semi-random thought
Expressing the desire to do a thing is not the same as actually doing that thing. It makes no difference whether that thing is viewed as positive or negative.
I try not to judge people based on their desires.
I try not to judge myself based on my desires.
I am a person too.
I did what?
Sometimes I don't mind blacking out, but right now the fact that I blacked out a huge chunk of yesterday is really bothering me. I remember getting on the phone around 5 or 6pm, and I remember a good bit of the conversation I had, but that's about it. According to my phone, I called one of those help numbers around 10pm. I only vaguely remember doing that. I'm pretty sure all I did was pass out, but the fact that I'm not entirely sure is bugging the shit out of me.
I guess it's one way to kill time.
Maybe I should invest in HBO.
last nerve
What I have to say doesn't even come close to "nice". This, I know... and so I'm not saying much of anything.
Just be aware of the fact that I cannot guarantee that I'll be able to keep my mouth shut for very long.
You should duck now, if you don't want shit all over you.
sad but true
I really want to be in bed, watching tv, but my brain is having trouble getting there. Too much energy, not enough energy.
I can't even pace. My legs hurt... bad.
I want to sleep, but even the thought of that bores the shit out of me.
Fucked up thing...
Fucked up thing...
If I had a million dollars, what would I be doing right now?
*shrugs*
posting on my blog.
This really is my life.
every purpose under heaven
Although I know that my head is off, I have actually been able to sleep a bit, so I'm getting through this patch ok, so far.
I think back to other summer "hyperflares"... 1986 was a bad one. All the intensity of a hyperflare, and all the drama of a (just about to turn) 17 year old. I'd tell the whole story, but I think that the characters would just as well I didn't. Some stories I only tell face to face, or to myself.
The result of the July 1986 "hyperflare" was that I went back to living at the squat. In retrospect, I can be thankful for it. I have some very good memories, despite all the pain and anguish, of my time at the squat.
There are many, many stories... and most of them both start and end with a "hyperflare".
Maybe that's what life is... the period of time between the birth hyperflare, and the death hyperflare.
I was born in September. I've always feared September ...more so than any other month. That changed this year though. I think that from here on out... it's May I should fear. Fear = "prepare myself for". I'm not one to hide from what I fear. I'm one to look at what I fear in the eye, and either conquer it or embrace it, at all costs.
September's coming. I'm ready. I got through May.
stormy
Really loud thunder and lightning storm went through. Around here they're louder than anywhere else I've ever lived. Maybe because of all the trees and water. I don't know. Pretty spooky though. LOTS of lightning.
This is the longest I've ever lived outside of Pennsylvania. Trying to wrap my brain around that fact. It's tough to though. I spend almost all of my time inside. I could still be in PA, for all I can tell really.
Football season will start soon. ...and green will still be my favorite color.
You can take the Cutter out of Philly, but you can't take the Philly out of Cutter.
Cutter is not in the gutter. This is a good thing.
This is a good thing. This is a good thing.
Truth is transient.
I feel you.
I feel raw... open to too much... receiving too much... feeling pulled.
I wonder if most people are as frantic as they feel to me. The energy feels like complete panic from that direction, yet from other directions it feels like despair... then, there is that one area where it feels like one giant smirk.
Is it that something is coming, or is it that something is already here? ...or both? Some seek leaders. Some seek followers. Some seek allies. Some are simply watching the show.
There. In the mirror. Look deeply into those eyes.
Your answers are there.
Got my crip-card.
The day wasn't too bad. Managed to navigate the food store without incident, and enjoyed spending time talking with RavensWings. Got to freak her out with the crack in my skull. Now that my hair is growing in, you can actually see a definite line right above the spot that is most certainly a "hole" in my head. She was freaked with the fact that when you put you finger on the spot, it actually feels like a baby's skull. That was pretty cool. (Sometimes being such a "boy" has its privileges.)
Neurodude called a couple of hours ago. He said that he was going to call in a scrip for Atenolol for me to try. "A" for effort there. I suggested the Neuropsychologist thing to him... mentioned that I'd actually liked the woman who came in for my consult back in March of '05. I swear I could hear him jumping up and down with glee. The fact that I said that I actually liked another doctor? Obviously priceless.
So, when I can, I'll have to call over to the rehab place and find out if she actually sees patients outside of the facility. He didn't even know that I'd had a consult with one. That's an "F", for either communication or reading. ...or maybe to the records department.
The day ended with checking my mail, and receiving my "handicapped parking" placard. Now I can hang it on the mirror when RavensWings takes me to the store, and Nessie won't have to beat up so many cars trying to protect me from being run over. woohoo!
speaking of triggers
Spent some time doing some thinking this morning.
Since day one with Neurodude and pals, I've all but snapped and let "Battle Damage Nessie" make my points for me.
This morning after realizing how much better I feel without meds, it suddenly made sense to me.
They've been relentless with trying to refer me to every other department or specialist, in order to deal with my MS symptoms. The most often one "suggested", aside from the whole "Sleep Study - Sleep Specialist" ridiculousness, has been to a "Neuropsychiatrist".
Neuropsychiatrist. Nessie is twitching as I write this.
Fuck the "Neuro" part, from day one (and that's a LONG time ago) even the word "Psychiatrist" makes me want to bust heads.
I won't go into the reasons why, that will only serve to make me really, really angry. The short of it is that to me, "Psychiatrist" means only ONE thing...
HEAD MEDS.
(Insert Pink Floyd's The Wall soundtrack here.)
