Game Over
There's a lot I should probably be writing about. Honestly, I should pull out my journal and unload some shit there, but for some odd reason, I can't manage to.
I'm sitting here... it's quiet, except for the hum of the A/C, the ringing in my ears, and the sounds of Wimbledon coming from the tv in the other room. I feel odd. I'm not as angry as I should be about last night. I suppose that maybe, the truth is that I really don't care. In one sentence, things clarified. What little of the delusion that was left was shattered.
It's not that I hate her. I really just don't feel anything for her, not even pity. It's as if she's being erased from my mind. Don't know if that's a good thing though. I don't want to forget the truth. The truth is that she is completely delusional. The truth is that she never knew me. The truth is that she never wanted to.
I think that I'm moving past the anger... the anger towards her, and towards myself. I think that it was my own doubt that made it go on this long. Through all of it, I constantly questioned myself... constantly doubted...
I guess that after she said what she said last night, the doubt vanished. No matter what mistakes I made, it wasn't about my being a bad person. I did not go into it with evil intentions, nor did I go into it being completely suicidal (that came as the relationship progressed). I went into it ready to sacrifice just about everything I had, everything I cared about... everything that made up my life as it was, just to make her happy... just to prove to her that I really did care for her.
That was what did it last night. I got angry. We were talking heatedly about everything, and to my "I destroyed my life for you!", I got, "What life? You didn't have a life!"
...and that was that.
I hung up on her.
Balls
Had a really rough night. It was partially my own fault though, I suppose. I'm just an idiot, sometimes. Called the ex, and well... I'll leave it at that no matter how much you want something to be true, you can't make it anything other than it truly is.
So... I missed taking my Verapamil. As I write this, I have a very, very odd headache. Can't say that I've had one like it before. Quite painful. I took the missed dose about half an hour ago, when I got up out of bed, but now the whole schedule is off. Hopefully it won't kill me if I take it tonight, back at it's "normal" time.
Think I'll be in bed a lot today. I'm feeling pretty crappy, and there's tennis to watch. Venus and Andy. Not sure that they're playing today, as they did play yesterday. Pretty sure Venus is doing the "doubles" thing though, so she's probably playing.
I've been a tennis fan since I was a teenager. I started out as more of a Martina fan, and so still today. I'm happy that she's playing at Wimbledon this year. I just respect the hell out of her.
It's a shame that there aren't more high profile tennis matches where the players are more my age though. Not that the matches between twenty-somethings aren't great to watch, but I can't help but prefer to watch people my own age grunt, groan, and swing at one another. It's easier to appreciate the athletic prowess that way, and too... the players are a lot more physically appealing to me. Actually, I wish all sports were that way. I'd actually watch them a lot more often if that were the case. Probably not baseball or golf though. WAY too boring. ...and who the fuck called Poker a SPORT!?! Pool and Bowling, I can sort of hang with, but Poker? POKER? Yeesh.
Yeah, anyway... I'll be in bed, watching balls go back and forth on the tv.
I want to eat you.
I am SO FUCKING HUNGRY!!!!!!!
I can ONLY connect this to the BP medication.
SO
NOT
FAIR!!!
I'm doing my best... trying not to post something along the lines of, "I'd eat you dead!"
Fucking drugs.
I hate this shit.
The skin suit
I put on a few pounds over the last week. I can't figure out if it's the Verapamil, or just the fact that my appetite is out of control. Could be both.
So far, I can't say that I've noticed too much of a difference from taking the Verapamil. Then, I don't exactly have a Blood Pressure thingee to keep an eye on my numbers. Maybe I'm a little calmer, I don't know. It's tough to tell what's what. It could be MS related, it could be Verapamil related, it could just be my not really giving a fuck anymore. Maybe I'm just too tired to care.
I'll be turning 37, in a couple of months or so. It's playing with my head, the same way 27 did. 27 is "almost 30". 37 is... "almost 40". I can't even pretend to be a kid anymore.
I had to chuckle at the end of my last MRI. The nurse/tech called me "kiddo". She wasn't much older than me. Yes, I look young. I have genes that many envy. My brother can still pass for teenager. My mother looked twenty-something through her thirties. I'm pretty sure that on a good day, I can pass for 26.
I guess that now, that's not so bad, but being seen as a teenage boy for about an extra decade or so did really suck shit. Even when you are one, you don't really want to be seen as one. It's like walking around with a sign on your head which reads, "GUILTY'. It's A LOT worse for black guys though. Until they're grey, as in hair color, or as in less black and more white looking, they're almost always viewed as "GUILTY" by this racist society. Large numbers of tattoos will do it too. Even if you're 60 and have faded sleeves, you're presumed to be an "ex-con".
Sad world.
my best isn't good enough
My brain is pretty "off" today.
The thoughts are there... the ideas... the epiphonies... but they're not making it into type.
I keep trying, but then I look back at it a little while later and say, "huh?".
Everything keeps falling apart. I know what I want to say, but something along the lines of "ugh" comes out, and it's not even spelled correctly.
You can only edit so much... re-submit so much... apologize so much.
No matter where I go, there I am.
...yet, there I'm not.
sux
Did some more reading on the whole Mary J. issue that's being voted on in Congress today. It's not that it's not a big deal, but it's not as much of a personal deal as I first thought (jumped to conclusions).
I have to force myself to slow down a bit. I often try to move at a pace, especially with reading, that I once used to be able to move at. I have to realize that I can't go at that speed anymore.
Tastes like your yard.
So, from what I've read, they're voting tomorrow on whether or not I, and quite a few other people in MassiveJewZits, deserve to get some relief from our suffering through herbal medicine.
This is me... not getting my hopes up.
after further review of my e-mail...
it seems that it's bigger than a JewZit... it's one of those big ol' U.S. of A. thingees.
Whatever. Now I REALLY won't get my hopes up.
This is me... having a fucking drink.
The sniper in the brain.
It's second period.
At noon, Frank's opens.
I'll be out of here at 2:37.
4:00, the bar is open.
11:00, it's time for The Daily Show.
It's almost 2. Must be last call.
Funny how we do that... remember times and dates. Every day, there's something. If it's not a special date, then there are many times. Memories. ...always something there to remind me...
I can't even really listen to music anymore. Music has become "triggering". It starts poking at my emotions... poking at things I don't want to remember... it's all too painful... emotional overload.
June 27th. I've "celebrated" that date every year since 1983. I used to call it my "Spiritual Birthday". In time, I referred to it as my "Awakening". Now, I know it as my "MS Anniversary".
It has now been 23 years since my first really severe "flare"... since the moment when everything changed... when I changed... when I woke up... snapped... had my perception of reality completely and continuously altered against my will. Everything just suddenly either INTENSIFIED, or died. I came out of a tunnel onto a long and winding road.
