It starts with "No".
November's almost over. Almost. I feel things shifting around in my head... shifting gears. It's MS. It's psychological. It's seasonal. It's environmental. It's age related. It's all of it.
Sometimes, I realize that it's not that I'm tired of everything, or that I've lost the ability to care, it's just that I've gained the wisdom of knowing what makes the most sense to spend my energy on... what's healthiest for me.
More and more I'm realizing that I need to stop trying to prove myself to everyone... including myself.
3rd and 7
The Eagles are playing the Patriots tonight.
Who needs tarot cards when you can project your life onto a football game?
no place like...
...and then sometimes the U-Haul shows up, sometimes with its accompanying band of half a dozen or so cars full of kids, like today.
I guess that there's now an apartment available.
The power of "we".
6:45am
I suppose that aside from sitting around feeling sorry for myself, there's not much I'll be doing today. I'll eat some leftover sushi, and drink the beer I picked up about a week ago. It's a Guinness, extra stout. Just one. Both the sushi and the beer exist in my home thanks to RavensWings, for whom I am very, very thankful to have the help of.
She'll be thought of fondly today, as she is by me every day. Too, her son. I just hope that their Thanksgiving with their various family members isn't too hellish. I know how it can get over there.
I know that despite having a family, things can feel horrible on Thanksgiving. It doesn't stop me from feeling shitty though. Never did. The holiday just rubs salt in my wounds. Yeah. Thanksgiving turkeys are rather high in sodium. Tasty though.
Ahh... pain is such a rush.
7:51am
I can't help but wonder if I once used to have remissions but couldn't tell because of the fact that my brain was trying to escape from my skull.
8:15
Been playing around with an online "what is my blog rated?" toy for a while. Not only does it tell me a lot about what people are uptight about, but I've been rather entertained by what the various blogs I read are rated. NC-17's fuckin' UNITE!
8:36am
I wish I were cooking. This is depressing.
8:59am
Voices vibrate through the wall which divides my neighbor and I, shaking my heart. Once upon a time...
9:16am
This damn day is dragging. Is it beer time yet?
9:31am
The silence is deafening.
I'd better just post this. I only get worse from here.
I HATE this fucking "holiday".
Contrast
8:25am
Woke up around 4 AM with a half-assed migraine, and now it's starting to get even more of an attitude.
I was thinking on the whole concept of "remission" last night. It's quite interesting to me that a disease can be so different from person to person and yet be classified as the same disease. I don't know what "remission" is. I've never experienced it. In a lot of ways though, I'm glad that I don't actually go into remission with my MS, because it must be one hell of a big tease. I'll have a better day and even that can frustrate the hell out of me. It's just... if I actually went into remission, it would feel like a whole hell of a lot further to fall when it relapsed. ...sort of like the difference between always being poor and hitting the lottery, then being robbed of it all, over and over again.
I can understand why people with RRMS want to use the various meds out there. They've been shown to lengthen remissions. If I were ever to go into remission, I would probably be begging for something to make it last. Shoot, if I ever went into remission, I'd probably just think that I was dreaming. Yeah, right up until it relapsed.
Crazy fucking disease.
9:35am
Speaking of meds, the pharmacy dude just called to let me know that he took care of my Rx problem. For this, I am truly thankful.
RavensWings will be coming over tonight and will be picking us up some dinner. For this too, I am truly thankful.
Migraines suck, but it sure helps when there's a little less to feel bad about on other levels.
9:53am
Any minute now tblog will let me in to post this.
9:57
Any minute now.
9th Annual Transgender Day Of Remembrance
If you're so inclined, it would be appreciated if you were to click here and then do some reading.
If you're not, don't fucking comment, you cold hearted piece of shit.
I am thankful
for the snow.
It made me smile.
Not a sheep.
I've been having too many problems uploading the image to tblog, so for now, here's the (first I used for tblog) pic.
I've yet to decide whether or not to take down my current one. There are certainly worse pictures of me. [My current Tblog profile. (the link should work for non tblog members too.)]
mission accomplished
I feel like I'm going to burst into tears!!!
About a year and a half, it took me. Hour after hour, day after day. Searching, crawling the net, all but PRAYING.
...but I finally found it...
My original tblog user pic. The one I used before the one I used before I used the actual picture of myself. The one that summed me up better than any other picture ever did. The first one.
I'll upload it to tblog again, as soon as tblog decides that it wants to work! Maybe I'll take down my current picture. That picture is of me... me in 2004. Some might say it's of me... stalking my prey.
Some might, but it will always be their word against mine.
...and I've been told that I'm pretty good with words.
No place like a home.
They took somebody out around 5 AM. It was still dark, so I couldn't see who it was. The firetruck engine got my attention... and the lights. No siren though. That was nice of them.
From what my next door neighbor tells me it used to be even more frequent, but these days, from what I can tell, it's about once a week that the ambulance, etc. shows up to take someone off to the hospital. That's still pretty often for a place with only 36 apartments though, I think.