So, realizing that, I had an epiphany. How about a "Neuropsychologist"? I had a consult with one when I was in that Neuro-rehab place back in March of 2005. She wasn't so bad.
Whether or not they'll go for it (actually listen to my suggestion) remains to be seen.
Hey! Maybe Neurodude will actually call me back today, and I can ask him to make some calls! It has actually snowed in hell before. Maybe something can be worked out here.
night
I'm really tired, but I'm hoping that will be a good thing in a bit. My first attempt at sleep didn't pan out, obviously, but maybe the next one will.
Never heard from Neurodude, but that's not too surprising. I didn't take the Verapamil dose earlier tonight because I really was getting a bit too scared today. I feel less like I'm going to end up having a stroke or heart attack now, and so I'll go with that as my guide. One more medication down for the count.
Just trying to stay calm... ignore what I can... deal the best I can with the stuff I can't. My ears are ringing painfully, so that's taking a lot of my focus.
Trying not to let myself become overwhelmed, but sometimes I don't have a choice. It just happens.
Best I get back into bed. My eyelids are heavy.
more doody
Waiting on Neurodoody head to call me back. Figured I should call, being that I can't get my heart rate down, and I've been having problems with being short of breath. Not that he'll acknowledge it as having anything to do with my MS, but the medication that he put me on, "Verapamil" is supposed to help with my High Blood Pressure and Tachycardia. I don't think that it's working too well, and the medication instructions say to call your doctor if you experience the symptoms I'm having. So, I called. He'll probably be more annoyed than anything. That's my guess. More than likely, he'll just tell me to take the issue up with my Primary Care Physician.
I have so many problems with medications. I really wish I could just be med free. It scares me when I'm "flaring" hard though... my heart rate and blood pressure, the Insomnia from hell... everything just gets completely "hyperintense"... anger, paranoia, hearing, even my damn sex drive... and that's aside from the actual physical pain.
If I die anytime soon, don't let them list my cause of death as a heart attack or stroke... or even "suicide". It was MS. Period.
too expensive
Can't take a pill tonight. Gotta wait until, at least, tomorrow night. Many reasons, not the least of which is that I have to manage the food store on Thursday. HAVE to manage.
The day? Rough.
The night? Rougher.
Dealing with the fact that I had to toss my boxers into the sink and put on a fucking diaper?
*extends middle finger*
hold on tight
Yes, and here it is... the point where I cannot even attempt to deny that I'm very much not doing well.
...and I stifle... don't say too much...
don't hurt
don't hurt
don't hurt others.
There's a spot on the roof of my mouth. This morning, when I got up, it was numb. DEAD numb.
The metaphor is accurate.
eew?
I feel pretty damn crappy. I had to take a Lunesta last night, because by 11PM, I still hadn't had more than 3 naps, and each one was an hour or less. More like passing out too, I suppose.
After the Lunesta, I had 3 hour and a half runs between midnight and 6am. That just has to do. It's what I got, and what I have to go on until my brain decides it's going to calm down enough, or until I allow myself another pill. I won't take pills every day. I build up a tolerance very quickly, and then they don't do any good at all in an emergency.
If nothing else, I hope to be able to get a shower today. It's risky, my head doing what it's doing, but I really need one. It's been 5 days since I last managed to pull one off. Yuck.
I'll buy that for a dollar!
I don't know that it's so much that I'm exceedingly tired, but I really want to be sleeping. I need sleep. I haven't slept since I got up yesterday morning. I think that was about 7am, but I'm not sure. Tried the alcohol route, but all that did was make my brain more bonkers.
As much as I don't want to, if I don't manage to get some sleep today, I'm going to have to do the med thing. Tell you what, if you don't like taking medications, this is the wrong disease to have. Not that any of the damn meds really work, but often you end up at that "desperate" point, and you're willing to take anything.
Mentioned the Chemo thing to Neurodude the other day. He said, "I thought that you didn't want to try that!" I believe him that I said that. My reply this time though, was something along the lines of "If I'm like I was in May again, you can pump jet fuel into my veins for all I care!"
So... yeah, you get desperate.
They'll never cure this disease. The drug companies are making billions of dollars off of it.
burning
I'm too tired for this shit.
It's only near 4pm, and I'M TOO tired FOR THIS SHIT.
No, your shit is not SHIT, it's that my shit is SHIT.
Loving many
Having to be wordless
breaking
I get bored a lot. Bored and frustrated. So, I look for things I can manage to do to, at least, kill some time. More and more though, nothing really works, and there's less and less I can do at all. Even cooking has become too much of a challenge to tackle more than a couple times a month. ...and I really like cooking.
I used to be able to pass time online, but I can't seem to manage that lately either. I get too worked up... too overwhelmed, much too quickly. I got Cinemax a few months back, hoping that having some movies to watch might help, but lately I can barely make it through a movie. Either I lose track of what's going on, or I'm in too much pain staying in the same position for that long. Tried to watch "Amistad" earlier. It was pretty ok, but my ears were going in and out of being able to hear anything, and my back was hurting really, really badly. Yes, I got my full dose of "life could be worse", but unlike most people, I don't really think that the fact that my life could be worse invalidates my feeling that my life actually does suck. Same for the rest of the world. If you hurt, you hurt. Period. I only "compete" with people who attempt to invalidate me, and then I go all out to bitch slap them (if I have the energy to even get into it).
Anyway... I wanted a break from being in bed, and so I took one. Now though, I'm hurting, and hoping that I can find something else to watch on tv until I can manage sleep.