One label after the next, one judgment after the next, followed that first "flare". To this day, I'm still trying to get the labels off. To many, it is easier to deal with me if they can still cast me as "the bad guy". It's easier, because they feel less guilty. With many of them, they never really said that they blamed me, but I knew they did. No matter how hard they tried to fake it, I knew what they really thought. Their actions, or lack thereof, spoke a lot louder than their words.
Once I had the MRI disk and Radiologist's report in my hand, I thought that it would end there. I finally had concrete proof that what I'd been saying for decades was not a load of crap... that it really WAS NOT my fault. I was actually happy about the MS diagnosis. I thought that maybe, just maybe, the people in my life who walked away would somehow see their error and return, treating me with some amount of respect, or at least apologize. No such luck.
That's the thing though, it shouldn't have mattered. It shouldn't have mattered if it was MS or PTSD, MPD, DID, or if it was just that I was a nut case. It shouldn't have mattered. They should not have been judging me. The fact that they treated me the way they did had nothing to do with my diagnosis, it had nothing to do with me at all. It had to do with them. An MRI? Proof? That wasn't going to stop them from being judgmental. That wasn't going to stop them from treating me deplorably and using my being "bad" as a justification for doing so. If nothing else, what the proof might have done is make them defensive. It made them cling even tighter to their original position. They now look for examples of other people with MS, and hold it in their heads that it's obviously not MS with me. Just look at Terri Garr and Montel!
Allow me to share my thoughts on judgement...
There's a BIG difference between judging someone and not liking them. We all have preferences, it's human nature. We like some people, we don't like others. We're attracted to some people, we're not attracted to others. That's not judging someone. "Judgment" is when you deem someone lesser than... when you put yourself over others, or view others as somehow less worthy, because of your own personal set of ideals and standards, or your learned moral compass. Judging someone is... thinking or saying, "You deserve it." when someone is hurting, because you don't agree with the way they live their life... or when they have good luck, and conveniently enough, follow a moral code similar to yours. ("You deserve it because you follow the correct moral code... the one I believe in!" is also judgment.)
I think that we all want to be liked by everyone, but it doesn't work that way. We can't all get along. We can't all agree on everything. We don't have to judge one another though. That's something that we've learned to do out fear and insecurity.
I might think someone is an asshole, but that doesn't mean that I'm judging that person. It just means that I don't like them... that I don't prefer their company. They're no less of a person than I am. They're no less worthy of good things. They're no less deserving of love. They're not doing anything intrinsically WRONG. I'd just rather spend my time and energy with people I get along better with.
That's my problem with many people in my past, and in my present. I don't like judgmental people. It's because of judgmental people that I've spent the last 23 years living a life that is only a few steps above hell, on many levels. I could say the last 36, but that's different. What I went through in my childhood was something that I could have overcome a lot easier if it hadn't been for the MS.
Yes, I've known some really incredible people in the last 23 years too... people who aren't judgmental... people who are caring... people who I really cared about, and still do. These people are the reason I'm still here. They kept me going... gave me some faith in humanity. As I said, a few steps above hell.
I think back often, and wonder what these last 23 years would have been like if I'd been labeled as "sick" rather than "psycho". In truth? If I'd been seen as "sick" instead of "psycho", I don't think that I could have made it. "Psycho" is armor. "Sick" brings pity... means weakness. "Sick" leaves one without a whole lot of hope. "Psycho" means people will fear you, and be less likely to get in your way.
Maybe that's why I hold onto that "Psycho" label, despite it all.
Don't see me as weak. Don't judge me. Don't try to manipulate me.
I may have Multiple Sclerosis, but too, I have no fear of being seen as a Psycho. Shoot, I take out ads. Over the last 23 years, I learned to take pride in it. I sort of had to.
I have gone where most fear to even admit to wanting to tread, and I still do.
It's just that now, I have to limit my show to the ether... online... or through phone wires.
It's all the same though. There are plenty of people here in the ether... plenty of assholes and, thank your gods, plenty of saints.
It's June 27th again... and I'm still here.
Just a smile
It's HardToImagine's son Zach's birthday, and I have to say that the picture she posted made me smile BIG.
I value my smiles.
I'm lucky to get a few, every so often.
I am a person of extremes. With passion, I both hate and love... cry and smile... give up, and keep going.
Happy Birthday to Zach. I don't have kids of my own, but that doesn't mean I don't appreciate them.
I'm glad that there are some taking up residence with some good people.
Gives me hope for the future.
I hear my tv calling.
I feel tired. Put way too much energy into that comment ridiculousness yesterday.
I didn't just put the warning there to protect the feelings of certain readers. I put the warning there because I didn't have the energy to spend dealing with people's egos and personal crusades. I put the warning there in an attempt to protect myself, as well as the feelings of others.
They say that with any sort of art, a bad reaction is better than no reaction. This is often true, in my opinion. MS though, is not art.
I think that, in the future, I'm not going to waste my time on warnings. I've given enough of them in the past that people who claim to have been reading my blog should know better by now. I should know better by now too, I suppose. There will always be someone who has to do what you ask them not to, just to try and get a reaction from you. My mistake is giving them the energy... giving them what they want. In the past, I didn't mind. My freely giving them the energy, made the energy worthless to them. These days though... I don't know. The energy I get to suck from them doesn't make up for the energy I give.
Going to have to work on this.
beer me later
I am so not liking this whole migraine thing. It's the second day in a row I've gotten one. At least, I'm pretty sure it's the second... could be more than that. Wish it would just pass. I'm having one of those "I want a beer" moments, and it sucks that I have to be afraid of making the migraine worse.
Maybe, if I drink enough water, I'll be able to have a beer later. Probably won't feel like it then though.
Why did they have to make beer taste so damn good? Evil inventors. Evil.
It's one of the few beverages I not only like, but am not allergic to. Most beverages have ingredients which break my skin out horribly. Citric acid does it. High Fructose Corn Syrup does it. Caramel Color does it. Shoot, too much sugar can do it. Oh yeah, and I'm "allergic" to milk.
I have water, coffee, and beer... and some of the harder liquors, which I'm not allergic to. I don't like tea. I only drink tea when I'm sick, and that's pretty rare (MS aside). I'm a "drinkaholic" though. I'm almost always drinking something. In the morning, it's coffee, at night it's water. In between, sometimes it's alcohol, often it's water, and I'll occasionally take a sip or two of juice (not too much though, it's not worth the itching no matter how much I like it.)
I'm in the mood for a beer. My taste buds are wanting one, anyway. My head? Not so much.
Sometimes, I love my brain.
...morning observation ...unintentional metaphor
I was born at a place called Nazareth, and called a man of Christ, in the year of the Rooster.
one last warning
It's a general rule anyway, but if you're easily offended, and tend to lean toward the "conservative" side, best you...
stay away.
I'm heading toward "not nice"... and that's putting it mildly.
I'm doing my best to warn people.
This one feels like it's going to be BRUTAL.
The Cock Of Christ
...and there I was in the hospital...
