December 31, 2005

7:11 AM - 12/31/05
Just Sayin'

Happy New Year!

Hope that everyone has a great night tonight, and lots of good luck in the year to come.

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7:39 AM - 12/31/05
~On your mark... get set...

Just wanted to wish everyone who shares a calendar, a Happy New Year.

Whatever you're doing as the calendar turns over, I hope that you'll be having fun.

May the worst day of 2006 be as good as the best day of 2005, all the way around.

---

9:46 PM - 12/31/05
(language mistakes)

...My mother was an English Major (I messed up the finishing school thing), and my "dad" was (probably still is) overly anal/OCD.

Little language mistakes make me nuts, whether it's someone else's mistake, or my own. I'll lose sleep over a misspelled word. I'll, literally, get out of bed to fix it.

Right now, I'm obsessing about the word "misspelled". I don't know if it's correct or not. I don't know if it uses a hyphen.

Now, I'm bothered by the word "hyphen". Is that spelled with an "o"?

Thing is, I can't really do this anymore. With the MS, there's too much that I forget. If I think too hard on things, I'm not able to write anything at all. Between spelling, grammar, and punctuation, I'll freeze.

I try to settle with, "If I can read it, most likely other people can too." I just make sure to read everything I post. :\

---

10:51 PM - 12/31/05
Yay me!

Congrats! It's the first year since opening it that I didn't blow up the board! I didn't even kick anyone off!!!

WOOHOOOO!!!!


ok, fine, that's because there's just about no one left and the hacking purged for me, but hey... I didn't even rearrange the furniture!

December 30, 2005

1:19 AM - 12/30/05
~Neurodude

I just wanted to say something about "Neurodude".

I only call him that because he's 1) younger than I am, and 2) on the "Hottie" scale, he rivals Goran Visnjic. I'm not into him, really, but being who I am, I know the scale.

I never mean him any disrespect. He's one of the nicest doctors I've ever had to deal with. He tries, and that's #1 in my book. He could miss that I have a big ol' brain tumor and I wouldn't care. He's nice, he seems to respect me, and that's all that matters. I can look anything up online that I want to. I don't need him to be a walking Medical Dictionary. (Thank Scooby, because his English is atrocious!) I just need him to pull the strings and do the research I cannot do. "Dude! I'm seeing Ham and Cheese Sandwiches!...and they DON'T like me!" "Ok... try this medication. They say it helps." "DUDE! I can't take that! There's law suits!" "Ok... we can try youraboobmatol." "You rock! Thanks Neurodude!"

I hope that he always stays "Neurodude". Those old Neurocrunchies need to go the way of the LP.

---

5:34 PM - 12/30/05
~Semi here

I've been trying to get to the point of being able to write all day. I'm pushing myself to even write this.

I feel like crap. I'm tired, and my brain is stuck at "Duh".

There's a Law & Order marathon on. That's about where I'm at... stare at the tv.

Everything is overwhelming me.

Maybe it's from drinking. I had a few beers last night. Sometimes depression goes along with rebounding from that.

I feel like crawling into a hole. My bed will have to do though.

---

11:13 PM - 12/30/05
~Al Coehall

I remember being at my neighbor's house, before I left PA... I think it was Thanksgiving or Easter... one of those holidays. Her family was there, and somehow the subject of drinking came up. We were all drinkers so, no big surprise there. My neighbor's mom was there, along with a lot of other friends and family. I forget the actual "question", but what it amounted to was, "Why do you drink?"

After everyone had given their 40 ounces worth, I took my turn. I answered, "I drink to feel normal." That, oddly, got laughter from my neighbor's mom. Seems most people drink to get drunk, or to get a buzz, or to pass out. Me? I drink to feel normal. Before you jump to the "alcoholic" argument, let me explain.

When I don't drink, I feel more pain. When I don't drink... when I don't drink I actually feel this damned disease. If I drink, I can pretend that my eyes are fucked up from the alcohol... I can pretend I'm falling and losing my balance from the alcohol... I can pretend that I'm nauseous, or angry, or weepy, or lost... because of the alcohol. If I don't drink, even after going from HEAVY drinker to non-drinker, and giving it ample time to get out of my system, I FEEL SICK.

I drink to feel normal. I drink to feel like anyone who has been drinking feels, even if I'm still sober.

So, if you want to know what (my) MS feels like, just get REALLY drunk. Then, take it all in for about 24 hours or so from when you started drinking.

That's Cutter's world, sober or not.

I drink because I think that maybe, if I can get drunk, I'll understand everyone else a little better... even if it's at their worst. It's the closest I can really get to relating.

I also drink because I'm bored, but that's another entry.

December 29, 2005

9:40 AM - 12/29/05
~Dream On

Spoke with Neurodude, briefly. Called Neurology and had him paged as soon as I woke up. He said that he'll be talking to them today, and that he'll definitely call me back today. He told me that he wants me to stay on the Lamictal, and see if higher doses will have an effect, even though it hasn't done me any good that I can really notice yet.

I'm still really tired. I almost just went back to sleep after hanging up from Neurodude, but I really wanted coffee. My eyes keep closing as I'm sitting here, so I'll probably get back into bed, but I don't know how well I'll sleep. I'm waiting for that callback. For all I know though, it'll be at 8:00 tonight.

I'm trying to stay away from the Epilepsy sites. It could be something else entirely, and it could be nothing at all. For all I know, it's all "in my head".

Siouxsie Sioux was in my dream. I just thought of that. I think that "in my head" led to the song "Zombie", which led to thinking about the lead singer of the Cranberries, which led to remembering the image of Siouxsie. Odd dream. She was really glad to see me. She looked her current age, I guess, but was wearing a lot of make up, like "back in the day". I was all cut up... my arms. I suppose, sort of what I looked like "back in the day" as well. My friend L. was in the dream too. Some weird thing about trying to get me to come stay with her, but someone else was trying to get me stay with them in another State... somewhere out in the Northwest, I think.

The dream didn't feel really bad. The people in it felt warm and familiar.

It was a dream I wouldn't mind finishing.

---

10:40 AM - 12/29/05
The hit count (18)

Holy Hell!

You're flyin'...

Feel good?

I suppose. Never enough though. It gets addicting. More more more. :\ Make more people want to read. Post more. Twisted.

47,500 now

---

5:38 PM - 12/29/05
~waiting

Still waiting for the phone to ring.

I really fucking HATE this.

Trying not to let myself jump to any conclusions, but the later it's getting, the more time I have to fail miserably at that.

There's a lot resting on this... a lot resting on the answer. It's the difference between "something else happened" and knowing that I have full access to my life. If it's not physiological, then it's psychological, and I CANNOT do the damn psychological thing ANY MORE. I can't analyze myself anymore. I can't dig anymore. I can't keep combing through my past with a fine toothed comb!

If you had to think about, analyze, and deal with everything you've ever said or done, or even thought about, and everything that's ever been said or done to you, over and over and over again, for about 20 years, what sort of condition do you think that you'd be in?!?

I need it to end!

--------------------------------------------

5:48 PM Neurodude called
If it was a seizure, it was in a part of my brain too deep for the electrodes to pick up.

Stay tuned, I'm back to being completely fucking suicidal.

Happy fucking New Year.

---

8:58 PM - 12/29/05
~FTW

The reality that this isn't going to stop... isn't going to get better... sometimes I can delude myself...

It's like that EEG. I guess that I thought that they'd magically find something... that all of a sudden everything about my life would make some sort of sense... that some of the confusion would stop.

I sit here, my head hurting and throbbing from some electrical hum that I cannot locate. It's not in my head. When I cover my ears, I cannot hear it. Earlier, my ears were ringing very loudly. That was in my brain. It didn't go away if I covered my ears. My left leg collapsed once today. That was in my brain. There's nothing actually wrong with my leg. If I get stressed and my arm starts to shake, that's in my head. If I can relax, the shaking stops.

So, being that there's nothing showing on the EEG, where do the "seizures" come from? If it's not in my brain, where is it? It's not something I choose to do. It just happens, and it stops when it's ready to. Some of them seem to be triggered by certain external things, like flashes of light or patterns... some of them are more extreme than others. Some of them come out of the blue, but they're mostly milder.

I'm feeling pretty adamant about this. There's something wrong. Perhaps it is too deep in my brain for the electrodes to pick up... and even if that's the case, there's nothing they can do about it. Just keep taking the meds which, so far, don't do shit. Why am I so pissed off about this? Because of being called "crazy" throughout the majority of my life. Because listening to doctors ruined my life. Because something is wrong, and I want to know what exactly it is. I don't care if it's Psychological. I've already learned how to live with the worst Psych diagnosis out there, I don't care if it's something else, just tell me what it is! I've learned, through being afraid of being called a hypochondriac, to keep my mouth shut. If it hurts? Shut up about it. Don't let them see you limp. Don't let them see you collide with the wall. Don't let people see you in pain. Don't let them see, they'll just say you're crazy and tell you that there's nothing really wrong but tell you to "take this pill anyway". I CAN'T CONTROL THIS. I can't hide it! I'm not just thinking that there's something wrong! If it's PTSD, FINE! Tell me what caused it! I'll work on it, face it, deal with it, suck it's damn dick if it'll help! I don't want drugs. I don't want hospitalizations. I don't even really want the damn attention! I just WANT IT TO STOP!!!!!

Do you know what it's like to fear people with cameras because you might end up in jail because of them? Let me tell you then... IT SUCKS!!!!!

I'm so sick of this shit.