Thanks for keeping with me, folks. No matter what the reason you're reading this, knowing that you are helps me out a lot.
Taking it down yet another notch.
I've got a monster of a headache. Had to take some meds last night, and so I'm sure it's fallout from that. Fell asleep thanks to those meds though, and so I'm not regretting taking them.
My blood pressure was really high yesterday. It was high when Neurodude took it the other day too. So, maybe the Verapamil isn't doing such a good job. I don't know. Missed last night's dose. Was passed out before it was time to take it. Missed House too. Bummer.
I have to slow down a bit. The same way I have problems dealing with people offline, I have problems dealing with them online. I've been told that I have a "strong personality". That's what people say who don't want to use the word "dickhead", I think. I'm just not one to keep my mouth shut when people piss me off, and people piss me off a lot.
So, yeah... I have to slow things down a bit online. A lot of things about being online overwhelm me. "Online" is comprised of people, and generally speaking, people irritate the fuck out of me. I've been lucky to find a few true gems in the mix, but looking for them is quickly becoming something I can no longer do. Shit, answering my e-mail is something I can barely do, let alone attempting to navigate things like message boards. Makes me a bit sad. I wasn't always unable to do these things.
right now
This is a good thing.
Just fill in the blanks
I'm going to be brief in this entry, and ask you not to ask me for too many details. There are reasons why I cannot go into detail, which are very valid.
The very short of it is that IVIg is not covered by my insurance for people diagnosed with PRMS.
I have another appointment in about a month. If my "type" of MS is suddenly discovered to be SPMS, I'll be just fine with that. Get it?
Docday
Today, RavensWings is taking me to visit with Neurodude and Dr. MS. Not that I expect to get much out of the appointment, but maybe I can at least walk out of there with a better understanding of the whole IVIg thing.
More and more, I'm coming to realize, that the truth is that they really can't do much for me. There is no cure. There is no stopping it. There's just a choice for me make as to whether or not to make a stink, or just go quietly.
I don't think I'll be all too quiet. Shutting up is very unCutterlike.
one of those days
Some days, people, I hurt more than others.
Some days, I hurt people more than others.
Some days, I hurt more people than others.
Some days, I hurt more than other people.
drink
Rage... anger... it builds and builds... visions... so close up... my eyes are closed, but I feel your neck in my mouth... feel the skin fall... feel the breath labor... feel the blood pour... I swallow and swallow again...
In I stay, behind closed doors...
"Solitary" of my own sentencing.
this is my life
I think that I got really lucky with this morning's call to Neurodude's office. They paged him, and within a minute, he was on the phone. I'm am truly grateful for this. I wasn't looking forward to a day of waiting for a callback.
I'm supposed to go in to see him on Thursday. Dr. MS specialist will be there too. joy. To be honest, I really didn't care too much for Dr. MS. He seemed pompous and rather hostile. Not like I'm such a sweetheart in there either, but even if I try to not be such a dick to him... Dr. MS has no sense of humor at all. I guess that he's used to being treated like a god by his patients and colleagues. I won't treat him any differently than I treat anyone else.
So, Neurodude said that most likely I won't need another MRI before the IVIg because it was obvious from the last one that I was progressing (rather rapidly). A few weeks after the IVIg, I'll get another MRI, to see if the treatment did any good. I'm pretty sure that's what he said, anyway.
fun stuff
While I can still say this...
ok... I'm going to be as honest as I can be...
To say that I'm not doing well, is an understatement. I know that it's tough to tell. All you have to judge me on are my posts. In my attempts not to be a complete DICK, I'm afraid that many people are seeing me as "ok". I'm NOT.
Right now, along with everything else, just being online is completely overwhelming me. Just looking at the screen is overwhelming my brain. Replying to comments is overwhelming my brain. Navigating message boards is overwhelming my brain.
Tomorrow I will call Neurodude, and agree to try the IVIg. It's the only choice I have. If I don't get the lesions to calm the hell down, I'm not going to make it through.
I'm doing my best here. I swear. I'm doing my best to let people know that I care about them, and that I appreciate their support and kindness. I'm sorry that I can't do a better job of it, and that in all likelihood, it's only going to get worse from here.
I'm really sorry.
no side of sausage
I wish I could manage to post something. I've been up for hours, but... I don't know. I'm still, pretty much, in the same spot as last time I posted something here... and I don't mean just on my chair.
Beer for breakfast.
Works for me.
That's different from last time I posted something.
At a loss
I want to talk to someone else who has PRMS, PROGRESSIVE RELAPSING MULTIPLE SCLEROSIS... I need advice, about a lot of things. I did a search for blogs, but all I found was a blog written by a woman whose mother died from PRMS... at the age of 37.
I don't want to argue. I don't want to fight about "whose MS is worse". I don't want to have to constantly explain or defend myself. I don't want to have lesion load competitions. I don't want to be invalidated or dismissed. ...and I DO NOT want to have to keep telling my whole damn life story just to get people to give me a FUCKING BREAK!!!
I'm NOT doing well, and I need someone who knows about this type of MS to talk to!!!
Flare's on
On the bright side, I didn't kill myself, or anyone else last night... and I'm still doing ok enough to hang up on the suicide hotline people.
woohoo?
The Pictures
Growing Up
Goo.
I'm bored. Got books?
Look! I had a ball!
yay. joy. I'm a teenager.
ok, now, where do I get a razor?
Yeah well, they made me shave that off.
