That time of year

Happy Halloween, to you... and to Jb. :)

...and from Mr. Pagan... Good Samhain. ;) I'm glad that I had one more... and I'm glad that you were in my life for it.

...here we go...

~out of the box

Was trying to go through some boxes. As much as I put off going through the stacks and stacks of paperwork and receipts, because of the stress, this was the very last bit of "going through" I wanted to do. My writing.

I don't know what's more difficult, seeing what's there, or knowing what's not. It's all good though, I suppose... there's no organizing it anyway... no reading through it in any sort of order. What's gone is gone. What's there is there. In the end, for all I know, it'll just be bug food.

I hate that I want a beer right now. I don't know, other than refreshment, what I think I'm going to get out of a beer. All I know is that I want one. Emotional stress, I suppose.

I glanced at a couple of things, as I was taking things out. I'm funny. I crack myself up. No, really! Sometimes, I look at things I wrote or drew and just about piss myself. Ok, given, these days, that's nothing amazing, but still...

That's one thing I sort of miss... my sense of humor. I used to laugh a lot more. I wasn't so bitter and jaded and negative, as I am now. I still have a sense of humor, but it's not what it used to be. "Goofiness" is rare. I'm usually too busy complaining and throwing tantrums. ...Ranting.

Well, at least some of my writing is being read. That's the cool thing about the Internet. I write, people read, instant gratification, woohoo. Though, it's not the same. There's just something "priceless" about the rantings when they're read in retrospect... something almost other-worldly.

I like my writing. It may not be the best writing ever, and I'm sure it's far from perfect in the eyes of many, but I like it. It's me. It's as close to understanding me as anyone will ever be, if they read it all. Needless to say, I don't think that I'll have the time to do that myself. I think that I'm just going to have to settle for living it.

Think I'll go live that beer.

1255pm103005 ~comment

(In "piss off")

cutter,

In the time I've spent here, I've found some wonderful humour. Humour full of darkness, and pain, and more than a little rage.. but no matter how hard you/your story can be to read, there is always a moment where a smile scurries through me.


I imagine *that* is the thing that allows you to cope, however tenuously, however tremulously.. and however much you may think you cannot.

Keep on, sir.

Yes, if I didn't have a sense of humor, I'd have been long gone. I guess that's the thing though, it's all about extremes. I laugh hard, and I scream just as hard. Intensity. The spice of life.

I'm honored that you read my blog. I, very much, respect you... and your work.

~Soap Scum

I really need a shower. I feel dizzy, though... so, I'm a little hesitant to get in. My eyes are screwed up. I feel like I have a cold or something.

I tried to stay in bed for about 12 hours... figured that even if I couldn't sleep, the rest would do me good. I don't know that it did, but at least I tried. Sometimes, even when your life consists of constant "rest", you have to force yourself to REST. Turn off the phone, turn off the computer, turn the lights out, and stop trying to figure out the nature of the damn universe.

So, today's task is the shower. I'd take a bath, but the tub is yucky, and there's no way I can manage cleaning it. I guess I'm just worried about passing out in the shower. At least, in the tub, I'll be less likely to crack my head open. I hate baths, though. Baths don't make sense to me. How clean can a person get, soaking in a vat of dirty water?

Now, there's a metaphor, if I ever heard one.

~Push Play

So, now it's just about waiting, I suppose. See what happens in the next few weeks. Either it did some good, or it didn't.

Right now, I'm just really tired... and feeling sort of sick. My stomach is fucked up, and I'm pretty sure I have a fever. Trying to get some sleep is on the agenda... and a shower... maybe get the mail, if I can manage. ...anything but think too much, I guess.

Maybe, if I can get some sleep, I'll be able to write more, later on. Right now, I'm just not clicking... I'm not reaching any of my thoughts, even though I know they're in there. ...emotions aren't transforming... feelings are just getting stuck somewhere. It feels like the world is on "pause".

448am102805 ~comment

(In "Day 4")

Personally, I'd be worried if you weren't angry and pissed off. Hell... I'm pissed off for you. It's easy to berate yourself for spending what little energy you have being angry at what is not only painful but also ferociously unjust. Throwing punches into the wind can be terribly frustrating, but that doesn't mean they don't need to be thrown. Forgive me if I sound preachy (feel free to tell me to fuck off) but I think you're entitled to your anger and that you should allow yourself this stage of the process. Eventually, like the tide, I think the rage subside. And when it does, I hope you find a little peace.


Thanks. Sometimes it feels good when someone validates me. :) It's very appreciated.

~Day 5

I'm up. I think that I got in a little over 3 hours total, in the sleep department.

I feel dizzy already... and sort of headachey. The over-the-counter stuff I took to stop my pee burn seems to have worked a bit. Leaking is one thing, leaking ACID is another. Too, it's pretty cool. It turns your piss a really funky orange.