---

11:16 PM - 12/29/05
~beer good

Watched ER. Drank a couple of beers. Trying to stay calm.

See, that's the Psych stuff. I know one from the other. My getting ANGRY like that is Psych stuff. Not that it's not valid, it's just not coming from something Physiological. I got angry. I felt frustrated. It poked at some of my issues. That's Psych stuff.

Tremor. Intense Rage. Tiredness. Weakness. Memory loss. That's MS stuff.

Those "seizures"? That's neither. With MS, sometimes seizures happen. Like I said, sometimes I have them "out of the blue". I have lesions on my brain, it's completely understandable. Those intense ones though... nope. I've had them for too long. It's not MS realted, unless you can be born with MS.

I'm going to have to work with Neurodude. The way I see it, if he's willing to send me to a Neuropsych to rule out Mental Illness, he should be willing to send me to a General Neurologist to rule out other Neurophysiological problems. He's supposed to be a General Neurologist, Resident or not, I choose HIM.

Hey, I'm one way to learn about Neurology.

Wish that humming sound would stop. It's only in this room (the "living room"), not in the bedroom.

Argh.

December 28, 2005

7:57 AM - 12/28/05
~EEG day

I'm not supposed to have caffeine, so I can't have my usual coffee. Grrr

I have no clue how this thing will go. Either it won't be a problem at all, or it'll be complete hell. Taking pictures of my brain is one thing, purposely trying to make it do its worst is another. Being watched while it's doing its worst? VERY not something I want.

Hopefully I'll be able to write later on this evening. If not, things didn't go too ok.

Don't take any wooden nickels.

---

6:41 PM - 12/28/05
~Faking it

So, it's done with. It could have been worse, but it could have been better.

I got to show the tech what one of my more intense "seizures" looks like. woohoo.

I got to, again, be graced with a "I've never seen _________ before!" in reference to one of my "Cutter is fucked up" symptoms. joy.

It's now on my chart that I am VERY photosensitive. woohoo and joy.

Thankfully, no one was hurt.

Now, I get to wait for the results.

woohoo, joy, and good grief.


There was some comic relief though... I have to say that. The tech was great. While she was putting the electrodes on my head, I shared my ideas about what I was going to do after the EEG. I thought that my plan just made sense. I looked like I had some horrible disease, due to the colored dots all over my head, so why not use that to my advantage? It only makes sense to sneeze on the produce at the food store! I thought that maybe, if they had to throw it away, I could get it for free, or at least, a discount. After discussing it though, I thought the lobster tank would make more sense. Lobsters are hard to come by these days. WAY too expensive.

The end of the appointment was really funny. We were discussing people who actually come in there and attempt to fake seizures, and she told a story, no names used, of course, about how one woman came in and attempted to fake seizures during the test, stopping and starting with every flash of the light. Given, she was washing the goop off of my head at the time, so I couldn't see her, but from what RavensWings told me she was attempting to show what the woman was doing by moving her hands back and forth. The story was funny enough without seeing the play by play. I think I would have pissed myself if I had.

---

8:30 PM - 12/28/05
~hmmm

Well, I did some more reading, just now, and I found that "Reflex Epilepsy" seems like it might be more accurate than "Temporal Lobe"... if it's Epilepsy at all. All I know is that what causes the seizures, aside from the "staring" type seizures, is usually flashes of light, and certain patterns. With both light flashes and specific patterns, the seizures are both scary and embarrassing. If I stare off into space, and that's a seizure, I can deal with that. If I think I'm a creature from another universe, I can handle that. The other ones, the seizures where I seem to attempt to convulse my way through walls and under tables, I cannot deal with those at all.

Here I go with the "not knowing" stage. I'm going to obsess about this until I hear from Neurodude... and if he doesn't have any info for me based on the tests, I don't know what I'm going to do... other than feel frustrated. I guess I'll have to go back to attributing it to my MS. I remember my first "seizure" at about age 10 though... or, maybe it was even earlier than that. I was at a Day Care center called "Neighborhood Center", at a playground nearby. I think that it was called "Max Meyers", or something like that. I'm pretty sure that it was about the time of the fire. I guess that would've made me between 7 and 10. That's pretty darn early to be showing signs of MS. I was in a tree, and the limb had been attacked by something. Maybe bugs, maybe a woodpecker, but it was dotted... there were holes... lines of holes. I started shaking and really going off. I'm pretty sure that I actually fell out of the tree.

Thinking about it though.... there was something in Israel... a "Wildlife" card with something on it that I had the same reaction to. I don't really remember what animal it was, but I want to say it was a moth or something... something with a pattern on it. That would have made me about 5 or 6.

I have a few "seizure" stories. Cage can vouch for the little fish problem I have. That's pattern related too. I can't look at certain fishes. I'll go into convulsions and... well, react the same way I did today.

I've been searching for an answer to this problem forever. I don't even want to go into what I went through in "therapy" attempting to get at some hidden psychological cause.

I just hope that the EEG can produce something. Out of all the problems in my life, this one has caused me the most frustration. I just want to get at the answer so badly. There HAS to be an answer.

It's the last puzzle piece. If I can just fit it into the puzzle... my life MIGHT make some sense to me.

December 27, 2005

9:04 AM - 12/27/05
(I replied to a board post)

I don't do IMs or Chats. Can't manage to keep up with them. As overwhelmed as I can get from something as simple as a post or an e-mail, IMs are like that, only a bunch of them every minute.

---

9:44 AM - 12/27/05
~grump

So, tomorrow is my EEG. I know nothing about what this test entails, other than it takes an hour and I should wear comfortable clothes. Ok, I also know that they stick electrodes to my head and watch my brain waves do the Macarena, but really, that's about it.

I'm sure it'll make me nuts. I hate having tests done if I don't get to know the results immediately. It's probably one of those tests where they tell you to contact your doctor for the results. In my case, that's like pulling a horse out of my ass. Contact Neurodude. Right.

I guess I can tell what sort of mood I'm in.

Think I'll go watch ER.

---

12:20 PM - 12/27/05
kewl

It annoys me when people can't be bothered to spell out the word "because", and use "b/c", and other crap along those lines. Too, things that aren't typed out with a little bit of time and effort, reek of low self esteem. ...and if a person can't take the time to read over what they write, why should I take the time to read it either?

---

3:01 PM - 12/27/05
~not good

I keep fucking up with my meds. I completely blanked out this morning. I don't remember taking my Lamictal, but I wrote down that I did. I remember writing it down, I just don't remember taking it. I'm completely clueless about the Inderal. I didn't write it down, but I'm not sure whether or not I took it. I took it anyway, because I didn't want to deal with a Migraine.

I'm dizzy. My eyes are really messed up. My legs keep collapsing, and the left one keeps doing this really intense spasm thing.

My pulse is ok, about 75 or 80, so I don't think that it's an issue of taking extra Inderal. I'm almost sure that I didn't take it this morning anyway. It's more the Lamictal that I'm not so sure about. I've missed my Lamictal dose before though, and this didn't happen.

Yes, I'm a little nervous about tomorrow, but that's not it either.

I guess I'll see what happens. I'm going to try just staying in bed for a bit.

I really should get one of those plastic med box thingees, that have compartments so that you can tell whether or not you took your pills.

Something's really not right. I don't like this.

December 26, 2005

12:20 AM - 12/26/05
~More on God

So, let me go on some more about God.

Long ago, God began speaking to me. Often, God speaks to me. I call the voice "God", because I just figure it must be. For all I know, it's Peter fucking Pan, but it's a whole hell of a lot more glamorous to call the voice "God".

So... "God" said to me... there are only two things... two words you need to remember...

"Love" and "Create".

Hate comes easy. It takes no effort. It's a knee jerk reaction. To love, that takes work... but it's work that is worth it. Good comes from Love.

Destruction is inevitable. If you walk across a field, you destroy blades of grass. Death is part of life. Destruction takes no effort. Create. Destruction will naturally happen. Creation takes work, but it's work that's worth it. Creation makes life eternal.

Then, I looked in the mirror, and I looked into the eyes of God.

...and there was light.

---

1:21 PM - 12/26/05
~Explanations

My writing has always been a bit cryptic....a lot of metaphor and vague references to things.... double and triple meanings... especially when I'm "altered". Sometimes, words just come out of me... from somewhere else, so to speak.

I've always worried about people reading and judging me by a piece of my writing. That's another reason why I've not shared too much of it with other people... why I've warned people away from snooping. I feared that someone would read into something I wrote and despise me based on what they took from it... or that they'd love me for it, and eventually I'd let them down because they didn't take the time to investigate the whole picture. Either way, I lose.

I can't expect everyone to read my entire blog, that's why I keep the "100 Things" list readily available. There, I tried to hit on things that I felt were important to know about me. There are a few people who have read my entire blog... and I'm honored that they did. I'm honored that they still read.

I'm quick to roll my eyes at people. When people stop by my blog once and leave a comment, although I appreciate the comment, sometimes I still shake my head and say "huh?" It's not their fault though, it's my own intolerance that's the problem... my own impatience... my own raw nerves.

People often mean well, and I'll bite their heads off, or want to, for something they do or say. I expect patience from others... a chance to apologize, once I understand what it is that they meant, or what the problem was. I give people the same courtesy though. If they upset me, I give them all the time in the world to explain. I react strongly, but I forgive easily. I mess up a lot, and I guess I figure people will forgive me. Often, they don't... more often than not, actually.