I don't know how I got there.
I don't know what happened before or after.
I remember being in pain.
I remember just wanting to sleep.
I think that I, vaguely, remember putting on my (fucking all I can mother fucking handle and afford, Wal-Mart, velcro) sneakers... without socks.
I dont' remember much more than that though.
Fuck that day... many, many days earlier was the (in truth) first day I actually TRIED to kill myself.
I'm writing this with my right eye closed. With both open, I really can't see all that well.
Yeah... I've been vocal about being suicidal for decades, but...
No worries, peeples. I've hit a point in my HELL... oops... I mean, "life" where I won't call it a day without warning.
Why?
Because I care. Because I do not want to hurt others.
I'll sooner hurt myself than hurt others.
This is the truth.
Lord...
ok... if you're a Christian, stop reading here.
Jesus... put your cock in my mouth.
Let me
earn
my
PEACE.
dip shit
I discovered, between last night and this morning, that Salad Dressing makes absolutely no sense.
Not being able to get anything near the amount of exercise I need, I've tried to alter my diet a bit, in an attempt to keep myself at a healthy weight. Salad has become a staple for me, as not only does it help burn fat calories, but helps to keep the digestive tract functioning. ...and with MS, in that department, you need all the help you can endure.
So, despite my allowing myself the occasional binge with a bucket of KFC, and having the option to drink beer whenever I feel like it, I'm fairly fit... at least compared to the "average American" my age. My health problems are MS related. Nothing I can really do about that.
Anyway... back to the Salad dressing.
Yesterday, was food store day. While making up my list for the event, it occurred to me that when I get up in the middle of the night, having something healthier to snack on than picking at whatever was in the fridge from that day's meal, munching on olives, eating a few spoonfuls of cottage cheese, or in the case of REALLY hungry, nuking up a hot dog, I should cut up some of my salad vegetables, and keep a container of French Onion dip on hand.
Years ago, I all but banned myself from French Onion dip. Even more so than cookies, candy, ice cream, or anything else that might be considered BAD snack food... potato chips and French Onion dip? In the world of Cutter? Evil and WRONG. In the past, when I allowed myself to buy the stuff? Screw the chips. They only existed to keep my hands a little cleaner. Often, I'd just eat spoonfuls of the dip. If there were only the crumbs on the bottom of the bag of chips, they were poured into the dip container, and it was devoured like a bowl of cereal. So, like many foods which are on my "BAD" list, I simply did not allow French Onion dip to live in my apartment with me.
...until yesterday.
Last night, when I made my way to the fridge, I grabbed the dip and some cucumber slices. I ate a couple of slices of the cucumber, and maybe a tablespoon's worth of dip. (Not counting what was stuck to the plastic sealing sheet. That, I simply wrote off as a "bonus".)
While putting it away, I glanced at the nutrition info, which I have a horrible habit of doing, and said, "Whoah! Cool! only 60 calories per serving! Rock on!" before tucking it back into the fridge. On my next trip to the fridge, a couple of hours later, I read more of the info. From what it said, a "serving" is 2 tablespoons full, and 45 of those 60 calories are from fat. Not a problem. Many vegetables burn fat calories, so it might even out.
When I got out of bed this morning, something occurred to me. If I love this stuff so much, why not use it instead of salad dressing? Then I thought more. If this stuff was "healthy", then everyone would be using it as salad dressing. Right?
Before even making the coffee, I took out the dip, and grabbed my bottles of salad dressing. In my view, "everyone" is pretty fucking stupid, especially when it comes to Americans and what is healthy. So, I did my comparison...
The "serving size" is the same for both. 2 Tablespoons. (This made the rest easy.)
Average calories for dressing - 120. For the dip? half that.
Average fat calories for dressing? - 110. For the dip? 45.
Line after line, from grams of fat to sodium, the French Onion dip won by a mile.
Cutter is a happy midnight muncher.
...and FUCK SALAD DRESSING!!!! I'm switching to DIP!
I don't care if the truth really is "you are what you eat"!
I'll be a much healthier "dip" than the rest of the people in this dippy country.
ouch (for the umpteenth time)
I really wanted to spend some time online, but after only a few minutes, I'm feeling completely unable to function here.
Got the migraine from hell. Not sure if it's the new medication, the KFC sodium fest, or the weather (thunderstorms). All I know is that it really hurts. I took an 800 mg Ibuprofen, and it seemed to help a little, but I still feel pretty crappy. Even before the KFC I was feeling off. Honestly, it feels just like my blood pressure is through the roof. I had a bad (adverse) reaction to the last BP med, so it wouldn't surprise me if it happens with this one too.
I suppose that I'll take it again tonight, and see how I feel in the morning. Think I'm going to be in bed a lot tonight... sleep or no.
This sucks.
Still pumping along
Well, so far so good, I guess. Apparently, the Verpamil won't kill me. Right now, my pulse is 112, but then all I've had is coffee. I took the pill about 10:00 last night. Hmm. Wonder if it's one of those "it has to build up in your system" drugs.
My sleep was normal (for me). Something like 3, then 1.5, then a couple of .75 shifts. In all, I'm pretty sure that I got about 6 hours of sleep. Whether that had anything to do with the medication, I really don't know.
I suppose that I'll know whether or not it's doing its job after my skin feast.
Pass the salt.
Feeling sort of off today. Sort of depressed, sort of apathetic.
The Cymbalta should be out of my system by now. I guess that means that whatever symptoms I'm having are either permanent or part of something being affected by my currently active lesions. I guess that can help make me feel a bit depressed. Then, the depression itself could just be one of the actual symptoms.
I suppose that I'm free to take the Verapamil (sounds more like the name of a dinosaur than a brand of blood pressure medication) for a test drive tonight. I probably should. I think I'm going to drown my sorrows in a bucket full of KFC tomorrow. Well, the skin anyway. I eat all the skin on the first day, then use the chicken for chicken salad, to create a few meals. I do have a food budget to adhere to. At $30 a week, you have to be both careful, and creative. Shoot, these days, even a box of Kraft Mac 'n Cheese is more than a dollar. ...about $5 for a pound of ground beef or a pack of hot dogs. The 12 piece bucket of KFC chicken for $10 coupon I have? Pretty darn thrifty. That's about 4 or 5 sandwiches, plus the initial cholesterol and sodium party meal. Just have to have the bread, mayo, celery and garlic... and lettuce and tomato, if I want it. Ends up being within the budget.
I'm glad that tomorrow is food store day.
Thief! Thief!
Took my trash out and got the mail. Joy. A bill.
On the way back, I stopped and chatted with my neighbors. "Frank" is 2 doors down from me, and REALLY friendly. I forget his friend's name, but I chatted mostly with her. Politics, pets, the building...
"Bandit" a very rockin' Shih Tzu , was hanging out with them, and so I was CUTE!ed for a bit.
