4:39 PM - 2/28/06
~Knowing, is half the battle.
So, another dose down, three more to go. This just feels so twisted. The only reason I'm going through this is so that I can get Neurodude to tell me not to. That's called "cooperating with treatment". Just because I know it doesn't work isn't enough. He has to be the one to say it. Problem is, if he just agrees with me, that means he has to give up some of his power and authority as the "doctor". He has to be the Einstein on record, not me.
Met a woman today, in the Outpatient clinic, who was also diagnosed with MS. Due to a Solu-Medrol allergy, she was doing the IVIG thing. Many of her symptoms matched a lot of mine... Rage included. RRMS was her label, diagnosed in '99. Along with that though, was about a dozen other psych and medical labels attached to her (which IMHO are all just based on the various symptoms of her MS, and medication side effects). She is currently taking 18 different medications.
Being ignorant is forgivable. Exploiting the ignorant is not.
I want to slap the shit out of her doctor.
Her doctor... is the "MS Specialist" Neurodude consults with.
Tuesday, February 28, 2006
Monday, February 27, 2006
February 27, 2006
4:33 PM - 2/27/06
~1,000 mealy grams = 1 gram
So, one gram of Solu-Medrol down, four to go. The nurse had a little trouble getting a vein which didn't run away from the needle, but ultimately she found one. I'm not too sure why my veins do that, but they seem to run away and hide as soon as the needle is through the skin.
I feel pretty off. I'm sort of dizzy, and of course, everything tastes pretty yucky. Too, my blood pressure is really high. I'll probably just stay in bed as much as possible. I passed out for about an hour, but I still feel like if I feel I need to sleep, I should just do it, if I can manage to. There's no telling what the night will bring.
~1,000 mealy grams = 1 gram
So, one gram of Solu-Medrol down, four to go. The nurse had a little trouble getting a vein which didn't run away from the needle, but ultimately she found one. I'm not too sure why my veins do that, but they seem to run away and hide as soon as the needle is through the skin.
I feel pretty off. I'm sort of dizzy, and of course, everything tastes pretty yucky. Too, my blood pressure is really high. I'll probably just stay in bed as much as possible. I passed out for about an hour, but I still feel like if I feel I need to sleep, I should just do it, if I can manage to. There's no telling what the night will bring.
Sunday, February 26, 2006
February 26, 2006
12:07 PM - 2/26/06
~leg room
Actually, I think that I can get used to this layout. I like that it's simple, and seemingly less cluttered.
Sometimes, less is more. I think that when it comes to blogs, that's my own personal preference. Too many graphics and links make me feel overwhelmed, so I tend not to hit blogs that have a lot of that sort of thing going on. I go to blogs to read what the author writes, and sometimes what they write gets lost in everything else that's going on. I suppose that I just set my own blog up to conform to my own preferences.
I think that makes sense.
9:40 PM - 2/26/06
~Tube Squooshing
I have to get up early tomorrow. I'm not too good with that. I think that alarms are evil and wrong and just downright unhealthy. Anyway, I know that they're not healthy for me. Damn things give me a near heart attack. ...and I don't sleep well. ...and if my sleep is interupted by anyone or anything, I get REALLY cranky.
You wouldn't like me when I'm cranky.
...but, I have to. Unfortunately, I don't get to go make the donuts. Instead, I have to go sit in a chair with a tube in my vein which will pump chemicals into my bloodstream. Joy.
As much as I know that I should not be drinking anything that might dehydrate me or screw with my blood pressure, I'm going to have a few beers. One more, after this one here. I have to try to get, at least, a little sleep. Once the crap is in my veins, it won't be anywhere near easy. Wish I could sleep on my back. Maybe that way the IV wouldn't bother me so much. I can't though. I sleep on my front, with my arms pulled up. Just the right position to squoosh the IV thingee.
Well, whatever the case, it's still a bazillion times better than dealing with the hospital. The hospital is even more evil and wrong than alarm clocks are.
~leg room
Actually, I think that I can get used to this layout. I like that it's simple, and seemingly less cluttered.
Sometimes, less is more. I think that when it comes to blogs, that's my own personal preference. Too many graphics and links make me feel overwhelmed, so I tend not to hit blogs that have a lot of that sort of thing going on. I go to blogs to read what the author writes, and sometimes what they write gets lost in everything else that's going on. I suppose that I just set my own blog up to conform to my own preferences.
I think that makes sense.
9:40 PM - 2/26/06
~Tube Squooshing
I have to get up early tomorrow. I'm not too good with that. I think that alarms are evil and wrong and just downright unhealthy. Anyway, I know that they're not healthy for me. Damn things give me a near heart attack. ...and I don't sleep well. ...and if my sleep is interupted by anyone or anything, I get REALLY cranky.
You wouldn't like me when I'm cranky.
...but, I have to. Unfortunately, I don't get to go make the donuts. Instead, I have to go sit in a chair with a tube in my vein which will pump chemicals into my bloodstream. Joy.
As much as I know that I should not be drinking anything that might dehydrate me or screw with my blood pressure, I'm going to have a few beers. One more, after this one here. I have to try to get, at least, a little sleep. Once the crap is in my veins, it won't be anywhere near easy. Wish I could sleep on my back. Maybe that way the IV wouldn't bother me so much. I can't though. I sleep on my front, with my arms pulled up. Just the right position to squoosh the IV thingee.
Well, whatever the case, it's still a bazillion times better than dealing with the hospital. The hospital is even more evil and wrong than alarm clocks are.
Saturday, February 25, 2006
February 25, 2006
9:05 AM - 2/25/06
~ugh
I've had better mornings.
This blog is SO not helping.
10:16 AM - 2/25/06
~I'm just saying "no".
I'm a bit of a conspiracy theorist, and the whole drug industry thing just doesn't sit well with me. We're a drug addicted nation. To me, there's no real difference between legal drugs and illegal ones, except that with the illegal ones you risk getting put in jail.
I've gone through life feeling that if I'm going to put a chemical into my body, it better make me feel good. The whole "you have to keep taking it" thing reeks of "we want to addict you", to me.
If you take a drug for 3 months hoping to feel better, then you suddenly do, how do you know it was the drug that did it, and not time that did it? Now, your body is addicted to the drug. You're guaranteed to have a bad reaction if you stop taking it, and will blindly think that you NEED the drug. While taking the drug, if you suddenly feel bad, they "adjust your dosage"? Great, now you need MORE of the drug.
It hasn't been proven to work? Well, try it anyway, it might work. Huh?
I recently lost coverage for the Inderal they hooked me on. They changed the scrip to Propranolol. I took one and all but blew my toilet up with what it did to me. I stopped taking it. I'm now drug free. The only chemical I put into my system that I have to get from the drugstore is testosterone, and that's a substance that my own body doesn't make, although it should. It's an actual NEED.
In truth? I actually feel a little better. I don't feel so drugged.
Pain? I can handle that. I've been handling this MS thing for decades without medications. Now that they have a name for it, they suddenly want to hook me on drugs? Before, they were trying to hook me on Psych meds, now it's the rest of them.
but...
Next week, I'm supposed to have another course of Solu-Medrol. That's some EVIL stuff.
I'll do it, but this is the last time. After this, it's only "as needed" meds for me. If it doesn't work immediately, it's garbage to me.
I think I'd rather just keep suffering than suffer and let already rich people get richer off of me. The fact that people are happily getting rich off of the anguish of others is part of what I think is truly evil about humanity.
7:55 PM - 2/25/06
~Sorry for the mess
The layout of, and colors on, my blog are driving me bonkers, so I'm working on a few things.
It might just be my eyes acting up, but I don't know. It's been bothering me ever since the whole ~blog re-do.
My apologies
8:58 PM - 2/25/06
~I'm working on it.
I think that I have to walk away from the computer for a bit. It's now almost 10pm. I'm going crosseyed. Your input would be greatly appreciated. (Sorry, can't get it back to the way it was though.)
~ugh
I've had better mornings.
This blog is SO not helping.
10:16 AM - 2/25/06
~I'm just saying "no".
I'm a bit of a conspiracy theorist, and the whole drug industry thing just doesn't sit well with me. We're a drug addicted nation. To me, there's no real difference between legal drugs and illegal ones, except that with the illegal ones you risk getting put in jail.
I've gone through life feeling that if I'm going to put a chemical into my body, it better make me feel good. The whole "you have to keep taking it" thing reeks of "we want to addict you", to me.
If you take a drug for 3 months hoping to feel better, then you suddenly do, how do you know it was the drug that did it, and not time that did it? Now, your body is addicted to the drug. You're guaranteed to have a bad reaction if you stop taking it, and will blindly think that you NEED the drug. While taking the drug, if you suddenly feel bad, they "adjust your dosage"? Great, now you need MORE of the drug.
It hasn't been proven to work? Well, try it anyway, it might work. Huh?
I recently lost coverage for the Inderal they hooked me on. They changed the scrip to Propranolol. I took one and all but blew my toilet up with what it did to me. I stopped taking it. I'm now drug free. The only chemical I put into my system that I have to get from the drugstore is testosterone, and that's a substance that my own body doesn't make, although it should. It's an actual NEED.
In truth? I actually feel a little better. I don't feel so drugged.
Pain? I can handle that. I've been handling this MS thing for decades without medications. Now that they have a name for it, they suddenly want to hook me on drugs? Before, they were trying to hook me on Psych meds, now it's the rest of them.
but...
Next week, I'm supposed to have another course of Solu-Medrol. That's some EVIL stuff.
I'll do it, but this is the last time. After this, it's only "as needed" meds for me. If it doesn't work immediately, it's garbage to me.
I think I'd rather just keep suffering than suffer and let already rich people get richer off of me. The fact that people are happily getting rich off of the anguish of others is part of what I think is truly evil about humanity.
7:55 PM - 2/25/06
~Sorry for the mess
The layout of, and colors on, my blog are driving me bonkers, so I'm working on a few things.
It might just be my eyes acting up, but I don't know. It's been bothering me ever since the whole ~blog re-do.
My apologies
8:58 PM - 2/25/06
~I'm working on it.
I think that I have to walk away from the computer for a bit. It's now almost 10pm. I'm going crosseyed. Your input would be greatly appreciated. (Sorry, can't get it back to the way it was though.)
Friday, February 24, 2006
February 24, 2006
9:07 AM - 2/24/06
~Perky as usual
I love dogs. I, at the moment, DESPISE the cruel asshole who keeps the one across the way from my apartment building. Yes, my instinct is to curse the dog, but I know that it's not the dog's fault. There's a 15 degree wind chill out there, and all the dog wants is IN. I think that anyone with a brain should be able to figure that out. Apparently, across from me, whoever owns the home and keeps the dog, has no brain. Either that, or they have no ears. Whatever the case, if I knew which house it was, I'd even consider calling the cops about the (ongoing) issue, and I DO NOT deal with cops.
I have to get a shower. I'd love a nice hot shower. I'd also love it if there were any hot water, but apparently hot water is not a necessity in the eyes of the Housing Authority, all the time.
It's Food Store day.
Bring it on.
10:20 AM - 2/24/06
losing sight of it
Wish I could find some sort of inspiration to keep writing, other than my own ego. Lately though, I'm having trouble finding that. I've passed apathetic, now I actively dislike people.