I'll wait forever for apologies from people I love. I'll accept apologies from people that have hurt me intensely. I'll let people back into my life that hurt me so badly that I had to walk away. I'll even work extra to give them the opportunity to walk back into my life. I'll let people back into my life that walked away from me... and I often beg for those who walked to forgive me.

It's a problem. I expect everyone else to be just like me. I'm completely confused when they're not. I expect people to be able to forgive.

At some point I'll figure it all out. At some point too, I'll figure out how to apologise myself, even if I don't understand why I'm apologizing. Sometimes, "I'm sorry that I hurt you." is enough. The explanations can come later.

I'm working on it.

---

9:47 PM - 12/26/05
~horizontally motivated

I'm going to drink a cup of wine, stare at the tv, take my meds, and try to sleep.

Bunny forgave me for the pillow incident. I think that it helped smooth things over because I finally changed my sheets. They were pretty gross.

I'd written more, but I just deleted it. I think that I'm just too tired to analyze life, the universe, and everything anymore today. (Wish I could remember the proper punctuation for that last sentence.)

---

10:42 PM - 12/26/05
The hit count (17) tired

Just crossed the 47,000 mark.

December 25, 2005

10:53 AM - 12/25/05
~Happy Chanukah

Well, almost. It starts at sun down. Something tells me that, today, it won't even be noticed by most non-Jewish people though, so I thought I'd pick up the ball and say something.

Christmas makes me sick... and angry. I have personal issues with Chanukah which have nothing to do with society, government, or the world at large. Chanukah doesn't anger me in the same way Christmas does though. Although, maybe it's just my perspective because I'm in the "minority", I don't know. Every day, Christianity is "shoved down my throat". There's no avoiding it. Shoot, even in my apartment building, the first thing you see when coming into the building is a big ol' cross. I live in a country that still thinks swearing on a bible is not only appropriate, but that it actually means that a person won't lie. News flash, if you lie, even after swearing on a bible, all you have to do, provided you're Catholic, is go to confession. All you have to do is remember to hug Santa.

Christmas. Used to be Winter Solstice. They had to make "Jesus' birthday" in December. No one wanted to give up celebrating the Solstice... to say nothing of those pesky Jews and their silly Hanukkah. Better get a tree, some gifts, and some lights into this somehow.

Most of my "friends" celebrate the holidays, in one form or another. I wish them a Merry Christmas, or whatever is appropriate to them. If I don't know, "Happy Holidays" works, or even just "Happy New Year", provided they come from a country which follows the same calendar. I don't wish to be rude, and I try to show respect to people, no matter what they choose to believe in, or what they've been brainwashed into. If a stranger wishes me "Merry Christmas", I usually respond with, "Same to you". I know that they only mean well. I'm not out there beating up the various Santa Clausicles.

It's just rather irritating. Every day, and every night, I have to live by the judaeo-christian based laws which are put on the books. Most of those laws, I don't think should be laws. Yet, I follow them. Why? Because if I don't, the people who believe in those laws and fear those who don't, will put me in a cage. I thought that laws were supposed to be about protecting people, not punishing them or manipulating them.

Religion is everywhere in this country. "God" is all over everything. "God" is on our money. "God" is guiding our government. "God" is required to save you from evil liquid beverages and pills and powders. "God" has his own schools, and often attends everyone else's. "God" is in our court houses. "God" is on the news. "God" is in the jails. "God" is in the hospitals. "God". "God" requires donations. "I can't find a good man. At least I have "God" to talk to." "I can't love another man, I'll get beat up for it. At least I have "God" to kneel before." Millions of people have been slaughtered in the name of "God".

Man has created "God" in MAN's own image.

"God" is fashioned for "The Majority".

"God" exists to keep the masses from questioning. "God" exists so that the ones up top can control the ones at the bottom. "God" exists so that there actually IS a bottom.


Jesus wept.

---

2:44 PM - 12/25/05
~GLBTQ

Just got off the phone with my friend, "Cage". There's a slight possibility that she might be able to come up here, in a couple of weeks, to pick me up, and bring me HOME for a week or so.

This makes me feel REALLY REALLY REALLY HAPPY.

Today, I miss "my people". More so than any other time of the year, Christmas and New Year's can kick my ass. Since moving from Philly, it's been pretty brutal.

See, that's what "ordinary" people don't get about the bars and the GLBT subculture. To those of us who don't have families because of being who we are, and to those who can't be themselves for fear of being kicked out of the family, there's always a place we can go... to feel a little understood, to feel safer, and to feel comfortably "normal". Wherever the community gathers, it's a refuge. Even with all the in-fighting and drama (and believe me, there's A LOT), it's still more welcoming than about 75% of the rest of the world to GLBT people.

I should start adding "Q" in. There are a lot of people who simply identify as "Queer". I'm debating that one for myself. "Queer" means "odd" or "different". I certainly walk in those boots. Like many other labels though, it has a REALLY nasty ring to it. It's a "hate" word. It's a label you do not display for fear of getting beat to death by small minded, usually jealous because of being attracted to other men but too scared to act on it, men with baseball bats.

Ah... such is life. Ain't it grand? The American Dream.

Think I should go back to focusing on my potential trip home. I'm starting to feel bitter again.

---

11:22 PM - 12/25/05
Waste

It just somehow freaks me out that I have about $2500 of meds in my mess of a med box. That's more than the most expensive thing I've ever owned.

It's also a WASTE. People can't afford meds, and about half of what I have I probably won't even use. I won't even go into the couple of grands worth of Copaxone I had to throw away, or the bazillion blood tests I didn't need, or the numerous doctor visits I didn't need.

Wish I could share the meds with someone who needs them, without being afraid of being arrested.

December 24, 2005

6:27 AM - 12/24/05
~Yes I can hear you now

I think I drank myself to sleep last night. Passed out. Missed my med time. oops.

The lady next door is obviously going somewhere today. She's been up, chopping, chopping, chopping for hours.

The walls here are very thin, and it's not just that I have sensitive ears either. "RavensWings" has been here. She can vouch for this fact.

I've taken to nicknaming my neighbors. Upstairs, there's Squeaky and Stompy. I've never seen them, but I think that they like bowling. Then, on one side of me is Choppy and on the other is Coughy and his wife Murmur. I call myself Smokey. I'm sure that the smell of tobacco must find all of my neighbors... though I've never smelled anything coming from their apartments, and Choppy obviously cooks a lot, so I think that I'd smell something. I mentioned to Coughy that I was worried about my smoking bothering him, when I bumped into him at the mailboxes the other day. He said that it doesn't bother him, but his wife can smell it. I didn't get to speak with him for too long. Chatty Cathy showed up, and when she shows, I go. I did manage to mention just how thin the walls are before I ran away though. Coughy is, pretty much, deaf, so he speaks VERY loudly... and too, apparently he doesn't like closing the bathroom door at night. Not that he should have to close the bathroom door, it's his apartment, but it's not something I really want to hear. I've not heard him coughing as much since we had our brief chat session... and I think that he's been closing the bathroom door too. I've been trying not to smoke as much in the bedroom. In the living room, I can crack the window open a bit. Living in an apartment complex with thin walls is tricky. Everyone, sort of, has to work together. It just makes things more comfortable all the way around.

I really shouldn't be smoking in bed. When I was talking with Coughy, he said that he really didn't smell my cigarettes, but that the other day he smelled the people in the house behind us burning leaves, and that it was a lot stronger than my smoking. He asked if I'd smelled it too. I didn't have the heart to tell him that it was me... sleeping through my pillow burning up.

Bunny still isn't speaking to me.

---

6:52 PM - 12/24/05
~Missing blog

There's something really funky going on with my blog. Only one entry is showing.



Looks like it's that way with everyone's blog though.



This can't be good.

December 23, 2005

9:39 AM - 12/23/05
~patterns

Having paranoia problems. It's mild, so far, but I have to be wary. It starts off small, but then builds into completely debilitating.

I keep looking back... searching for patterns. I keep asking myself when the last time was I felt this way. The answer is "never", but it's about scale. It's about things going from bad to worse to dangerous. If I'm at "bad" now, when does worse kick in? What can I do to avoid "Dangerous"? What can I do to bring it on? Is there really a way to know before it hits?

My head is swimming... racing... noisy. In DID-speak, I'd say that there was a lot of arguing going on. A lot of it is very loud, and very angry... very threatening. There are some "personalities" that are stronger than others. It's much easier to turn things over to them.

I think about that a lot... how maybe, back in '94, or maybe even before that, I developed DID to deal with the MS and its symptoms. It's a theory. Dissociating from pain makes sense. DID is a very intelligent response to trauma. Why wouldn't I dissociate? What sense would it make to deal with the pain if I didn't have to?

Maybe it wasn't a misdiagnosis, maybe it was just an incomplete one.

---

11:12 AM - 12/23/05
(Ottawa Team Unravels Brain Damage in MS)

It's certainly something to investigate.

I'm lactose intolerant... always have been, to the point where they had to get goat's milk for me when I was a little kid. So... I don't know if that means milk is worse for my myelin or not. I'd think that I took in less calcium than most, being that I've avoided milk all my life.

but... I've also always avoided the sun. Mid-day sun is where you can get Vitamin D from.

but... I've always indulged, more so than most, in foods rich in Vitamin D... (Maybe that's why I always CRAVE sushi though... my body wants the Vitamin D)

too much calcium... I'm very prone to cysts....

I'm...

TOO MUCH CALCIUM MAN!!!!