I had my turn back in 2006. Hopefully it won't be my turn again anytime soon. I don't like hospitals. I don't like anywhere I can't smoke. Give me a smoke, and I can get through just about anything.
Yeah, it's my drug of choice.
I should have stuck with LSD.
I've been a slave to drugs for more than a decade now. My whole life revolves around whether or not I have my drugs, whether or not I can afford my drugs, whether or not I have someone who will help me to get my drugs, whether or not my drugs are available, how I can avoid whoring myself for a steady supply. I'm sick of it.
Almost daily, I consider just saying, "NO!"
I fear it though. I fear what will happen to me if I just tell the pushers to suck the shit out of my ass and leave me the hell alone. I fear what will happen to me if I stop fucking with NATURE. I fear SUFFERING.
Funny how fear is often at the root of addiction. Yeah, life sucks, but it could be worse, so let me just maintain myself at this level of complete hell to be on the safe side.
Dependency. I fucking HATE it.
NO! I will NOT try your goddamned motherfucking Copaxone! NO! I will NOT be a part of funneling the taxpayers' money to your damn corporation! ...and give it some time, I'll get to the point where I'll risk it... I'll take myself off of the rest of the junk too! JUST TO PISS YOU OFF!!!
Spite Aid
(5pm 11/15 - but tblog is dragging it's t-ass again, so this probably won't get posted for a while... maybe tomorrow, actually.)
Just sitting in the dark. I want the air, so my window is open. It's quiet, and I like that. Talking to myself a little... I was singing a bit, I think. I don't listen to music much anymore. It's triggering... and usually just breaks my heart. "Helplessly Hoping." I always liked that song.
It was a busy day. Went to the food store (with help, of course), managed a shower.
Fighting with the drug store now. They've decided that it's illegal to fill my prescription. Yeah, after 12 years, it's suddenly not ok to give me more than one month's worth of a controlled substance at a time. Whatever. Funny how that will increase the money they get. Yeah. Whatever. Keep fucking with me. I can take what I give you and spend it elsewhere. My balls are big enough now.
5:48pm
Can't post yet. Who knew.
Was just asked (elsewhere online) what song I'd choose to sum up my life right now. I said, "Helplessly Hoping." I don't know if that's completely true though. For that moment in time it was more than appropriate, but... truth is transient.
Yeah...
but the song remains the same.
OFF
I'm just really off. My head... my brain is just... off. I have no clue how else to describe it.
Tblog is off too. As much as I want to post, it's not easily letting me. Dragging.
Why the fuck do I do this to myself? Why do I stay with this site?
...and in the real fucking world, it nearly hit 60 degrees (F) today.
This is bullshit.
I won't forget Katrina.
I'm hoping that my MS continues to do the same "Progressive Relapsing" dance as it's been doing for the last couple of decades and so some of these new symptoms will die down. Yes, more new symptoms will present themselves even as the old ones die down, that's how it seems to work with me, but I'd really love some of these current "new" ones to chill the fuck out for a while. With most of my symptoms, I just deal. I do complain like a sonofabitch when any of them get too unbearable, but generally speaking, I just push myself through the day. If I called the doctor every time something was "wrong", I'd be calling the doctor every day. There's nothing they can do for most of this shit anyway, so I save myself the stress and just skip the whole calling of the doctor production.
In all of this, I just wish that they'd make pot legal here. It seems really cruel that they won't let people who have no other alternative use it medicinally. ...and I'm saying this as someone who really hates pot. It just sure would be nice to have something I can take as needed for pain, and to maybe help with a few of my other symptoms. Not that alcohol doesn't help for pain, because it actually does, but it's rather rough on my way-too-sensitive digestive tract.
You know... I think that one day we'll look back at this period in history and feel pretty ashamed of ourselves for how we treated one another, especially the sick and the elderly. At least, I hope that one day we do. I like to think that in the end, we'll wake up.
Losing my grip.
Been freaking out more than a little since Friday. Friday, I had to go (with RavensWings help, of course) to the store. I knew that it was too much for me to be doing, but I don't have much choice. I have to get groceries. Three days of the Solu-Medrol, then the inspection, and finally the grocery store? Too much. Way too much.
I'm doing worse than I was before the Solu-Medrol, much worse. Scary worse. On Friday, while in front of a refrigerated case, all of a sudden I was "zapped". I hadn't moved. I hadn't even turned my head. All of a sudden I was shocked, from my neck to my toes, then back up around to the fronts of my thighs. The shock very literally moved me, but I managed, with the help of the refrigerated case, not to go down ...barely.
I don't know how to accurately explain all of it. There are many, many aspects of it all. The physical experience, the emotional impact, and where this new reality actually leaves me... it's all just more than a little overwhelming.
Screw the embarrassment factor, it's downright dangerous for me to leave the damn house now!
I want to give up. I want to just stop trying to figure out what's good or bad for me. I want to just eat, drink, and smoke myself to death. I want to somehow get myself "home" to Philly, rent a room, and...
Yeah. "and..."