Have to regroup... figure out what the hell it is I'm doing here... and what it is I can do.
5:43 PM - 2/24/06
I'm distracted by: the origin of the phrase, "You bet your ass". (Is it jailhouse, or barn yard?)
I'm miffed about: the fact that one of the beers in my newly purchased 30 pack had a hole in it.
I'm feeling good about: the fact that the day went well
I'm worried about: next week
I'm hoping for: winning the, 200 million plus, lottery
6:18 PM - 2/24/06
~You better You bet
If anyone knows where the term, "You bet your ass!" comes from, I'd love to know.
Twisted dude that I am, I'm thinking jail. It could well have something to do with a donkey though.
I've looked online, but I haven't found anything.
~Perky as usual
I love dogs. I, at the moment, DESPISE the cruel asshole who keeps the one across the way from my apartment building. Yes, my instinct is to curse the dog, but I know that it's not the dog's fault. There's a 15 degree wind chill out there, and all the dog wants is IN. I think that anyone with a brain should be able to figure that out. Apparently, across from me, whoever owns the home and keeps the dog, has no brain. Either that, or they have no ears. Whatever the case, if I knew which house it was, I'd even consider calling the cops about the (ongoing) issue, and I DO NOT deal with cops.
I have to get a shower. I'd love a nice hot shower. I'd also love it if there were any hot water, but apparently hot water is not a necessity in the eyes of the Housing Authority, all the time.
It's Food Store day.
Bring it on.
10:20 AM - 2/24/06
losing sight of it
Wish I could find some sort of inspiration to keep writing, other than my own ego. Lately though, I'm having trouble finding that. I've passed apathetic, now I actively dislike people.
Have to regroup... figure out what the hell it is I'm doing here... and what it is I can do.
5:43 PM - 2/24/06
I'm distracted by: the origin of the phrase, "You bet your ass". (Is it jailhouse, or barn yard?)
I'm miffed about: the fact that one of the beers in my newly purchased 30 pack had a hole in it.
I'm feeling good about: the fact that the day went well
I'm worried about: next week
I'm hoping for: winning the, 200 million plus, lottery
6:18 PM - 2/24/06
~You better You bet
If anyone knows where the term, "You bet your ass!" comes from, I'd love to know.
Twisted dude that I am, I'm thinking jail. It could well have something to do with a donkey though.
I've looked online, but I haven't found anything.
Thursday, February 23, 2006
February 23, 2006
7:54 AM - 2/23/06
~Cawfee Tawk
I don't even know why I'm up. Despite the beer I drank and the Ambien I took last night, I didn't get much sleep. I'm racing.. and (duh) drinking coffee? I don't know. Maybe I'm hoping that if I o.d. on "UP!", I'll crash.
I have to, somehow, get ready for next week. If nothing else, I need to start prepping my mouth. I'm thinking that if I attack any existing infection in there, maybe it won't be such a problem once the Solu-Medrol goes to work on kicking the poo out of my immune system. Last time, it hurt really REALLY bad. My teeth felt like razors.
My arm is still black and blue from when the ER idiot blew the vein. I hope that they'll stay away from that one when they put the IVs in. Begging is in order, I suppose. "Can you please just use my forearms?" might work. Who knows. I might get lucky.
~Cawfee Tawk
I don't even know why I'm up. Despite the beer I drank and the Ambien I took last night, I didn't get much sleep. I'm racing.. and (duh) drinking coffee? I don't know. Maybe I'm hoping that if I o.d. on "UP!", I'll crash.
I have to, somehow, get ready for next week. If nothing else, I need to start prepping my mouth. I'm thinking that if I attack any existing infection in there, maybe it won't be such a problem once the Solu-Medrol goes to work on kicking the poo out of my immune system. Last time, it hurt really REALLY bad. My teeth felt like razors.
My arm is still black and blue from when the ER idiot blew the vein. I hope that they'll stay away from that one when they put the IVs in. Begging is in order, I suppose. "Can you please just use my forearms?" might work. Who knows. I might get lucky.
Wednesday, February 22, 2006
February 22, 2006
11:38 AM - 2/22/06
~I won't mention my socks.
Managed my shot yesterday, not much else though. I'd wanted to attempt a load of wash, but I couldn't manage it. Maybe today I'll be able to. It wouldn't be so difficult if I didn't have to manage the load, the soap, and Nessie all the way down the length of the building and back, outside. Shoot, if I had a washer and dryer in here, I'd get the laundry done to the point where I wouldn't have to wear the same pair of jeans for a month at a time. Doesn't really matter though, I guess. I don't really leave the apartment, so it's not like I really wear the jeans all that much.
I bought a pack of t-shirts and a pack of boxers from the (all I can afford) Wal-Mart, last month. That helps out a lot. Gives me an extra week before I have to use the bathroom sink to supplement the washer/dryer trips.
That's all I'm hoping for right now. I'm hoping to be able to shower, get the wash together, score an open machine, get at least one load down there (and back), eat something, and if I'm lucky, not shit myself, fall down, or go blind while doing it. Doesn't sound like much, I know, but this is my life. Doing all that is about as tough for me as a 14 hour work day is for most people.
Bitching about it is just par for the course.
7:38 PM - 2/22/06
~Eurapoopin
It feels like it has been a long day. I managed to get a few things done, which makes me feel good. Had to wait forever, and take too many trips to check, for access to the washing machine, but I managed to get a load done.
I just don't get it. I think that there are about 36 apartments here. There are only 2 washers and 2 dryers? That's just not right. ...not fair, actually.
I did take a shower, and managed to make food. ...even called my brother and got the mail, and took the trash out.
It was a good day, I think.
At the moment, all I want is to drink myself to sleep, but... that's not too easy on the ol' yucky tube.
How disgusting. Right? Whatever. I'm sure that you never take a shit, even voluntarily, but I do. Me and the rest of the living things on the planet.
Shit happens. Deal with it.
~I won't mention my socks.
Managed my shot yesterday, not much else though. I'd wanted to attempt a load of wash, but I couldn't manage it. Maybe today I'll be able to. It wouldn't be so difficult if I didn't have to manage the load, the soap, and Nessie all the way down the length of the building and back, outside. Shoot, if I had a washer and dryer in here, I'd get the laundry done to the point where I wouldn't have to wear the same pair of jeans for a month at a time. Doesn't really matter though, I guess. I don't really leave the apartment, so it's not like I really wear the jeans all that much.
I bought a pack of t-shirts and a pack of boxers from the (all I can afford) Wal-Mart, last month. That helps out a lot. Gives me an extra week before I have to use the bathroom sink to supplement the washer/dryer trips.
That's all I'm hoping for right now. I'm hoping to be able to shower, get the wash together, score an open machine, get at least one load down there (and back), eat something, and if I'm lucky, not shit myself, fall down, or go blind while doing it. Doesn't sound like much, I know, but this is my life. Doing all that is about as tough for me as a 14 hour work day is for most people.
Bitching about it is just par for the course.
7:38 PM - 2/22/06
~Eurapoopin
It feels like it has been a long day. I managed to get a few things done, which makes me feel good. Had to wait forever, and take too many trips to check, for access to the washing machine, but I managed to get a load done.
I just don't get it. I think that there are about 36 apartments here. There are only 2 washers and 2 dryers? That's just not right. ...not fair, actually.
I did take a shower, and managed to make food. ...even called my brother and got the mail, and took the trash out.
It was a good day, I think.
At the moment, all I want is to drink myself to sleep, but... that's not too easy on the ol' yucky tube.
How disgusting. Right? Whatever. I'm sure that you never take a shit, even voluntarily, but I do. Me and the rest of the living things on the planet.
Shit happens. Deal with it.
Tuesday, February 21, 2006
February 21, 2006
11:00 AM - 2/21/06
~Obviously
I'm losing my sense of humor about all of this.
3:26 PM - 2/21/06
~Don't Walk
I really don't want to do this next treatment. I will. I agreed to. It's outpatient. I don't want to though. I'm tired. It's not that I'm tired of fighting it, there really is no fighting it, I'm tired of living with it. Every day it's something else, either new, or worse, or still going on. The stuff has yet to help. The stuff will not stop the progression of this stupid disease. All it does is make me feel even sicker.
Yesterday wasn't too bad. I was feeling off, but as the day went on, I'd started feeling a little better. I really wanted to go for a walk. I've been wanting to, waiting for the weather to get a little nicer. I'd heard that today was supposed to be a few degrees warmer than it has been recently, so I was planning on attempting the walk today. Last night, I just started pacing, carefully, back and forth in my apartment. Not getting any exercise has been really upsetting me, so I try to, at least, pace if I can. So, I did.
My alarm went off right before 8, reminding me that House was coming on. I stopped my pacing, and figured I should go to the bathroom before tying myself to the tv.
Didn't make it.
Spent the next hour cleaning up the mess, and raging... rather loudly, I might add.
It's cold out today. I figure I'll use that as an excuse not to take that walk. It just has a much nicer ring to it than "I don't want to shit myself." does.
~Obviously
I'm losing my sense of humor about all of this.
3:26 PM - 2/21/06
~Don't Walk
I really don't want to do this next treatment. I will. I agreed to. It's outpatient. I don't want to though. I'm tired. It's not that I'm tired of fighting it, there really is no fighting it, I'm tired of living with it. Every day it's something else, either new, or worse, or still going on. The stuff has yet to help. The stuff will not stop the progression of this stupid disease. All it does is make me feel even sicker.
Yesterday wasn't too bad. I was feeling off, but as the day went on, I'd started feeling a little better. I really wanted to go for a walk. I've been wanting to, waiting for the weather to get a little nicer. I'd heard that today was supposed to be a few degrees warmer than it has been recently, so I was planning on attempting the walk today. Last night, I just started pacing, carefully, back and forth in my apartment. Not getting any exercise has been really upsetting me, so I try to, at least, pace if I can. So, I did.
My alarm went off right before 8, reminding me that House was coming on. I stopped my pacing, and figured I should go to the bathroom before tying myself to the tv.
Didn't make it.
Spent the next hour cleaning up the mess, and raging... rather loudly, I might add.
It's cold out today. I figure I'll use that as an excuse not to take that walk. It just has a much nicer ring to it than "I don't want to shit myself." does.
Monday, February 20, 2006
February 20, 2006
7:59 AM - 2/20/06
honestly
I'm bored. I'm sick. I'm restless. I don't feel like entertaining my readers.
2:10 PM - 2/20/06
~Woof means Woof
I guess that I'm just not feeling too well today. I know, I never am, but I'm feeling a little more down today, and more than a little tired. I'm due for my shot tomorrow, so that might explain the tiredness. I don't know. I tried napping, earlier, but there's someone who apparently doesn't understand that when a dog barks, it wants to come in. It went on for hours, just after my next door neighbors stopped hammering whatever it was that so desperately needed to be hammered. Second day in a row for that. Maybe they're putting up shelves or something. All I know is that I don't like the way my bedroom wall moves while they're doing it, and I don't like the noise either.
There's a Law & Order marathon on TNT. Sounds like a perfect hole to crawl into.