I don't know. I supose that it's as likely as anything else.

My question is, even if there's something to stop it, how do you UNdo the damage already caused?

---

2:31 PM - 12/23/05
~Jesus was born in March

Got my new Medicare Rx drug coverage info in the mail. I'm so confused. I have no clue what any of it means. I don't know what I'm covered for, or what I'm not covered for. I have no clue if I have a co-pay or not. I can't handle making the phone calls.

I really really want to just stop meds altogether.

I wasn't meant to be alive. Modern medicine... messes up the natural order of things. I was breech. If not for "modern medicine", I'd not have made it. That's the way I see it.

Is this "depression"? I don't know. I'm just tired of it all.

It's Christmas time. Mary, kiss m'ass. People like me, we hate it. It's like being beat with a Norman Rockwell painting. Falalalala lala la la. Rudolf the tasty Reindeer. Pass the salt. Comet! The other white meat! Tis the season to go into debt and fake like you're happy about all of it.

Wonder if Santa got his new Medicare D information. Wonder if Mrs. Claus is covered too. I doubt the elves are.

I remember, one Christmas... "Let it snow" meant something else entirely... and it did snow. That was a fun Christmas... the best ever, actually. I miss my old neighbor. She too, was the best ever.

Here I go, down the end of December drain. It's the final ass kicking of the year.

I have alcohol and head meds. Bring it on, Santa.

---

9:54 PM - 12/23/05
journals

(posted by N.)
i was listening to npr radio today at work during my break. they were playing a reading of someone's journal, about their adventures as santa's elf. that made me think of a previous story i heard on npr, where a man lost like 50 years worth of journaling in the flooding caused by hurricane katrina. he was devistated.

that in turn, made me think about deleting about 3 years worth of blogging i did a few weeks ago. i'm still not sure why i deleted all those blog posts, but it was sort of like a cleansing. sometimes i wish i would have at least printed them all out before i deleted them.

and that, in turn, made me think of you, ...about all the stuff you've printed out, all the posts and things you've written over the years, and how you also lost a bunch of it at some point. i don't remember all of the details.

anyway, just wanted to let you know i thought of you today...

(my reply)
So much was lost... hundreds, if not thousands of pages. Between my flare and the board hacking... it was pretty messed up.

but...

at least I had some control... delusional or not. Hacking aside, I had the chance to choose what meant the most to me, to a point.

I cannot imagine what that man went through... what he is still going through.

I wish I could tell him... it's in there... your head... it's in your head. NO ONE can take that away. I keep telling myself that, anyway. Sometimes, it helps.


I think of you often, N. If I can ever make it to Phoenix(?)... I'll smile.

December 22, 2005

8:17 AM - 12/22/05
~Listen to the madman

Years ago I'd have said that I just slept for about 9 hours. Now, I think I'd best add that I woke up about 6 times in that 9 hours. Still, the sleep was much needed.

Had an odd thought upon waking... about dreams. How is it that in our dreams, there are other peope, even people we know? I mean, it's obviously not them. They're awake, doing something somewhere. We, obviously, "create" them in our heads while we're sleeping. How is that though? I mean, I'm going along in my dream, being my usual self, and then... I can create a whole bunch of other people too? With personalities? and interact with them? How is that possible? Rather complex to hold onto my own personality, let alone create a whole bunch more that aren't me... and that I seem to have no control over. In my dream, when another person says something, I didn't know they were going to say what they said... but yet I created them and am controlling them in my dream? If I am my own brain, what part of me is being them?

I guess it's like when I "hear voices". It's probably the same thing. They probably come from the same place. A place in my brain I cannot control... which controls itself.

Often, when I'm "flaring" the voices are deafeningly loud... and there are many of them... and there's nothing I can do to tune them out. It's like being in a train station.

Voices. Sometimes, when I feel particularly bold, I try to home in... try to listen to what they're saying. Sometimes, what I hear scares me.

So, is it that I scare myself... is it that what's inside of me scares me? or is it that it scares me to think that there's a part of myself, which has a personality, that I cannot control?

Sometimes, in the past, I listened to the voices while trying to fall asleep. Focusing like that, sometimes, would help. Falling asleep is often difficult. The voices are sometimes a low droning sound. It's when one pops out of the hum that I'm back to square one with attempting to sleep... depending on what it says.

Don't get me wrong. I know that the voices are in my head. I can tell that they're not outside of me. That said though, they do get "loud". It's tough to explain, but even though they're in my head, they still hurt my ears... or maybe they're poking at the part of my brain that controls my ears, I don't know. It's like... the ear drum didn't rattle, but the voice, or voices, got there anyway... and yes, sometimes it's deafening... I can't really hear... or focus on anything else... some sort of overload.

Yes, and sometimes the voices keep me up... so I have a drink, or twelve, trying to stop the racket.

Just for the record, Lamictal does not stop the voices.

---

1:59 PM - 12/22/05
~If only

Read about some new, promising research. I started daydreaming. This is where I ended up...

10 things I would like to do if I could get my brain (and the rest of my body) to a "never had MS" condition.

1. Get my shit together
2. Spend more time with my brother
3. Legally change my name (yes, again.)
4. Return to Philly
5. Organize my writing
6. Spend some time drumming again
7. Travel to spend time with those dear to me
8. Get through Med School and become a doctor
9. Take care of my best friend and her son
10. Finish my (30x42) drawing

---

2:04 PM - 12/22/05
The hit count (16) Passed 46K

46,020

---

10:23 PM - 12/22/05
~Badump Bump

Can't get to the sleep point.

Watched a show on Richard Pryor. It was only about a half hour long, on BET. Of course, they said he died from a heart attack. I listened as they spoke of him... related all too much. The more recent pictures of him made me sad. His sadness was evident.

Laughter. It's vital. If you can't laugh, life is hell. I've always managed to get people laughing. It's odd. I'll run across people I knew when I was a kid, and what they remember about me is how funny I was. I don't feel so funny anymore... and I know that most of my blog entries don't come across that way. I suppose that I use this blog to vent... get the angry stuff out... bitch... whine... moan... complain. I still laugh though, in person, with friends... we laugh. Shoot, I've even got strangers in the food store to laugh just by talking loud enough. Richard made me laugh. I think that translates into "Richard helped make life worth living."

MS is brutal. Often, it makes one paranoid. It stops people from laughing and makes them yell instead. It stops people from being able to laugh at the world, and makes people want to kill themselves to get away from it instead.

Chain smoking. I shouldn't smoke. It might give me lung cancer. BWAAAAahahahahahahahaahha !!!!!! HAAAAAaahahahahahaha!!!!

couldn't resist

December 21, 2005

1:30 AM - 12/21/05
~Damn Brain

No rash yet, from what I can see... but I'm, obviously, having trouble sleeping.

Thinking about the whole Temporal Lobe Epilepsy thing... The more I read about it, the more scared I'm getting. I don't know why. There are a lot of symptoms I've had for years... decades... They're not typical MS symptoms, but textbook Epilepsy symptoms. They too were attributed to my "DID". When my head "goes off"... yeah... right.. that may well be a seizure, not personalities "switching". When I flip out when someone starts with the camera... during my Evoked Potentials testing for MS... the fucking flashing ads... the computer graphics that set me off (inside info here, but the "TOP eye" does it, even though I love it)... the ceiling fan problems... flipping out at concerts, and bars... What about those patterns that make me go into convulsions?

I'm petrified thinking that they might do something with lights during my EEG next week.

...and you know what? What the FUCK?! and WHY ME?!?!?!?!?!?!

---

7:38 AM - 12/21/05
~Pain sucks

Going out for lunch today with "RavensWings". I'll appreciate her company, and the ability to get out of the house. If I'm lucky, I'll do ok while out.

Last night was not too fun. Wasn't able to fall asleep until after 5AM. A LOT of pain, and some really fucked up shit with my eyes. Too, my ears were ringing worse than usual, and that really hurt.

I don't see any evidence of a rash yet, so I suppose I'll take the next dose, at 11AM. I don't know that it's making me feel any better, and I don't know if it had anything to do with last night's pain and dose of Insomnia. I suppose that I'll see what happens.

Wish I weren't so damn tired.

---

3:37 PM - 12/21/05
~monotone

I feel numbed out. It's not a very good feeling. I don't know that it's bad either though. At least I'm not in a rage.

I wonder if I could live like this... no excessive ups or downs... just monotone. Feeling things intensely does have a value to me. If nothing else, I think that it makes me who I am, on an artistic level. I've said, in the past, that being a good writer is all about the ability to turn mole hills into mountains. I think that what has made me a good writer, in the past, is that to me, most mole hills are indeed perceived by me as mountains. Whether or not they are, they seem that way to me. It's about intensity... it's about passion. It's about turning water into wine so that people understand what you're getting at. It's about getting people to FEEL right along with you. I can say or write, "I don't like you." or I can say or write, "I want to rip your eyelids off and piss in your face!" Which makes the point? Which makes MY point? I suppose that depends on what I feel at the moment.

"I want to rip your eyelids off and piss in your face!" is a whole hell of a lot more entertaining.

December 20, 2005

6:50 AM - 12/20/05
~Saying no to maybe

Odd dreams. A lot going on in my head, I suppose.

I'm glad that I got some sleep. More than anything, I can safely say, sleep helps. It's not just that it gives my carcass a rest, but it seems that it's calming. After getting sleep, no matter what the dreams, I seem to feel not as angry somehow.

