Rants and Musings

I suppose that the way I deal with tblog is a pretty accurate reflection of the way I deal with life in general. I bitch, I whine, I moan, I complain, but (generally speaking) I don't quit.

Sometimes I just need to vent. Whether it's about tblog's failings or the fact that a brain lesion is making me blind, I just need to get through the psych crap so that I can better handle the more tangible reality.

Am I really mad at tblog? Not really. I'm more frustrated because I cannot easily handle what I need to do in order to make my life more fulfilling. Tblog didn't make me sick, nor did it choose to be the center of my life.

...just sayin'.

There's no way in hell I can go through my entire blog to check and fix the formatting right now.

Tblog is obviously fucking with something... nothing I can really manage to do about it but mope though.

I really have no clue why I'm still here at this point.

Just because I wrote it, doesn't mean I know what it's about.

- Lou Reed

ok, for the record... My understanding of MRI pictures is rather limited. I probably know a little more than the average person, but I'm no expert.

From what I know, white = bad, generally speaking. Too, generally speaking, although the circular white patches you see in the pictures are supposedly  drips of spooge seeping out of my lesions, if it's glowing white, it's very possibly indicative of an "enhancing lesion". ("Enhancing" supposedly means that there has been a breakdown of the blood brain barrier.) In the case of the contrast images, if it glows, it means that some of the contrast material got into the brain tissue.  Yay. Joy. Fun.(Don't worry, I have no clue what the hell any of this paragraph really means either.)

So, "Contrast" is used to reveal new, active lesions. It's injected into your vein while you're being imaged and then circulates throughout your body with your blood, miraculously causing the the new lesions to light up on the pictures which are taken. How it reveals only the new lesions and not the others in the contrast image series, I have no fucking idea (but I'm working on learning about it). What I was told to follow as a general rule, was that basically the lesions which light up in the contrast series pictures are lesions which got there within the last few months before the images were captured.

Another thing to know about MRI pictures is that they are NOT like X-Ray films. Each MRI image is a "slice". You won't see the whole brain, for example, but only a select, opaque "plane" of it.

All that said, SirThinksalot would like me to show you just what he can do to fuck up my life.

I'm pretty sure that this is the lesion which is responsible for my recent blindness. The contrast made it smile for the camera.

(I added a couple of new non-contrast images  to SirThinksalot's page too. Just click on the MRI Images link to the right, if you want to see the mess.)

4/1/07

Upon my sight improving, I was able to look more closely at my images. I'm not 100% sure, but this might be the culprit, as opposed to the other one. It's tough for me to tell whether or not that's actually a lesion, but it sure looks like one.

oh yeah, I also wanted to mention that MRI images are reversed. The actual left is the right on the image.

Yesterday, thanks to the help of my brother, RavensWings, and her brother, I was able to become a little more hopeful about the months ahead. The A/C is now in the window. 

I am very, very lucky. Without the help of such people, I would never have made it even this far. I thank their Gods for allowing them both the desire and the ability to help me to survive. I feel truly blessed.

Solu-Medrol does not stop the activity of the lesions, it reduces swelling, or it's supposed to. The activity is all up to SirThinksalot. Basically, my lesions stop being active when they damn well feel like it, and they don't work on similar schedules to one another. This leaves my MS always active, even though one or the other of my bazillion lesions take naps at different times, for different lengths of time. I am never actually in "remission" like 85% of the rest of the people with Multiple Sclerosis often are. Fuckin' hooray for me.

My lesions seem to work like Christmas tree lights. One goes on just when another one goes off, and I get at least half a dozen new bulbs a year. How debilitating they are depends on the strength, size and location of the lesion. Depending on where the lesion is located, it can make me lose my vision, my ability to walk, or my ability to control my temper. Anything (which is EVERYTHING!) the brain is responsible for handling can be affected by a lesion, if it is located on the part of the brain which is used to handle that task or thought or feeling... I may be blind, or I may not know my own brother. I may not be able to walk, or I may think that the TV is speaking to me in code. I may feel like I have bugs under my skin, or I may not understand language. THIS is what MS does to me.

The only difference is that when my sight goes, people throw flowers and want to hug me, but when my temper goes, people throw bricks and want to lock me up.

If you go back to the beginning of my blog, even before I had the MS initials (because no one one ever ruled out MS or even bothered to MRI my brain, despite my numerous physical symptoms, because they prejudged me based on my non-traditional appearance) and I only had the diagnosed P TSD, DID (or "Multiple Personalities"), and Intersexed labels to offer people, I did try to explain my reality. That reality has not changed except for to become even more difficult because of the progression of the MS and because of a few more Psychologically traumatizing events in my life which had little to nothing to do with my MS or its progression.

Either the lesions will burn through and I will end up permanently blind, or they will resolve for a while, and I'll be able to keep blogging, treating y'all to whatever the fuck May (or the usual negative peak of my Hot Season) has in store for me this year.

I can only hope that you will all be as kind and understanding to me, if and when that happens, as you have been to me throughout this event in SirThinksalot's Lesion Olympic trials.

...and that in all of this, something can be said for whether or not there is a such thing as a SOUL. (There. There's something to chew on for a while.)

3/21/07 8am

Today begins my fifth solu-medrol treatment since December of 2004. It is also the second anniversary of my hospital stay, but that is neither here nor there.

I'm doing worse, not better than I was doing then. ...whichever "then" you choose.

...but I am older and wiser, thank Scooby.

1:18 PM

A few veins blown, but 1 gram in. Vision still fucked.

At least I can smoke.

It seems that the more time I spend in the dark with my eyes closed, the more kinda-sorta-see time I get.

I'm going to try not to think about the metaphorical aspects of all of this. At least, not with my eyes open.