8:01 PM - 2/20/06
~Fuck ALL of you
Well, I thought that maybe I'd watch House.
...but then, I figured I'd just shit myself instead.
This is fun. Really! Really!! It is!!! I LOVE shitting myself!!!!
Can someone PLEASE shoot me now!?!!?!?!?!!?!
honestly
I'm bored. I'm sick. I'm restless. I don't feel like entertaining my readers.
2:10 PM - 2/20/06
~Woof means Woof
I guess that I'm just not feeling too well today. I know, I never am, but I'm feeling a little more down today, and more than a little tired. I'm due for my shot tomorrow, so that might explain the tiredness. I don't know. I tried napping, earlier, but there's someone who apparently doesn't understand that when a dog barks, it wants to come in. It went on for hours, just after my next door neighbors stopped hammering whatever it was that so desperately needed to be hammered. Second day in a row for that. Maybe they're putting up shelves or something. All I know is that I don't like the way my bedroom wall moves while they're doing it, and I don't like the noise either.
There's a Law & Order marathon on TNT. Sounds like a perfect hole to crawl into.
8:01 PM - 2/20/06
~Fuck ALL of you
Well, I thought that maybe I'd watch House.
...but then, I figured I'd just shit myself instead.
This is fun. Really! Really!! It is!!! I LOVE shitting myself!!!!
Can someone PLEASE shoot me now!?!!?!?!?!!?!
Sunday, February 19, 2006
February 19, 2006
12:40 PM - 2/19/06
~TFUS
Maybe I shouldn't have watched the movie yesterday. I think that it would fall under the heading of "triggering".
Dealing with Psych issues is something that I don't like doing. When I got the MS diagnosis, I felt liberated. I felt like... "YAY! I'm not crazy!", or maybe more like, "YAY! I can stop telling people I'm crazy!".
Whether they misdiagnosed me, or just didn't completely diagnose me doesn't really matter. It's not like the problems I've had throughout my life suddenly vanished when I got the MS diagnosis.
It's a little confusing now though. It's tough to tell, sometimes, what might be DID or PTSD related, and what might be MS related. It's all BRAIN related.
I don't know... I hate labels. Maybe I just have Terminally Fucked Up Syndrome.
~TFUS
Maybe I shouldn't have watched the movie yesterday. I think that it would fall under the heading of "triggering".
Dealing with Psych issues is something that I don't like doing. When I got the MS diagnosis, I felt liberated. I felt like... "YAY! I'm not crazy!", or maybe more like, "YAY! I can stop telling people I'm crazy!".
Whether they misdiagnosed me, or just didn't completely diagnose me doesn't really matter. It's not like the problems I've had throughout my life suddenly vanished when I got the MS diagnosis.
It's a little confusing now though. It's tough to tell, sometimes, what might be DID or PTSD related, and what might be MS related. It's all BRAIN related.
I don't know... I hate labels. Maybe I just have Terminally Fucked Up Syndrome.
Saturday, February 18, 2006
February 18, 2006
2:28 AM - 2/18/06
~from last year
Just found this, wanted to post it here.
07-30-2005, 09:45 AM
Here's an idea:
DID is caused by trauma. Disease is traumatic. Is it such a jump to think that one can develop "personalities" to deal with the effects of a disease like MS?
7:43 PM - 2/18/06
~call me Psychic
Pretty odd. Sybil was on today. I watched it. I was about 7 when the movie came out. I don't think that I saw it until after my MPD diagnosis though, and that was in '94. If I did, I don't remember it. It's an interesting perspective. DID is as variable as MS. Everyone is, actually, pretty different. If the DID diagnosis was/is accurate, I was never as split up as Sybil. I usually did have a certain amount of co-consciousness. Still do. I still switch, or shift, or whatever, but I don't black out as much, I don't think. I deal with my MS like I dealt with DID. I write things down a lot. I leave clues... reminders. Usually, those "keys" get back things that I "forget". Yes, it does feel like it was someone else doing or saying those things, but I know it was me. I wrote it down. I know my own handwriting, usually. If I don't, I just figure it was me anyway.
Whether "DID" is accurate or not doesn't really matter. I know that I dissociate. I'm ok with that though. It's a useful skill. Shoot, when some idiot all but puts your IV in sideways, it pays to know how to dissociate.
I wish I could go out. I don't feel too bad. Tired, but ok. I wish that there were a Gay bar nearby. I miss my people. Yes, I'm Gay. So what. It just means I really like myself.
American Gigolo is now on... the same channel as Sybil was on. There's a part of me that finds that completely hysterical. The other part is sort of stunned.
Welcome to the 21st century... I guess.
~from last year
Just found this, wanted to post it here.
07-30-2005, 09:45 AM
Here's an idea:
DID is caused by trauma. Disease is traumatic. Is it such a jump to think that one can develop "personalities" to deal with the effects of a disease like MS?
7:43 PM - 2/18/06
~call me Psychic
Pretty odd. Sybil was on today. I watched it. I was about 7 when the movie came out. I don't think that I saw it until after my MPD diagnosis though, and that was in '94. If I did, I don't remember it. It's an interesting perspective. DID is as variable as MS. Everyone is, actually, pretty different. If the DID diagnosis was/is accurate, I was never as split up as Sybil. I usually did have a certain amount of co-consciousness. Still do. I still switch, or shift, or whatever, but I don't black out as much, I don't think. I deal with my MS like I dealt with DID. I write things down a lot. I leave clues... reminders. Usually, those "keys" get back things that I "forget". Yes, it does feel like it was someone else doing or saying those things, but I know it was me. I wrote it down. I know my own handwriting, usually. If I don't, I just figure it was me anyway.
Whether "DID" is accurate or not doesn't really matter. I know that I dissociate. I'm ok with that though. It's a useful skill. Shoot, when some idiot all but puts your IV in sideways, it pays to know how to dissociate.
I wish I could go out. I don't feel too bad. Tired, but ok. I wish that there were a Gay bar nearby. I miss my people. Yes, I'm Gay. So what. It just means I really like myself.
American Gigolo is now on... the same channel as Sybil was on. There's a part of me that finds that completely hysterical. The other part is sort of stunned.
Welcome to the 21st century... I guess.
Friday, February 17, 2006
February 17, 2006
7:17 AM - 2/17/06
~just a thought
The only reason you think I've changed, is because you weren't paying attention. I didn't change. I grew.
7:28 AM - 2/17/06
two plus two equals three?
Talk about a screwed up hit counter. According to ~blog...
10am - 2/11/06 - 9054
9:50am - 2/12/06 - 9363
9am - 2/13/06 - 9650
9am - 2/14/06 - 9940
7am - 2/15/06 - 9758? I don't think that this counter is healthy. 6:50pm - 10030
11:26am - 2/16/06 - 9905 this is pointless 11:30pm - 10226
7:09am - 2/17 - 10040 it has to be on crack
2:04 PM - 2/17/06
~Do Day
Yeah. I was taken to the food store. Ate some lunch too. THANK YOU RavensWings!
I'm tired.
Think I'm going to drink until I'm drunk, then go to sleep.
Don't you wish you were me?
*extends middle finger*
~just a thought
The only reason you think I've changed, is because you weren't paying attention. I didn't change. I grew.
7:28 AM - 2/17/06
two plus two equals three?
Talk about a screwed up hit counter. According to ~blog...
10am - 2/11/06 - 9054
9:50am - 2/12/06 - 9363
9am - 2/13/06 - 9650
9am - 2/14/06 - 9940
7am - 2/15/06 - 9758? I don't think that this counter is healthy. 6:50pm - 10030
11:26am - 2/16/06 - 9905 this is pointless 11:30pm - 10226
7:09am - 2/17 - 10040 it has to be on crack
2:04 PM - 2/17/06
~Do Day
Yeah. I was taken to the food store. Ate some lunch too. THANK YOU RavensWings!
I'm tired.
Think I'm going to drink until I'm drunk, then go to sleep.
Don't you wish you were me?
*extends middle finger*
Thursday, February 16, 2006
February 16, 2006
1:17 AM - 2/16/06
~yeah, so
I'll just skip right to the end of the story.
I left AMA.
Last straw. Done with it. No more.
11:27 AM - 2/16/06
~The Mind of Cutter
Well, on the good side, my arm doesn't still feel like someone was yanking on my vein. Sure as shit looks like somebody was though. grumblegrumblegrumbleincompetentgrumble.
I really do wish that I could type out the whole story. If I felt better, I could do a good job of it, I'm sure. There are a few moments from last night which, I'm sure, I could get a laugh from relaying, but... not today.
Neurodude called this morning. Finally, he said, "no more ER visits.". THANK YOU!!!! Why it took this long for you numnuts to hear me on that, I don't know, but I'm glad that you've finally admitted that Mr. Cutter and non-smoking torture chambers just don't mix.
Under the circumstances, Nessie was very well behaved. I think that's mostly because she knew that Bunny was planning a very Rambo-ish type of attack on the building though. When I got back, Bunny didn't say anything, but I could tell. He just had that look.... you know, the one bunnies get when they've been up to something.
So... not that I didn't already both suggest and ask for this, but the new plan is to do things OUTPATIENT ONLY. To quote one of the true geniuses of this century... Dee Dee Dee! I'll tell you, in hospital land, "NO" does NOT mean "no", it means, "Torture me for a while first, and then you say "no" for me."
I'll be getting my 5 grams of Solu-Medrol from the 27th through the 3rd. "Sometimes it seems to work" is all they have to go on, in my case. So, that's where he's going with it. Keep doing the infusions, keep checking the MRIs, just hope for the best.
Bunny, Harold, and Nessie are fine with that.
~yeah, so
I'll just skip right to the end of the story.
I left AMA.
Last straw. Done with it. No more.
11:27 AM - 2/16/06
~The Mind of Cutter
Well, on the good side, my arm doesn't still feel like someone was yanking on my vein. Sure as shit looks like somebody was though. grumblegrumblegrumbleincompetentgrumble.
I really do wish that I could type out the whole story. If I felt better, I could do a good job of it, I'm sure. There are a few moments from last night which, I'm sure, I could get a laugh from relaying, but... not today.
Neurodude called this morning. Finally, he said, "no more ER visits.". THANK YOU!!!! Why it took this long for you numnuts to hear me on that, I don't know, but I'm glad that you've finally admitted that Mr. Cutter and non-smoking torture chambers just don't mix.
Under the circumstances, Nessie was very well behaved. I think that's mostly because she knew that Bunny was planning a very Rambo-ish type of attack on the building though. When I got back, Bunny didn't say anything, but I could tell. He just had that look.... you know, the one bunnies get when they've been up to something.
So... not that I didn't already both suggest and ask for this, but the new plan is to do things OUTPATIENT ONLY. To quote one of the true geniuses of this century... Dee Dee Dee! I'll tell you, in hospital land, "NO" does NOT mean "no", it means, "Torture me for a while first, and then you say "no" for me."
I'll be getting my 5 grams of Solu-Medrol from the 27th through the 3rd. "Sometimes it seems to work" is all they have to go on, in my case. So, that's where he's going with it. Keep doing the infusions, keep checking the MRIs, just hope for the best.