I'm the one in the middle with the dyed black hair.
No, I'm not Ralph Macchio.
What catwalk?
Please, stop carding me for cigarettes.
When Childen Attack.
When Babies see bugs?
The rare Bearded Eagle
Green is good.
The expression of the Great Bear.
Thirty... and something.
Serial wha?
Stuffies ROCK (almost as much as babies)
Why am I sober?
Why am I in this store?
Where exactly would you like that cheese?
My friend Terri had lost her hair from her treatments for Breast Cancer. Trying to make her laugh, I goofed around in her wig. It did work. She, and everyone else there laughed quite a bit.
Unfortunately, Terri passed away in 2002, despite my prayers to every God that ever and never existed that I be allowed to take the cancer for her.
It still pains me to have lost such a beautiul, loving, incredible woman from my life.
So, I look at these pictures and the chuckle isn't as hearty as it once was.
I miss you Terri.
Wig picture 1. Wig picture 2.
Terri and I.
Penguins are my friends,
as are hotel rooms.
Right before I snapped.
Delusion is in the eye of the beholder,
and so is my sanity.
Still standin',
still swingin',
and still snarlin'.
Pain Pals
I have a headache. It's not a hellish migraine yet, but it's threatening. Various pains. Fun. Woke me up quite a few times last night, but at least I managed to get some sleep.
As twisted as it sounds, I do actually value the physical pain, to a certain extent. I'm one to question myself, so the pain factor helps in that arena. If I think that I'm not doing well, based on what my head is doing... how I'm feeling emotionally, or how I'm thinking, etc., etc., there's room to let the voices in... you know, the ones that are in there blaming everything else other than MS for my state of being... everything, from beer to my just being a selfish, uncaring dickhead. Much as I want to ignore them, sometimes I can't. The minute I feel confident that I can, I'll come across someone who pokes at my insecurities, and those "voices" become really, really loud. So, I have the pain to fall back on. I may not be able to argue with the idiots in my life whose heads are trapped in their own respective colons, but my pain reassures me that I don't have to worry too much... that my shit is real.
It's important to know that your shit is real, that way you can stop sticking your head up your own ass trying to find out whether or not it actually is.
sick sucks
Damn ears won't stop ringing. It's annoying. A lot is annoying right now.
A lot that I feel I can't even talk about... don't want to hurt people's feelings... don't want to seem unfeeling towards other people. It's not that I don't care, it's that "caring" is a verb... and I don't even have the fucking energy to fake it well.
Caring... yeah... I don't even care that this probably makes no fucking sense, let alone much of a difference.
Maybe it's Clownie Pin fallout. Maybe I'm an awful person. Just maybe though, maybe I have lesions on my brain and that's really fucking me up right now.
Are we having fun now?
If I want to see where I'm at, all I have to do is look at my medication log. I always write down if I take a drug, and what the drug is. I sort of have to. I tend to forget things.
According to the log, I'm right about where I was at in April... about the 11th. That's when I went from saying "No!" to the prescriptions, to saying "Fuck this shit! I need help here!"
Last night, I took a Clownie Pin. (For those of you who don't recall, "Clownie Pins" are what I call Klonopin, because I can never remember how to spell the actual name, and yes, I just looked that up.)
As much as I hate that it's true, I am so not doing well. I'm pretty caught though... I don't want to have to deal with another new "treatment". I don't want days of IV anything! ...and too (forgive me here, RavensWings) I DO NOT want to have to ask RavensWings to do one more god damned motherfucking thing for me!!!!!! She has her own VERY overflowing plate!!!!!
Yeah... "support groups". I'm trying... I'm trying to use the Internet. Right now though, that avenue is doing me more harm than good, aside from a very few people I've been lucky enough to come across who have been very, very kind to me. It's not just that "one bad apple, blah blah blah..." it's that one bad apple makes me turn into a Baboon and I start hurling my feces just because I think that it makes sense to. Online "support groups" are full of bad apples.
On so many levels right now, I hurt. Just trying to keep the RAGE in check is draining. How do I know that I'm not just a bad person? Because I just do. Because I've been told so by other people I respect a lot. Because I know that as much as I've hurt a few people, I've made 100 times more laugh so hard they almost piss themselves. How do I know I don't "just need therapy"? Because I've had therapy... more therapy than anyone I've ever met. How do I know all of this is because of Mary Sue? Because I JUST DO. I KNOW MYSELF!!!!!!
So, what do I do?
Suck it up, buttercup. Either have a beer and shut the fuck up, or call Neurodude and set the fucking treatment up. It's no one else's job to make the call.
ummmmm....
I'm getting comment and tmail notifications in my e-mail account, but yet no comments or tmails are here when I check.
Rather perplexing.
Mary Sue
...feeling the "rage" build and build. I should just name the lesion. Might be more than one though, so I'd not want to offend the one I don't name.
I don't have "Multiple Sclerosis", I just have a friend who comes over to kick the shit out of me every day.
Think I'll call her (please, don't tempt me, you know I'd choose that name if I didn't fear a lawsuit)... think I'll call her, "Mary Sue".
fucking cunt.
Never think with your balls, dooders. Mary-Sue aside, I've known women who could kick the shit out of any of you, and walk away with any one of your respective wives, girlfriends, lovers, boyfriends, husbands, or any of your respective partners you think you possess with your BAD self.
p.s. - Mary Sue might be a dude, for all I've been taught, but when I suggested it, she kicked me in the invisiballs... So, apparently, you can't judge a Mary Sue by her cover. If you want to go for it, fine, go for it... I dare you... she'll do the Lion(ess) thing, and go after your easy-to-rip-off parts first.