I suppose that right now, some might say that it's a good thing that I don't always get what I want.
stupid fucking disease
Well... the very short of it is that I'm doing worse, not better in the least.
I might be even more scarce than usual... for those who might wonder. I think that I just need some extra bed time. Hopefully things will manage to lighten up a bit.
sorry
Same Time Every Year
Waiting on people to come into my apartment to inspect it today was not exactly at the top of my list of "things I don't mind stressing over".
I'm seriously going to pay for this bunch of days. I think that SirThinksalot is getting really, really pissed.
what I can manage to rant
12:16pm
Well, the IV is out. This is a very good thing.
I just hope that I don't feel obligated to do another one of these fucking treatments again anytime soon. I'm pretty fucking over it, on a lot of levels.
1:20pm
Racing like mad... bouncing off of the fucking walls. I need to slow the fuck down. Damn chemicals. Only twice in more than half a dozen times have they seemed to do me any good. Fucking side effects are usually worse than the symptoms they're supposed to help with, and they often make a lot of symptoms worse. There's no cure for this disease. These treatments are just a damn band-aid on a severed limb. Stupid shit.
2:45pm
Getting more and more "cranky" and paranoid. I'm in pain. I can't get my head to slow down. I really, really hate this shit!!!
3:15pm
Tblog is DRAGGING. FUCK!!!!!! I'm just trying to post this mess!!!
3:30pm
I feel like my fucking head is going to EXPLODE!!!
Under the Ivy
Although not completely impossible, it's not the most comfortable thing in the world to type with an IV in your own vein.
Only 2 more grams to go, two more days, and then at least it'll be done with.
Damn do ever I hate the way things taste while this crap is in my veins... and I smell like hospital shit. There's a very unique "hospital smell" which clings to you when you have to be in one of them (or their associated wards, clinics, or buildings) for any serious reason. At this point in my life, the smell is above and beyond nauseating to me. It's just downright psychologically triggering.
Rhythm Baby
Time warp... thinking back... in 1984 it was a Sunday as well; the 4th. I think of 1984 at this time every year. Think and re-think. One "What if..." after the next, until I just crack a beer and toast the fact that I made it this far, despite everything, and in spite of my mother... then and now.
There are plenty of great moms out there, mine just isn't one of them. Some people just aren't cut out to be parents. I forgive her, but forgiving and forgetting are two entirely different things. She is who she is. I am who I am. We can't all get along, related or not, sometimes even if we try... over and over and over again.
That night, I chose to leave rather than killing myself. Yes, it was a choice, but I think it was a good choice. We all make mistakes (aka "bad choices"), yes, and the way I see it, my not leaving would have been a mistake.
As I sit there with those damn chemicals dripping into my veins, I'll do my best to believe that my mother choosing not to get an abortion was a good choice. She always did tell me that I was "a mistake" though.
I've been told that I've brought a lot of good into many people's lives, so maybe y'all can forgive her for her little mistake back in 1968, but I've got 38 years worth of them to deal with, each one more painful than the last.
Don't ask why someone cuts; ask what hurts worse than cutting.
Wishboned
I don't know what the fuck to do with myself. My brain keeps drifting ...back into the past. Thanksgiving is coming up, and it makes me sad that I'm not able to really cook anymore. It makes me sad that Thanksgiving 2005 will probably be the last Thanksgiving for which I will have been able to cook. Cooking a good meal helped to make up for the lack of a family, I guess. Now? Fuck. It's damn tough to sit here without feeling like complete SHIT on most days, but on Thanksgiving? I still feel like shit but then also hate myself because I'm supposed to use the day to feel grateful. Fuck. I feel grateful for what I do have every day. I don't need a special day. Despite that fact though, I still end up feeling like blowing my damn brains out by "Black Friday."
This time of year is brutal, and not just for me. There's a reason why the suicide rate spikes, and it's not "Seasonal Affective Disorder". It's having where you rank in the hearts of those who are supposed to love you being rubbed in your face. It's about hurting and being made to feel like shit for hurting. Double whammy.
Maybe I'll invest in a bottle of Scotch.
Head Case
So, according to the Radiologist's report (I'll keep this in layman's terms.) my brain is trying to escape from my skull. Apparently it made it a whole 5 mm out. WooHoo! Free at last! Free at last!
Yeah, Arnold-Chiari type I malformation, what the fuck ever. ...for fuck sake, I have MS! (...and from what I read it's of the "innumerable" amount of brain lesions and now dancing around in the spinal cord variety!) Shit! Even my corpus callosum looks like a damn deflating wiener-dog balloon! Should I really give a rat's ass about whether or not my brain is otherwise following some stupid-ass stereotype?
Shit, I can't blame my cerebellar tonsils for wanting to jump ship. It's pretty messy up there, and ever since the other tonsils were liberated, back when I was about two years into this whole life thing, I'm sure that they've just been feeling a little lonely and out of place.
What a fucking life.
Welcome to 11/07.
Too much to do and too many Bumblefuckers to navigate around.
It was way too long of a day. I can't even pretend to try to write about it.