Bunny, Harold, and Nessie are fine with that.
Wednesday, February 15, 2006
February 15, 2006
6:37 AM - 2/15/06
~Thank You ~blog people!!!!
YAAAAAAY!!!!!!!!
My archives are fixed!!!!!
WOOHOO!!!!!!
12:10 PM - 2/15/06
~Same doody, different day.
Feeling a little nervous. Been waiting on Neurodoody-head for almost 2 days now... waiting on the t-spine results. Part of it is curiosity, the other part is the need to know, so that I can figure out what I'm doing here.
My eye is really bad today. Pain last night. Coordination is seriously poor. The kitchen floor got half of my toasted cheese and tomato sandwich, just now. My bed (where I eat) got some too.
Neurodude seems more focused on new lesions than on lesions that were already there, and are still active. I assume that makes sense on some level, but I have no idea what level that is.
The whole "there's nothing that can be done" and "it's Progressive" thing is just, sort of, settling in. You say, "I'm dying.", because you feel like you're dying. Then, all of a sudden there's that voice in your head that says, "No, Jon. You're really dying. This disease is actively killing you.", and you start to get more than a little nervous.
I don't have any lesions on the brain stem. I think that what that means is that before it kills me, if it continues to progress, and doesn't attack the brain stem, I'll be a fucking vegetable. I don't know that I'm at all interested in that.
I don't know if I'm at all interested in even thinking about that.
4:55 PM - 2/15/06
~WAY over this shyte
Almost 5, and still nothing.
I hate this shit.
I am NOT a very patient person. (As if you couldn't tell. Right?)
I think that this shit has to stop.
No more tests. No more waiting on results. No more wanting opinions.
If I don't go into the ER, fuck all of it. Fuck the MRIs. Fuck the "what should I do?"s. Fuck all of it.
I've got a fucking lesion with Neurodude's name on it.
5:51 PM - 2/15/06
~off I go
ok, it's almost 6.
I'm heading into the hospital. They're going to try and save my sight in my right eye. woohoo.
Check with RavensWings, I suppose. I'll ask her to post updates, if she can.
Have a beer for me.
~Thank You ~blog people!!!!
YAAAAAAY!!!!!!!!
My archives are fixed!!!!!
WOOHOO!!!!!!
12:10 PM - 2/15/06
~Same doody, different day.
Feeling a little nervous. Been waiting on Neurodoody-head for almost 2 days now... waiting on the t-spine results. Part of it is curiosity, the other part is the need to know, so that I can figure out what I'm doing here.
My eye is really bad today. Pain last night. Coordination is seriously poor. The kitchen floor got half of my toasted cheese and tomato sandwich, just now. My bed (where I eat) got some too.
Neurodude seems more focused on new lesions than on lesions that were already there, and are still active. I assume that makes sense on some level, but I have no idea what level that is.
The whole "there's nothing that can be done" and "it's Progressive" thing is just, sort of, settling in. You say, "I'm dying.", because you feel like you're dying. Then, all of a sudden there's that voice in your head that says, "No, Jon. You're really dying. This disease is actively killing you.", and you start to get more than a little nervous.
I don't have any lesions on the brain stem. I think that what that means is that before it kills me, if it continues to progress, and doesn't attack the brain stem, I'll be a fucking vegetable. I don't know that I'm at all interested in that.
I don't know if I'm at all interested in even thinking about that.
4:55 PM - 2/15/06
~WAY over this shyte
Almost 5, and still nothing.
I hate this shit.
I am NOT a very patient person. (As if you couldn't tell. Right?)
I think that this shit has to stop.
No more tests. No more waiting on results. No more wanting opinions.
If I don't go into the ER, fuck all of it. Fuck the MRIs. Fuck the "what should I do?"s. Fuck all of it.
I've got a fucking lesion with Neurodude's name on it.
5:51 PM - 2/15/06
~off I go
ok, it's almost 6.
I'm heading into the hospital. They're going to try and save my sight in my right eye. woohoo.
Check with RavensWings, I suppose. I'll ask her to post updates, if she can.
Have a beer for me.
Tuesday, February 14, 2006
February 14, 2006
8:45 AM - 2/14/06
~Fading Rainbows
I've been sort of messy these last few days. Between the MS symptoms, dealing with doctors, friends and family, appointments, and ~blog... I guess that I just haven't been in the best writing space.
I know that, eventually, things will settle, ~blog-wise. It's just frustrating right now, because it takes a lot of energy just to write. The changes are more than a little overwhelming to me.
Neurodude (finally) called yesterday around 6pm. I had the MRI done around 4pm. Also got to take a look at the Radiologist's report from the other night. Apparently, there are 2 new lesions, and one more that showed up when he did the comparison to the previous MRI. That makes 3 new lesions in the last 2 months. The report also made mention of Optic Neuritis, although the nerve isn't currently lighting up on the MRI. What that comes down to is that my right eye is, most likely, permanently screwed up.
After talking with Neurodude for a bit, we settled on my not going in for a treatment this week. It was his opinion that, given everything, it probably wouldn't do me much good. He said that he'll call, after getting the T-Spine report, and we can think on it more then. In his opinion, the t-spine will, most likely, be clear... that, usually, if the c-spine is clear, so is the t-spine. I'm anything but "usual" though, so I guess we'll see. He also mentioned that there hasn't been any real research on whether or not Copaxone can help with Progressive forms of MS... at which point I delayed my bitch-slapping him with a more polite comment, along the lines of "no thank you.". Over the last couple of years, through FallenSnow and her friends, I've developed a new love for guinea pigs. I'm just not one of them.
There's a Cyndi Lauper concert on VH1 Classic, tonight. That makes me smile. I have disgusting amounts of respect for that woman... and simply put, SHE ROCKS. She makes my ears happy. ...and my ear bone's connected to my brain bone, and my brain bone's connected to my heart bone...
8:55 AM - 2/14/06
Just an idea
Maybe I can keep this blog as a place to bitch about my ~blog. It's so darn public... sometimes I just need a place to blow off some steam about things going on with it.
~Fading Rainbows
I've been sort of messy these last few days. Between the MS symptoms, dealing with doctors, friends and family, appointments, and ~blog... I guess that I just haven't been in the best writing space.
I know that, eventually, things will settle, ~blog-wise. It's just frustrating right now, because it takes a lot of energy just to write. The changes are more than a little overwhelming to me.
Neurodude (finally) called yesterday around 6pm. I had the MRI done around 4pm. Also got to take a look at the Radiologist's report from the other night. Apparently, there are 2 new lesions, and one more that showed up when he did the comparison to the previous MRI. That makes 3 new lesions in the last 2 months. The report also made mention of Optic Neuritis, although the nerve isn't currently lighting up on the MRI. What that comes down to is that my right eye is, most likely, permanently screwed up.
After talking with Neurodude for a bit, we settled on my not going in for a treatment this week. It was his opinion that, given everything, it probably wouldn't do me much good. He said that he'll call, after getting the T-Spine report, and we can think on it more then. In his opinion, the t-spine will, most likely, be clear... that, usually, if the c-spine is clear, so is the t-spine. I'm anything but "usual" though, so I guess we'll see. He also mentioned that there hasn't been any real research on whether or not Copaxone can help with Progressive forms of MS... at which point I delayed my bitch-slapping him with a more polite comment, along the lines of "no thank you.". Over the last couple of years, through FallenSnow and her friends, I've developed a new love for guinea pigs. I'm just not one of them.
There's a Cyndi Lauper concert on VH1 Classic, tonight. That makes me smile. I have disgusting amounts of respect for that woman... and simply put, SHE ROCKS. She makes my ears happy. ...and my ear bone's connected to my brain bone, and my brain bone's connected to my heart bone...
8:55 AM - 2/14/06
Just an idea
Maybe I can keep this blog as a place to bitch about my ~blog. It's so darn public... sometimes I just need a place to blow off some steam about things going on with it.
Monday, February 13, 2006
February 13, 2006
9:23 AM - 2/13/06
~weakly waiting
One of these days, I won't be waiting on Neurodude. Today isn't the day though.
I somehow have to get this infusion thing set up for tomorrow through Saturday. If not, it's too bad. It'll have to wait until the end of the month. Not that I'm jumping up and down, wanting to do it, but if he wants me to do it, then he needs to get me in there somehow. Today is the t-spine MRI. Joy. It'll probably be rough, because I don't think that taking Valium makes any sense at all. Coming down from it will just be too much, if I have to start that treatment tomorrow.
Right now, I'm needing to get in the shower, but I'm scared that if I do, I'll miss Neurodude's call. That's how things seem to work with Neurodude.
Fun stuff.
~weakly waiting
One of these days, I won't be waiting on Neurodude. Today isn't the day though.
I somehow have to get this infusion thing set up for tomorrow through Saturday. If not, it's too bad. It'll have to wait until the end of the month. Not that I'm jumping up and down, wanting to do it, but if he wants me to do it, then he needs to get me in there somehow. Today is the t-spine MRI. Joy. It'll probably be rough, because I don't think that taking Valium makes any sense at all. Coming down from it will just be too much, if I have to start that treatment tomorrow.
Right now, I'm needing to get in the shower, but I'm scared that if I do, I'll miss Neurodude's call. That's how things seem to work with Neurodude.
Fun stuff.
Sunday, February 12, 2006
February 12, 2006
7:01 AM - 2/12/06
~this should be interesting
Can't help but be curious.
Click here?
9:17 AM - 2/12/06
~thanks for nothing
It's snowing. Supposed to snow about a foot or so. I like the snow. A few years ago, I'd be out in it. Now, I can't really risk it. My eyes aren't good enough. My legs aren't good enough. Sucks.
I was trying to read over my blog, earlier. Came to a screeching halt when I got to May of '05 though. The archives are all screwed up, date-wise, from then on. I'm not happy about that at all. Reading my old writing didn't make me too happy either. I used to write a lot better.
Over the past few days, I've been tempted to start a new blog. I'm very unhappy with the changes to ~blog. My list of "complaints" is endless. Slow loading times and Rx blogs aside, I liked ~blog the way it was. Now, it feels like all of ~blog revolves around ~blurt. If I wanted social interaction, I would have stuck to forums and IMs. Not that I mind comments. I like them, actually, but that's not what my blog is about. It completely irritates me that, now, every blog entry's "static link" includes all the comments. It's tempting to turn off the comment option for that reason. You can't even edit your entries from your main page, or even its static link. I could go on, but I won't.
I'm going to start looking for another site.
10:06 AM - 2/12/06
Scarred
I think that I (finally) hit my limit at ~blog. I feel bad about sacrificing the "Cutter" address in order to blog here, but I think that, in time, I'll get over it.
I guess, starting a new blog is better than completely trashing my life, in order to achieve "change".
10:42 AM - 2/12/06
Cutter lives
ohhhh.... I like this. You can back date things! Shoot, I can just transfer my whole ~blog here!
ok, that's it. I'm staying.
12:19 PM - 12:19 PM
Settling in
So, that's what I'm doing... transfering my blog entries. It'll take a while, but that's ok. It'll give me something to do.
My archives are VERY imprtant to me. My blog is like a book. It's best read in full, and in chronological order. I might leave out a few entries here, but the bulk of it, I'm going to transport.
