herself, ending up in the ICU for three days, yet still coming out of it, is cancer such a big deal? I just about fell to the floor from her “non-reaction.”  Okay.

So I’m a bit messed up.  There are days when I’m good, even great.  Yes, while still pondering this and my life, my mortality.  Tonight? Not so.

I’m starting to disclose to a hell of a lot more people, some I barely know.  I don’t fucking care.  I told a bunch tonight.  I do care for them, but FYI.  This is the deal if I start bursting into tears for no reason.  Yeah?

Looking up at the sky earlier after the sun had set, I kept telling myself, “I refuse to waste a minute, no, not even a second of my life from this point on.  No.”  I kept saying it over and over in my head.  How do I do that?

I’m still nuts, totally batshit crazy, and an epileptic nightmare.  Perhaps that’s why my blog needs to go Under Malfunction.

Do “Laundry Parties” exist? Apparently so, as I found out today.

At least in some form.

My neighbour G. was pounding on my door looking for me, but then gave up. Until he found me in the laundry room of our building. The first words out of his mouth:

“Do you want some wine?”

Uh…okay. Gimme a break. Forget the “Uh…”

His mother got accepted to a Masters Program. So how did we…did we?

He was white and I was red. He was pouring. It got to a point where there was none left? Did we both kill two bottles each? When did I last do that???

Oh. Last Thursday. Well, never mind that.

Now the two of us are here at my local. Truly the term “legless” applies to me now. Bless Wonder Cane’s Brother!

I guess that’s it. My days are pretty predictable and boring being sick. This one wasn’t.

And say published by Android for WP and wtf cuz I can’t even proof this. Renegade posting?

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My last post. Sounds more like I was on a seriously, heavy heroin dive.


There was a point to it. There is a point to it. So, appeal to my Buddhist books when I know goddamn well what’s going on?

Yeah. No shit, Sherlock. Release.

The (possibility of) cancer.

Pondering my mortality of late. A lot. But some of these things (at least one I remember) happened before I knew any of this. But it was way up there on the “Most Extremely Beautiful Things In My Life List.”

All of what is happening I can write about, or will, but in small doses. Maybe? Yes, probably best that way. So much.

Just, was it yesterday? The day before?

I can barely interpret what this  professional artist said to me. I’m on my mobile right now so I can copyright it later! This is too precious. Even if dumb, Aspie PA still is confused by it. Excellent writing fodder!

We talked about a class she was teaching. Visual. Not my strength beyond some photography? Then further.

I had to tell her of my psych issues as they affect my perception. And as such, these are what I can do, but these others?

She sat quietly for a moment and then said this:

“You’re an angel trapped outside your own body.”

I didn’t know if I should run screaming from her store (I sure wanted to!) but I just said thank you.

So there’s a taste? It is happening everywhere, out of nowhere. It is very, very good but also overwhelming as I am sick.

Been meaning to buy it for sooo many years. “Tibetan Book of the Dead” in English meaning. It guides you through the Bardos, Buddhist stages of living your current life and body behind.

Sorry, not explaining this so well, I don’t think. That means I’m tired and should stop writing.

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I want to write more. Tell you what is happening but not so well. And again, so sorry for not getting back to all who have contacted me in all form.

I’m not looking. I’m not even aware but I am seeing things, feeling things. In situations where such beauty is almost sucking me in.

At times, almost unbearable until I can take the time to process. Or if it’s a lot, totally overwhelming.

Like now. Tonight. Too much beauty for my crazy head to handle. But the world keeps throwing it at me.

Going insane with beauty,

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No.  Not that word.  Although, not so offensive to the Scots.  “What the fuck ya doss…”

No cause for alarm! Unfortunately, you may still be alarmed. I’ve been going over this for some time with a few outlets.  I can’t always to get to them and…I’m going out of my mind? Blog? Scream it out to the entire world as an outlet?