I wish I could have a dog. I wish I could walk a dog. Dogs make me smile. Evil varmints... god damn CUTE! genes.
Bunny is scowling.
Don't worry, Bunny. No one or nothing could ever replace you.
Round Two
I just wanted to make something clear, to those of you who read my blog and the comments left on it.
My recent "blow up" at "Amber" is not something the rest of you should take to heart. I do appreciate comments. I love them, in fact. My problem with Amber is/was the nature of the comments, and the number of them. As many as you still see on my blog... I've had to delete just as many.
It's not that I don't want anyone talking about themselves, it's that I don't want someone turning my blog into their own little private support site.
"Amber" is a member of an online MS support group, but yet she chooses to come to my blog, posting under a name that no other member of that group will recognize, and attempts to turn it into "The Amber Show".
She has the ability to contact me privately, but she has not done so. She has access to many, many, incredibly supportive people at the MS board she belongs to, but does not post there in the fashion she posts on my blog.
I simply DO NOT have an hour, or more, a day to concentrate on Amber. I can barely give my brother the attention he deserves online. I feel manipulated, and used by "Amber", and so, in so many words I said so in my most recent replies to her comments.
PLEASE don't be afraid to post comments because of how I'm reacting to her. I value your comments, even if I can't manage to reply to all of them.
About my roommates.
My roommate, Harold, is a Dwarf Palm. I care for him a great deal. He doesn't seem to mind that I eat broccoli, and although I'll kid with him about eating him when I'm hungry, I never would. He provides me with something which means more to me than food.
Bunny is my other roommate. He sleeps in bed with me, as long as there's room, which there usually is. He's kept me company for almost 30 years, and has been through hells worse than most people I know have.
Although my references to them are often light hearted, things like animals (plush, in my case. I have horrible allergies.), plants, or even just objects (like Nessie, my cane), do actually serve a very valuable purpose for some people. (Shoot, not just people, but many other animals too. I've seen many dogs with teddy bears, and many animals cross species barriers and pair up as pals.) So, yes, companionship, in a way, but too... sometimes, all we really need to feel is needed. Being chronically sick, or disabled, can be hell on the whole "self worth" thing.
I take care of Harold. I make sure that he gets the light and water he needs. In return, He gives me some good stuff in the air I breathe.
I protect Bunny, and value him. He looks like I often feel, so in my attempts to cheer him up, sometimes I end up cheering myself up. Too, Bunny does not smile at me when my head is too far up my own ass to see that I'm giving people way too much credit. He makes sure that I don't forget to second guess myself, or anyone else.
Nessie is my protector. She helps me out when I'm falling down, and can become an extension of my fist, in a crisis.
What do I give to her? *shrugs* I bring her to life.
So, can I joke about it? I suppose, but too, for me, it's very serious. If someone fucks with Bunny they'll wish they'd fucked with me and Nessie instead. I love my rabbit more than I've ever loved anyone or anything. It's safe to. Bunny can't break my heart, and never lets me down.
My "roommates" are extensions of myself. They make sure that despite it all, I don't forget to love myself, protect myself, care for myself, value myself, and yes... laugh at myself.
I can't remember.
To be perfectly honest, I am so not doing well.
I'm not in much physical pain, but my head... brain... it's all jumbled. I'm dizzy. I can't see straight. Noises blur together, then jump out at me. Everything is overwhelming me. I get moments of clarity... like the sun briefly shining through very dense cloud cover... but then it's gone.
I remember a year or so ago. I would hold onto 3 things in my mind. Repeat them over and over to myself, so that I didn't get distracted from what I was doing.
"Pants on. Shoes on. Phone in pocket. Pants on. Shoes on. Phone in pocket. Pants on. Shoes on. Phone in pocket. Pants Shoes Phone Pants Shoes Phone Pants Shoes Phone PSP PSP PSP Pants Shoes Phone Pants" (pants put on) "Shoes on. Phone in pocket. Shoes on. Phone in pocket. Shoes on. Phone in pocket. SP SP SP SP S Shoes" (shoes put on) "Phone in pocket. Phone in pocket. Phone in pocket. Phone Phone Phone" (put phone in pocket.) STOP.
"What next?"
Then I'd decide, and start the process again with a new list of 3 things.
I can't even manage that anymore. I get lost before I can even get to the first thing on the list. Things like "Don't fall. Don't fall. Don't fall.", "breathe. breathe. breathe." and "focus on one spot. find the spot. find the spot. find the spot." take precedence.
I can't even remember the first sentence in this entry. I can remember back to explaining about the 3 things.
I can't remember the last 2 hours very clearly. It's only as clear as remembering a day from 2 months ago. Bits and pieces... flashes... and it's all... watching a movie. I'm watching myself doing things. My memories are "third person".
I have no clue whether or not "third person" is what I mean. The definition of it is buried somewhere in my mind... only slightly more accessible than when to use a semicolon. Is "semicolon" correct? Is it supposed to be two words? Two words with a hyphen?
Not doing well at all.
That's it! That's how I started this entry. ...and so I know that it's time to end it.
I'll (hopefully) be in bed.
Overdone
I was "done" hours ago.
I'm tired. All day, I've been, pretty much, typing with one eye closed. Doesn't really matter which one. The problem is "double vision". With one eye, I'm ok. With two... I see just that... two.
I'm not liking this at all. I can only hope it's the Cymbalta wearing off. I'm pretty sure that Neurodude said to give it a week.
Whatever... it's something (sort of) new for me. Back in 2004, I had a bout with Optic Neuritis which had me seeing two moons, but nothing like this. This is just fucking WRONG.
Off I go to my bed... to curl up with that which is only... sort of... in my head.
Bunny doesn't mind.
I can feel my heartbeat... in my eyes.
RavensWings was over. I was glad for the company.
Have my new meds. Got to pick up some KFC.
Got to vacuum the mess off the floor, because "they" really needed to install the smoke and carbon monoxide detectors, leaving little bits of wire all over my rug.
The shower's just going to have to wait. My brain is done for the day.
(mumbles)
My brain is done, period.
Probably reeking
No, you don't understand! I really, really, really NEED a shower. Despite the fact that my sense of smell is, well, very much compromised, due to the MS, I know that I need one. Unfortunately, "itching" is not something that has been compromised.
The fact that bathing, something I frequently did a couple of times a day, has become something I can only manage doing a couple of times a week? Not only does it depress me, but it truly scares me.
Think I'll just leave it at that.
Still turning the pages
I'm in a fairly decent mood. Most of the Cymbalta is out of my system, I suppose. I keep seeing the commercials for it on tv. So far, I haven't thrown anything at the screen, but I have certainly exercised my profanity muscles.
I think that I'm going to give it a while before I take any of the prescription drugs Neurodude ordered for me. Probably start with the blood pressure meds, as soon as I feel the need. They're supposed to target my tachycardia as well, and I know that's not related to anything external or behavioral. If that does me any good, I'll keep taking it. I'm not going to start the Elavil, which can cause tachycardia anyway, or so I've heard, until I feel I really need it. ...until I feel that it's either that or end up back at the ER.