This is good. At the moment, I'm a satisfied blogger again. The way I see it, in my moment of being a pompous ass, it's ~blog's loss. I had a good 60,000 hits over there, and got quite a few people to start accounts with them. I did stick it out long enough, I think. ...paid my dues in full (not to mention actually paying for my account!).
Hopefully, this blog will work out well. It'll take a while to change my blog address on various websites, but eventually, it'll get done. For the moment, this actually feels pretty nice. It feels quiet.
6:14 PM - 2/12/06
~The mother thing
I had the most interesting converation tonight... with my mother.
She said the coolest thing... after much conversation... she said...
"I wasn't thinking."
THANK YOU!!!!!!
That's all I ever wanted to hear.
-------------------------------------
The conversation with my mother was a really good one. Shoot, I even excused myself after the one curse that slipped out. I know, you couldn't tell, but in the past, I'd NEVER curse around my mother, or call her names, etc., etc. I was always shocked by kids who did that. I'd curse like a trucker, but never around, or to, my mother. Even, "That sucks!" was a no-no. So... "Jesus Fucking Shit Christ" *click* didn't go over too well back in 2004, or more recently. I was pissed, legitamitely and understandably, but there was no "thinking" involved. I just reacted. I opened my mouth and that's what came out.
...and that's the whole thing... she wasn't thinking. It REALLY messed me up, but she wasn't thinking.
It wasn't my fault.
6:21 PM - 2/12/06
for now
I'm going to keep this on the back burner... give ~blog a little more time to straighten out its act.
I'm just goofy like that.
~this should be interesting
Can't help but be curious.
Click here?
9:17 AM - 2/12/06
~thanks for nothing
It's snowing. Supposed to snow about a foot or so. I like the snow. A few years ago, I'd be out in it. Now, I can't really risk it. My eyes aren't good enough. My legs aren't good enough. Sucks.
I was trying to read over my blog, earlier. Came to a screeching halt when I got to May of '05 though. The archives are all screwed up, date-wise, from then on. I'm not happy about that at all. Reading my old writing didn't make me too happy either. I used to write a lot better.
Over the past few days, I've been tempted to start a new blog. I'm very unhappy with the changes to ~blog. My list of "complaints" is endless. Slow loading times and Rx blogs aside, I liked ~blog the way it was. Now, it feels like all of ~blog revolves around ~blurt. If I wanted social interaction, I would have stuck to forums and IMs. Not that I mind comments. I like them, actually, but that's not what my blog is about. It completely irritates me that, now, every blog entry's "static link" includes all the comments. It's tempting to turn off the comment option for that reason. You can't even edit your entries from your main page, or even its static link. I could go on, but I won't.
I'm going to start looking for another site.
10:06 AM - 2/12/06
Scarred
I think that I (finally) hit my limit at ~blog. I feel bad about sacrificing the "Cutter" address in order to blog here, but I think that, in time, I'll get over it.
I guess, starting a new blog is better than completely trashing my life, in order to achieve "change".
10:42 AM - 2/12/06
Cutter lives
ohhhh.... I like this. You can back date things! Shoot, I can just transfer my whole ~blog here!
ok, that's it. I'm staying.
12:19 PM - 12:19 PM
Settling in
So, that's what I'm doing... transfering my blog entries. It'll take a while, but that's ok. It'll give me something to do.
My archives are VERY imprtant to me. My blog is like a book. It's best read in full, and in chronological order. I might leave out a few entries here, but the bulk of it, I'm going to transport.
This is good. At the moment, I'm a satisfied blogger again. The way I see it, in my moment of being a pompous ass, it's ~blog's loss. I had a good 60,000 hits over there, and got quite a few people to start accounts with them. I did stick it out long enough, I think. ...paid my dues in full (not to mention actually paying for my account!).
Hopefully, this blog will work out well. It'll take a while to change my blog address on various websites, but eventually, it'll get done. For the moment, this actually feels pretty nice. It feels quiet.
6:14 PM - 2/12/06
~The mother thing
I had the most interesting converation tonight... with my mother.
She said the coolest thing... after much conversation... she said...
"I wasn't thinking."
THANK YOU!!!!!!
That's all I ever wanted to hear.
-------------------------------------
The conversation with my mother was a really good one. Shoot, I even excused myself after the one curse that slipped out. I know, you couldn't tell, but in the past, I'd NEVER curse around my mother, or call her names, etc., etc. I was always shocked by kids who did that. I'd curse like a trucker, but never around, or to, my mother. Even, "That sucks!" was a no-no. So... "Jesus Fucking Shit Christ" *click* didn't go over too well back in 2004, or more recently. I was pissed, legitamitely and understandably, but there was no "thinking" involved. I just reacted. I opened my mouth and that's what came out.
...and that's the whole thing... she wasn't thinking. It REALLY messed me up, but she wasn't thinking.
It wasn't my fault.
6:21 PM - 2/12/06
for now
I'm going to keep this on the back burner... give ~blog a little more time to straighten out its act.
I'm just goofy like that.
Saturday, February 11, 2006
February 11, 2006
10:21 AM - 2/11/06
~deal with it
Before starting this blog, I'd spent disgusting amounts of time on Forums, using IMs, in chat rooms, and attending to e-mail. I started this blog with the mind set of refusing to spend hours explaining myself. I was tired of defending myself... tired of arguing... and tired of listening to people lie.
I fall into the trap every time though... get sucked back into the same old thing... I end up focusing more on "blogging" than "writing".
Blogging is most often social, here. It's about getting hits and piling up ~friends. I don't want to "blog". I just want to write, and have people get something out of what I post, if they want to.
I flatter myself, thinking that I make some sort of a difference in this world by spilling my guts out onto a cyber-page. It's all I've got though. If I didn't think that I was making some sort of difference, on one level or another, I'd use the energy I have doing something a lot more self serving. ...Maybe bathing regularly, or reading books.
I'm not going to defend myself. If you want to know what my deal is, click away and read. This is my blog. I reserve the right to say whatever I want to say, even if it completely pisses everyone off, and the right to completely ignore people if I feel like it.
10:55 PM - 2/11/06
"Who cares what psychiatrists write on walls?"
I gave my (ex)shrink my ~blog address.
Rock on.
~deal with it
Before starting this blog, I'd spent disgusting amounts of time on Forums, using IMs, in chat rooms, and attending to e-mail. I started this blog with the mind set of refusing to spend hours explaining myself. I was tired of defending myself... tired of arguing... and tired of listening to people lie.
I fall into the trap every time though... get sucked back into the same old thing... I end up focusing more on "blogging" than "writing".
Blogging is most often social, here. It's about getting hits and piling up ~friends. I don't want to "blog". I just want to write, and have people get something out of what I post, if they want to.
I flatter myself, thinking that I make some sort of a difference in this world by spilling my guts out onto a cyber-page. It's all I've got though. If I didn't think that I was making some sort of difference, on one level or another, I'd use the energy I have doing something a lot more self serving. ...Maybe bathing regularly, or reading books.
I'm not going to defend myself. If you want to know what my deal is, click away and read. This is my blog. I reserve the right to say whatever I want to say, even if it completely pisses everyone off, and the right to completely ignore people if I feel like it.
10:55 PM - 2/11/06
"Who cares what psychiatrists write on walls?"
I gave my (ex)shrink my ~blog address.
Rock on.
Friday, February 10, 2006
February 10, 2006
2:48 AM - 2/10/06
Just wanted to say
Puked and passed out.
Really miffed that I missed ER.
8:27 AM - 2/10/06
~Must Shop
It's foodstore day. Getting out of the apartment will be nice... provided I don't fall, or walk into something, or start beating up cars.
Truthfully, I feel better since getting the info from Neurodude yesterday evening. It's waiting on the info that makes me nuts. Knowing that I have a couple new lesions makes me feel a little saner. Sometimes, I doubt myself... sort of fall prey to those who would point fingers at me and tell me I'm making shit up. Doesn't usually last too long though. I like this whole MRI thing... keeps me honest with myself, and gives me something to whack people with.
Sure wish I knew what I missed on ER last night. That was some rotten wine. I don't like puking, and I don't like passing out, especially on Thursdays around 10pm.
Maybe I'll get lucky and not miss House tonight.
It could happen!
Just wanted to say
Puked and passed out.
Really miffed that I missed ER.
8:27 AM - 2/10/06
~Must Shop
It's foodstore day. Getting out of the apartment will be nice... provided I don't fall, or walk into something, or start beating up cars.
Truthfully, I feel better since getting the info from Neurodude yesterday evening. It's waiting on the info that makes me nuts. Knowing that I have a couple new lesions makes me feel a little saner. Sometimes, I doubt myself... sort of fall prey to those who would point fingers at me and tell me I'm making shit up. Doesn't usually last too long though. I like this whole MRI thing... keeps me honest with myself, and gives me something to whack people with.
Sure wish I knew what I missed on ER last night. That was some rotten wine. I don't like puking, and I don't like passing out, especially on Thursdays around 10pm.
Maybe I'll get lucky and not miss House tonight.
It could happen!
Thursday, February 9, 2006
February 9, 2006
4:56 PM - 2/9/06
~I am
So... what am I doing?
Waiting on Neurodude to call with the MRI results.
Hoping that my archives are fixed soon so that I can, happily, go back to posting more.
Smoking, and drinking wine that I'm sure has no alcohol content. I'm pretty sure that it evaporated.
and...
getting tired.
5:58 PM - 2/9/06
~He found Spot!
ooooooh! Two new lesions! Rock on!
He'll call me back tonight.
woohoo.
~I am
So... what am I doing?
Waiting on Neurodude to call with the MRI results.
Hoping that my archives are fixed soon so that I can, happily, go back to posting more.
Smoking, and drinking wine that I'm sure has no alcohol content. I'm pretty sure that it evaporated.
and...
getting tired.
5:58 PM - 2/9/06
~He found Spot!
ooooooh! Two new lesions! Rock on!
He'll call me back tonight.
woohoo.
Wednesday, February 8, 2006
February 8, 2006
12:52 PM - 2/8/06
~Freeze!
It's tough to explain where my head's at. (Yes, the MRI showed that it was above my spine, but... ) I'm feeling this urge to do something... something new... something different... something. In the past, when I felt like this, I'd start a blog, start a message board, rearrange a message board, look around for someone to get involved with, follow a delusion, take a trip somewhere. I suppose it's about seeking out "change"... seeking out dissociation tools? ...playing Russian Roulette? I don't really know the Psychology behind it... but I think that it has something to do with being so discontented with the present, that you throw it all away and hope for better. Not the best place to be in. Invariably, it leads to years of picking up pieces, or regret.
I'm doing my best not to run.
2:18 PM - 2/8/06
...and so it begins again.
Maybe it was yesterday's MRI. Maybe it was the Valium I had to take for it. Maybe it's neither.
I feel myself "snapping". More and more, "being nice" is an overwhelming effort.
I'm tempted to let go... go back into my neat and tidy delusional place... follow the ravens and drink their shit with glee... let them lead me right into a deep dark pit.
I'm afraid to go outside. I'm afraid to walk in public. I'm afraid to fall in public.