The “C” word.  Cancer.  But not confirmed! However, my gastro problems have worsened to a degree, that indicates some possible problems in that area.  Or at best, some huge Red Flags. 

The resurfacing or my problems are not my regular issues from the past.  They are also getting worse.  I even thought I saw occult blood from my GERD as it shot of my esophagus.  Meaning, more precisely, internal bleeding re: my esophagus.

There’s a lot more to say about this.  In fact, it’s relatively new for me as well–to have all of this happen–so fast.  Also, because it is localized to just my esophagus, not as before, this is again (potentially?) more serious.  Years ago, my signs and symptoms were all over the map.  I will continue to blog about all of this, of course.  So, I have added (no brainer) a new Category: Cancer.

Yes, let’s hope not.  However, there is something else that it could be that is also not very good at all.  I’ll get into the med geeky later.  I can get into family history later, too? PTSD because of that, as well? This is rather messy.

I’ve been trying to keep even, but I won’t even be seeing Gastro Man for about a month.  That will be just be a chat.  Then we need to approach testing, booking the gastroscopy, and hell, he may even want to do another colonoscopy.  Let’s hope not as I am in enough pain that won’t stop, and the prep for a colonoscopy is extremely brutal.

But PA not keeping so even.

I was thinking the other day, am I afraid? I felt sort of numb.  Then I had enough sense (or a tiny bit of something) rose to the surface.  Yes.  I am afraid.  Why, I can’t pinpoint.  Definitely, PTSD.  A lot of explaining there.  My current life situation? My health as it is? Oh, bugger.  Separate thoughts, but more PTSD.

Psychological? Can any of you see how this is building? I’m still struggling with losing the Clobazam for the Typical Absence Status Epileptics.  It’s been a full year now and some improvement slowly.  But I’m still seizing and my moods are yet precarious at times.  Not to mention, when I read some things from months ago, all of these symptoms etc. were in existence.

I don’t (and have never) considered myself a hypochondriac.  Much worse, a cyberchondriac! No.  I’m a med geek who has enough knowledge to research the fuck out of anything and apply it to my own body–and knowing my own body.  Let’s not forget, I was going to pursue a career in medicine too, right?

So, I can do the the “Yes, No, Maybe So, Dance.”  I can also twirl around and say, “Hell, I don’t think so.”  Pretty far a stretch even if…

Any type of Gastric Cancer has an extremely high mortality rate.  Most people think that lung cancer is the biggie.  Nope.  Surprise.  And not a good surprise.  Sorry, guys.

Out. No Internet connection using phone. Sounds like txt/SMS by typing. Well ok. Will b atm.

Still bitch. Nt even looking @ PA & u. Sry. V.v. sick & mad @ self. Lot 2 deal bt sry again.

Not jst seize atm. Gastro. Big probs now worse. Idk bt nt 2 scare u. Hard w/ post! Probs so long & fam hist.

Gastro 1mth. Biopsies will say? Bt if say 1 thing nt good. Trying nt 2 think of atm bt hard.

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Fuck The World And Everyone In It!!!

Especially You Able Bodied Fucktards Who Pretend My Cane Is Invisible!!!!!!!!

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I guess you could say I made a full 36hrs. or a bit more (you must count sleep!) without a cigarette.  However, something seemed terribly odd.  I just wrote it off.  I was stubborn.  I’d quit cold turkey before, and each time, no problems at all.

That something “terribly odd” turned into something that didn’t make sense.  Then, something was wrong.  Then, something felt wrong!

Somewhere in the back of my warped head, I had reservations about quitting cold turkey before I even did it.  Now, I think I have very good reasons to actually start smoking again!

I already new this about trying to quit anything that is potentially addictive (or just plain is!) That gem is, you never do it at the same time you are trying to quit something else! Well, I was okay there.  I wasn’t trying to stop anything else.

Wait a minute.  Rule broken?

What am I “quitting” right now? Or better said, What did I “quit” a year ago? And by quit, cold turkey as well–by force!