I'm trying to sift through my memory banks... trying to predict the next time I'll hit crisis mode. Maybe it's silly... looking for patterns... but it's what I do. I want to say that there's usually one in July.
Yes, I have taken it into consideration that simply thinking it will happen will help to cause it to happen. ...that fear = stress = bringing it on yourself.
All I'm trying to do with figuring it out, is prepare myself. If I'm not prepared, I sometimes make some REALLY big mistakes. It's sort of like knowing a medication can cause side effects. On the one hand, thinking it might, might actually cause the side effect. (The brain really is an amazing organ.) On the other hand, if you don't know that the problem you're having is from a medication you're taking, you may well blame it on something, or someone else. Either way, it causes problems.
I've spent a lifetime studying and analyzing myself, and my life. I know myself. Invariably, it ends up that if I don't trust my gut immediately, I take the wrong road. If I trust other people's opinions, I screw myself. If I do things out of guilt, I screw myself. If I do things out of fear, I screw myself.
I have to trust my first... initial feeling.
Trade ya!
Apparently there is a physiological condition that is called having "orgasmic migraines". I couldn't help but chuckle a little, and managed an "I'll trade". (Poor Neurodude... talk about an educational Residency!)
So, I looked it up online the next day, wanting to know if I really would trade.
From what I can recall of the little bit I read... before, during, and after orgasm, some people have excruciating migraines, which are actually caused by the physical state of sexual arousal itself. This condition is called having Orgasmic Migraines
Yes, that would suck. Not a yin-yang I'd appreciate in my life at all. That said though, would I trade? Living with MS for living with "Orgasmic Migraines"?
Fuck yes.
If my only problem was getting a migraine during sex? Shit, I get migraines without any sort of relief, and for no good reason, and they can last for days.
I can only wish that it was the case that one of my biggest challenges in dealing with my disabling condition was learning how to say, "Tonight, honey. I want a headache!"
Orgasmic Migraines.
Puts a whole new twist on S&M.
Yeah... hurt me, baby!
THEY suck
So much for waiting on "them".
Fucking son of a bitch.
Thanks for the HAPPY fucking DAY!!!
grumble grumble
bitch bitch bitch
Pass the beer.
THEY make me crazy
There are many things in life which stress me out. Waiting on people is pretty high up there on the list.
Yesterday, as RavensWings was leaving, she handed me a paper that was tucked into the handle of my screen door. It informed me that today, between 8:30 AM and 3 PM, smoke detectors and carbon monoxide detectors were going to be installed. It was not clear exactly where they were going to be installed, but I have to assume they meant in every apartment.
So, it's don't fall asleep, don't get stuck on the can, don't stink like beer, don't start preparing food, and keep a pair of sweatpants on, despite the fact that the thermostat keeps hitting 80 degrees. Dog fucking forbid "they" should see your scarred calves. If I don't answer the door when "they" knock, "they" have keys, and "they" know how to use them. If I lock the screen door, and "they" can't get in, I'll have to go through this again.
"They" are unreliable. In the past I was informed that "they" were going to shut off the water, a day ahead of time, according to the note "they" left on my door. Really nice, being that "they" actually shut off the water a day before "they" left the note. Then there was the day that "they" were testing the smoke detectors. After a while of going nuts, I went outside and asked the neighbors what the deal was. "They didn't call you?" was what I got. Apparently, "they" called people (everyone but me, obviously) and told them that "they" would be testing them. I then ripped mine out of the ceiling.
Today, because "they" might have to do something in here, I had to adjust it so that it wasn't apparent that I'd ripped it out. Not a fun thing to do when you're dizzy.
I haven't taken the Cymbalta since yesterday morning. I feel much better, despite the small headache I have. That stuff is EVIL.
Anyway... Bunny is hiding, and Nessie is hanging out near the door. Harold is ok. He knows it's water day, so he's in a good mood.
I look forward to my new Blood Pressure medication. I'm pretty sure that I'm rapidly approaching need. I'll have it by Friday. This is a good thing.
figures
I just spent a good deal of time writing, but my computer ate it.
There seems to be a problem with it, but I'm hoping that it will just go away.
Maybe I'll manage to write later.
Nessie waved to Chairy
I feel pretty drained. Think that I'll most likely spend the majority of the night horizontal.
The appointment went pretty ok, I guess. I have 4 prescriptions to fill. He's switching me from Cymbalta to Elavil, and giving me a new Blood Pressure med to try. (I forget the name, but it starts with a "V") He also wrote me one for Lunesta and one for Ativan. As long as I can get through a few days with these meds, if I hit "danger flare" mode again, it'll carry me to an IVSM treatment. He really wanted me to do the IVSM now. Apparently, my MRIs made him bug out a bit. I told him, I want to wait on the IVSM until I'm at "I can't take it", like I was a few weeks back. Now, I'm able to keep going. No sense doing the IVSM when I'm doing even a little ok.
So, that's the plan. If I get bad again... MRI, then IVSM. The MRIs are important, in my case (according to Neurodude) because I'm a "rare case". Aside from the time I lost the sight in my right eye, I have no other REALLY concrete physical symptoms. (It's amazing what people can actually fake.) I'm all brain lesions, and most of my symptoms are things that he just has to take my word for. Things that mimic being drunk, drugged, or mentally ill. He can present the MRIs to the other docs, and justify his decisions concerning my treatment. "My word" isn't good enough in that arena. My physical exams have been pretty much "normal". Nothing that couldn't be faked. So, the MRIs are the only "evidence" he really has. I've got shit loads of lesions, and they're all smiling for the camera... so to speak.
I did get the feeling that he trusted me a little more. He was honest about things, and actually seemed even more concerned over the MRIs than I am/was.
There's more to tell, but I can't seem to keep going with all the details. The Cymbalta is still kicking my ass. My BP was 149/100. Neurodude is a Rum fan, and is going to be on vacation until the 5th... headed home... to Philly.
It was all I could do not to wrap myself around his leg.
Life can be so cruel.
Dudeday
So, today is my appointment with Neurodude. What I hope to get out of this appointment, I have no clue. I'll have even less of a clue by the time I get there. It's just par for the course. It's a quick drop. After I walk into the clinic, I hit "smart ass", then fall to just plain "asshole". I hate doctors, I hate forms, I hate being questioned, and I hate being anywhere I have to deal with anything stressful without smoking.
I'm thankful that RavensWings takes me to these appointments. It's not just that I couldn't get there without her. She helps with all the forms, and helps communicate to people what I want to say, and too, her being there helps to ground me a bit. I trust her. Even when I'm completely altered, and have no clue who she is, I know that she's a good person.