The anger will come back, it always does. Already I can feel it creeping back. I'm sure that it has something to do with being in pain. My whole body just wants to curl up.

I have this new medication that I'm supposed to start. Lamictal. I'm supposed to take it twice a day, building up from 25/25 to 100/100 mg a day. Makes me nervous even thinking about it.

I think that I'm a bit of a control freak. What little clarity I have, I don't want to be forced to get rid of. That's the thing with drugs... all of a sudden, you're taking it to feel ok, even if you would have felt fine to begin with. You start taking it out of fear instead of need, or even want. I suppose that if any drug had ever really worked well, I wouldn't have minded taking it, and I'd still be taking it. That's sort of like my shots... it works well for me. I hate giving myself a shot, but the pain is worth the effect. I'd like to stop taking the Inderal, but my body is addicted to it at this point, I think.

I really have a love/hate relationship with "substances". I'm all for them, but I'm for using them, not having them use me. I want to take a drug because I want to take it, not because I need to take it. A drug should make me feel good. If it doesn't, I don't want to take it. If I stop taking a drug, I shouldn't feel worse than I felt before taking the drug. ...and the whole "it has to build up in your system" thing? That makes me want to slap people. All that means to me is that I'm slowly being addicted to something. There's this poison, and we want to build you up to where you actually need it... we want to bring you to a place where if you don't take it, your own body will hurt you. Makes no fucking sense to me. There's no naturally occurring Lamictal in my body that I happen to be missing, it's not like I have replace it with artificial Lamictal. They try to bait you with a potential prize. I don't do "maybe"s. "Maybe" makes me nuts. Screw "This might..."!

Right. All that said, I'll end up trying it. Truth is, I feel shitty enough to take a chance.

I'll give it a week.

---

10:20 AM - 12/20/05
~Cutter goes to South Park

I'm so amused.

---

4:49 PM - 12/20/05
~for the moment

Having a brief burst of energy/clarity. I think that I'm getting nervous about taking the new medication tonight.

I suppose, if I could just keep myself nervous all the time, I'd be good to go. Maybe "go" right into the grave, but hey, at least I'll have done something productive.

Been able to reply to a couple of blog/journal entries. I feel happy about that. I hate when I can't reply to people's blogs, or e-mails, or posts, or whatever. It's all I've got left to make me feel even slightly human... or, worth a crap.

I hope that I don't get the "deadly skin rash". That would suck. All of this, and I drop dead from a rash. Possible side effects. woohoo.

I'll take it at 11. If I wake up with a rash, I'll not take more of it.


Played the lottery for tonight. I think it's at about 53 million. I promise, if I win, I'll fly everyone into Philly (who's not there already) and take us all out for dinner... and pay for the hotel, and the return trip too. I'd really like to meet you peeples.


Just wanted to say that.


oh, yeah, and I'll be making a GENEROUS donation to Rocky too. ~blog has helped keep me going for a lot longer than I thought I'd make it.

Tomorrow makes it a year since I arrived in MA from MT.

Shoot... was it, technically, the 21st? There was an accident on the way. The train in front of us overturned, and we had to get on a bus. I know that I got in WAY late.

Whatever. Close enough. I made it. I'm here. I'm not there. This is a GOOD thing.

*extends middle finger*

---

7:01 PM - 12/20/05
The hit count (14) Milestone

45,678

---

7:43 PM - 12/20/05
The hit count (15) Re: Milestone

I just like the 45678 thing. The next one will have to be 56789. Then, no more until 123456!

December 19, 2005

5:24 AM - 12/19/05
~SSDD

It's morning, again. I didn't sleep all that much, but that's really nothing new. I'm supposed to go to the food store today though... doing it without much sleep... well, it could prove a little too eventful.

All my words look wrong. I hate this.

I have to figure out some way to get through all of this. Things are moving along, true, but they seem to be stuck in "shitty" as well. I used to have good days. Now, sometimes, I have good hours. What I thought felt like "flaring" is actually just my baseline. That just plain sucks. ...and even suckier, it only keeps getting worse.

I can't keep my eyes open.

---

12:19 PM - 12/19/05
~Great Legs

It was an interesting trip to the grocery store. Among other things, I found out what "drop foot" actually is. VERY fucked up... and pretty embarrassing. Then, and this is actually pretty fascinating, I had the MOST fucked up experience of my life. My legs switched places.

I was on the way out of the store, and then, all of a sudden, I got completely confused. It sort of felt like my legs were twisted around each other. My right leg felt like it was where my left leg was, and vice versa. I stopped until it passed, only a few seconds, but it was REALLY weird.

When I was a little kid, I did the whole "MS Read-a-thon" thing in school. Think I could ask for a refund?

December 18, 2005

6:05 AM - 12/18/05
~name calling

Up and smoking away. Drinking coffee. Further dehydrating myself.

Got a link to an article having something to do with PRMS. It makes me sad. Once, I could have read and understood it. Now, I'm just overwhelmed by all the words in such a small space. I really do want to read the article. Maybe one sentence at a time... but then, I'll forget the sentence I previously read before reading another.

There isn't much info out there, it seems.

When I was in the hospital, back in March, the Neurologist that worked with me while I was there tried to explain something about the different types of MS. I think that what it boiled down to was that, really, you just either have MS or you don't. All the different types are more for figuring out how to treat it. Everyone with MS is, generally, their own sub-type.

It's difficult not to let things sway me. I mean, I've had this disease for forever and a day. More than anyone, I should know how it works with me. It doesn't matter that I was told to call it something else, it's still the same group of symptoms... ok, plus a few new ones, but still... Knowing that it's MS is both a plus and a minus. Yes, now I know what's actually going on. That's a plus in that at least I know that I'm not crazy. Knowing what's actually going on is scary though. That's a minus. Fear is not a good thing. Conquering fear is a battle in and of itself. It's tough not to give into it... not to be swayed by it. I dealt with the "disease" for a long time, no matter what anyone called it. Now that it has a proper name, I, all of a sudden, can't deal?

No... that's not it. It's not "all of a sudden I can't deal". I couldn't deal, even before I got the proper name. I was planning on killing myself... getting closer and closer... I just couldn't take it anymore.

So, does having the "correct" name for it make things easier? I don't know. I really don't. I don't know if there's any strength left in the reserves. I don't know if I can take another year like the last. It's like death... it'll be better, worse, the same, or nothing at all. ...the unknown... I've never been one to fear the unknown. I've been the type to pounce on it.

Right... pounce on it... right after this nap... or the next... or maybe the one after that...

---

4:09 PM - 12/18/05
~end of another

I think that I'm just, sort of, sulking.

I have no clue what I did today, other than watch tv.

...oh yeah, I cleaned my toilet. joy.


I have a headache.

---

7:56 PM - 12/18/05
~Slice! The other white meat!

I should be watching CSI. I like CSI. I'm not though. I'm here... in front of the screen...

I am Cutter.

I cut.

Deal with it.

December 17, 2005

9:41 AM - 12/17/05
~Chemically Yours

Feeling pretty crappy, as usual. Put myself out last night. I guess that I'm still groggy from that, but then, I was groggy yesterday, before putting myself out. I can never tell anymore. I don't know what my actual "baseline" is. I do wonder about it. I wonder how I would feel without any drugs at all, in my system. Everything is a drug, though. Even food and water.... technically, they're just chemicals too... technically, I'm just chemicals too. The whole world is just chemicals.

I wish I could do a "fast". Years ago, I did one. I forget how many days I went... either 3 or 5. Didn't do much for me. It's tempting though. I guess that I don't learn easily. It's like quitting drinking... Every now and again, I stop, just to see if "they" are right. "They" aren't right though. Alcohol has nothing to do with any of my problems, except maybe the financial problems. It's about $20 a week that I spend on alcohol. Though, if I didn't, I'd spend it on other beverages or food, so it's not really a big issue.

Despite the "upper" I'm consuming at the moment (aka - Coffee), my eyes keep closing. Another day of bed and tv. This is getting really old.

---

12:27 PM - 12/17/05
The hit count (12)

44,916

---

2:47 PM - 12/17/05
~back to bed

What little I really wanted to do today, I couldn't manage to do. All I wanted to do was get a shower, take out the trash, and check my mail. All I really managed to do was crawl back into bed. "Don't kill yourself. Don't kill anyone else." used to be enough, when I was having a bad day. Now, just about every day is a bad day... and "Don't kill yourself. Don't kill anyone else." just isn't enough. There's so much I want to do, but even sitting down in front of the computer to write is taxing. Everything is taxing. I can barely hold myself up.

I'm sorry.

---

2:52 PM - 12/17/05
I commented:

Some previous comments were bulk deleted by ~blog, while they were trying to take care of problems on the ~blog site. Please accept my apologies.

---

11:13 PM - 12/17/05
The hit count (13) - passed the 45K mark

45,032

...and hey, that's with a 3 month break! ;)

December 16, 2005

8:14 AM - 12/16/05
~sleepwriting

I'm still very tired. I'm not sure why I got out of bed. Attempting to keep myself on some sort of schedule really doesn't make too much sense. Then, often I do things that don't make too much sense.

I think that I'm happy about yesterday's appointment. Not so much about the MRI results, but about the fact that communicating with Neurodude went well. In so far as doctors go, they can be as uneducated as a 12 year old, or clumsy as hell, but if they treat me with respect, I'll keep them. Same goes for the other way around though, I don't care how many certificates are on your wall, treat me poorly and you're no doctor of mine. All a diploma means to me is that you could afford one.