I'm tired of everything feeling so damn maudlin.
I feel rage. INTENSE rage.
6:04 PM - 2/8/06
have to let this out
(what I really wanted to say to a comment on my ~blog)
ms is a leveler, it forces you to reevaluate EVERYTHING.
so is a MPD/DID diagnosis, like the one I got almost 12 FUCKING YEARS ago.
What you believed about yourself and others. It's not a nice disease, it humbles you in so many ways.
I'm more humble than most I know.
In some respects Cutter, I think you were like me. Smart, intelligent, witty, great with words. You took it for granted. Maybe were a little arrogant about it. Thought it would always be there. Never did a lot with it or lived up to your God givenpotential?
You need to stop projecting. I NEVER took ANYTHING for granted!!!!
...and GOD can SUCK MY DICK, while I'm sucking his!!!!
So where do you go from here, now that the brain is slipping away. You miss the BRAIN, the power it gave you to think clearly. All the patterns in the brain, images, ideas, words that would flow in harmony. My hands could never keep up with the words in my mind.
STOP PROJECTING!!!!! MY brain has been "slipping away" for almost 23 FUCKING YEARS!!!!!!!
Now there are days when I just wish for words tocomplete thoughts. I start and struggle for the word. Where the f did it go!!
UP MY ASS!!!! Want to suck it out?
So Cutter, who the F are you?? Do you know anymore?
ANYMORE?!?!?!!? I KNOW who I am! DO YOU?!?!?!?
You are a guy with MS, who writes pretty good. You lay your emotions on the line, exposing yourself.
You're an IDIOT.
Each day you go through catharsis, a mental diarrhea, writing this blog. Is it helping YOU?
Is it helping YOU?!?!?!
Running away, we both know that isn't the answer. The shit doesn't go away EVER!
But Cutter, mauybe it's time you took your act on the road. There are people who need to hear you. Doctors, MS groups, community agencies who are supposed to help.
They're all failing.
HENCE THIS FUCKING BLOG,YOU FUCKING GENIUS!!!!!
Take your energy, do something with it, before MS takes away that ability.
Just my two cents...you can tell me to go blow but...
GO BLOW, YOU STUPID CUNT!!!!!!
~Freeze!
It's tough to explain where my head's at. (Yes, the MRI showed that it was above my spine, but... ) I'm feeling this urge to do something... something new... something different... something. In the past, when I felt like this, I'd start a blog, start a message board, rearrange a message board, look around for someone to get involved with, follow a delusion, take a trip somewhere. I suppose it's about seeking out "change"... seeking out dissociation tools? ...playing Russian Roulette? I don't really know the Psychology behind it... but I think that it has something to do with being so discontented with the present, that you throw it all away and hope for better. Not the best place to be in. Invariably, it leads to years of picking up pieces, or regret.
I'm doing my best not to run.
2:18 PM - 2/8/06
...and so it begins again.
Maybe it was yesterday's MRI. Maybe it was the Valium I had to take for it. Maybe it's neither.
I feel myself "snapping". More and more, "being nice" is an overwhelming effort.
I'm tempted to let go... go back into my neat and tidy delusional place... follow the ravens and drink their shit with glee... let them lead me right into a deep dark pit.
I'm afraid to go outside. I'm afraid to walk in public. I'm afraid to fall in public.
I'm tired of everything feeling so damn maudlin.
I feel rage. INTENSE rage.
6:04 PM - 2/8/06
have to let this out
(what I really wanted to say to a comment on my ~blog)
ms is a leveler, it forces you to reevaluate EVERYTHING.
so is a MPD/DID diagnosis, like the one I got almost 12 FUCKING YEARS ago.
What you believed about yourself and others. It's not a nice disease, it humbles you in so many ways.
I'm more humble than most I know.
In some respects Cutter, I think you were like me. Smart, intelligent, witty, great with words. You took it for granted. Maybe were a little arrogant about it. Thought it would always be there. Never did a lot with it or lived up to your God givenpotential?
You need to stop projecting. I NEVER took ANYTHING for granted!!!!
...and GOD can SUCK MY DICK, while I'm sucking his!!!!
So where do you go from here, now that the brain is slipping away. You miss the BRAIN, the power it gave you to think clearly. All the patterns in the brain, images, ideas, words that would flow in harmony. My hands could never keep up with the words in my mind.
STOP PROJECTING!!!!! MY brain has been "slipping away" for almost 23 FUCKING YEARS!!!!!!!
Now there are days when I just wish for words tocomplete thoughts. I start and struggle for the word. Where the f did it go!!
UP MY ASS!!!! Want to suck it out?
So Cutter, who the F are you?? Do you know anymore?
ANYMORE?!?!?!!? I KNOW who I am! DO YOU?!?!?!?
You are a guy with MS, who writes pretty good. You lay your emotions on the line, exposing yourself.
You're an IDIOT.
Each day you go through catharsis, a mental diarrhea, writing this blog. Is it helping YOU?
Is it helping YOU?!?!?!
Running away, we both know that isn't the answer. The shit doesn't go away EVER!
But Cutter, mauybe it's time you took your act on the road. There are people who need to hear you. Doctors, MS groups, community agencies who are supposed to help.
They're all failing.
HENCE THIS FUCKING BLOG,YOU FUCKING GENIUS!!!!!
Take your energy, do something with it, before MS takes away that ability.
Just my two cents...you can tell me to go blow but...
GO BLOW, YOU STUPID CUNT!!!!!!
Tuesday, February 7, 2006
February 7, 2006
8:50 AM - 2/7/06
~Choppy
Just got this weird electric zap-like pain in my chest and back, on the left side. That was pretty creepy.
I didn't sleep all that much... maybe 3 hours. Stompy was up bright and early, and so, of course, was Choppy. I figured that out a few weeks ago, I think. Choppy doesn't really live next door. See, I knew that there was something up. No one can possibly do that much chopping in a 24 hour period. I never saw anyone carrying in large bags, and there were no neighbors missing. So... the chopping sounds couldn't have been coming from the woman who lives next door. Then, I realized that Choppy and Stompy seemed to be on the same time schedule, and that Choppy seemed to always be chopping while I was using my bathroom. Eureka! It's the damn plumbing. Choppy lives in the walls.
Apparently, when any of us use the bathroom sink, it makes chopping sounds while the water is going through the pipes. Not the kitchen sinks, not the showers, not the toilets, just the bathroom sinks. There are 6 apartments sharing the plumbing. There are A LOT of chopping concerts.
Well, I guess that it's good to know that my next door neighbor isn't chopping up bodies... but, now I don't know what to call her.
3:43 PM - 2/7/06
~Off to find Spot
Let's see... I'm shaking, have a migraine, and am, very much, not seeing well out of my right eye. My pulse is about 100.
Good time to get ready for the MRI.
Hopefully I'll be back later tonight, or in the morning, depending on how zonked I am from the Valium.
I'll give Tubey your regards.
11:57 PM - 2/7/06
~it went
Well, first and foremost, I must say, that I have no clue how to read spinal images. Not that I didn't stare at them for over an hour, but I really have no clue what's what, and do not have the patience to find out right now.
The brain's contrast images I looked at looked ok to me, aside from something resembling a lesion on one temporal lobe or another. I'm pretty sure it was the left. It didn't seem that big of a deal though.
The images are beyond good. ("Good", as in clear, well definied, not blurry, should be easy to read.) So good, in fact, that I feel like I am indeed looking at a completely alien MRI. I keep seeing little holes, and I have no clue whether or not they belong there.
All in all, what it comes down to, is that I'm going to have to wait for Radiologydude to speak with Neurodude, and then wait for Neurodude to contact me.
If there are no new lesions, and no visible reason why I'm having the problems I'm having, then I'll have to wait until next week for the final vote on the T-Spine. If nothing shows up there, then I have some serious thinking to do. I sure as shit am not going for another Solu-Medrol course, if there aren't any lesions dancing around in there. What I will do, I don't know. Learn to live with the symptoms, and shut my yap, I suppose.
In many ways, all this shit was so much easier when it was just MPD.
~Choppy
Just got this weird electric zap-like pain in my chest and back, on the left side. That was pretty creepy.
I didn't sleep all that much... maybe 3 hours. Stompy was up bright and early, and so, of course, was Choppy. I figured that out a few weeks ago, I think. Choppy doesn't really live next door. See, I knew that there was something up. No one can possibly do that much chopping in a 24 hour period. I never saw anyone carrying in large bags, and there were no neighbors missing. So... the chopping sounds couldn't have been coming from the woman who lives next door. Then, I realized that Choppy and Stompy seemed to be on the same time schedule, and that Choppy seemed to always be chopping while I was using my bathroom. Eureka! It's the damn plumbing. Choppy lives in the walls.
Apparently, when any of us use the bathroom sink, it makes chopping sounds while the water is going through the pipes. Not the kitchen sinks, not the showers, not the toilets, just the bathroom sinks. There are 6 apartments sharing the plumbing. There are A LOT of chopping concerts.
Well, I guess that it's good to know that my next door neighbor isn't chopping up bodies... but, now I don't know what to call her.
3:43 PM - 2/7/06
~Off to find Spot
Let's see... I'm shaking, have a migraine, and am, very much, not seeing well out of my right eye. My pulse is about 100.
Good time to get ready for the MRI.
Hopefully I'll be back later tonight, or in the morning, depending on how zonked I am from the Valium.
I'll give Tubey your regards.
11:57 PM - 2/7/06
~it went
Well, first and foremost, I must say, that I have no clue how to read spinal images. Not that I didn't stare at them for over an hour, but I really have no clue what's what, and do not have the patience to find out right now.
The brain's contrast images I looked at looked ok to me, aside from something resembling a lesion on one temporal lobe or another. I'm pretty sure it was the left. It didn't seem that big of a deal though.
The images are beyond good. ("Good", as in clear, well definied, not blurry, should be easy to read.) So good, in fact, that I feel like I am indeed looking at a completely alien MRI. I keep seeing little holes, and I have no clue whether or not they belong there.
All in all, what it comes down to, is that I'm going to have to wait for Radiologydude to speak with Neurodude, and then wait for Neurodude to contact me.
If there are no new lesions, and no visible reason why I'm having the problems I'm having, then I'll have to wait until next week for the final vote on the T-Spine. If nothing shows up there, then I have some serious thinking to do. I sure as shit am not going for another Solu-Medrol course, if there aren't any lesions dancing around in there. What I will do, I don't know. Learn to live with the symptoms, and shut my yap, I suppose.
In many ways, all this shit was so much easier when it was just MPD.
Monday, February 6, 2006
February 6, 2006
12:05 PM - 2/6/06
~Messy Archives
The fact that all the 2006 archives are so screwed up is really bothering me. I'd pester R or Nk with it, I fear, so I haven't dropped either one of them a ~-mail. I did post something on the community forum, but gave up on that route.
I guess I'm just weird like that. When things are out of order, it makes me completely nuts. I'm purposely posting less too... trying to keep the majority of January on the main page, so that it stays in order.
Maybe it's genetic.
grumblegrumblegrumble
~Messy Archives
The fact that all the 2006 archives are so screwed up is really bothering me. I'd pester R or Nk with it, I fear, so I haven't dropped either one of them a ~-mail. I did post something on the community forum, but gave up on that route.