So... with any luck, things will go ok. I've been trying to jot things down as I think of them. I need to re-address the sleep issue. I need to get off the Cymbalta and have another medication lined up for when I need it for pain. Those are the priorities. While I'm at the hospital, I want to swing by "records" and get a copy of the Radiologist's report from my last MRI too.
Nessie mentioned wanting to say hello to Chairy, but I told her that we'll be pressed for time. She's sulking about it, so maybe I'll let her wave, but that's only if she doesn't try to go swimming again. A few weeks ago, she tried to go swimming in one of the many puddles, and RavensWings had to rescue her. Too, in the ER last month, she hid underneath the gurney rather than dealing with the asshole doctor appropriately. I forgive her for that though. She explained it to me... not wanting to have to take on the three cops, etc., etc. So, maybe waving hello to Chairy will be ok. As long as she doesn't try to go for a ride.
Wish me luck.
This is not fun
Along with the rest of the excruciating pains, my ears are ringing off the hook. Hurts pretty fucking badly.
As much as I don't want to, I may have to just stop taking this medication. Neurodude is frustrated with me... insists that I don't give meds enough time to work. Maybe, but in my book, if the side effects are worse than the symptom the drug is supposed to be treating, it makes no sense to keep taking the drug.
Fucking OUCH
McCranky's
Had a few beers. I feel tired, but I don't feel like going to sleep. Want to glue my eyeballs to the tv... watch House later on. Don't know why I like that show. In real life, getting a doctor that gives you more than a half hour of their time (10 minutes if they're a "specialist") happens about as often as finding hundred dollar bills in your shit.
I'm cranky. Yes. Not rageful though. No worries there. Beer or no, I'm still pretty numbed out.
RavensWings was over today. We went to the food store. We then attempted to stop by KFC/Taco Bell, but alas, we pulled up to the drive thru speaker and were greeted with a "We're closed." Not fair. We were both really wanting Kentucky Fried Taco Bells.
We ended up hitting McD's. Yay. Joy. Pass the Sodium... with a side of sweet and sour sauce.
It was good to see her though. I was grateful for her company. ...more than made up for the 5 fucking dollars I spent on a mother fucking can of Lysol spray at the fucking food store.
That'll teach me not to piss the bed.
through the haze
I feel... blank. It's not so much that I'm searching for words, but I'm searching for feeling... for intensity. Is this better than rage? I don't know. With intensity of feeling, it goes across the board. You don't get to pick and choose which emotions you want to have intensify. I don't know if it's worth the sacrifice.
Since I started this medication, I haven't flown into a rage, but gone too is my intense passion. I'm in more physical pain, so it's not working on that level. I suppose that the anti-depressant part is what's numbing me out emotionally.
I can't help but wonder... is this how "normal" people feel every day?
If it is, it breaks my heart... although it doesn't break it as intensely today. It's much more of a figure of speech.
If almost everyone feels like this, it's no wonder people don't understand me... that I scare them... overwhelm them.
Passion. That's what is missing. That's what the drug is suppressing.
I don't know that I can live this way.
Just some advice
You're minding your own business, and someone comes up to you. They seem to really like you. You enjoy their company. They enjoy yours. You want it to continue, so you start trying to do things to make sure they don't walk, like others have in the past.
All of a sudden, the person walks.
So, you try and try and try. You bend over backwards, trying to get the person back.
The person moves even further away from you.
You beat yourself up.
"What did I do?!!!???" "I must really be an awful person!"
You try and try and try to win them over, and beat and beat and beat yourself up.
A far cry from minding your own business, don't you think?
Well, that's what that other person sees.
You went from appreciating them, to needing them.
Do yourself a favor. Take care of yourself. There's no such thing as "winning someone over". You can't manipulate someone into loving you, and trying to manipulate them into not leaving may well push them out the door.
Look on the bright side!
Yeah... I'm trying. Most days though, being upset about what I can't do simply erases my ability to be thankful for what I can do. I suppose that makes me "bitter"... or "negative".
I suppose that I spend a lot of time feeling envious of other people... jealous of other people. Not all the time though. Yes, I've had one hell of a life, and I'm still dealing with more than my share of shit, but I'm well aware of the fact that other people have their own shit, and have come through their own personal hells. Often, "The grass is always greener on the other side of the fence." is pretty true.
It's always easy to put yourself in someone else's shoes and figure out what you would do. That's the whole thing though... it really has nothing to do with the shoes. It has to do with the person wearing them. We all have our own abilities and disabilities. We all have our own unique baggage and assets. ...strengths and weaknesses.
If my arm is rotting off, and you bitch about a paper cut, I might feel a bit angry... or negative, but that's only if you don't care that my arm is rotting off. If you do see that it is, then my heart will go out to you, because I know that that paper cut must really hurt. You have every right to say "OUCH!", if something hurts you. If I care about you, and you care about me, then I'll want to know if something is hurting you. That gives me the opportunity to show you that I do care. You just can't expect me to show you that I give a shit about your paper cut if when I say "OUCH!" all you usually do is judge me for complaining about my rotting arm.
In the past, I had a lot more time and energy... and ability, to actively care for other people... to take care of other people. Now? Just about everything I've got goes into taking care of myself, and as time goes by, I'm less and less able to even do that sufficiently. Yes, that makes me feel angry, and frustrated. I do get jealous. I do long for what I've lost. Does it mean that I don't care about other people though? No. I do care. I care too much, actually.
I think that it's pretty normal to push people away when one believes they are dying, or rapidly heading in that direction. We don't want to hurt the ones who care for us, so... simple solution, make them stop caring. Too, demonizing the ones we love only makes sense. It's much less painful that way. It's easy to leave hell.
Addiction. Sponsored by...
About a week and a half or so ago, I started on this drug called "Cymbalta". So far, it seems to be doing the opposite of what it's supposed to do. I'm in much more pain now, and feel pretty depressed much of the time. I'm also constantly nauseous and dizzy, and have the shakes.
It's one of those drugs that, from what Neurodude says, has to "build up in your system". The only way I hear that is "We're going to addict you to it."
If my pain level was a 5 when I started the drug, then it spikes to 8 while getting used to it, then after a while goes back down to a 5, I might be fooled into thinking that it's working. If I'm not, and decide to stop taking it, and the effects of doing that make the pain level spike to 9 or 10, then I end up desperate, and keep taking it just because I can't endure the pain.
Anyway you look at it, that's addiction.
Why the hell is it that most people, especially doctors, don't see it that way?
D'Oh!
I just realized that "Amber" is not who I thought she was. There was another "Amber" that had read and commented on my blog, a long time ago. She was really sweet. I thought that's who "Amber" was, and so I thought that maybe she was just flaring real hard... that maybe she was just going into her own version of what I refer to as "dickhead mode".
My mistake. oops.
Well, the extra hits didn't hurt, I suppose. I think though, that in the future, no matter who I think it might be, I'll just delete it if it pisses me off that much. I don't need the stress.
over and over and over
more of the same
So, back to our regularly scheduled bitch session.