I'm not sure how long it takes for prick-mode to pass. I'm in prick-mode without the Solu-Medrol, often. It's sort of tough to tell the difference. All I can do is keep apologizing. Believe it or not, I'm not that bad of a person. Yes, I have a mouth on me (or "fingers", in this case), but I'm generally harmless. I don't enjoy hurting people's feelings, really. Sometimes I do, I guess. When I feel that someone is really hurting me, the fact that I'm hurting them back doesn't bother me too much... not until after the hurt they did to me wears off... then, I beat myself up for not feeling badly about hurting them... you know, two wrongs don't make a right, that sort of thing.

I hope that I can get some sleep in the next few days. Not sleeping is not good, on many levels.

Ugh

1222am102805 ~comment

(In "piss off")

Cutter, have you tried LDN ?? maybe it would be worth a shot , beats all this crap you are dealing with ....let me know if you'd be intersted and i' could send you some to try it for a while ...it worked for me but everyone is diferrent ultimatelly ...


I'm at the point, right now, where I don't want to try anything. I'm sick of meds. I'm sick of fighting. I'm just really done.

I appreciate your offer, don't get me wrong... I think that I just need to see what's going to happen with this Solu-Medrol treatment.

I'm just pretty tired of all of it.

~piss off

A lot is going on, I suppose. A lot of things that I feel sort of odd writing about.

I had some chest pains before today's IV. My heart rate was down pretty low too. Sort of worrisome.

"Keep my chin up", right? Yeah. Right. Should I do that before or after I finish searching for the appropriate incontinence products? Wait, wait... I know the answer to that one!

It Depends.

HAHAHAHAHAHA!!!!!


Fuck You.

~Day 4

I guess that I've hit that angry point of the treatment. Prick-mode, I suppose.

I'm tired. Another night of about 3 hours sleep.

Two more days to go, until I can start waiting for the fateful MRI. I don't know what I want the results to say.

I'm just tired.

~How do you spell relief?

I feel completely overwhelmed. I don't even know why I'm attempting to write. Sleep isn't coming, even though I feel exhausted. The new IV is in, in my right forearm... the underside. Is that word spelled correctly? Is any of this? I can't tell anymore... is "anymore" a word, or is it two? My command of the language is falling quickly down hill. Downhill?

When I was in school, I was in "MG". "Mentally Gifted", it meant.

Some gift.

The lord giveth, and then the lord rams it so far up your ass that you can taste it...

and it tastes like shit.

Whatever. I'm not dead yet. Some people think that's a good thing. I'm still debating whether or not it is. Keeps me busy.

~Day 3

I'm really really tired. I'm trying to force myself to drink this coffee, but my stomach is upset. I'm nauseous. I just want to go back to bed. Slept for an hour, then two more. Not enough.

I hope that they put the next IV in somewhere better than my hand. I really want to shave my arms, but I really don't. It's just that I'm VERY fluffy. When they take the tape off, it's more painful than the actual IV. I just can't bring myself to shave my fur. That would be very un-Cutter like.

Crossing my fingers. So far, so good with the legs. Last time, they went on Day 3. Hopefully, this time, they won't.

Been watching VH1's third series of "I Love the 80's". Today is '84 and '85. I don't know why I watch it. I had very little to do with 80's pop culture. In fact, I hated just about everything about it. The people who they have narrating it are the people I despised in the 80's... the small-minded mall rat types. The rich kids. The closest to me might be that dude from Anthrax, Scott Ian... but even that's pushing it a little.

Yeah, the 80's. I didn't think that things could ever be worse. Then 2000 came along. This country is so fucked up, I actually miss the 80's in comparison.


I'd better start moving toward the shower.

~Here comes the rain again

Just got up from a very wonderful nap. Sleep is better than gold, when you can't do it normally and you suddenly get a few good hours in.

Neurodude did take me off of the Inderal, as it was not completely working on my Migraines. Ok, this was good.... not so much. The problem is that Mr. Cutter, apparently, has to be different all the time. Mr. Cutter has to get about 3 different types of Migraines, so, Mr. Cutter is royally Mr. Screwed when it comes to headache medications that work.

First, there are the "normal" Migraines. They come from "normal" things... just, one of those headaches that suddenly get into Migraineville, somehow. Often, a few Extra Strength Tylenol and a few botles of water, taken at the right time, can manage to get on top of those. Then, there are the "uh oh. I have MS" Migraines. They come from the fact that my brain is, literally, looking for a way out of my skull. They, sometimes, respond to anti-inflammatories, like 800 mg Motrin, and ice packs. Finally, there are the High Blood Pressure Migraines. Those are HOLY FUCKING SHIT bad, they don't respond to anything, and most medications will only make them worse.