My Clobazam/Frisium for my Typical Absence Status Epilepticus.  And on that front, how are we doing there? We’re still making titrations, some improvement with each one, but I’m not well enough yet.  I’m still having seizures, psychological disturbances etc.

For all I know, my brain could be sitting there with a grim face saying, “Man, it’s been a year and I just can’t kick this Clobazam habit.  I really must have been addicted to that stuff.”  Yeah! My brain’s so screwy, it thinks I’m trying to get rid of it, because it damn near killed me going off it, and I still don’t have enough of it back!

I made that reference to something feeling wrong.  I’m now on Day 7 of one of my TASE intervals.  I’ve already had some seizure activity with this every-two-week spin around the dance floor.  The problem was, I was feeling just fine until I stopped smoking.  Day 6 and today threw me back so far, it was like the days of surviving things months ago! *winces*

Still, I refused to believe.  I carried on.  I just thought things symptomatic from quitting smoking right off the bat.  Either that, or damn! What on earth is going on with my TASE?

Now sure, you could say, “Okay, PA.  Right…you’re just making excuses for your symptoms.  You’re just sick because you’re not on the right dose of meds yet! You just want to smoke!” Say it all you want.

I think this gives me all the ammo I need to start up again.  It has to do with the receptors in your brain for nicotine and epilepsy.  Yes, peer reviewed studies I read so not a lot of bunk.  Also some anecdotal from message boards to see what other folks with epilepsy did when quitting (as advised by their neuros.)

It’s about the desensitization of those receptors.  People with epilepsy have a massively higher rate for those receptors to become desensitized due to the receptor itself and especially one binding site that covers so much territory! There’s lots more about other receptors, loads of studies of this in particular re: genetically, inherited epilepsy, but forget all of that.

The point is, it can even get to the point of lowering your seizure threshold so goddamn low, you can start having seizures! HEEELLLOOO…I’M ALREADY HAVING SEIZURES!!!

Which may then logically follow, that if it was lowering my threshold enough, it would only make sense that my Typical Absence Status Epilepticus got worse! It’s a form of Non-convulsive Status Epilepticus, so I’m already seizing all over the place–you just can’t see it, and it makes my brain and body go completely mad!

So, what have I done? When I got up this morning, I went to a store to get a small packet of cigarettes.  Time to do a bit of experimentation.

The jury’s still out, but a verdict may be coming soon.  I was in hell yesterday and today, earlier.  Things may be starting to clear.  Slowly.  Because I took a really hard brain bashing.

Irrespective of the jury and that case.  My overall medical one is closed–for now.

Cigarettes and so much more are drugs.  They’re just not medically prescribed! So, as far as my brain is concerned, just like any other head med, a slow discontinuation required.  Handle with care.  Another item on the table for discussion with Sweetie GP.

POSTSCRIPT: This has taken me all day.  So, still kind of slow but also very tired, still in TASE anyway.  But not as crazy vs. incapacitated like before.

I have been thinking about doing this for a while.  Now is definitely the time.  I have quit on and off several times since I started smoking, so I don’t believe I am physically addicted.

No, I believe it is a psychological issue.  Always patterns when having a cigarette that “just fit.”  Well, even that is irrelevant now, too.

I have just thrown every cigarette I have straight into the trash.  That’s it.  Now is definitely the time.  I will try not to think of why the hell I didn’t do it before!

Today may have been was the day I realized the most potentially scariest point of my life. I also realized that no matter what the outcome, I had to make every day count from today forward.

If I could.

It was the most beautiful day.  So warm but not hot. No wind to disrupt the perfect moments to bask in those brief moments–the transition from spring to summer.

I pondered this idea, slowly rotating my mala bracelet (basically a Buddhist Rosary.)  I pondered what frightened me and why.

I’m still struggling but I have the greatest Blessing now.  I am no longer grieving a person I thought I had lost completely.

Some more encouragement.  A lot more.  To make every day matter. If I can.

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