...but
a good Samhain to all, my kind or no, and with all due respect.
This isn't Salem.
Yeah, well... we interupt this spiritual moment for a fucking reality check.
It's more chemicals into the veins for me. There was a new, dancing lesion on the "oops!" MRI, even though the spinal lesion wasn't dancing too hard. Fun stuff.
There's never enough beer.
Samhain 2007
It's that time of year again... time to remember those passed. In my little world though, it's also time to... I dunno... realize that with each passing day I'm one day closer to knowing, or feeling, or experiencing what they are now privilege to.
I'm not rushing it, but I can't help but wonder. None of us really can. Shoot, we sure did come up with some elaborate theories on the subject. None of us really know for sure though. None of us but those who have passed.
I don't care much for the candy or costumes. Samhain is about "the spirit" and about questioning... pondering. It's about remembering and appreciating. It's about recognizing that despite the fact that I don't have all the answers, I somehow managed to make it through another year.
...but I do hope that y'all enjoy your candy and costumes.
Slow Burn
It gets frustrating sometimes, because I can't find the words to capture just what is actually pouring from my entire SELF.
My body is killing me! I'm killing me!!! ...and I'm not even doing it nice and swift. It's slow, brutal, and torturous.
...and you want me to really give a flying FUCK about global fucking warming???!!!???
FUCK YOU, and your stupid fucking GODS TOO!!!!!!
Crawling South
10/28 9am
I have a few hours to kill until I have to go to my MRI session.
It's not been the best of mornings, nor though has it been the worst. Currently, I'm riding through some "bonitis". It's my right foot this morning. For the past week, the MS monster, aka "SirThinksalot" aka "The alien in my brain." has been, apparently, deciding that I should feel like I've been beaten in random places about my body with a lead pipe. I suppose that he's bored with just making me feel like I'm plugged into an electrical outlet. Pesky little alien. Then, I guess that I should just be glad that he hasn't done anything more to further mess with my ability to walk ...or to write.
9:50am
...or to play Minesweeper? Fucking shit. There are only so many games people should be attempting to play of this game. It's evil. ...and I wish the damn board was bigger. I can barely see it.
10:33am
I should have a beer. I'm already getting riled. Yeah, I've got a leg full of testosterone, and I know how to use it.
11:25am
The day is dragging ...and I have a fucking headache.
12:19pm
I'm hungry, but scared to eat. Everything is so loaded with salt. The price you pay for being sick, poor and unable to cook for yourself anymore is that food becomes potentially lethal. ...and oh, yeah, for being too young. If I were a "senior" I'd qualify for "meals on wheels". I'm too young though, so, fuck me. (and say that you didn't.)
12:44pm
It's just too fucking much. I can't do this without problems. I know this, but I had no fucking choice. Even going to the damn grocery store takes reserving 3 days. Two MRI's? I'm going to be WAY taxed from this. I already am.
Samhain approaches ...and I'm still here. I'm not sure why. Please leave a message at whatever damn tone you need to leave it at.
1:47pm
GRAAAAAAAH!!!! I WANT TO WEAR MY PANTS!!!
Damn MRI machines, Gotta wear pants with no metal.
Whatever. Give me a damn blanket and STOP STARING AT MY CROTCH!!!
I hope that I can doze off... listening to Stevie... pretending that ....that ...that ...I dunno. Pretending that someone really knows what I'm going through.
10.28.07 (5:54 pm)
It's you and me against the world ...and Bunny, I think we're getting creamed.
"OrphanEdge" to the death.
Well, MRI #13 was the "MRI that wasn't." They screwed up and did the wrong shots. oops.
It's all good. I'll go back, and they'll get the right ones. It sucks that "RavensWings" had to (basically) waste a morning though. It was tough enough for her to help me out today, now she has to manage to help me out again this week? Above and beyond the food store and today's excursion!?
No, she doesn't mind, or so she says, but I DO!!!!!
I wish that we could just hang out as friends.
"Need" really clouds the definition of "friendship."
Not Spineless
It was 37 degrees this morning. That made me smile. I like the cold. There's often a lot to be said for the little things in life.
I'm sort of half assedly trying not to think too hard on what's going on with me. My body quickly reminds me of it though, if I manage to push things to the back of my mind for too long.
I'm hoping that I won't have any examples of what MS spinal lesions look like to share with y'all anytime soon. Nothing personal, but I'm just not wanting to do this next course in Radiology.
It's been my hope for a while now, that the MS just stayed the hell away from my brain stem. I dunno. Maybe it's just running out of white matter to beat up, so it decided to head South. Maybe SirThinksalot is tired of me ignoring his warnings and pushing myself too hard. Maybe it's just the reality of MS. No part of the central nervous system is safe.