On a scale of 1 to 10, 10 being the best vision and 1 being completely and totally blind, I've been at about a 2 or 3 for at least a week now. The 3 comes in brief periods throughout the day, and when it does, I try to do as much as I can. Things like preparing food always have to come first though.

This morning I am using much of my 3 time writing and posting this. The bulk of the 3 time was already spent doing the (seemingly) impossible.

Injecting 200mg of Testosterone, an inch and a half into my thigh.

Giving yourself a shot while legally blind and with your eyes closed for the majority of the duration of the process?

Screw "priceless". THAT, my friends, takes BALLS.

p.s. - Today is Nessie's birthday! (She was sulking because I didn't mention it.)

Happy Birthday to the world's BEST cane! Much love to you, many thanks for your two years of helping me to navigate the straight and narrow, and many, many thanks for allowing me to toss out just a hint of attitude while doing so.

Rock on with your bad self!!!

I am hoping very much to be able to return to writing and reading in the future, but even this much is nearly impossible for me to do as of now. (For starters, I can only read one word at a time, one letter at a time, backwards.)

SirThinksalot shot himself in the foot with this one.

You'll see his photos if and when I can.

Hey, better to have a lesion or 3 along the visual pathway than on the brain stem, I suppose.

I hope that you all are well.

Thus ending the so-called "MS Awareness" week - March 5-11, 2007. They did such a good job making people aware that I didn't even know it was MS Awareness week.

I'm VERY FUCKING AWARE of my MS right now, and VERY FUCKING AWARE that I cannot do anything to cure this fucking disease, and VERY FUCKING AWARE that the people with money DO NOT WANT to cure this fucking disease because they're making making WAY TOO MUCH MONEY off of "treating" those of us with the disease.

The one thing I'm NOT VERY FUCKING AWARE of is whether or not I will ever be able to actually see this fucking post in the future. Although, I AM VERY FUCKING AWARE that I can hardly see what I am typing right now.

All that said...

If you don't have shit loads of money to give to scientists to help them to find a cure for this disease, just be kind to someone with MS, despite what you may have initially felt about the person. Many of us have no good measure of control when our brains are being eaten away by this fucking disease. Perhaps you can give the gift of being VERY FUCKING AWARE of this before writing us off as horrible people.

This took me about three hours in total, over two days and in four separate sittings at the computer, just to write. At this point, I'm past done straining my brain and eyes, and so I've decided to just post the thing. I'm VERY FUCKING AWARE of this fact as, in the past, I could have done it all, tblog willing, in about 10 minutes.

That's about a 9 on MY fucking pain scale, asshole.

Because the part of my "visual field" which is being affected is the top, left part, and the English is a language which is both written and read from left to right and top to bottom, I'm pretty damn screwed right now. ...and it's only getting worse.

I'll be online, trying to read and trying to write, as often as I can.

If the worst happens, I will ask "RavensWings" to post something on her blog. Just follow the links on the right to the list of "blogs I read" in order to find that.

Already, I am missing this aspect of the "ether"... this aspect of my life. I am missing all of you.

I hope that only the kindest of my thoughts ever reach any of you.

with love,

-Cutter

MS

It used to mean something completely motherfucking different... but it meant something completely motherfucking the same.

I can barely see. I want to write about the day, but I can barely see. There were some funny moments, but at this moment, I can't get there from here.

This will take some time to type out.

Thanks to RavensWings, I scored an appointment with Neurodude today. The short of it is... it's not Optic Neuritis. According to Neurodude, what it is, is a BIG OL' HONKIN' LESION on the back-right part of my brain.

woohoo?

SirThinksalot's photo shoot is now scheduled for Tuesday night. Yeah. This would be that "AAAAAAAAACK!!!!!! " MRI I alluded to in a previous comment reply.

I read the eye chart for them. I wiped off my shtuff and peed in a cup for them.They took some of my blood.

I might end up doing a three day course of Solu-Medrol, just so they can say I did, but it has not been proven to do anyone with anything similar any good, really.

This is probably it, folks. What I see is what you get.

I regret that I cannot see more.

Wow! That was fun! I got to use what little vision I do have to keep checking to see whether or not tblog was up.

Nessie wanted to go shoe shopping because her birthday is coming up. (What is it with me and ladies who over-dig shoes?!?) Wasted some vision time on that this morning. I think that she found what she wanted. It's like the original style she was wearing, and I do actually like the style, so that's a good thing. It's just more durable and steady than what she's wearing now. (Leave it to me to be practical.)

Anyway... I'm still here. Can't see for shit, but I'm still here.

Thanks to all of you who have stopped by and let me know that you're thinking of me. Even if I don't reply to your comments, I'm reading them (as best I can!), and smiling at your warm thoughts.

On the vision front, it's worse. It sucks.

I can still see, but it's sort of like right after a flash bulb goes off in your face.

I'm getting tired... the ups and downs... the teases... all of it.

I'm just tired.

So, I get up about two in the morning, and realize that my eye actually seems a little better. Of course! Just in time for me to call and ask for help!

I went back to bed and hoped that when I woke up again, it'd still be better. Playing phone tag with the Neurofucks was not something I was looking forward to.

This morning, it still seemed like it was a little better than yesterday. So, being that the office wasn't open yet, I figured I'd try getting online.

After a couple hours online and a phone conversation with RavensWings, I'm back to where I was yesterday with it.

Joy.

My conclusions?

Stay the fuck offline and get as much sleep as much as you can. Maybe this is possible to ride out if you do that. You might be bored to death, but that's better than worrying the fuck out of people, going blind, being all but tortured, getting sick from crap being pumped into your veins and ending up trapped in a hospital.

It's the Spring, you jackass!!!  You know it's the Spring!!!