Solu-Medrol raises your blood pressure. Stress raises your blood pressure. Drinking raises your blood pressure. "I'm gonna die, I want snushi!" raises your blood pressure. I could go on.

So, after another hell night, I took my little blue capsule.

This is a good thing. No more HOLY FUCKING SHIT bad Migraine.

The butterly - IV thingee is out of my paw. This too, is a good thing.

The fact that Neurodude "forgot" that he prescribed the Inderal for my High Blood Pressure, and not only my Migraines? Not so much.

Well, at least I know a sure-fire way to off myself. Just stop the Inderal and then, well... when it rains... it pours.

~Day 2

My head hurts. Another 3 hour of sleep sort of night. Brain was racing a lot. Migraine. Awful taste in my mouth and really sore stomach. Ah, the fun of Solu-Medrol.

Today there's some sort of Nor'easter weather thing going on. It's cold. It's raining. What will Nessie wear to the appointment?

This is still way better than the hospital... and Bunny completely agrees with me.

~One down, four to go.

I'm really tired, and I need to be in bed. Just wanted to let people know that things went ok. They put the IV in my right hand, and it's still in. I shouldn't use my hand too much. :/ Hopefully I can get them to take it out tomorrow, I go nuts when I can't wash my hands properly.

Hopefully I can write more, later or tomorrow, or something. I'm pretty out of it, so I'm just going to go easy on myself.

This is much better than the hospital though, I'll tell you.


Just had an odd thought... Heaven, Hell, Hospital, and Home all start with "H".

That's about where my brain is at. Sort of a Hummmmmm...

~Here we go

I'm going on about 3 hours sleep. This is not good. I'm going to need all the energy I can get to make sure that I don't fall down when I get in there. It's a "private outpatient clinic", whatever that means. As long as they can do the IV, and maybe help me to update my DNR with the correct address, I'm good. If I fall, they'll send me across the street to the hospital. That will suck, big time.

My skin is already itchy. Solu-Medrol can make your skin itchy. My stomach is bothering me. Solu-Medrol upsets your stomach. This should be fun.

Just letting y'all know, I might be a bit of a prick over the next week or two, if I can manage to stay out of the hospital and manage to post here. Don't take it personal. Steroids can make a person be like that... to say nothing of MS. :/

~and in the end

I'm nervous about tomorrow. More than anything else, I'm worried that they won't let me go home. I'm not doing well at all, and I don't know if I can fake it well enough. I guess that I could always leave "A.M.A.", but I hate doing things like that. I don't know... I mean, if I'm that bad... 'about to die' bad... I just want to go home. I don't want to die in the hospital.

I'm sorry that I'm so morbid. This is really the only place I can talk about it though. Writing in my journal just isn't cutting the mustard with this. No one will read that until I'm long gone... and I guess it makes me feel a little better right now, to know that someone is listening to me, as morbid as I might sound. It's easier online. No tears or sad faces to see. I don't deal well with tears... I always feel invalidated somehow. Tears and laughter... they can both be brutal.

I'm trying to "put my affairs in order". It's a bit much to deal with. My brain keeps blanking out on me. I can't think about things like legalities right now... I shouldn't have to think about things like that at all, let alone at the age of 36. I think that it must be easier to just die, rather than know about it first... easier on everyone involved.

Think I have to get into bed now. Tomorrow is going to be a long day.

~Public Notice

I just wanted to state this, for the record:

If I die, I do not want any blood relative to have anything to do with my person, or with my belongings. I have a "best friend", who is currently listed as my "health care proxy", and a half-brother (an exception to the previous statement about "blood relatives"). They know and understand my wishes, and are designated by me, to act and speak on my behalf.

My IP# should act as my signature.

540pm102205 ~comment

(In "Mr. B.")

"I hate to advocate drugs, alcohol, violence, or insanity to anyone, but they've always worked for me. "
H. Thompson


It's when they stop working that it becomes sort of tricky. :\

~Mr. B.

It's not that I don't want to write, I just can't seem to get my thoughts into anything resembling sentences, lately.

I had a few beers, last night, and a few shots of Vodka. Mr. Boston Vodka, to be more specific. It's cheap, and the label resembles one of the tattoos on my left leg. The way I see it, it must be fate. Right. Anyway, I drank and I got sick into the toilet for a while. It cracks me up. What the MS does to my brain feels exactly like a hangover. So, I have no clue whether or not I actually have a hangover or not. Sort of like not knowing whether or not I had MS for the last 23 years. Alcohol has been a part of my diet for quite some time. How was I supposed to know whether or not I actually had problems with my eyes, legs, balance, or speech?