In so far as the MRI results go, "no new lesions" wasn't news to me. I'd seen the films. What worries me is that there are a lot of new symptoms. That makes me think "spine?" and that worries me a bit. I think that, provided I'm still clear of new (brain) lesions in March, I'll ask him to check my spine in June, if I'm still having the problems I'm having now, or if things get worse. Not like anything can be done about it, I guess, but it's probably a good thing to know.

I'm still mourning my lost comments. I hope that people won't hesitate to comment now. I'm pretty sure that it was a one time thing. It has never happened before. I'd wanted to save a lot of those comments too. grrrrr

---

11:29 AM - 12/16/05
The hit count (11)

44,592

---

4:52 PM - 12/16/05
~Cucumber Jello

I don't know what the hell is wrong with me. I fell asleep for about an hour, and woke up hungry. I managed to take out a pan, then got sidetracked. That was about two hours ago. Now, I'm not hungry. I feel depressed.

My legs keep collapsing. I'm dizzy. Various pains. I really don't give a rat's ass about "no new lesions". All I know is that, every day, I feel worse than the last.

I wish it wasn't all icy out. I wish that I felt capable of walking and seeing out there. I could go for a bottle of scotch. All I have is vodka and beer. I don't want beer, it's too heavy. The vodka tastes like shit, unless you drink it with something else... and I don't want anything else. I just want to do shots until I projectile my intestines like a Sea Cucumber.

I'm sick and tired of laying in bed, watching tv. I'm sick and tired of having my "social life" consist of sitting on my ass in front of a computer screen. Always sick, always tired, and always waiting for something interesting to happen.

Maybe I'll drink some vodka. Maybe it'll spark my appetite. Maybe I can ignore the fact that my body is slowly turning into jello.

December 15, 2005

6:15 AM - 12/15/05
~You Can't Over-Love Your Underwear.

I hope that today goes well.
I hope that I get some information.
...and I HOPE that I can get that song out of my head!!!!!

AAAAaaaaKKKKK!!!!!

---

9:29 AM - 12/15/05
The hit count (10)

44,284

---

11:51 AM - 12/15/05
Just to bitch (5)

FUCKING OUCH!!!!!!!

Left eye/temple... PAIN!!!!!

GOD that HURTS.

Been having problems with it for a few days. Right now, it's SO intense that I'm not breathing right.

Keep typing.

Keep typing.

It'll pass.


FUCK!!!!


that was just wrong.

I hate those. It's rare, but when they come, they're brutal. It's like a bruise... like something ruptured.

I'm glad they're short in duration.

Brutal.

---

1:51 PM - 12/15/05
~Adventures with Neurodude

ok... the short of it is...

No apparent new lesions.
It's now written in ink that I have PRMS - Progressive Relapsing Multiple Sclerosis.
I'm to have an EEG to completely rule out Temporal Lobe Epilepsy as a cause of some of my symptoms.
I'm to start on Lamictal (Lamotrigine), and if it does not help, then try Cymbalta.
I'm to have an MRI about every 3 months.
I'm to have a Solu-Medrol treatment, as/when needed.

I'm really tired. I need to crawl into bed, and hope for sleep. I think that I need to process everything.

---

5:29 PM - 12/15/05
~Deleted comments

ok... all the past comments left by non-~blog users suddenly disappeared. What the fuck?!?!?!?!?!

---

6:16 PM - 12/15/05
commented in "Deleted comments"

(6:16 pm)
Almost all of my comments were from non-members. Some members just weren't logged in at the time they commented.... all gone. I'm really pissed off at ~blog right now, and whoever was responsible for this having to be done.
(6:32 pm)
I'll get over it, but it really sucks. It does feel creepy. I just hope that the people who read my blog won't stop commenting, for fear of their words being deleted all of a sudden.
(6:46 pm)
I think that it had something to do with nxxxxxxxxx's blog. Someone flooded it with hundreds of comments.

December 14, 2005

7:36 AM - 12/14/05
~200mg I am

It'll probably be another day of bed for me, at least until I get to the point where I can manage my shot.

Drug dependent. Product of my society. It's no wonder I'm so anti-societal.

---

2:27 PM - 12/14/05
~it is accomplished

Well, it took me 3 hours, but it's done. I can officially print, copy, and scan things.

I've got some serious catching up to do... over a year's worth.

I think that the next thing I should invest in is a few ink cartridges.

---

8:28 PM - 12/14/05
~rank

Just figured out, last night, that what brings your ranking on the "Hot Blogs" list up, are comments. That's why people play "comment tag", so to speak. I never knew that. I'm just impressed that I own the market on "There was a Root Beer can next to my bed.", on Google. Competition! The other white meat! Stupid shit. Wish people put as much energy into the content of their blogs as they do into getting their ranking up.

Wish I weren't so stressed about tomorrow. If I weren't, I'd probably laugh harder at the Root Beer thing.

I still have a little wine. I think that I'll finish the jug and try to pass out. Tomorrow will be a long day.

December 13, 2005

5:22 AM - 12/13/05
comment/reply from "oops"

awsum story, man you've inspired me

Tough to reply to you. If you're being sarcastic: Maybe read the rest of my blog. Judging by your blog, you might actually get something out of mine. If you're being honest: thanks for taking the time to read my blog.

---

5:39 AM - 12/13/05
~yummy

Something tells me that I won't manage to hook up the printer today. If I'm lucky, I'll manage to eat. There's a headache brewing, but I don't know if it's from last night's Bloody Mary fest or what.

Had an interesting comment on last night's blog entry. I think that part of it was actually pretty comical... something akin to "feeding off of myself". The way I see it, it's much better for a Vampire to do that than to feed off of everyone else. (Sorry, couldn't resist.)

Ahhhh... I feed off myself. Yes, indeed. I sort of have to though. Having a disease like MS can do that to a person. The only safe place that doesn't completely drain me is my own head... and many days, even being safely tucked away in there makes me want to give up.

The part where my writing was compared to vomit... well, all I can gather from that is that the person was a little jealous. Either that, or maybe they ate something rancid for supper. There aren't many things I can still do, but writing is one of them... and I write rather well, or so I'm usually told.

I suppose that I could have just deleted the comment, but then, what would I have had to feed off of for an entry? Myself? Yeesh. That would be horrible.

---

9:04 AM - 12/13/05
The hit count (9)

43,796

---

8:03 PM - 12/13/05
(What's up with me)

Just been in bed all day. Really tired, and not feeling well.

---

8:14 PM - 12/13/05
~Never fine

Was dragging, more so than usual today. Pesky headache. Tomorrow is shot day, so I'm sure that has something to do with it.

Managed to pick the printer up off of the floor. I guess that's something, right?

Not.


Thinking a lot on my diagnosis... still not ok with it. I really think that SPMS is wrong. It's either Primary, or Progressive Relapsing. It's just that there weren't good times in the past. It started, and then got progressively worse, from the start. Sometimes things wouldn't be as intensely bad, but then they'd get worse... more along the lines of the Progressive courses of MS. The more I think about it, and the more I talk with people who have known me for a while, the more I realize that there was never a "good" period. There was bad, and worse, and DANGEROUS. As close I could get to "good" was "delusional".

I'm going to have to really push him, on Thursday, to come to a more solid conclusion. "You don't have RRMS. It's probably a more progressive course." just isn't enough for me. He agreed, "Maybe SPMS", and I was ok with that, because at least he stopped trying to convince me it was RRMS... but at this point, I think that he should be able to give me something a little more concrete. I've seen those line charts at the NMSS website. I know where I don't fit.

I guess that it's about wanting validation... maybe. I don't know. Maybe I'm just tired of people who think that they know me better than I do, and who seem to just want to prove themselves right. Anything but listen to me. Anything but give me the benefit of the doubt.

December 12, 2005

6:54 AM - 12/12/05
~Winning Lottery Ticket

Fuck me if this is all the luck I get.

$3

woohoo

4:49 PM - 12/12/05
~drooping

I'm completely drained. Not that it was a bad day, but I'm not the "penguin behind a sushi bar" I used to be.

For a holiday gift, my best friend got me a printer/scanner/copier. (MUCH thanks to her!) It's currently behaving well... sitting on my floor.

It was just a lot for one day... showering, going to Staples to look at desks, the food store, laundry... I know, doesn't sound like much, but these days?... just going to the bathroom takes effort for me.

I'm hoping to get the printer hooked up tomorrow. I think that I'll just put it on one of the folding chairs I have. Until I get a desk, that's about the best I can do. I really need the desk. The table I'm using is drooping in the middle. I saw one that I liked today, but the thought of assembling it sent me into a panic. I can't even do my damn laundry... shit, I'm lucky if I can spell "laundry" half the time. I'll think on it some more... and do some more looking around. One thing at a time, I suppose.

It's just a really awkward thought process... Even more so than my bed, my desk is the place I spend the most time. I want to get something I like. I don't want to get something cheap, just because it's cheap. I want a nice desk, not one that I'll have to, or want to, replace any time soon ...but good desks are heavy, and I'm not known for my ability to stay in one place very long. Cheap is usually lighter. ok... stupid thought process... if I have to move from here, I won't be the one carrying anything.... but that's not the point... It's about being a "burden". If I have to move from here, moving ME will take someone some work, let alone all my stuff.

I don't know what I'm talking about. It made sense this morning.

Gee, do I ever feel like shit. I think that I hear the television calling.

---

10:44 PM - 12/12/05
~oops

10:44PM - ILiveInMassiveJewZits Time

ok, this is the beginning of the story....