Neurodude set me up with an appointment for next week. At this point, I don't know what to think, let alone do, and Neurodude seems to know less about MS than I do half the time.
I don't clearly know the difference between PPMS and PRMS, but I think that with PPMS the lesions never stop being active. They just keep on going until they burn through. With PRMS, it's like Christmas lights, one goes on then it goes off while another one comes on. It takes a while until the bulbs burn out. I'm sort of just guessing with this though.
All I know is that I'm always "active". There is no point in time where I have no active lesions, and I average about one new lesion a month.
They just put Tysabri back on the market, but I don't know what the Tysabri is supposed to do. I don't know what the IVIG is supposed to do either. There is no "time between flares" to extend really, as I'm always active and always getting new lesions. Most of the MS drugs and treatments are aimed at "extending time between flares", and they do seem to help some people with RRMS, according to the research. How they know it's the drug and not that it would've happened anyway is beyond me, but that's another tangent.
There are symptoms I just deal with, and symptoms I can't deal with. When the Insomnia lesion decides to activate, I'm good for nothing. The dizzy lesion? I can deal. Nessie, Bunny and I have a system worked out. There's a list of symptoms a mile long. There's always something wrong. As much as I complain about things, there's actually a whole hell of a lot more that I just shut up and deal with.
In 1994, I was declared legally disabled. I kept trying to work though, and even tried to go to school. The results were disastrous. By 1999, I was threatened by my Shrink that if I didn't stop trying to work, that she'd commit me.
From 1999 until 2004, I spent all my time trying to be as useful and productive as humanly possible, while learning how to survive with whatever the hell was wrong with me. Problem was, I just kept getting worse, no matter what I did.
In 2004, after someone finally looked at my brain, it was determined that I have MS, and that I've had MS for a long time. ...that it was entirely probable that I've had MS since 1983, which is when all my MS related problems started, according to my memory.
This is the deal though... I've been legally disabled since 1994. I've been unable to hold down any sort of job or function in any sort of "normal" way since 1999. It doesn't matter what disease or disorder was blamed for causing the problems I had when I was declared "disabled". The fact is, that I haven't been able to function well enough to even take care of myself for the last 13 years, and each year I'm worse than the last.
I'm supposed to get my hopes up over Tysabri? Endure days and days of IVIG glop being pumped into my veins, just to see if it will... what? Give me a month or so without thinking the tv is talking to me?
I really have no clue what to do... what I want to do... what I can do.
I hate that my life revolves around being sick.
on the up side
Just had to let a smile out...
This morning, my (old) friends Cecily and Charlie welcomed their daughter into the world.
Makes me smile BIG. They're going to make AWESOME parents and their daughter will be very much loved.
I like good news. Smiles are good. :)
and the winner is...
Just got off the phone with Neurodude.
The good news is that the one lesion that I thought looked like it was burning through, wasn't. It was just the way the contrast was enhancing it. Too, he agreed to wait on the IVIG thing until I meet with him, and he thinks that I might be able to do it outpatient, if I choose to do it.
The bad news is that my old lesions are alive and spewing... and I have 5 new ones. Not bad for 4 months. Do I get a prize?
Sometimes being right isn't the best thing in the world, I guess.
The power of Z
Got some sleep, which was nice. Had some annoying nightmares about the endless sea of comments though. Pretty sad when you dream about being online.
So, today is another day of waiting for Neurodude to call. I really need a shower. Maybe, if I can manage it, I'll be able to grab one around 5 or 6. There's just no way in hell I want to deal with missing the call, because if I do, I'll likely have to go another 4 days trying to get him on the phone. I hate waiting on people. Makes me crazy. One of those pesky little psych issues.
As crappy as I feel, in all honesty, I feel a trillion times better than I did a couple of weeks ago. Sleep is the key. Problem is, whatever part of the brain it is that handles the sleep, or the lack thereof... if that's the part that's doing the lesion dance, sleep just doesn't happen. It's just about riding it out, unless you get lucky and manage to find something that works. Alcohol used to help, in the past. I'd just drink until I passed out, but just like every other drug, I build up a tolerance very, very quickly. At this point, when I'm heavily flaring like that, it doesn't seem to matter how much I drink or which meds I take. There were a few times I drank obscene amounts of alcohol, and took every kind of medication I had which warned of "drowsiness", just trying to get to sleep, but although I blacked out, I still couldn't sleep.
Even if a person doesn't have MS, days and days without sleep will make them completely crazy. Sleep deprivation is no joke.
Out of all the symptoms of my MS, it is at the top of the list of the ones which have disabled me. Even while I'm not flaring, my sleep patterns aren't normal. My guess is that whatever part of the brain it is, is just damaged already, and when that part flares, I hit complete Insomnia mode. I've lived most of my life waking up half a dozen times a "night". I can deal with that. I don't love it, but I can live with it. Not sleeping at all? No can do.
This last one nearly killed me, to say nothing of what is now permanently on my hospital and police records. I don't want to have to go through it again.
Hopefully, there will be some way to get this across to Neurodude. He's the one who is supposed to be helping me treat my MS symptoms. The sleep problems are part of my MS. I don't know why there should be a problem.
Maybe I can agree to consult with a sleep specialist, but refuse the sleep study. Maybe Neurodude would be satisfied with that. I don't know. Could happen.
more than enough
I'm tired. I'm really tired. I need to be in bed.
Not that the whole comment drama isn't entertaining, I just don't need any more of it. I've been afraid to even take a piss all day because I'm waiting for the phone to ring... waiting for Neurodude to call me back. (I called at 9 this morning.)
If you want to say something derogatory, go for it. I'll delete it next time I can sit up straight and deal. I'm tired, and I'm in pain.
Bunny doesn't piss me off.
enough
I'll end this right here.
This is my blog. It serves a purpose, for me and for others. It is something positive. It has helped keep me alive, and as well has made a difference in the lives of quite a few other people.
In the future, if you have shit to hurl, get yourself your own blog and do it there. Don't come into my house and piss on the rug.
In the past, I have done the same thing. When my brain sends me into dickhead mode, I often lose the ability to hang onto the difference between right and wrong, and as well, the difference between friend and enemy. I've pissed on a few carpets, for which I am sorry. When I realize what I did, I do my best to apologize, and just hope for the person's forgiveness. It's all I can do. It's something I have to deal with. With my MS, it's just par for the course. I do the best I can to manage the symptom.
Now, the shoe is on my foot, and it's up to me how I want to handle people coming in here and hurling shit at me. Whether they have MS or not doesn't matter much to me. Shit is shit. If someone apologizes to me later, and they really do feel sorry about what they wrote, that's great. I'm a pretty forgiving person actually, contrary to what some people may think, however... if they continue to come onto my blog and hurl shit, I'll have to request they be banned from coming here.