Fuck it, if I'd known, I'd probably have drank a lot more. The way I see it, if you're gonna go out, go out with a smile. My beer never judged me, and was always there for me when I was down. Mr. Boston just helps out when Mr. Beer is scarce.

Boy, am I ever dehydrated. That is not the MS.

~Here comes the rage again

I can feel it creeping up on me. It's just "that time of year".

I'm nasty. If I'm not saying something to a person, it's because I'm using every last bit of my strength to "control my tongue". I spit fire, if I don't. I hate the world, and every last mother fucker on the damn planet.

I don't care what the fuck it is that my brain is doing when I get like this. All I know is what I feel, and what I feel, is HATE.

1254pm102005 ~comments

(In "Depression. The other white meat.")

is it at all possible to let go, without pushing away? to detach, without needing to sever the emotional equivalent of a leg in a trap?

if not, it would suggest to me that, however much it hurts - and it's evident that it's quite a hell of a lot, certainly more than i can grasp - there's that in you which needs to stay connected... else the effort to disconnect would be less violent.

it sounds like you struggle against yourself... a lot. which seems terrible, and i have no advice. though i understand the "i don't want to hope" strategy. i think it even makes its own kind of sense.

but maybe there's a place between endless, broken hopes, and utter, shielding despair. maybe?

not that i would presume to assert it. it's a place i doubt i'll ever reach... i fully expect to die with the word "regret" etched in my mind.


(my reply)
"there's that in you which needs to stay connected... else the effort to disconnect would be less violent"

...and it drives people bonkers. One day I'm in love, the next day I despise the same person, and the day after that, I'm begging for forgiveness. Usually, people just leave... not that I blame them. If you care about someone, and they keep spitting fire at you, at some point, you have to walk. I often spit fire... most times, I don't even know I'm doing it... it's just this messed up form of "shielding", I suppose. Not that I don't warn people, and apologize in advance about it, but until it's happening... people don't really understand how painful it is to be close to me, until they're running away.

I think I'm ranting. I don't know what I'm talking about really.

I'm just glad that you're reading my blog.

thank you

Signatures

I saw this one today, and I loved it so much that I just had to share it.

Grant me the senility to forget the people I never liked anyway,
the good fortune to run into the ones I do,
and the eyesight to tell the difference.

~Depression. The other white meat.

I'm starting to worry a little.

I'm supposed to go have this solu-medrol treatment done, next week. I begged my way into getting them to let me do it "outpatient"... and my best friend agreed to take me. (I'm VERY lucky there.) I'm worried, though. Last time, I got worse after the first day or so. I was in the hospital, so it wasn't difficult to get a wheelchair and roll around with it. This time? It scares me. If my current symptoms get worse, I'm SO fucked. It's not just the wheelchair thing... it's my eyes. If my eyes get worse than they've been... I'll be blind, and I don't know if I can handle that at all.

Part of me wants to say "no" to the treatment, the other part just really wants to get better, and hopes that maybe this time it'll work the way it's supposed to. I'm NOT doing chemo. No way. I just don't think that I could deal with it. If I'm dying, I'm dying. I don't want to torture myself before I go.

There was something in that movie, the other night... "Dying Young", that struck a chord. I don't remember the exact words, but it was something along the lines of "I don't want to hope". That's sort of how I feel right now. I don't want to find anything in life worth living for... it'd break my heart knowing I had to leave it. I want to continue looking on the negative side... I want to continue being bitter and pessimistic. I want to get to the place, and stay at the place where I can go, without tears.

When we think we're going to die, we push people away. Who knew? You can ask my friends... I've been doing it for years... pushing them away so that I can kill myself. When it came down to it though, I couldn't do it. Damn wuss.

I don't want to hope anymore. It hurts too much.

507pm101905 ~comment

(In "not dead yet")

Some time ago I went through a bout of severe depression . Actually I was seriously considering suicide . I figured though that I owe it to my kid ( who was much younger at that time , he's 17 now ) to seek help, hence I started my pilgrimage through the psychiatrists /psychologists offices .In general I have a very hard time accepting mood and mind altering medication so I was started with the left foot in that direction , but to my surprise , the only shrink that did not pull his prescription pad immediately and more importantly did not label me pathologically mentally ill asked me one question : what book is on your night stand now ?? I said I am reading Faulkner , As I lay dying . He shouted out loud , There's your problem. Stop reading morose material from clinically depressed little fellows and you won't feel that dismal yourself. Needless to say that years after that I am still seeing him and our conversations are a joy !! I guess the moral of my story is that the effect our cognitive stimuli has on our psych is underestimated sometimes

A____


I've done my rounds of fighting with depression, that's for damn sure, to say nothing of the therapy. I'm using that, as much as I can. "Think positive" "Don't get into that downward depression spiral" "You never know"...