It's almost 11PM. I'm on my fifth(?) Bloody Mary. I had to fix 3 typos in that last bit of text.

I know that I have to hook up the printer tomorrow. I WANT to hook up the printer tomorrow.

I can do this...


I played Snood.


It's time for The Daily Show.

My feet hurt. It feels like I'm walking on broken glass.

I liked that song... Annie Lennox...


ouch


11:01PM

A FUCKING RERUN?!?!?!?!?!?!?!?!

WHAT THE FUCK?!?!!?!!


ok, how 'bout this... instead of giving Colbert his own show, how about giving him all the days you're scheduled off?

He's funny... but he's not THAT funny...

Nevermind this play by play. If I roll out of bed... good. If I hook up the printer. woohoo. If I just sleep off the Bloody Marys.... well....

I guess being disabled has its fucking perks.

FTW

I swear I'll continue this story tomorrow...

I HOPE I'll continue this story tomorrow.


It'll probably suck.

December 11, 2005

12:00 PM - 12/11/05
~huh?

I blacked out most of whatever happened after I posted the Richard Pryor entry.

All I know is that I called my mother, and it was not good. I remember yelling. Her trying to get my address out of me, so that she could show up with one of her church friends... all but demanding the name of my doctor, so that she could talk with him. I think that she referred to me as "her little girl". I vaguely remember hanging up on her... something to do with God and cursing.

I obviously was listening to Fleetwood Mac, there's a CD out of the case, and I obviously took a Seroquel, it was written down.

I got deleted from a message board. No clue what happened there, because I don't have access to it anymore.

Apparently I called my ex, because she left a message on my voicemail.

There was a Root Beer can next to my bed. I vaguely remember drinking that, but I'm pretty sure that was this morning.

Yes... this is the life I'm supposed to hang onto... that I'm supposed to fight for... that I'm supposed to want to live.

Right.

---

1:03 PM - 12/11/05
~Rack 'em

It's best for me to avoid human contact, especially conversation. That's one of the reasons I had to start this blog. It's not about needing to control everything, it's about knowing that problems erupt wherever I go. It's about knowing that, often, I can't be nice. My honesty can be brutal.

Looking at my phone, I did try to reach out to other people before I called my mother, last night. I knew that I wasn't doing well. I just needed the ear of someone, I guess. This stupid disease killed Richard, but it'll be listed as a "heart attack". It's the same with the whole drug thing. People want to blame the drugs. They don't stop to think about the reason why he was using cocaine in the first place. He was using it because he was "bad", of course... not because it made him feel as close to human as he could possibly get.

MS. The ups are UP and the downs are DOWN. Drink when it's going too fast. Snort when it's going too slow. Even it out. ...anything!!! just MAKE IT STOP!!!!!!

Maybe what I wanted was for my mother to have some sort of epiphany... that maybe it's not my fault. All I got were threats, thinly disguised as caring. I know the tone... I know when she's plotting. Yes, I suffer from paranoia, but I know my mother... when it comes to things like this, I know her. It's that tone, right before she hits you... the tone that screams "duck!".

December. Fun stuff.

Wish I had an eight ball.

---

9:18 PM - 12/11/05
~Even Now

Can't sleep. Keep pushing myself to stay away from the phone. Even now, after all of what went down last night, I want to call her and apologize... to keep hoping... maybe if I say the right thing, she'll come around... she'll wake up... she'll decide to put me first... before her church, before her guilty conscience, before anyone or anything...

I'm sure that she's scared of me. Many people, who don't know me, are. There's really nothing to be afraid of though. I'll sooner hurt myself than anyone else... unless I'm protecting myself, of course... but even then, I'm the type to double check myself before doing anything.

I think that what I want... maybe what I've always wanted, is someone who will put me first. Someone who will always answer the phone, and always have time to talk with me... someone whose life or lifestyle won't trump me... no matter what I do, no matter what I say. Someone who would defend me to the death. Someone who'd never take anyone else's word over mine. Someone who believed in me... believes me. Someone who doesn't expect sex. Someone who doesn't even expect my time, but who always appreciates it. Someone I could never let down. Someone I could never scare.

Right.

I'm allergic dogs.

December 10, 2005

10:14 AM - 12/10/05
~Deserted

In the past, I've been called a "raw nerve". My response to that? "That's MR. Raw Nerve, to you!"

I'm an intense person. I love hard. I hate hard. I laugh hard. I take offense hard. I express myself, sometimes not at all, and sometimes to the point of picking up a bullhorn. That's who I am.

I could explain the psychological shit that's behind making me like that, but that's not going to mean much. It won't change who am... and for that, I'm glad.

I started this blog because more and more, in my life, I was being pushed into rage by others... online and off. I started it so that I could just be myself... not have to debate... not have to defend myself... not have to spend all that energy stopping myself from smacking the shit out of people.

People are liars, as a general rule. Life is a game. Mean one thing, say another. Feel one thing, say another. Be nice when you're angry. Show anger over trivial bullshit instead. I never liked the game. I'm not too good at it either... the acting part.

I guess that it can be said that I just "don't know how to behave". True enough... but not entirely. It's not that I don't know how to "behave", I just don't like what it entails. What it entails is being fake. What it entails is being a liar.

Rules. Manners. Politeness. Pretense.

Fuck you. I don't serve you. I don't like your social bullshit. I don't like having to play by the rules. I'll follow "The Law". I follow "the law" because it serves me to do so. I don't like being locked up with people who hurt me. If I break the law, I might get locked up with people who will hurt me. So, I don't take the risk. I follow the law... the law of my town, the law of my State, and the law of my Country. The "laws of God" and Society? Fuck that shit. "The laws of God" are something created by Society, and Society has not been all too kind to me. I owe Society nothing.

I'M God. I make the rules. I'll serve whomever I want to serve. I'll dress however I want to dress. I'll express whatever opinions or emotions I want to. I DON'T CARE THAT I SCARE YOU. I wouldn't scare you, if you had balls enough to look in the mirror.

...that place you don't dare look.... go there... you'll see me staring back at you.

Remember that?

I'm who you want to be. I'm what you want to be.

I scare you.

YOU scare you.


...and when I look in the mirror, and see your face... I hate myself.

---

2:27 PM - 12/10/05
~Nothing better to do

Spent the last bunch of hours dealing with the Valium fallout. Depression. I hate that.

Now, I'm going to go do what I do best... have a drink and hide in the sacred land of television.

Fuck MS. The way I'm going to go is simply by being BORED TO DEATH.

---

4:03 PM - 12/10/05
~Richard Pryor

So long, Richard.

I'll toast you for as long as I can drink a drink, smoke a smoke, or laugh my ass off... and even after that.

Shoot, I'll think of you every time I light a match. ;)

You'll always be a "hero" to someone... as long as I exist.

---

4:24 PM - 12/10/05
The hit count (8)

43,118

December 9, 2005

6:12 AM - 12/9/05
~MRI number four

Time to get ready to go.

It's snowing.

I'm tired.

I'll think about y'all in the tube... in Valiumville. Have to think good thoughts. There's something about being in there that can get a person a little down.

---

5:46 PM - 12/9/05
~not sure

Looks a little better, but I won't know too much until I see Neurodude on the 15th.

July MRI Today's MRI

I think that I need to hide in bed for a while.

Chairy says hi.

December 8, 2005

12:06 PM - 12/8/05
I replied to a comment in "temper temper"

They tried me on Depakote. I stopped taking it because I couldn't stop grinding my teeth. Tegretol was too harsh on the stomach, and made my vision too dark. Neurontin makes me nauseous. None of it does any good. :\

---

12:57 PM - 12/8/05
~spare change

I want a beer.

I did drink myself to sleep last night though, so I'm feeling something along the lines of guilt about having a beer this early in the day. Still subconsciously blaming drugs and alcohol. Deep scars. Deep programming.

I'm tired, as usual. Thinking about tomorrow... the MRI, the fact that it's supposed to snow. It'll be my fourth MRI in a few days over a year.

I really don't know what I want to see on this MRI. There's a part of me, deep down inside, that wants to see that it's worse... to have visible proof of the progression. Not just because I need to feel validated, but because I'm so damn tired of this life thing. ...like a message that says "Don't worry. It'll be over soon. Almost there."

So many people are so full of advice... but no one can tell me that things will be ok. No one is in the position to make them ok. The only two people on this planet who can make things ok aren't interested. They're too busy making things ok for themselves... and pointing fingers at me. It's all my fault. I did this to myself. I scare them.

The best is my mother claiming that she "tried to help me" but I wouldn't accept her help. What a crock.

This is the deal, folks. When you're giving someone something, you don't get to tell them how to use it. When you offer help, you don't get to choose what someone needs. If you want to help someone, if you want to give something to someone, just give them the benefit of the doubt... give them a little credit. Maybe they know better what's best for them than you do.

It's like not giving your spare change to homeless people because they might buy drugs with it. Who the fuck are you to tell anyone what is right or wrong for them? You either help someone out, or you don't. So what if the person buys drugs with it? How is that hurting you? Who are you to decide what is harmful to another person? Who are you to tell someone that they're not allowed to harm themselves if that is what they want?

Yeah, my mother tried to help... right. What my mother did was try to save face and try to use me to help herself. After that, I stopped speaking to her again. I think that was in 2002.