Got crack?
Although I do know that I'm one foot into a "hyper-flare", so far, I haven't hit the complete insomnia that usually comes along with it. I've had trouble sleeping, but I can deal with that. "Trouble sleeping" is just par for the course. It's the "No sleep" shit that has caused me the most trouble in the past.
Speaking of which, I noticed a crack in my skull a couple of days ago. It bothers me, as I've been rather proud of my smooth skull. I've always had a perfect head for shaving. Given, the crack is small, but seeing it there really bothered me... not so much aesthetically, but knowing how I got it... or not knowing. I don't really remember that night, but RavensWings told me what she could about the day. It was the day she had to break into my apartment through the window, clean up much broken glass (not from the window, from the night before) and ground in food from the rug, and help me to not put my t-shirt on as underwear. Don't you wish you could be my friend too?
There is a crack in my table from that night. There is also a crack in my skull.
Just because
That template was annoying the piss out of me, so I changed it. If you're interested in viewing my current archive project, the link to it is now at the top of the page, listed in the "my links" drop down menu.
Everything is annoying the piss out of me right now. Fun, fun and more fun.
...and yeah, this template is going to annoy the piss out of me too. Great.
I just don't have it in me to fuck around with it anymore today. Stupid blog shit.
the morning headache
It's tough to see straight through the fear. I'm so damn worried about the point where things get too tough to handle that I may well be jumping the gun on the treatment.
I need to ground myself, but I feel incapable of doing so. I have to figure this out though. This is my life, whether I like it or not. I have to figure out a way to deal with it without pushing myself into an urn.
I think I'm awake
Still plugging away at that Archive project.
I'm trying not to push too hard... I really am. I just hate starting things and not finishing them.
"Unresolved" I don't like when things are unresolved.
off
Either way, I don't feel so well.
The truth of it
I'm guessing that Neurodude is back from his vacation, so I suppose it's on me to figure out how long I want to wait before calling him.
I'm reminded of playing "chicken"... wanting to see how long I can go until I break. The sleep shit is starting up but it's not at the point yet where it'll break me. Same too with the ears ringing, the eyes goofing up, and the various pains. Pain. Right. I go day to day either thinking of Fight Club or Dune.
..."Pain by nerve induction... A human can resist any pain. Our test is crisis and observation.", or something along those lines... and then I think to myself, Paul should've slapped the shit out of that bitch and shoved that box up her ass.
Wonder if the Reverend Mother would have passed that test.
Amused
There's nothing more amusing than having your clippers die in the middle of shaving your head.
Really. I swear.
Sorry, I do not have a camera, otherwise you know damn well I'd have taken a picture.
On a more positive note though, I managed to fix the clippers; my head and face both turned out fine; when I put my jeans and belt on, my jeans fell down; My "M" sized t-shirt fits, as opposed to showing off too much gut like it usually does; and Federer beat Nadal, winning the dudes category at Wimbledon.
I guess I'm having a "high self esteem moment". What other reason could there possibly be for me to have even dared using a semicolon for anything other than a cyber-wink?
Fungus among us
Despite the fact that I had an inch and a half of metal waiting for me to jab it into my thigh as soon as I got out of bed, actually getting out of bed really wasn't too much of an effort.
I didn't sleep very well at all. Whether it's my MS (really going to have to rename this disease for my own humor), or the fact that I'm currently covered in shampoo that has been burning my skin for the last 12 hours or so, I really can't know.
I hate the heat. The heat hates me. Sweat = fungus. Fungus = eeeew! Fungus also = covering good portion of body with shampoo which contains 1% selenium sulfide, and letting it burn. Covering good portion of body with shampoo which contains 1% selenium sulfide, and letting it burn = pain and really yucky fumes. Pain and really yucky fumes = not being able to sleep well. Not being able to sleep well = HELL.
So, Sweat = HELL.
Think I might try the Vinegar method next time. At least you can rinse that off pretty quickly. Bunny was scowling at me all night, and I think that I saw him attempting to go for a huff session at the A/C vent. That's saying something, the A/C is pretty filthy, and Bunny is really picky about that. He's completely petrified of baths.
OFF can be a good thing.
I think that I really screwed myself up the other day. Sometimes, I push myself too hard, or I allow myself to get sucked into things I know that I can't really handle. I'm pretty sure that's what a lot of people call "trying", but I'm beginning to learn that in my case, it's not "trying", it's just plain "stupid".
So, I'm paying for it now. I have to really push myself to shift gears here. With a lot of things I do in my life, they don't make the MS worse, but they sure as shit don't help me deal with it either. A lot of things I do in my life, basically add insult to injury. (Yes, I'm working on it. Shut up.) It's just a lot more difficult to deal with the MS stuff when there's steaming pile of Psych stuff demanding my energy. Not that the MS doesn't cause things which mirror various Psychiatric conditions, but I do have actual Psych stuff too, just like everyone else on the planet. I've worked through more of my "issues" than just about anyone I've ever met though. A decade or so of being disabled and having the cause listed as any form of mental illness, will give anyone the opportunity and drive to do some pretty hefty therapy.