...and then, I get dizzy, and can't see the screen of my laptop for more than 5 minutes at a time, and I say "Fuck it.", and I go back to laying in bed, wondering what will happen after I die.

705am101905 ~comment

(in "decisions")

wait a sec... do you mean to say that the symptoms i remember you describing a couple of years ago weren't MPD/PTSD, but were in fact effects of the lesions from undiagnosed MS? or is *all* of this shit combining in you?


Yes, it was all the MS. Not that I didn't have a crappy childhood, and abuse and trauma issues out the yang, but what was going on with me, that I was actually disabled because of, was the MS, not MPD.

They never gave me an MRI.

One thing led to another. They called me "crazy" because of my appearance, basically, and that stuck. It'd be one hell of a discrimination case, but I'm simply too tired to handle it. What brain I have left, I'm using just to get by day to day. :\

~not dead yet

Yesterday and last night were really rough. Scary. At the moment, I'm still bad, but I'm REALLY trying hard to keep going.

The doctor called and informed me that there was no sign of infection in my urine, but that the results of the cultures haven't come back yet. Basically, my urinary tract is just suffering from "oh shit. we have MS" syndrome. That is to say, it's on its way out. woohoo.

It's tough to explain how I'm feeling, symptom-wise. There's something MAJOR going on with my eyes. It's not really my eyes, just the part of my brain which controls them. I think that it amounts to me going blind, but I'm trying not to think about it too much. I'm just pretending that it'll eventually clear up. Maybe the solu-medrol will help. I can hope. Out of everything, losing my eyesight will kill me. My life revolves around my eyes. It may not be much of a life, Internet and TV, but it's all I've got, and I've made the most of it.

The pain travels. The dizziness is pretty constant. I'm pretty nauseous. The legs are bad. The ears ring, pretty much, non-stop.

I watched "Dying Young" last night/this morning. It sucked. I hated it. I thought it might be a good movie to watch, given my current circumstances, but all it did was annoy the piss out of me (thankfully, not literally). It was classist, and completely unbelievable, in my opinion.

I miss "Dead Like Me". I really liked that show.

631am101905 ~comments

(in "Got syrup?")

Hi Cutter,
I just wanted you to know that i completely understand where you're coming from...I am secondary progressive and i am scared out of my headlights just thinking of what's ahead of me ...

Take care

A____


Hi A____, yeah. I get a little scared sometimes... and FRUSTRATED.

appointments

The first appointment is for Monday at 10AM. The place is across from "Memorial" at 25 Oak, the Private Outpatient center.

So far, my urine shows no signs of infection, but the cultures are pending.

Woohoo. It's MS urinary tract breakdown. Fun Fun Fun.

They'll give me another MRI after the next SoluMedrol treatment, before the next Neurodude appointment, to see if it did any good.

Joy.

~Got syrup?

There's plenty to tell, but again, I'm staring at the screen not feeling like writing it all out. Doesn't help that my eyes keep going in and out either.

I think that the short of it is that they think I have "Secondary Progressive" MS. I'm not responding to the Solu-Medrol treatments. They want to try once more, but if that doesn't work, it's chemo or bust.

They took me off the Inderal, prescribed Neurontin that I can take as needed to see if that will help with pain, and let me pee in a cup so that they can write me a Rx for one antibiotic or another for the UTI.

Yay! I'm dying! Woohoo!

Sorry. That's just my twisted sense of humor.

I'm a "rare case". My brain is oatmeal, but the motor skills are going last. Joy. I'm always thrilled to know that I'm "unique". It's so easy always being a minority amongst minorities. Makes life a really special, precious thing.

ok... I'm getting evil sarcastic. Maybe I shouldn't write too much more, right now.

~too much

There's too much going on to even think about, let alone write about, right now.

Maybe tomorrow.

~Urine trouble

Have to go to the Neurodude tomorrow.

Whatever... I just hope that he can give me a prescription for an antibiotic. I have a UTI and I'm starting to piss myself. Gotta love MS.

614pm101505 ~comments

(in "The Game")

they also refer you to psych when you just look at them with a big stupid grin and answer "i'm fine. just fiiiiine" to everything.

my reply:

Yes. That's when you're actually TRYING to get locked up. If you know anyone like that, smack the shit out of them for me. Getting locked up is completely FUCKED UP.

Pot Shot

I hate pot. It tastes like I'm actually smoking someone's lawn. That said, if it's legalized anytime soon... I may well be a frequent flyer.

~decisions

I feel like I'm supposed to make some sort of decisions about all that is going on in my life right now. I don't feel like I can though... and that's not a good thing. When you don't make decisions, often, they're made for you.