I guess I'm just weird like that. When things are out of order, it makes me completely nuts. I'm purposely posting less too... trying to keep the majority of January on the main page, so that it stays in order.
Maybe it's genetic.
grumblegrumblegrumble
Sunday, February 5, 2006
February 5, 2006
3:25 PM - 2/5/06
~Crap for brains
It's the second or third day of migraines. They stop for a while, but then come back. Blood Pressure headaches, maybe. Haven't felt too much like sitting at the computer, or writing. There's a few hours before the Super Bowl comes on tv. I'm already tired. With my luck, I'll fall asleep while trying to watch. That would suck. I wait all year for those commercials.
Just heard a plane fly over. Sounded Military. I was in PA, near a couple of bases, around the 9/11 thing. It was spooky. Some of the planes I saw were like things from nightmares. One of them was flying very low, and it was the largest plane I'd ever seen... and I didn't hear a thing. Spooky quiet.
There's some crap in the news about Iran. Sounds way too much like the Iraq crap. That's all it is to me, I suppose. Crap. It's as real to me as ER and CSI. I think that's what a lot of the countries in the Middle East are bothered by... the fact that our lives... American lives, are so much different from theirs. ...and it's not just about them thinking that we all live like Michael Jackson and J-Lo.... it's about the fact that to the majority of us, it may as well be ER or CSI... and the fact that many of us know more about ER, CSI, and Mortal Combat than we do about what's actually going on over there. I guess... it's about the fact that to them, it seems like none of us care about the hell that they're going through... or maybe that they see us as the cause of a lot of the hell they're going through.
So, do I care? I guess. ...but I also care about the fact that Dr. Carter is coming back to Chicago from the Congo, or wherever it was that he went to be with that woman he was in love with, and Abby's pregnant and back with Luca.
Yeah... God bless America. We need it, and nobody else wants to.
~Crap for brains
It's the second or third day of migraines. They stop for a while, but then come back. Blood Pressure headaches, maybe. Haven't felt too much like sitting at the computer, or writing. There's a few hours before the Super Bowl comes on tv. I'm already tired. With my luck, I'll fall asleep while trying to watch. That would suck. I wait all year for those commercials.
Just heard a plane fly over. Sounded Military. I was in PA, near a couple of bases, around the 9/11 thing. It was spooky. Some of the planes I saw were like things from nightmares. One of them was flying very low, and it was the largest plane I'd ever seen... and I didn't hear a thing. Spooky quiet.
There's some crap in the news about Iran. Sounds way too much like the Iraq crap. That's all it is to me, I suppose. Crap. It's as real to me as ER and CSI. I think that's what a lot of the countries in the Middle East are bothered by... the fact that our lives... American lives, are so much different from theirs. ...and it's not just about them thinking that we all live like Michael Jackson and J-Lo.... it's about the fact that to the majority of us, it may as well be ER or CSI... and the fact that many of us know more about ER, CSI, and Mortal Combat than we do about what's actually going on over there. I guess... it's about the fact that to them, it seems like none of us care about the hell that they're going through... or maybe that they see us as the cause of a lot of the hell they're going through.
So, do I care? I guess. ...but I also care about the fact that Dr. Carter is coming back to Chicago from the Congo, or wherever it was that he went to be with that woman he was in love with, and Abby's pregnant and back with Luca.
Yeah... God bless America. We need it, and nobody else wants to.
Saturday, February 4, 2006
February 4, 2006
4:58 PM - 2/4/06
~grumph
I wish that I could manage to pull something out of my brain to write about, but... I'm still feeling stuck on pause. MS symptoms are taking up both my energy and my focus, in large amounts.
I suppose that there are only so many different ways to say "ouch." and, "this sucks." before all you can really do is grunt, in order to express yourself uniquely.
~grumph
I wish that I could manage to pull something out of my brain to write about, but... I'm still feeling stuck on pause. MS symptoms are taking up both my energy and my focus, in large amounts.
I suppose that there are only so many different ways to say "ouch." and, "this sucks." before all you can really do is grunt, in order to express yourself uniquely.
Friday, February 3, 2006
February 3, 2006
6:53 PM - 2/3/06
~Touching the dial
Just got off the phone with the, very nice, lady at the MRI place I'm going to on Tuesday. She said that I can get the films that day, if I want them (and YES I do), and that they can make a disk for me, but they charge for it. Bummer there, but... oh well.
They asked if I could bring my last set of films with me, so that the comparison work could get started quickly. I agreed. I'll pick them up on the 13th, when I go in for the t-spine. The quicker they get done with it, the quicker it gets back to Neurodude. The quicker it gets back to Neurodude, the quicker it'll be decided who gets to bitch-slap whom.
Today wasn't too bad. Got the lab work done, went to the store and to lunch. Completely passed out after RavensWings left though. I need more sleep, but I'm hoping it'll wait until after House. I missed it last week, thanks to the little ER trip that couldn't.
It could be seen as "sad" that my life is so revolved around watching tv, but I don't care. I like watching tv. Yes, I'd rather be doing other things... I'd rather not be sick at all... but, that's not the case.... so, I find my little pleasures where I can. If it's watching 5 hours straight of tv, on Thursday and Friday nights, so be it.
I should go. CSI is on, in about 10 minutes.
9:29 PM - 2/3/06
~good head bad head
I feel like I have a lot to write about, but I keep going on "pause"... sitting here, ripping my beard out... The CSI episode that was on was one I'd seen, at least once, before. So, I guess I got distracted.
I'm sort of over-focused on my MRI films. I pulled them out tonight, in preparation for Tuesday. I looked them over again, and again had a bad reaction. Quite a few of the images are blurred. Too, there are only about 2 pages of images done with contrast. The previous MRI had 5 pages of images with contrast. I knew that it took a shorter amount of time, but I didn't think too hard on it then. Too, I got zapped. While laying there, before the MRI sequences started, it felt like someone had hooked my left hand up to an electrical outlet. I pulled my hand away from the side of the table and said "ouch.", but thought nothing more of it. I let the tech. know, but she gave me some sort of excuse that she pulled out of her ass about "maybe your hands were touching...".
It's just that I really think that the last MRI was no good. I do know what I feel. I do know when I get new symptoms. I was, honestly, shocked when Neurodude told me that there were "no new lesions". Looking over the films again, I'm not too surprised. There are hardly any contrast images there to look at, and the ones that seem to have something on them that's lit up are blurred beyond recognition. Here, you be the judge.
Then, learning that the machine actually died?... ummmm...
Why am I so focused on this?
Because I REFUSE to be called "crazy" anymore. I know the difference between when I get worse, and when it's the same old pain!
Please let this next MRI go better than the last one did. I need to know the difference between when it's in my head, and when it's in my head.
~Touching the dial
Just got off the phone with the, very nice, lady at the MRI place I'm going to on Tuesday. She said that I can get the films that day, if I want them (and YES I do), and that they can make a disk for me, but they charge for it. Bummer there, but... oh well.
They asked if I could bring my last set of films with me, so that the comparison work could get started quickly. I agreed. I'll pick them up on the 13th, when I go in for the t-spine. The quicker they get done with it, the quicker it gets back to Neurodude. The quicker it gets back to Neurodude, the quicker it'll be decided who gets to bitch-slap whom.
Today wasn't too bad. Got the lab work done, went to the store and to lunch. Completely passed out after RavensWings left though. I need more sleep, but I'm hoping it'll wait until after House. I missed it last week, thanks to the little ER trip that couldn't.
It could be seen as "sad" that my life is so revolved around watching tv, but I don't care. I like watching tv. Yes, I'd rather be doing other things... I'd rather not be sick at all... but, that's not the case.... so, I find my little pleasures where I can. If it's watching 5 hours straight of tv, on Thursday and Friday nights, so be it.
I should go. CSI is on, in about 10 minutes.
9:29 PM - 2/3/06
~good head bad head
I feel like I have a lot to write about, but I keep going on "pause"... sitting here, ripping my beard out... The CSI episode that was on was one I'd seen, at least once, before. So, I guess I got distracted.
I'm sort of over-focused on my MRI films. I pulled them out tonight, in preparation for Tuesday. I looked them over again, and again had a bad reaction. Quite a few of the images are blurred. Too, there are only about 2 pages of images done with contrast. The previous MRI had 5 pages of images with contrast. I knew that it took a shorter amount of time, but I didn't think too hard on it then. Too, I got zapped. While laying there, before the MRI sequences started, it felt like someone had hooked my left hand up to an electrical outlet. I pulled my hand away from the side of the table and said "ouch.", but thought nothing more of it. I let the tech. know, but she gave me some sort of excuse that she pulled out of her ass about "maybe your hands were touching...".
It's just that I really think that the last MRI was no good. I do know what I feel. I do know when I get new symptoms. I was, honestly, shocked when Neurodude told me that there were "no new lesions". Looking over the films again, I'm not too surprised. There are hardly any contrast images there to look at, and the ones that seem to have something on them that's lit up are blurred beyond recognition. Here, you be the judge.
Then, learning that the machine actually died?... ummmm...
Why am I so focused on this?
Because I REFUSE to be called "crazy" anymore. I know the difference between when I get worse, and when it's the same old pain!
Please let this next MRI go better than the last one did. I need to know the difference between when it's in my head, and when it's in my head.
Thursday, February 2, 2006
February 2, 2006
6:41 AM - 2/2/06
Morning
6:41 AM
Just letting you know that I'm up, and not dead.
Will try Neurodude at 8:30. Basically, I'm going to tell him that if "we" want to try Solu-Medrol again, he'll have to set me up with Outpatient. If he wants an MRI after the treatment, he should get that set up too. If he wants an MRI before the treatment and can manage to schedule it, fine, but I don't care either way. I don't think that the hospital is a good idea. I really think that the stress will put me under.
8:34 AM
on hold
838 AM
...and he's not in (yet).
The receptionist said that she'll give him the message to call me (stat), when he gets in. His first patient isn't scheduled until 10.
shoot me?
11:37 AM - 2/2/06
~this is getting ridiculous
I called at 8:30am, like they told me to. He wasn't in. They said that they'd leave him a message to call, "stat", as soon as he came in. His first scheduled appointment was at 10:00.
It's almost 11:30 now, and I'm still... waiting on Neurodude.
2:56 PM - 2/2/06
~The Neurodance
So, at 1pm, I finally heard from Neurodude.
The short of it, is that tomorrow I have to go pee in a cup and have some blood sucked out of my arm. On Tuesday, I get to visit with an alien MRI machine to get pictures of my brain and neck taken. After that, maybe another outpatient Solu-Medrol course.
Am I happy about this? I don't know. I think that my brain and my whole spine should be done, not just a brain and c-spine. I'm not thrilled at the thought of more Solu-Medrol, but at least it'll be done outpatient. If it doesn't work, I don't know what I'm going to do. I have to somehow get them to stop pushing the stuff on me, if it's not working. He pretty much dismissed my IVSM/Prednisone request. I don't know if that's a battle that is at all winnable.