I know the difference between my "Psych Stuff" and the effects of my MS. It ticks me off (yes, that's psych stuff) when people don't take my word for the fact that I know the difference. I do know the difference. I've always known the difference. I guess that's why it ticks me off (see, I'm working on an issue). It ticks me off because people didn't believe me back then either, back when I was telling people, "No! It's NOT THAT! There's something wrong with my BRAIN!"
So, yeah, when people question my ability to tell the difference between my "issues" and the MS burning up my brain, I can get rather testy.
Yes, I was diagnosed with "MPD" in 1994. "MPD" turned into "DID" that year because someone took issue with the "MPD" label and had money enough to change it in the DSM (I think it was the DSM-IV), but it's the same "disorder". The "Secondary" diagnosis was "PTSD". No, they never gave me an MRI, despite my inpatient looneytute stays. Yes, they missed the fact that I had MS then. Yes, I was in the looneytute previously too, back in '86-'87. No, there was no MRI, or any other attempt to rule out MS then either, although I did have MS then, as well.
Yes, there were physical symptoms. I was told how to write them off, and encouraged to. I could run down the list and provide the excuse, but that would take way too long.
So, I've had plenty of time to deal with my issues. Even if I did have MPD, after 10 years of intensive therapy, MPD can be "cured". I did the "intensive therapy". As cured as MPD can be, if I ever had it in the first place, it's cured. It's cured to the point of, if it wasn't for the MS, I'd have no problems functioning like any other "normal" adult. That's the whole thing though... I don't think that it was the MPD or DID which disabled me in the first place. It was, and still is, the MS.
How did I get on this rant???
Right...
I know the difference between when it's a psych issue that needs attention, and a lesion that's in the process of trying to burn a hole through my brain. There are quite a few lesions attempting to burn through my brain right now. I need my energy to deal with that... to deal with the psych issues that come with knowing that's what's happening, and just the effects of it happening... the pain, the fatigue, being dizzy, the cognitive problems, the fact that often, the chirping of a cricket is as loud to me as a Rock concert is to most other people, or the number of other nifty effects of my MS.
I just really have to focus more on doing what I know I need to do for myself, rather than trying to make other people feel good, or attempting to avoid hurting their feelings. Days like the other day... I can't allow myself to end up having them, if I can help it.
So... Mr. Cutter... see that button there? That is the OFF switch on this computer. Please use it more frequently.
Yes, I know that it's also the ON switch. Very funny. You get the point, smart-ass. Just keep the computer off more frequently. There are people on the other side of that screen.
You're getting annoying. Ok, while you are using your computer, you will often be dealing with, through the Internet, other people. That can make you go into "overload". You do not want to go into "overload". Many of those people don't want you to go into "overload" either. So, do them a real favor, if that's how you have to see it, and take better care of yourself. The ones who actually do care will be glad that you did.
the flag was still there
I've written at length, in the past, about sex, gender, and sexuality. I've talked about it on message boards. I've been active in the LGBT community. I've always run my mouth about it, ever since I was a teenager.
Because of my own personal reality, I've studied the subjects intensely... but fuck that. I didn't need the books. I lived it. I'm still living it.
There are just certain concepts that the average person still doesn't get. Just thinking about them makes their heads explode.
Thinking outside the box... above black and white... It's not encouraged in our society.
My head is struggling. I don't feel like writing about the subject anymore. I'm tired of "educating" people. I'm tired of explaining myself. I'm tired of feeling forced to justify my very existence.
I can't not do it though. The subject is too important. The hell that millions of people go through every day is not something I can just let continue with a closed mouth. The violent and brutal deaths are not ok. The discrimination is not ok.
It took me a long time to undo the damage done to me by my society, and my family. It took a long time for me to get to the point of being able to give myself more credit than I gave them. Too though, it took me a long time to "get it". I don't expect other people to just "get it" overnight.
I'm not a "normal" guy, thank GOD. "Normal" means average, and in my world, the average person is not someone I want to be anything like. Just because I'm not a "normal" guy though, doesn't make me any less of a man... and calling myself a "man" does not mean that I think that I'm any better or worse than those who call themselves women, or who prefer not to identify as either gender. The fact that there are only two sexes to choose from is ridiculous. The fact that there are only two genders to choose from is also ridiculous. "Sex" is a physical stereotype. Gender is a social stereotype. ...but that's all they are, stereotypes. Sex, gender, and sexuality all exist on a continuum. Forcing people into one or the other sex, or one or the other gender, is cruel... it's harmful, yet we still do it. Fearing for our own identity, we cling to these labels for life... and we often kill those who threaten them. WE... "Human Beings"... WE, who put ourselves above other animals... WE who can get to the moon and plant flags there... WE. WE kill people who turn us on because they happen to have similar parts to our own.
Yeah... WE are so fucking superior to dogs. In my opinion, the dogs have the right idea. "I don't care if you're a couch! It feels good!"
Sometimes, I don't want to call myself human at all. I'm ashamed.
but... being a human, I keep trying to learn... about others, and about myself. We got to the "top of the food chain" because we could kick the shit out of all the other critters, but that ability is also our weakness. So, I'm trying to "Rise Above" (thanks Henry... and Greg). I'm doing what I can. I can WRITE, and so I do... and I won't stop until there is no possible way that I can write another word. I'm trying to do my best to make sure that we don't kick the shit out of one another, and hand the planet over to what will become the new King Critter, the Water Bear.
p.s. - no offense to the Water Bears ...cute little critters.
Censorship SUCKS
I'm having A LOT of trouble with the new Archive site I'm attempting to build. Even aside from the emotional rollercoaster it's putting me on because of reading over the old stuff, the site itself is really pushing me in all the wrong directions. This morning, I found out that I can't use the word "click", or any word that contains the letters l, i, c, and k in a row.