A lot of what I have to think about is disease related. The more I read, the more I'm starting to understand that the doctors really have no clue. The medications they prescribe are generally a shot in the dark. Sometimes they seem to stop new lesions from forming, sometimes they don't. The way I see it, without these medications, sometimes new lesions form, sometimes they don't. So... what that amounts to, in my thinking, is that the medications don't really do shit. Too, time after time, I read about people having symptoms from their MS that my idiot docs have told me probably don't have to do with my MS. It seems that they go by the "rule everything else out first, and then if no one knows differently, we'll admit that it's MS related" theory. What really ticks me off is that with the symptoms I'm reporting to them, I've spent decades ruling everything else out... and I don't want to have to rule everything else out again. Believe me, once you've had a cystoscopy, and they tell you that nothing is wrong, you don't want to have another one to tell another doctor that it's the MS that's shutting your urinary tract down. In fact, you don't even want to risk it, so every time they ask you if you're having problems urinating, you smile and just say "no". The same thing goes for having had barium x-rays for your stomach complaints, and being given thorazine for your racing thoughts, and being told that you have MPD because you get lost walking in a straight line. You just get tired of it.

The way I see it, I know myself better than they do. I'm the one who has dealt with this since 1983. I'm the one who knows the difference between an ailment that comes from MS and one that comes from something else. Just because they told me to call it MPD or PTSD doesn't mean I don't know when there's something wrong.

Sometimes, I look at this whole thing and say, "You know what? I did this for years without doctors or drugs. Why in hell am I doing this now?". Eventually, I'll just get to the point where I'll stop working with the Neuroidiots. If something happens, I'll go to the ER, or just call it a day. I'll just call myself DNR/DNP/CCO - "Do not resuscitate. Do not prolong. Comfort care only."

All that said, ~Blog would like to thank me for visiting ~Blog.com, and ask me to please be patient while they attempt to fix some issues....

Good fucking grief.

shit

(bladder problems)
Just one more MS thing that has been going on for years, that I wrote off. I even went to the urologist... and endured that damn cystoscopy.

Now, how exactly should I go about getting a prescription for the UTI without going through HELL? Am I supposed to ask Neurodude? Should I go to the Primary, and be humiliated?

...maybe the answer is... Depends.

~The Game

My head is hurting. It's a weird hurt, although not completely unusual. Describing the various pains which come along with this disease is enough to make a person's head hurt alone. That's one of the more annoying things about my trips to the Neurodude... the part where he asks me to describe this, that, or the other pain. My loss though... as of yet, I don't have any medication for pain. True, I have Inderal and Ibuprofen, but honestly, that's like putting a band-aid on a dangling limb.

I'm a bit nervous about Monday's appointment. I don't want to completely snap in there. It's just that they're really pushing me... I don't play games well. True, if I want their help, I have to play their game, but I'm tired of the game. I don't like the game. Playing the game makes me sicker.

Maybe I should just go in there and answer everything in "yes" or "no" answers. ...stop trying to describe things... trying to describe things only confuses them.

"Are you in pain?"
"Yes."
"Describe the pain."
"No."
"Why won't you describe the pain?"
"No."

That's about where they'll refer me to Psych.


It's time to take my Inderal. I don't want to. I want to stop taking it. I'm tired of taking drugs which you have to take, whether or not you're feeling the symptom they're prescribed for.

I hate that all the good drugs are either illegal or off limits to me. They don't like giving pain killers to angry guys with tattoos. They think that we'll sell them, or that we don't really need them. I wish I could act like a pussy... maybe then they'd give me meds that work.

~another sorry

It's been a rough couple of days. I'm glad that ~Blog is running well enough, at the moment, for me to post a sentence or two. Generally, I've just been in bed. I'd probably still be in bed if I hadn't needed to get a water bottle and use the bathroom. I'm hoping to use the momentum and manage to keep moving for at least an hour or two. I have to get the trash out, the mail in, and myself into the shower. I'm not getting my hopes up though.

It's raining. It's been raining for days. Doesn't make taking the trash out too easy. I only have two hands, and Nessie takes up one of them. That leaves one, and if I want to stay dry... well, I'm still working on the whole balancing thing. My balance isn't good. Holding an umbrella and managing Nessie while walking is quite a bit of a challenge.

I'm trying really really hard. I'm in pain. That, as difficult as it is, I'm managing to deal with. I try to stay still... stay in bed. My eyes are really fucked. My ears ring almost non-stop. Dizzy. Memory sucks. I'm trying and trying. I keep hoping that it'll pass... that I'll get a little better. I don't want to go into the hospital.

I'll be trying to blog, when I can, like now. I don't have it in me to move my blog. I sort of have to go with what I know, right now. If ~Blog isn't working, I'll just have to skip it.