There's a lot of spinal cord to attack. Maybe it'll be content with that and continue to stay away from the brain stem. Even that's not too pleasant a thought though. In fact, it's always been one of my worst nightmares; to live life trapped in my own head, unable to truly live, unable to protect or defend myself ...unable to move.
2B is as 2B does.
So, Ms. Ellen finally called me back. She wants me to reduce the amount of Vitamin D I started taking from 2,000 to 800. (Once I use the pills I have, I will. I can't afford to waste money like that.)
...and I have a Cutter-spine date with tubey coming up.
...and then maybe yet another course of I-refuse-to-admit-this-is -chemo, depending on those results.
That's the short of it.
The long of it will just be left for another day. I don't feel so good.
The man in the box.
I can't help but wonder if the desire to start fresh isn't often what's behind committing suicide. ...and in that same vein, the regret of having left what really mattered to you behind what truly is at the root of reincarnation, if there is such a thing.
The weather will change soon, thankfully, as just yesterday it nearly hit 80 degrees. I can feel it though. My whole body, brain included, can feel it.
The hyper-depression kicks into gear, and the thoughts wander to more morbid places than they did on many yesterdays.
Rebel Without A Cure
Yes, of course my wanting MS cured is mostly selfish, that goes without saying, but my wanting my MS cured is only partly about wanting the hell of the disease gone from my life. The other part is curiosity.
I really do wonder what I'd be like without this disease affecting me ...my personality (or personalities), my energy level, my sex drive, my memory, everything which is currently often dictated by the whims of the MS monster ...which has been dictated by the MS monster for about the last 24 years.
I wonder just how responsible the MS monster actually is.
I wonder where I begin and end.
I wonder if all that I think myself to be is, in actuality, nothing but a bunch of MS symptoms.
Where does my lesioned brain end and my true self begin?
It's got me!
I just read that Teri Garr is not doing well at all.
I just hope that the media covers this with the same vigor as it covered her, "I have MS, but it doesn't have me! You just have to have a positive attitude!" stuff.
Now, MS has you, Teri. Welcome aboard! Now... let's rock this damn boat until someone cures this fucking disease!!!
Montel, maybe you could show the country a bit more of the REAL face of MS?
C'mon! You Star-types who have money, ability, and help can at least try to get people to understand that this isn't just tingly fingers and a negative attitude!
rant over
I can talk to me.
I do spend a lot of time talking to myself ...selves ...whatever. It's a way of sorting things out ...a way of keeping myself company ...of passing the time. I'm just more able to do that than to write now. It's something, so I'm not knocking it too hard, but I miss being able to write the way I used to be able to write.
Then... maybe what I really miss is the ability to read back on my conversations.
One of these brains...
For those of you who are interested, I just added in an image to my MRI page to better illustrate the MS lesions on the rest of the images on the page. Both images in the "comparison" pic are of the "T2 Flair, without contrast" variety.
I know that it's not always evident to other people just what I'm freaking out over when I'm talking about my MRI pics because there's nothing there to compare mine to, so I just thought I'd try to... yeah... illustrate things a bit.
For the record, I did not graphically doctor either brain image. They're straight from hospital/MRI center provided disks. I just put them side by side and added in the text.
I can lie to myself.
I'm bored.
It just crossed my mind to write that over and over again for a few hours, just to keep myself busy.
If I could ...if today was one of those days in my past, I'd go out. Maybe I'd go for a walk. Maybe I'd go to a coffee shop. Maybe I'd go to work or school. Anything but stay in the apartment feeling sorry for myself, waiting for life ...or death to happen to me.
...memories drift in and out of the center of my attention, my past teasing me, yet also reminding me that there never really was a time when I wasn't in some sort of pain. I used to be able to be a lot more productive in spite of it though. ...used to be.
Until about 10 years ago, I didn't even really keep alcohol in my home. There was no need, and no desire. I went out to drink, if I wanted to. I miss having that as an option. I used to really enjoy having the ability to go out. Now, I just miss it a lot.
I miss a lot of things. It sucks, but I guess that it's not too bad of a thing really. At least there were enough good things in my life once to miss now. ...and at least I still have my memories.
2.3%
That's this year's "cost of living" increase.
I think that I'll just speak for everyone in America who is surviving off of their Social Security benefits today.
One big ol' FUCK YOU goes out to whoever is responsible for determining just what constitutes the "cost of living".
Another day, another ZZZZzzzzzzzzt.