From here on out, if I find what you say to be disrespectful, it will be deleted. I'm not going to explain why. I'm not going to take an entire day attempting to justify my feelings or actions. If you have already judged me, it makes no sense worrying about how you'll see me if I delete your comment.
If my blog bothers you, don't read it.
shouldn't have
I'm in pain. I'm dizzy. My eyes and ears are fucked up. I've got the shakes. As a gift for forgetting, for 3 hours, to take my Cymbalta last night, I received an eight hour migraine which has only just now started to subside. (Good to know that I'm officially hooked on it.)
On top of that, I'm pissed off because of having to deal, for the billionth time, with comments that may as well be coming from my fucking selfish bitch of a mother.
It's on me. I should have just deleted it, but because it was sugar coated, I attempted to just be nice about it, despite the fact that it poked into territory I've repeatedly asked people not to poke into, and which I've covered, explanation-wise, too many times to count.
Now, I'm going to go be self indulgent and create more MS lesions from the cup of wine that I'm going to drink, because I know that's what causes MS lesions, and all the problems and pain that comes along with them. I just really like feeling this way. I couldn't bear it if all of a sudden I was to actually feel happy and healthy. Life would just so completely suck if I didn't have MS. I simply would not know what to do with myself. After all, I'm not that smart, and have absolutely no talent at anything. I do so love having no human contact, and not having any respect in society because of not working. It makes me just kick back and smile.
When I was little, what I really wanted was to grow up to live in a housing project, suffering from an incurable, torturous disease. Yes, indeedily doodily! I did this to myself, and I'm loving every minute of it!
About that laundry...
I've been in bed since I last posted. Mostly sleeping, which I'm thankful for. It's been like that with me forever it seems though... feast or famine. I suppose, all the way around, I am a person of extremes.
So, yeah, the MRI...
I thought it was MRI number 5, but then realized that technically, you have to count the t-spines and the c-spines separately. So, it's 5 of the brain, 2 c-spines, and 2 t-spines. I believe 6 sessions in the tube in total. That is, including the first MRI in November of 2004.
So, it's documented. I'm always active. I do not have RRMS.
I know myself. I know my body, including my brain. I know when something is wrong. Yes, I do indeed have MS. It's just of the "Progressive" variety. Undocumented is my life experience... what I know, what I can remember. There are no MRIs or other tests for MS prior to November of 2004, when I was first diagnosed with MS, and I had no need or desire to suspect that I had it. I was dubbed "mentally ill" in the mid 80's, and that label took precedence over everything else that I said, or was told. All the physical symptoms were either written off by people in the medical profession, the psych profession, or myself. I was just "different". I was just "bad". I was just an "alien". I was just "another species". I was just "more evolved". I was just "a drunk". I was just "a drug addict". I was just "a psycho". I was just "evil". I was just "mentally ill".
So, am I "mentally ill"? I suppose that it depends on your definition. Despite all the therapy and self analysis, I still do suffer from the effects of a traumatic childhood, and young adulthood. I have "problems", yes, but who doesn't? Do I have "PTSD" or "DID", as diagnosed in 1994? Perhaps, but I can say, without a doubt, that is not what makes me "disabled". In fact, what I learned how to do... dissociating... I think that's actually what kept me alive... kept me "abled" for so long. What disables me... what cripples me... handicaps me... that is MS. ...and it is destroying me. I know myself. I know my life. I know my abilities. I know what they were, and what they are now... and from what I've been told, MRIs don't lie.
see spot stay
I actually wrote out a post, but tblog ate it when I attempted to post it.
The MRI images look really bad.
Here are a couple of amusing shots. A couple of the lesions are just so perfectly round, they're almost funny... in a sick sort of way.
I'll be in bed, trying not to mope too much.
MRI number 9
Pain works fine as an alarm clock, I guess.
My MRI is scheduled for 7am. I'm supposed to be there at 6:30. RavensWings, the SAINT that she is, will be here to pick me up about 6 or 6:15.
I'm still tired, despite the fact that I did actually get some sleep. This is a good thing though. Maybe I'll be able to nap while they're shooting the pictures, and no tranquilizer necessary!
Whatever the results of this MRI, I really need to schedule an actual face to face appointment with Neurodude before doing anything else drastic like the IVIG he spoke of. To my knowledge, it has been firmly established that my MS is of the Progressive variety. That means that there are no treatments or medications that have been proven to do a damn bit of good, in so far as bringing the lesions to a dormant state is concerned. You do the best you can to treat the symptoms, and wait for it to gobble up your brain. Every medication out there, and every treatment, is a crap shoot, when it comes to the Progressive varieties of MS. So, in my opinion, I have to weigh the odds. Is risking not being able to pull through th e almost certain damage of the treatment (or repeated treatments, in the case of IVIG) worth it, for the small chance in hell that it might work for a while?
Right now, all I want is better treatment of my symptoms. Sleep meds that work, for starters. The hell of hospital stays and IV chemicals... I really think that'll push me over the edge. I don't want to end up locked up... and many days, I don't want to end up dead either.
creepy
I think that I slept for a couple of hours, but I've been up since 2AM, unable to get back there. Started obsessing about the bills, and so I had to just get up and start working on them. Then there was the show on the Science Channel about the whales and the polar bears and the penguins (oh my!), so that kept me up until just now when it shifted to the deep deep underwater fish-like creature part, which I had no desire to see. Those things are just CREEPY.
Speaking of creepy, I watched White Noise yesterday. Ok, now that was a creepy ass mother fucking movie. Took my MS infested brain for quite a spin too. A lot of stuff that makes you jump. I knew that before watching it though, so I did ok. No seizures. Creepy creepy though, in the middle of watching it there was this WAY loud thunder and lightning storm. By the time I finished watching the film, I had to seriously re-ground myself.
My brain is a bit off. I can feel it. The lesions are active. Reality twists and turns, pulling me from one side to the other... it's all true, nothing is true... it's all real, nothing is real... the tv is talking to you, it's just a coincidence.
Fun stuff.
and God said to me
It's not for you to interpret the message.
It is only for you to deliver it.
Stuck on repeat.
I, sort of, feel like I'm forcing myself to write. It's not that there aren't thoughts in there that want to be let out, it's just that many of them are just thoughts which seem to be stuck on "repeat". Being in pain sucks. I hate my family, even the ones who claim not to hate me, except for my little brother. They're all abusive and selfish people, my brother aside... and his father's family aside. I need to be able to sleep, and meds don't work. I wish that there were somewhere I could get to where I could be around other freeky people. I don't want to go into the hospital, but yet I'm afraid to "not cooperate with treatment", even though I know that the "treatment" won't do me any good, but that the hospital stay will make me 100 times worse. I wish I wasn't so poor. I wish that my brain wasn't so broken. I wish that I could un-hurt my friends. I wish that I could un-embarrass myself. I wish that I could figure out, definitively, whether or not life is even worth living anymore.