So... sorry I'm scarce. Wish I could, at least, catch up on my blog reading. I do hope that everyone is doing ok... and I appreciate people stopping by, even though I haven't really written too much that's worth a damn lately.

Thought I'd share this

From the Yahoo group I belong to:

---

I'm bisexual woman with multiple sclerosis. My straight, gay-supportive husband is quadriplegic. An understanding minister married us as our gay friends witnessed, as well as family, and all signed our marriage certificate per the Methodist Church and their God. However, if we file a legal marriage license, we lose everything, even home help assistance. I say disabled is homosexual without the coming-out party.

If we file a legal marriage license, government says husband loses all of his welfare income. We then are required to share food stamps and live off my meager earned social security credit. That's a whopping limit of $836 dollars American each month. I have to release my disabled low income apartment and move into his big low income room, and without accommodations for my particular medical problems. (i.e.you can't make a drive-in shower into a bathtub). I lose my home helper because the state thinks one helper can simultaneously assist me, weak but walking, dizzy, slurring around town 3 to 15 miles per day for errands and exercise, AND at the same time helping my lovely stephen-hawking-ish quad 5 hours each morning as he eats, bathes and toilets. Yeah right.

So much for the 'defense of marriage act'. The current American government doesn't smile on disableds marrying anymore than gays. Expectation is one must find and marry an affluent, well-insured, healthy straight with money. Otherwise, you'd better hide that holy marriage certificate. (Dan Savage where are you?) Ungodly discrimination all around.

---

~debating

Seems that a lot of people are leaving ~Blog and heading over to Blogspot. I can't say that I blame them.

I had a blog over there, briefly, last year. I'm particular though... if I can't get my user name, then I balk. Too, I put a lot of time and energy into this blog. Starting from scratch is something I'm not sure I'm wanting to do. I feel more inclined to just stop blogging altogether.

I'm not doing too well lately. Maybe now is a good time to transfer. I can spend my "I can't write" time re-posting my archives. It's an idea. It's frustrating. Every morning, when I'm ready to start writing, the extra time spent waiting for ~Blog to (maybe) load knocks everything off. Too, I can't expect people to read my blog when they don't want to go through the hassle of waiting for it to appear, if it appears.

It's just that this has been going on for so long now. I keep hoping that I can just wait it out, but I'm beginning to think that it'll never be "fixed".

I'll keep thinking on it, I suppose.

(The Anatomical Exhibition of Real Human Bodies)

(www.bodyworlds.com)

It looks really fucking cool to me... but I don't know that that says much. I'm pretty morbid... the more graphic, the better... and this looks pretty darn graphic to me.

~ssdd

...and now ~Blog is back to being shitty. This sucks.

Jumping ship really is tempting.

~What a real friend is

The definition of "real friend"?

A "real friend" is someone who forgives you.

Period.

End.

~still stubborn

My friend offered to take me into the ER today, and believe me, I thought about it. Again, it's a matter of weighing the bads. Yes, I'm having a rough time right now, but in the hospital, it's simply hellish. I just wish that there was a way to have a nurse come here to do the IVs instead. The most my doc offered was 3 days in, 2 out. ...and that's after being admitted. Last time, it took something like 12 hours to be admitted, and from what I was told, I was lucky. People wait for a bed for 2 or 3 days sometimes.

I just don't feel like I can go through that right now. I just want to be HERE... HOME. It took almost a year to get into a place I could call home. I don't want to leave it after just 7 weeks of being here. So... I'll not go. I have my appointment on the 17th. I'll discuss things with him then. If I end up completely incapacitated before then, maybe I'll go in... but for now, shoot... I'm an old pro at suffering.

1125am100605 ~comment

(in "100 things" entry)
Cutter, You're a shape shifter!

yes... what of it?

~trying but

I am really not doing well. This sucks.

~off

It was a rough night. I assume it'll be a rough day.

I'm due for a shot. Maybe that will help some.

My words look weird. I'm typing them, but when I look at them, they look... weird. ...sort of like, when you see or say a word, and it, all of a sudden, looks off somehow... even though it's spelled correctly.

I should get back into bed. I don't know what I think I'm going to accomplish, sitting at this computer.

October 4, 2005

I'm not doing well at all.

~Mr. October is not so nice.

I framed and hung up my DNR certificate today. What did you do?

Yes, that was a rhetorical question, you fucking idiot.

~another day, another lesion

Yeah, the head's not too good. I want to write, but it's difficult. Damn eyes are making me nuts. Vision goes in and out of focus way too slowly.