Yeah... another day, another.... "Yeesh! What the FUCK???!"
This whole "L'Hermitte's" thing is freaky. It's not painful, at least it's not painful for me right now, but it really is pretty freaky. It's sort of like having a cell phone on vibrate in your back pocket. Put your chin down and the phone "rings".
It does make me feel a little sad though... tougher to pretend like I don't have MS. The "L'Hermitte's sign" thing is rather common with MS, but common or not, it's freaky. ...makes you very aware of your spinal cord.
I never did like roller coasters.
I've been up for quite a while, dicking around online, reading, trying to work on a few things. The MS is kicking my butt though ...or maybe it's just that I'm freaking myself out about my current symptoms. It's tough to keep things in any sort of a healthy perspective when the organ which is responsible for doing that is malfunctioning.
I just keep coming too close to panicking. Logically I know that nothing can be done for me, aside from another round of let's-pretend-this-isn't- chemo, but some of these symptoms are so disturbing that my instinct is to call the doctor. Right, as if I could actually get her on the phone. Two weeks ago I called and they said that she'd return my call. Yeah. oops. Guess I'll try her again today?
I'm thinking that they should have tossed in a C-Spine at my last meeting with tubey. A lot of the new symptoms I'm having lately seem to be spinal in their origin. Again though, I don't know what difference it makes. Even if they see spinal lesions there's nothing they can really do. It's MS. I'm simply Mega-Screwed.
The bottom line is that I just have to somehow ride this coaster until the ride is over.
Speaking of TV...
StarWars (Episode II) is on, to be followed by... Brokeback Mountain.
I'm gonna have to say it...
I fuckin' love HBO.
just a pompous rant
I figure I can either sit and talk to myself, or write. There's really not that much of a difference. I just don't want to be in bed staring at the tv. I did some of that earlier, and didn't get much out of it. I more like watching tv when it triggers thought, not when it pisses me off ...not when I have to suffer round after round of ignorant people saying ignorant things while thinking themselves to be pretty damn enlightened compared to everyone else.
Yeah, the bell curve. Whatever. Where's the programming for the rest of us? Where's the programming for those of us who took learning and personal growth seriously from day one and are now more than a week old? ...and is there anywhere where the acting stops? Where "reality tv" actually is reality on tv? Shit, the closest I can find is the damn Weather Channel, and even that's now getting more and more scripted-drama heavy.
I'm losing patience. I used to be ok just reading between the lines... finding the truth by picking things apart and analyzing them. Lately though, I'm tired of having to spend that much energy in order to get something to chew on. There's just way too much to have to spit out.
I remember being a young Cutterlet and really enjoying The Electric Company. These days, I think that a retro episode of it would intellectually challenge the average American. (I won't even attempt to explain what might happen if that American were to actually attempt to think on the concepts offered up in a retro episode of Sesame Street.)
The radio star was not the only person who went down because of video. Everyone else who had a desire to use their imagination and to actually think lost out too. The best videos I ever saw were the ones in my own head; the best music from an earplug attached to a transistor radio.
At this point, I'm convinced that one day I will most likely accidentally stumble across the meaning of life while in the shower, not while taking in any information from any external source. (I'll probably crack my head on the tub and die after that, but that's neither here nor there.)
...and that's all I have to say about that.
And the rain was there
Just spoke with my new (two doors down) neighbor. I met her as I was checking my mail. She's very friendly, used to be an English teacher actually. It was a nice conversation, but it was a little painful. I can't really stand for too long. I tried to not look too distressed though. That'd be a bit rude, I think.
Yesterday, while going to check the mail, I saw a woman and asked her if she'd just moved in, thinking that it was the new neighbor. (The former tenant passed away recently and I'd noticed that the apartment looked occupied.) Turns out it was my next door neighbor. Sort of tells you a bit about how often I leave my apartment, or how often I come in contact with my neighbors.
I often wonder who lived here before me... whether or not they died in here. It's not too far of a stretch. The people who live here are either sick or elderly.
I often want to carve my name into something permanent in my apartment... some place where I can just write, "I once was here."
I dunno, with my energy, I think that the next tenant will know ...somehow. My guess is that my energy signature, if there is such a thing, is rather... ummm... strong?
You may have loved me, or you may have hated me, but you sure as shit will remember me.
The crucifix and the razor blade.
There's a lot which I feel like writing about, but a lot of it seems to not want to settle into sentences. I'm thinking about time passing, and friends, and life... the nature of it. I've said that if I walked out my door and it was the parking lot from an apartment complex I lived in a decade or two ago, that it wouldn't surprise me in the least. That's the truth of it. Reality, when it comes to the material world, is ...transient. Truth too is transient.