When I called her, after getting the diagnosis, and she said, "What do you want me to do about it?", I snapped. Not because I thought there was any way she could jump in a car and come rescue me, or because I thought she had money to send me. I snapped because all I wanted was to hear, and to feel, "Don't worry. Everything will be ok. I'm here for you." All I wanted was a hug from my mommy.

---

4:52 PM - 12/8/05
The hit count (7)

42,735

Some really complimentary comments lately. Makes me feel good.

December 7, 2005

9:21 AM - 12/7/05
~the number you have reached

I actually got in a couple good hours of sleep, just now. Phone woke me up though. MRI people calling me with the usual "pre-registration" questions. I want to go back to sleep. Sleep good. Awake bad.

Think I can damage enough brain to regress to caveman? Maybe to fish? Slime mold?

---

7:05 PM - 12/7/05
~Park Sutton

So, today is "Fire Day".

Doesn't matter what else happened on this day in History, to me and Bunny, it will always be Fire Day.

On December 7, 1977, the apartment complex Bunny and I lived in was burned down. I got out. Bunny didn't. Bunny got stuck there, until he was picked up out of the mess. There was a lot of ice because it was winter. There was a lot of other people's things in our apartment that had washed in with the water. That's what I was told.

Bunny had to be put into the washing machine. We were at my step-father's parents house where, thankfully, they had one. So, Bunny went into the device. He looked pretty scared, but he made it through.

Then, it turned out that Bunny couldn't dry. Bunny had cotton inside. I was very sad.

...but, my step-father's mother, little did I know, had a license to perform Stuffisurgery. I found out because I walked in on it.

Bunny was pinned, by his ears, to a long rope, gutted.

I cried and I cried and I cried.

I waited in the Stuffihospital lounge, trying to distract myself with the tv. My sister was there too. Her Teddy went through the fire. She was crying too.

After a while, I watched while Bunny got his new organs and got stitched up. He needed a tail transplant, but it went ok.

Bunny never completely got over the horror of it all. We talk about it sometimes. He has flashbacks when he gets a bath.

We're still truckin' on though, me and Bunny. We may both be miserable fucks, but hey... at least we're cute.

---

9:53 PM - 12/7/05
~Leaking on my head

It was 1994, Everything that could go wrong was going wrong. I'd lost my job, my home, my head was a mess, my relationship had blown up in my face, my body was sliced to ribbons, the room I was staying in was roach infested, and I had Scabies. It couldn't get any worse.

I was 3 breaths away from crying.

I said to myself, "It can't get any worse. It really just can't."

Then, the roof started dripping... on my head.


I laughed so damn hard I nearly pissed myself.



It was 2004. It was ALL bad. ALL wrong. I'd destroyed my friendships, given up my home and just about everything I owned, I was in a relationship with a complete nut case, I was in the middle of Bumfuck Nowhere, I was cold, I was blind in one eye, I was cut - for the first time in forever, it couldn't get any worse.

I was 3 breaths away from killing myself.

Then, the phone rang. It was the doctor. I'd just been diagnosed with MS.

I laughed.

I LAUGHED.

After a while, when I pulled myself together, and read (with one eye) what I could about the disease, it all made sense. All of it. Everything I'd been telling people for years... there it was. It was MS. I said... "hey... at least now you have proof that there actually is something wrong with your brain. No more "you look fine to me" or going to the psych ward, or people not understanding. You have MS. People will get it now."

I just want to say this... for the fucking record. Don't EVER challenge me. Don't EVER doubt that I'm sick. Don't EVEN DARE. I'll "look fine to you" while I'm sucking your guts out through a fucking straw.

---

10:10 PM - 12/7/05
I replied to a comment in "Park Sutton"

I think that we use stuffed animals emotionally... I couldn't cry about the fire, but I could cry over Bunny. Same for my sister. Today, Bunny is a part of me. He looks as grumpy as I usually feel. It's easier to say "Bunny doesn't like her", than I don't like her... or "Bunny tells me to go blow, when I ask him if he would do the dishes", rather than I don't want to do the dishes. Too, stuffed animals never judge you, and they're always there when you need company

---

10:26 PM - 12/7/05
~temper temper

Going to drink myself to sleep

The rage gets SO BAD sometimes. I try so hard... but it's SO BIG. It's without target... it just builds and flys... flies... flys... fucking shit.

Temporal lobe seizures... I kept telling my last Shrinkydink that I thought I was having them... Have to remember to look it up (again?). I think that they have something to do with Werewolves... something on The Discovery Channel... The Learning Channel... one of those.

My temporal lobes are REALLY scarred.

My whole brain is.


I'm so tired.

December 6, 2005

8:32 AM - 12/6/05
~Say Uncle

I need to state this, for the record.

I DO NOT have any children.

I am physiologically unable to have children. I'm fine with that.

When a friend of mine had a baby, back in '98, it brought me a lot of hope... at a time when I REALLY needed something to hang onto. Her baby is VERY special to me. That is as close to having a child as I've ever been, or will ever be. She has a father who loves her VERY much. He was kind enough to allow me in his daughter's life. I respect, and am grateful to him for that opportunity. I'd not dishonor him by suggesting that his child is my own, hence my removing a previous blog entry. I didn't think about the fact that it was being interpreted that way.

Please accept my apologies.

---

11:47 AM - 12/6/05
The hit count (6)

42,308

---

2:11 PM - 12/6/05
comment and replies posted in "Say Uncle"

i'm sorry that i missed getting to read it. It's wonderful that you are able to have kids in your life. Sometimes I think it's better to be an uncle of something because when you get tire dof the kid you can send them home! can't do that when you are the parent. :D

Unfortunately, she's been out of my life for quite a while. I got to talk with her on the phone for the first time in about 2 years, the other day. :)

7:04 PM
(posted in, "Say Uncle" about part of what prompted me to take down the, "My arm before you" entry from 12/3/05.)

I think that this comment did it for me: cutter, at first I was really sad when I read this post , but now you know I am pissed at you. What are you doing to yourself? Geez you have a boogie. Are you your mother? Geez if it wasn't for my beasties I would have ended it, the MS sucks some days that bad. But what the hell would that say to my kids? Stop making excuses as to why you didn't see the kid all these years. What are you going to do now that you've taken the first step? It's none of my business but you put it out there so I'm replying. And she wsn't a bitch cunt from hell unless you're into that kind of thing when you scrwed her so I doubt someday the boogie will be proud you called his mom that assuming your blog is your personal soliloquy for posterity. If I ws boogie and I grew up and wanted to know who my dad was, as sure as hell I'd look for something he wrote.

9:32pm
Well, whomever it was read enough to know that I had problems with my mother, so...

December 5, 2005

9:35 AM - 12/5/05
Scheduling

So, I'm thinking that Monday (the 12th) I could get a printer? I think that if we do that first, before the foodstore, it might work out ok, stamina-wise. Possible?

---

11:18 AM - 12/5/05
~this stinks

Again, four days without a shower. Joy. Well, helps with the laundry anyway. I haven't been able to do the laundry, so if I were actually changing my clothes, I'd be out of clean clothes by now.

At least I made some food today. That hasn't been do-able lately either.

I'm trying not to get too depressed, but with depression, there's little choice involved. When it hits, it hits. I think it's hitting... starting to beat the shit out of me actually. MS beats me up, which depresses me, which makes the MS worse, which feeds the depression, on and on and on... I think that's why I sometimes like being angry... it's a much more active state to be in. If I get pissed off enough, sometimes I can ride the anger around the building, in order to take out my trash. Depression just keeps me in bed, stinking.

"Depression is anger turned inward." I suppose. I wonder what "Rage turned inward" is. Apathy? Maybe. I don't know... and honestly, I just don't care right now.

---

3:05 PM - 12/5/05
More than 3 sentences?

I think this has to be my favorite emoticon of all time.

---

3:07 PM - 12/5/05
HHHHEEELLLLLLPPPPPP!!!!!

I
CAN'T
STOP
LAUGHING




this hurts!



hellllllpppp!!!!!!1

---

4:22 PM - 12/5/05
~Not that funny

Got stuck in a laughing fit, earlier. It's weird... happens with crying sometimes too, albeit rare... just comes on and leaves when it wants. From what I read, it's an MS thing. woohoo

Maybe it's about extremes... the whole "raw nerve" thing. When you're angry, you're ANGRY. When you're sad, you're SAD. When you're laughing, you're LAUGHING. I don't know. Sometimes I can figure this disease out, sometimes I have no clue. The genius or the idiot... more extremes.

I feel sort of tired. I did actually manage to get a shower and take the trash out. Nessie fell in the snow, but other than that, it was uneventful. Maybe the hot shower is what sent me into the laughing fit though. That's when it started. Once it calmed down, I noticed that my head was hot... temperature-wise. That happens when things are flaring. My head literally feels hot to the touch. Pretty freaky.

I guess that I'll know on Friday. I'm about 90% sure that I'm still cooking myself, but seeing the pictures is something I need. I'm prone to paranoia. Better to always check my "instincts".

Pulled a few tarot cards today. Not good. Makes me nervous. Nothing really positive at all. I think I'm better off not reading. If shit's going to happen, it's going to happen. If I know about it first, all it does is add "worry" into the whole thing. My readings have been completely off in the past. Hopefully this one was too.

---

4:31 PM - 12/5/05
The hit count (5)

Latest count is 42,181

The Hot Blogs list has been non-functional all day, but last I checked, I was at #5.

---

(HHHHEEELLLLLLPPPPPP!!!!!)
8:38 PM - 12/5/05

Yeah, now I'm back at really pissed.

Life is fun.