I suppose that I'm going to have to use blogspot. I don't really want to. What I really want to do is use tblog, but they don't have that nifty "back date" feature.
I don't know... maybe I should just handle it like I did the "MS Awareness" project. Post, or re-post the writing here, adding a link to explain the project.
I'll figure something out... somehow. Hopefully the people who are reading will bear with me.
Men with balls
ok... I'm STUCK!
Federer vs. Bjorkman?
How is this FAIR?
Wimbledon can be downright EVIL.
Federer vs. SWEDEN?!!!!???!! vs. JONAS???
SO not fair.
I guess... as long as Nadal loses, I'm ok... but still... holy fucking TOUGH CHOICE!!!
"tfriends" is BROKEN
It's been quite a while since it was possible to add a "tfriend", or to be added as someone else's "tfriend".
This bothers me, because I don't want people to see my "tfriends" list and think that all the people on it are more special to me than anyone else on tblog.
In truth, I have a list of over 60 tblogs that I keep an eye on. I keep the list on my desktop, and each day, I click on as many of the addresses as I have time to, and read if there's anything new the person posted. Even if I know that the person probably didn't write anything, often, I still click. This does two things. First, if the person is logged into tblog, they see that I hit their blog. It's my way of saying to them, "I'm thinking about you." Second, it gives them a hit. It's like voting... it's my way of saying to the web, "Hey! This is a person who should pop up on everyone's radar!"
I do this with the 60 or so tblogs I have on my list, and as well, a number of non-tblogs.
I could post a list of "blogs I keep an eye or two on", but that would be WAY too long. If I just listed the currently active blogs I read most often, it would force me to "play favorites", and that can often hurt people's feelings, so I've not done that either. The tfriend thing was nice, because it limited things to tblog only, and it was a mutual thing. I add you, you add me, tblog chooses how to list us on one another's list.
I hope that they'll eventually fix the "tfriends" feature. There are a couple of people I've been trying to add, to no avail, for quite some time. I tmailed Rocky about it, but my guess is that he's pretty busy tweaking everything else that's gone goofy around here.
And now my bitter hands cradle broken glass
I'm putting A LOT of fucking work into this STUPID FUCKING PROJECT.
WHY WHY WHY!!!!???!!!!
I have no FUCKING CLUE!!!
Why do I have to pick at the SCABS!!!!
WHY DO I CARE???!!!
WHY do I feel it necessary to BEAT people with my PAIN???!!!!!
fuck this shit. I'm gonna go get drunk. Yeah... all the way to the kitchen and back... I think it's about a 12 foot walk.
Damn do I ever miss the bars.
Ms Coffee
Had some trouble getting to sleep last night. Not that I wasn't in bed trying, but it was hours before I was able to actually fall asleep. Makes me nervous. I feel it coming, and I dread it.
Actually, to be more accurate, I can feel it... it's still here. It's at a steady perk right now though. The pot isn't yet blackened and dangerously close to shattering.
The warning signs are there... the shift in sleep ability, the hyper-sexual state of mind, the random odd and intense bursts of pain, the eye problems, the sudden shift in my perception of reality... It's all tapping me on the shoulder.
"Hello! This is your MS! Remember me?"
"Yeah. Fuck you."
...and the MS tries harder for my attention.
"OUCH! QUIT IT! THAT HURT!"
...and the MS chuckles.
Hey, want to hear something cool? I was just looking at what I wrote and saw the "S" in "MS" shift from capital, to lower case, and then back, in the course of a second or so.
"Ms" indeed.
Bitch.
Doing what I can
Just wanted to let y'all know, that I know, that it's damn near impossible to read my archives. There's a lot there. My archives are important to me though... they cover a lot of ground which I often have no desire to cover again.
So, if any of you have an interest, I'm in the process of creating a site where I'm condensing my archives. I'm going to select one post per month, from my archives here, to re-post there. Any of you are more than welcome to visit and read. In fact, I'd be honored if you did.
Not that I'm trying to re-direct traffic from tblog, but as of yet, the ability to back date entries is not something that is offered here... so, I had to find another place to do the project.
Yeah... ummm... so... if you're interested, head over to this place.
I'll be adding entries as I figure out which ones I think are the most important (or impressive... shoot, I do have an ego.)
Thanks for humoring me.
- Cutter
In Cucumbers We Trust
Not that being out in the heat yesterday was all too good for me, but I sure am glad that I have some good food in the house. Sometimes, I impress myself with my ability to shop. Especially around here, following a budget when it comes to food is pretty tough. So far though, I'm managing pretty well in the food department. I get what I need, and can manage a bit of what I want every now and again.
While waiting for access to the cucumbers, the woman browsing them overheard my conversation with RavensWings. Not too difficult, as I'm not exactly the type to speak too softy when I'm annoyed. It never fails... every time I'm at the store, no matter what, when it's time to get a cucumber, I have to wait. I have no clue why that is, but it seems to always happen. Too, the cucumbers are almost always about a day away from completely GROSS.
Anyway, we were talking about the prices and quality of the produce, (RavensWings has a better concept of it than I do, being that she lives in another town) and Madame Cucumber was rather surprised to hear that the food at "our" outlet of the same food store chain was so much more than at RavensWing's local outlet. Pretty unfair to take advantage of people like that. Madame Cucumber didn't appear to be on the high end of the income scale either.