I have an appointment with the Neurodude in a few weeks. I already know what he's going to tell me. I didn't listen to him... didn't go into the stupid hospital back in August. Whatever. Maybe, once he starts treating my symptoms, I won't be so cranky about the whole thing, but as of now, it seems that there isn't much they can do. Pain killers won't work because the pain is neurological, so they say. Nothing they can do about my ears... the ringing or the hypersensitivity. The things like rage and being completely paranoid, he doesn't seem to want to deal with at all. He seems to think that the Solu-Medrol treatments are what I need to do. They "reduce swelling". Ummmm.... ok. So, what exactly is that going to do? Last time I went in, I actually got worse.

It's pretty screwed up... they seem to know less about this disease than the people with it know. All they really know is that they can't cure it.

The whole dying thing is difficult to chew on. Yes, this disease is killing me. That's true, but the when and how exactly are not certain. I give it a couple of years until I just can't take anymore. I really am trying not to be so negative, but it's tough.

My head hurts.

October 2, 2005

Going to play Populous until I really can't see.

Thinking about D.

SHOOT ME

~You left me standing here

I'm dying. I find that a bit funny.

What would you do? If you knew you were dying, what would you do?

I could do anything. ANYTHING. Why don't I? Fear, I suppose.

I have a little time left... a little. I think that as time passes, I'll know. I'll know what to do. I'll lose my inhibitions... what few of them I have.

If I die before I wake, I pray my demons my soul will take...

It's all one long and winding road...

~We have no secrets

My mind is racing and dragging at the same time. So, I write.

My poor brain. I feel bad for it. It's tired and scarred. I push it and push it. I always have.

It's an interesting thought (here we go, brain)... I push my brain. How does that make sense? Am I not my brain? How does one push oneself? Does that not imply duality? When I say "I", what do I really mean? What am "I"? Where am "I"? The only thing I think I have down is the "Who am I?" part.

When things start making sense... when they start making sense, I get scared. Finding out that I'm wrong, I can deal with that. When I find out that I'm right... that just opens doors... and I'm petrified.

I used to have more faith in myself. I'm not too sure what caused me to lose so much faith. No. That's a lie. I do know what caused it. The lies of others. Sometimes, I just know things. Then, people lie, and I think that I'm just delusional or paranoid. It's the nature of the beast... lying. What other creature on this planet will smile while attacking you? What other creature on this planet will smile while being attacked? Lies. That's what our brains are evolving to deal with. That's our greatest threat.

Energy. Thoughts. Thoughts are "electrical impulses". We are energy. We are a bundle of electrical impulses. The brain... we use our brain to move... we send the electrical impulses we need to, in order to use our bodies. Nerves. We use nerves to send and receive electrical impulses. Nerves are coated, insulated, to stop these impulses from shooting out all over the place. I assume, it also insulates us... protects us from the electrical impulses of others. I had ESP, when I was born. That's what my mother told me, anyway. I suppose, it was useful. I continued to strip my nerves of their insulation. That's what they call "MS".

Our brains are evolving. One day, we won't be able to lie anymore.

I know.

October 1, 2005

I'm in an odd place right now. I think it's somewhere between completely non-functional and smiling-idiot. I don't feel good, or well, or normal. I feel altered. My eyes aren't doing well... that's never a good sign. Trouble sleeping, more so than usual... no sex-drive... yeah... I'm off.

I'm wanting to start something... like another blog. Not that I don't like my blog, it's just that ~Blog is really slow. Too, again, I feel like too many of the wrong people have the address. Yes, that's my own fault, but I guess that sometimes I just want to be away from people who (think they) know me. Also, I feel too scattered... there are too many places online that I write... too many boards, blogs, groups, clubs, etc. I feel like... I just want it all contained... all in one spot. Shoot, I can't even manage to do that with my journal. I'm writing here, instead of in the notebook.

I don't know why it matters to me. Anyone who really wants to read all of my writing will do the sorting. I don't think that I'll ever be able to myself. So anal-retentive, I am.

~When I bit off more than I could chew

...and here we are in October.

It's chilly enough to use the heat. For the life of me, I can't seem to get it to work though. I'm going to have to call about that.

The brain is humming along... functioning, for now. It's the usual, really. ...the way it usually is about this time every year. Warming up for the holiday melt-down.

I'm a lot calmer about the crap that happened last year. I'm not wanting to shoot anyone over the whole thing anymore. I feel pretty good about the whole thing, actually. It showed me that I can get through some pretty extreme things. It showed me that as much as I doubt myself sometimes, I'm still the same old tenacious bastard I've always been.

I don't want to call it a "learning experience", because that completely downplays the whole traumatic mess. I did learn a few things though... if nothing else, I learned what was actually wrong with my brain. Not that I needed to go through all of what I went through to learn that though.

They say, things happen for a reason. Sometimes, I think, they happen for many reasons. The entirety of the last year was one of those times. Things happened in my life, they way they did, for many reasons.

I'd sing "My Way"... but I think that I'd wake my neighbors. ...and that's not my way of doing things.