Love, I think, is one of the few aspects of life which isn't transient in the least. True love is forever (and that's a mighty long time.)
I spoke with an old friend last night, on the phone. We hadn't spoken in over a decade.
...damn was I ever smiling.
I may have had some shit luck in life, but when it came to friends, I was always blessed.
...and that makes the whole thing worth the trouble.
This is progress?
Discussing lab results with your Neurologist should not entail waiting two and a half weeks and using up your cell minutes on hold with the Neurology department's "answering service".
It's enough to give you a fucking ANEURYSM!
Pain D crease.
Well, three days into my self inflicted mega-Vitamin D program and I can honestly say that I'm in considerably less pain. I'm still having some other MS related problems, but a reduction in the pain level is more than greatly appreciated. Whether it's really from the Vitamin D or not, I don't know. I don't much care either. I'll keep taking it as long as my pain level stays at a more tolerable level of "MS sucks". The heat seems to be dying down a bit too. It's more towards where it should be at this time of year. Maybe that has something to do with the reduced pain level. Again though, I don't much care. I'll take what I can get in the way of help. November's coming. Gotta be one step ahead. November is not usually all too kind to me. It's my cold season's equivalent to my hot season's May.
I got through May.
Bring it on.
...my fans want more exciting blog entries.
Every breath you take.
The same date on which my hands went numb, a 20 year High School class reunion was taking place. I wasn't there. I wasn't invited. That's sort of like it was in 1987 anyway ...I wasn't there.
Perhaps I never should have been there in the first place.
Despite that though, at the end of the day, which is currently today, I'm glad that I once was. ...and I hope to always haunt those halls, classrooms, and stairwells. Most of all though, I hope to always haunt those who once kept me in their hearts, passing to them all the love I will ever have to give.
My hands went numb. My heart did not.
Just a note
Because tblog is now (thankfully!) accepting new accounts, if you go to tblog.com and open one, and are signed into it, you will always be able to post and read the comments on this blog. Without an account (which you are signed into) the comments will only be viewable when I'm able to keep an eye on them. I have to do it this way because of spam and because of the fact that sometimes people like to cause trouble. (Spam is one thing, but I'm usually not wanting to deal with "trouble".)
Just thought I'd mention it.
p.s. - Just because you can see the place to add a comment does not mean that your comment will be accepted. (tquirk) Always save before submitting, in case your comment disappears into the tvoid. If you can't see the comments links on the main page of my blog, that means that the comments are turned off to non-tblog members. If you are not a signed in tblog member, and try to submit a comment when the comments are turned off, your comment will disappear into the void.
and I have fungus on me
If we didn't break the record for the highest temperature on record for this day today, we had to have come damn close.
Fucking eighty something? In OCTOBER? HERE?
Fuck. This time last year I was pulling out my blankets. Today? My a/c is working overtime. It's been way above average temperature-wise here for weeks.
I don't care if it's "global warming" or "climate change" or anything else.
This sucks.
For the record.
You know, after 38 years of having to deal with the abusive reality of being a sexual or gender "minority", having to educate people at every turn, and now having taught people via the Internet for the last 8 years, often just the thought of writing one more mother fucking word or having one more mother fucking conversation about sex, gender, or sexuality makes me want to completely obliterate myself.
It's always something.
Been waiting on a callback from Ms. Ellen for a few days now. I had some lab work done, so I wanted to go over the results with her. I suppose that I can just write it off as a "no news is good news" thing, but it does annoy me that I haven't heard back from her.
I'll do what I've always done, I suppose. Interpret the results for myself and "self treat" to the best of my ability. At least with the one thing, a rather impressive Vitamin D insufficiency, I can attempt to help myself out. The rest of it is up to her though. I've had the same problems on my lab reports for a long time, and I've not been able to figure out what the actual problem is. Neither has anyone else either. To my knowledge, it has nothing to do with the MS. Then, I'm not a real doctor, I just play one in the privacy of my own life. You have to do these things when the majority of real doctors are completely confused by you.
...you choose to do these things when you come to realize that real doctors often feel that it's their right to touch or gawk at their patient's privates without a valid reason, and will even refuse to write needed prescriptions until the patient lets them have their own private freak show.
Yeah. Fun stuff.
Do us a favor?
If you call yourself my friend, perhaps you could favor me by signing this? If you do not consider yourself a friend of mine, perhaps you could favor a few million other people by signing it?
Just askin'.
p.s. - Yeah, it's an American thing. We're still bass ackwards with these sorts of issues. Maybe one day we'll grow up.