I'm tired. I need to try sleep and fluids. My veins go bonkers if I'm dehydrated, and too, I've felt sort of stuffy since the ER trip... no surprise there though. The place is downright dangerous when it comes to germs. With my luck, Neurodude will try blaming my eye problems on some sort of cold because my blood or piss will show some sign of one infection or another, thanks to the ER germ attack. I guess it's all good. It'll stay blind until he gives me the benefit of the doubt. He just seemed a little too focused on whether or not I had any symptoms of infection. You know, that could cause old lesions to be aggravated. Right. My bad. It's just a cold! Silly me!
7:11 PM - 7:11 PM
~using up my cell minutes
Well, apparently the great and powerful Oz (aka the MS Specialist) agreed with me that more of the spine needed to be looked at, aside from my neck. So... the MRI scheduling people called me and informed me that, so sorry, we can't do all 3 in one day... you'll have to come in about a week later to have the third one.
So... brain and c-spine on the 7th, and t-spine on the 13th. I suppose that they're skipping over the L-spine, which is fine by me. At this point, the only thing I want them to do in that area is to kiss my ass.
Am I having fun yet?
7:21 PM - 2/2/06
Evening
7:21 PM
So, they called me and told me that after Neurodude scheduled me for the 2, Rkd called and added on the t-spine. The 13th is the absolute best they could do. If I want all 3 together, it's even worse... something like the 20th.
They're supposed to call me to pre-register. Hopefully I can find out about getting copies then. The woman who called today was from the central booking place, and when she tried to transfer me over to the actual center, they weren't available.
I'm sorry that I couldn't check with you before saying ok to the appointment. :( If it's a problem, I'll try to get it changed. Just let me know.
...and thank you for all of this. I have no clue what I'd do without you.
11:20 PM
Fucking phone went off during the last 3 minutes of ER. Jk was texting me.
That's all it takes though... missed the end. FUCK FUCK FUCK!!!!!!
If you talk to anyone, can you see if they can tell you how it ended? The last I saw was Abby talking about a $10 bet with the (ex) Professor.
I'm REALLY miffed about this.
grrrrrr
Phone just rang. I'm stupid. I took the call.
Morning
6:41 AM
Just letting you know that I'm up, and not dead.
Will try Neurodude at 8:30. Basically, I'm going to tell him that if "we" want to try Solu-Medrol again, he'll have to set me up with Outpatient. If he wants an MRI after the treatment, he should get that set up too. If he wants an MRI before the treatment and can manage to schedule it, fine, but I don't care either way. I don't think that the hospital is a good idea. I really think that the stress will put me under.
8:34 AM
on hold
838 AM
...and he's not in (yet).
The receptionist said that she'll give him the message to call me (stat), when he gets in. His first patient isn't scheduled until 10.
shoot me?
11:37 AM - 2/2/06
~this is getting ridiculous
I called at 8:30am, like they told me to. He wasn't in. They said that they'd leave him a message to call, "stat", as soon as he came in. His first scheduled appointment was at 10:00.
It's almost 11:30 now, and I'm still... waiting on Neurodude.
2:56 PM - 2/2/06
~The Neurodance
So, at 1pm, I finally heard from Neurodude.
The short of it, is that tomorrow I have to go pee in a cup and have some blood sucked out of my arm. On Tuesday, I get to visit with an alien MRI machine to get pictures of my brain and neck taken. After that, maybe another outpatient Solu-Medrol course.
Am I happy about this? I don't know. I think that my brain and my whole spine should be done, not just a brain and c-spine. I'm not thrilled at the thought of more Solu-Medrol, but at least it'll be done outpatient. If it doesn't work, I don't know what I'm going to do. I have to somehow get them to stop pushing the stuff on me, if it's not working. He pretty much dismissed my IVSM/Prednisone request. I don't know if that's a battle that is at all winnable.
I'm tired. I need to try sleep and fluids. My veins go bonkers if I'm dehydrated, and too, I've felt sort of stuffy since the ER trip... no surprise there though. The place is downright dangerous when it comes to germs. With my luck, Neurodude will try blaming my eye problems on some sort of cold because my blood or piss will show some sign of one infection or another, thanks to the ER germ attack. I guess it's all good. It'll stay blind until he gives me the benefit of the doubt. He just seemed a little too focused on whether or not I had any symptoms of infection. You know, that could cause old lesions to be aggravated. Right. My bad. It's just a cold! Silly me!
7:11 PM - 7:11 PM
~using up my cell minutes
Well, apparently the great and powerful Oz (aka the MS Specialist) agreed with me that more of the spine needed to be looked at, aside from my neck. So... the MRI scheduling people called me and informed me that, so sorry, we can't do all 3 in one day... you'll have to come in about a week later to have the third one.
So... brain and c-spine on the 7th, and t-spine on the 13th. I suppose that they're skipping over the L-spine, which is fine by me. At this point, the only thing I want them to do in that area is to kiss my ass.
Am I having fun yet?
7:21 PM - 2/2/06
Evening
7:21 PM
So, they called me and told me that after Neurodude scheduled me for the 2, Rkd called and added on the t-spine. The 13th is the absolute best they could do. If I want all 3 together, it's even worse... something like the 20th.
They're supposed to call me to pre-register. Hopefully I can find out about getting copies then. The woman who called today was from the central booking place, and when she tried to transfer me over to the actual center, they weren't available.
I'm sorry that I couldn't check with you before saying ok to the appointment. :( If it's a problem, I'll try to get it changed. Just let me know.
...and thank you for all of this. I have no clue what I'd do without you.
11:20 PM
Fucking phone went off during the last 3 minutes of ER. Jk was texting me.
That's all it takes though... missed the end. FUCK FUCK FUCK!!!!!!
If you talk to anyone, can you see if they can tell you how it ended? The last I saw was Abby talking about a $10 bet with the (ex) Professor.
I'm REALLY miffed about this.
grrrrrr
Phone just rang. I'm stupid. I took the call.
Wednesday, February 1, 2006
February 1, 2006
8:28 AM - 2/1/06
grrr
People infuriate me. It's not that they always try to, but invariably, they do. I'm not sure if it's the idiocy or the desperation that annoys me more.
I include myself in the above complaint.
12:43 PM - 2/1/06
~Piss on Piss off
I'm really at a loss here. I have no clue what to say to Neurodude, even if I can manage to get in touch with him tomorrow.
The reality is that I'm not doing well at all... that, so far, Solu-Medrol hasn't done me any good... that there's nothing else they can do, aside from trying some pretty severe Chemo and humouring me with MRIs... and that's scaring the piss out of me.
The first treatment, in late November/early December of 2004, consisted of 3 days IV Solu-Medrol, followed by 11 days oral Prednisone. The treatment was done outpatient. The result was that the vision in my right eye returned, albeit with residual damage... could've been the Solu-Medrol, could've been the Prednisone, could've just been time. The "flare" did not stop. I had new and/or worsening of symptoms almost daily.
The second treatment was in the hospital, in March of 2005. My MRI was still lit up with new lesions. After 5 days IV Solu-Medrol, the result was nil. The "flare" did not stop. I had new and/or worsening of symptoms almost daily.
The next MRI, done in the end of July, was still lit up with new lesions. I did another course of Solu-Medrol in October, outpatient, at the request of the docs. The result was, again, nil... but there didn't appear to be any new lesions on the MRI when December rolled around. Then, they only looked at my brain, not my spine, and the images were of a crappy quality, so, who knows. All I know is that I continue d to have new and/or worsening symptoms, almost daily.
...and here we are in February of 2006. I've been diagnosed with "Progressive Relapsing" MS. That's to say, that all it does is get worse... and even when it dies down a bit, it stays bad. There's no real "getting better". There's just a plateau point with this, that, or the other thing, while other things worsen. The eye gets a little better, but then slides back downhill while I stop dripping urine all over myself. Then, the eyes gets a little better... just in time to see that my boxers are piss stained. While all that is going on my legs take turns with whatever pains are bored with themselves. Legs collapse, legs are ok but someone invisible whacks my shin with an invisible lead pipe, lead pipe stops, legs collapse, legs are ok but there are invisible moths landing on my scalp, moths fly away, oops! there goes the eye again, shoot, someone just connected my right hand to an electrical outlet...
...and they want to do ANOTHER course of Solu-Medrol? Why?!? So I can drip pee, have my tongue swell up, and end up back in the wheelchair? What's the point?!?!?!?!
My head hurts.
9:03 PM - 2/1/06
(addendum)
(Added into the "past time" ~blog entry)
2/1/06 note: I'm VERY sorry about the current state of my archives. I'm hoping that ~blog will eventually get things sorted out.
grrr
People infuriate me. It's not that they always try to, but invariably, they do. I'm not sure if it's the idiocy or the desperation that annoys me more.
I include myself in the above complaint.
12:43 PM - 2/1/06
~Piss on Piss off
I'm really at a loss here. I have no clue what to say to Neurodude, even if I can manage to get in touch with him tomorrow.
The reality is that I'm not doing well at all... that, so far, Solu-Medrol hasn't done me any good... that there's nothing else they can do, aside from trying some pretty severe Chemo and humouring me with MRIs... and that's scaring the piss out of me.
The first treatment, in late November/early December of 2004, consisted of 3 days IV Solu-Medrol, followed by 11 days oral Prednisone. The treatment was done outpatient. The result was that the vision in my right eye returned, albeit with residual damage... could've been the Solu-Medrol, could've been the Prednisone, could've just been time. The "flare" did not stop. I had new and/or worsening of symptoms almost daily.
The second treatment was in the hospital, in March of 2005. My MRI was still lit up with new lesions. After 5 days IV Solu-Medrol, the result was nil. The "flare" did not stop. I had new and/or worsening of symptoms almost daily.
The next MRI, done in the end of July, was still lit up with new lesions. I did another course of Solu-Medrol in October, outpatient, at the request of the docs. The result was, again, nil... but there didn't appear to be any new lesions on the MRI when December rolled around. Then, they only looked at my brain, not my spine, and the images were of a crappy quality, so, who knows. All I know is that I continue d to have new and/or worsening symptoms, almost daily.
...and here we are in February of 2006. I've been diagnosed with "Progressive Relapsing" MS. That's to say, that all it does is get worse... and even when it dies down a bit, it stays bad. There's no real "getting better". There's just a plateau point with this, that, or the other thing, while other things worsen. The eye gets a little better, but then slides back downhill while I stop dripping urine all over myself. Then, the eyes gets a little better... just in time to see that my boxers are piss stained. While all that is going on my legs take turns with whatever pains are bored with themselves. Legs collapse, legs are ok but someone invisible whacks my shin with an invisible lead pipe, lead pipe stops, legs collapse, legs are ok but there are invisible moths landing on my scalp, moths fly away, oops! there goes the eye again, shoot, someone just connected my right hand to an electrical outlet...
...and they want to do ANOTHER course of Solu-Medrol? Why?!? So I can drip pee, have my tongue swell up, and end up back in the wheelchair? What's the point?!?!?!?!
My head hurts.
9:03 PM - 2/1/06
(addendum)
(Added into the "past time" ~blog entry)
2/1/06 note: I'm VERY sorry about the current state of my archives. I'm hoping that ~blog will eventually get things sorted out.
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