That's the thing though... I live in a town that has MONEY. They have their own cable company and their own electric company for cryin' out loud. So, knowing that, the local retailers assume that everyone has the extra money to spend on things like almost rotten cucumbers... or the ability to drive about half an hour to a cheaper store, and afford the extra gas.
I don't know if Madame Cucumber really has a choice, but my guess is that next time she goes to the food store, she'll think twice before she decides where to go.
All that to say, Fuck Voting, just run your yap... speak up! If we don't communicate, we're allowing people to take advantage of us. Vote if you want to, but if you think that's all that it takes to change the world you live in, you're going to keep paying a whole hell of a lot more for a whole hell of a lot less, and you won't even know that you're doing so.
When I was a younger Cutter, terrorizing my High School teachers, there was a rather catchy saying that many of us punky types loved to write all over everything.
SILENCE = DEATH
They say that "children should be seen and not heard", well... I ain't no kid anymore... and I do know the truth of that saying. It may have started out as a statement about the AIDS crisis, but for me, it evolved into a concept I apply to all areas of my life.
I don't care if it's about being turned into disabled, impoverish ed lab rats by the drug companies, or about the overpriced, almost rotten cucumbers at my local grocery store. Until I can't speak anymore... until I can't write anymore... I'm not going to suffer silently. It's my right to SPEAK!
Sheesh! All that from picking out a cucumber at the grocery store. Good thing I don't get out much, huh.
Dependence Day
I'm doing my best not to fall immediately into a funk. It's just the usual. It's the third. Have to pay the bills.
To be all nice and grateful, thank you to all you working Mary Cans out there. It might only cost you a very small fraction of a penny to support my sick ass, but without it, I'd be eating my peers.
RavensWings will be here today. I will go to the food store, with her help... and also enjoy her company. Hopefully that will somehow take my mind off of the whole "I'm paying WHAT for TV, Internet, my computer, and Phone???!!!" experience of this morning.
Maybe by November I'll have this computer paid off. That will help a lot. If I pay it off, that should look good on my credit report, and so when this one goes, I won't freak out as hard. I don't want any credit cards. Credit cards are EVIL. Having this one Circuit City card is good though. It's my emergency "Oh shit! My computer died!" card. It lives in my drawer, not to be used for anything else but a working computer. If I could, I'd buy gifts for people using it... but I can't. That's part of what got me into this credit mess in the first place. Buying things for people may make me feel good, but in the long run, it leaves me hungry... and then I'm miserable... and my misery is not something I want to give to my friends.
Yeah... so... anyway... I have to get myself ready for the shower. It's not exactly the easiest thing in the world for me to do. According to my calendar, I only managed 9 last month. Sad as it is, at least I managed those 9, and I managed them all by myself, and I was able to stand for all of them. It's more than many of my MS peers can do... and so for that, I am thankful. ...and I always think of them when I'm in there... wishing I could send some of my strength their way. I'd gladly sit, if it meant even one of them could get some of their privacy back.
Vamachara
Holidays can really get to me sometimes. The whole lack of family thing, you know?
I don't know that I'd really have it any other way though. The left hand path is mine. I've earned my battle scars. I wear my mark proudly. I have reaped the benefits of walking this path. I really do not care that it does not come with hot dogs and hamburgers.
Everything has its price.
You can keep your fireworks. I'll be here enjoying my drink, and learning how to find even more pleasure in the pain.
They say that what doesn't kill you makes you stronger.
I'm one tough motherfucker.
Have a happy Independence Day.
Hunger
Just got finished watching "Soul Food". I really, really liked that movie. I think it was from '97... never saw it before now though.
I'll tell you something about it... in the end, as the credits were rolling and I hit "stop", I realized that the thing the movie made me feel the most was "hungry". ...on many, many levels.
Inside Job
I'm racing. I suppose that it's better than dragging, but I know the feeling... and it's not good.
Have been having some pretty horrible pain in my legs... and today it's in the left hip... and for a little while, behind my right eye. Not good.
Calm before the storm. Like I said, I know the feeling. From Saint, to Demon, to Cowboy... and then... completely gone. Doesn't matter that I know the feeling though... there's not a damn thing I can do about it.
As much as I want to drink, to slow my head down, I'm trying not to. I want to though. I want... I want... I don't know what the fuck I want. I don't know what the fuck I want, but I REALLY, REALLY want whatever the fuck it is.
Tennis just ain't doin' it for me, and later tonight, I doubt that Pearl Jam on VH1 will either. A three-way with Andy Roddick (he may have lost, but I don't give a rat's ass, he's still hot as FUCK... and heh heh... he said, "ROD DICK") and Eddie Vedder might though.
Yeah... that's one way I know I'm flaring, even if I'm feeling ok otherwise. I actually do need the law to keep my sexuality in check. (ok, that's a sort of half lie. I believe FIERCELY in consent. It was just a sort of "figure of speech", dammit.)
No worries. I follow the laws. I know that there's a reason for most of them. Can't stop me from thinking about the extreme though. Gotta have some fun in this MS infested life.
Fire
So, it's July. I've had good Julys. I've had bad Julys. There's really no telling what this one will bring.
Thinking about fireworks, and how they've taken on new meaning in the lives of many. A lot of kids have come back from doing their jobs in the Middle East... a lot of adults have come back that went over there as kids...
Fireworks... yeah... right. Welcome to the wonderful world of Post Traumatic Stress. My sympathies go out to all of you.
