Rants and Musings

I have no desire to be awake right now. The world, so loving and caring one minute, can bare fangs the next, and rip heads from necks, and hearts from chests.

It makes no difference what the actual truth is. This is my truth. This is the way the world seems to me.

From my mother:

"I just retrieved your message today. I was away in Virginia helping one of my friends by taking care of her two year-old at a conference white she attended meetings. All my expenses were paid in exchange for the child care I gave. My computer at home is extra slow, so I only get my messages here at work. Sorry it's been awhile from the time you sent your last message."

I'd e-mailed her on the 17th.

The edge. There it went, I saw it as I fell over it.

My mother is busy caring for other people's children, and my father is busy building sand castles in the Middle East. ...and me? OD attempt #5 didn't work out. So, here I sit. Here I sit, waiting for someone to just shoot me already.

and the world sleeps, and here I sit. Day after day, night after night, here I sit.

Stand and fall. Speak and perish. Day after day, night after night, here I sit.

So many things to say... so many.

I had some sleep, it's supposed to help. It did, for a bit. ...but yet, here I am again... spinning and spinning, trying to stop the head.

This disease is beyond brutal, and beyond WRONG. It's NOT FAIR. Not to me, and not to the others who have it. Screw me, there are people with LIVES that have this... people with CHILDREN. FUCK ME. Just fucking shoot me! Give the strength I have to those who NEED it.

I'm tiring. Seriously tiring.

All I did today was sleep. Sleep sleep sleep. ....and oh my fucking GOD did it feel GOOD.

I don't know what flipped the switch, but I'm really glad that it was flipped. Even if it starts again tomorrow, at least I had this one day.

Maybe I'll even sleep some more tonight. I can take one of those new Luney pills, if I want. I should probably save them for emergencies though.

Perhaps some wine.

Finally got some sleep. Didn't take the Lunesta, but I will tonight, if I'm back to that painful insomniac mode.

You know, I'm going to have to say that his has been the worst April-May in my entire life. Not that I can even remember much of it, but I think that's half the point.

I don't know that it's over yet. The sleep that I got has definitely done me some good though. I feel like I might have just passed through whatever it was that was going on.

There's still the hot season to get through, and it's always difficult, but it's the change overs that get me the worst. April-May usually being even worse than the change to cold, which happens sometime around the end of September and can go all the way through January, sometimes.

I just have to manage to keep cool, and keep sleeping. Everyone's MS is different. The disease attacks different parts of different people's Central Nervous System. Some things work for some people that do no good for others. Some things happen to some people that do not happen to others.

When I first announced my diagnosis online, a friend, who was already diagnosed with the disease, said something along the lines of "You have to get to know your MS." I'm sure that my reply wasn't anything too polite, as I'd been dealing with my MS for decades, but over the last couple of years, I do see the truth in it. MS is not a disease that you can gauge based on other people with the diagnosis, and statistics. Each case is as unique as each person.

My MS. To control my MS, I need to keep cool, keep sleeping, and avoid stress. A/C, sleeping pills that work, a roof over my head, and a steady supply of beer and smokes... If I can manage that, just maybe, one day, I will pull off that book.

Up and nauseaous... shakey... dizzy... tired. I fear the trip to the grocery store today. Falling in my apartment is one thing, falling in public is another.

I'm hoping that my next MRI doesn't show any new lesions, but I fear... feel that it will. Not that I'm too reluctant to try the IVIG, but the thought of a hospital stay... that scares the hell out of me. I know how I am, and I know how they are in there. Even if I can manage to get Neurodude to write orders for some sort of medication to sedate me, chances are the orders will magically not appear, or the nurses won't bring whatever it is to me until I'm way past the point of agitated. Getting out for a cigarette will be hell, even if possible.

I guess that I can refuse it. From what I know there's no evidence that IVIG works with Progressive types of MS. Actually, from what I know, there's no evidence that anything works with the Progressive types of MS. You just treat the symptoms, and wait for it to kill you. I'd be a lot more ok with that, if my symptoms were actually being treated. My "chief complaints" have not really been addressed. My ears, and my sleep problems, to say nothing of my rage... it seems that all neurology wants to do is send me off to another department... have me consult with another specialist. I would think that it should be them who consults with the other specialists.

I don't need a sleep study to tell what my sleep problems come from. It's because I have MS. I don't need an ENT doc to say why my ears are hyper sensitive and constantly ring. It's because I have MS. I don't need a shrink to figure out why I get rageful. It's because I have MS. MS is a Neurological issue. All these things should be able to be handled by Neurology. Yet, none of these things have been handled effectively.

I think that the truth is that because of the type of MS I have, "Progressive Relapsing", I'm just basically screwed. It's, ride it out until they send you to a home, or get committed to a Psych ward.

I'm running out of strength to deal with this, and running out of ideas.

Finally heard from Neurodude around noon or so. RavensWings actually called and bitched out the secretary, I think.

Dude, on top of everything else he said, managed to mention that I was "slurring my words". Well, no shit Sherlock!!! I haven't slept in about a fucking week, and have all but split my head open with as many falls as I've had.

So, now it's back to it not being about MS, it's that I have a drinking problem. Good fucking grief. These people are complete idiots. Does it ever occur to them that I DO NOT LIKE feeling like this? That it has occurred TO ME that it might be alcohol related? That I've quit drinking entirely, many times, to check and see if that was the case?

The quality of care that I have received here has been completely substandard. As it stands now, he wrote me a scrip for Lunesta... a week's worth. Must have gotten back to him, all of last weekend's ER drama. ...how I'm suicidal, etc., etc.

People, if you ever really need help in a crisis, don't involve anyone whose job it is to intervene. Once you get a rep, you're screwed. It's like Cage said to me, you're better off calling a phone sex line.

So, if Neurodude actually feels like doing his job, I'm supposed to have another MRI done, and if there are actually new lesions, I'm to be admitted for an IVIG course, which probably won't work, but it's worth a shot before moving on to more intensive Chemo. joy.

I told him, if I can just manage to sleep, I might be able to just ride this one out, but I HAVE TO be able to SLEEP. He mentioned going to a "sleep specialist" again. I almost smacked him through the phone. How about we just PRETEND that the "sleep specialist" has told you that I have trouble sleeping!!! Write some fucking prescriptions and let me find something that works!!!

After being up all night, and day, and finally talking to Neurodoody head, I slept for about 3 hours. THANK YOU SLEEPY GODS!!!

I can only hope that I can get more sleep tonight. Although the 3 hours was very much appreciated, it was far from enough.

I think that I could use about a week's worth of sleep at this point.

I can't take this.

I need sleep.

PLEASE