Ree's Bod Log

2002-09-20T08:56:00.000-07:00

The numbness or rubberiness creeps and receeds. There's no telling where it's going to be or how bad, at any particular time. Fun stuff!

My face is hurting quite a bit, now, too. Both sides, but of course still mainly on the right. And it's crawling down the sides of my neck, both sides equally. In fact, putting pressure on my neck by lying on my side is very uncomfortable.

I'm oh, so very tired.

2002-09-18T09:31:00.000-07:00

That ole "bridge-sway" feeling, without the Topamax, seems to be dizziness. I don't have to be standing to feel it, in fact, most of the time I'm lying down or sitting. It's like getting the spins without the benefit of drinking alcohol. Yesterday I spent a good hour feeling dizzy and nauseous. Some of that can probably be attributed to the Neurontin and Baclofen, but since I've been on that awhile, and the sensation has only developed in the past six months, it seems like it must be something else.

And, besides stumbling around when I get up in the middle of the night (it's like I lose the sensation of where my body is in a given space), my knees buckle sometimes, when I'm just walking to and from. Mostly my right; sometimes the left side, but when that goes, it's from the hip down.

Clumsiness magnified.

2002-09-17T11:05:00.000-07:00

And I don't feel like I'm able to focus or concentrate very well. That may have shown up in my latest posts.

Oh, indeed.

2002-09-17T11:02:00.000-07:00

One of the questions I've been asking myself lately is: What do I have invested in being sick? So I've tried to figure out if going off the Topamax has helped, and if all these symptoms are part of the same thing, or separate issues.

I can honestly say that a lot of the tingling and numbness has now faded, although it seems to come and go in different areas of my body. It definitely isn't as bad as it was, although it seems to have been replaced by a kind of hypersensitivity. Like, I can feel the bottoms of my feet almost all the time. I notice them. I've been trying to decide whether this is because I can feel them, or if the lack of sensation has been replaced by this hypersensitivity. I feel like the brother in the House of Usher. I don't think this is necessarily a good thing.

Most of the numbness in my legs has been replaced by burning - like I can feel pressure after pressure has been removed.

I keep thinking I feel good enough to try and get a job, just something part-time, maybe in a fabric store and get an employee discount, then I have more pain and I feel exhausted just doing anything, and I realize that this isn't going to happen.

But I'm so bored. I just want to find something to do that won't wear me out.

2002-09-17T10:55:00.000-07:00

Burning legs, painful shoulders and arms, and lots of twitches. Not much else to report (but I'm going to do it anyway).

Had a good session with Dr. Russell yesterday, although we talked mostly about my sister and how I'm dealing with that situation. Which is to say, he pointed out that I should probably try not to absorb so many emotions from everyone else. True enough, and I did have a good defense system once upon a time; Dr. Russell also pointed out that I'm just very vulnerable to that right now because of my health.

Interesting how a psychologist, a presumed man of science, understands some of the more waffly parts of existence. F'rinstance, intuitiveness and empathy. (In my case, over-empathy.) I guess it makes sense in that he deals with emotions, but it was weird to have someone I don't know as either a family member or friend point out that I can feel what others are feeling. Made me feel like I wasn't going completely nuts....not that I'm completely sane, either, but at least I'm not to be straight-jacketed just yet.

We also discussed my boredom, and tendency to just watch tv and absorbing that kind of thing rather than paying attention to what I was thinking and feeling. At least I'm not trying to create any crises on my own (I had a bad habit of doing that when I was younger, just to justify my feelings of anxiety, I think; plunging into situations that I hadn't completely scoped out, or making decisions that weren't always the best for myself). I am learning as I age, a little at a time.....

2002-09-09T08:17:00.000-07:00

A combination of Topamax-withdrawal and general life issues produced some amazing anxiety. That is, anxiety as opposed to stress, which are two different sensations, at least within myself. Stress I can deal with, the anxiety made me feel like the world was crashing in around me. Kinda hard to sit and write or do much of anything when I feel like that.

The only other times that were similar were my college finals (y'know, at the end of every semester - dancing till I dropped and being extremely tired all the time helped, but I was much younger then, and not quite as physically unfit) and being on Norplant. I was almost to the point of calling either Dr. Russell or Dr. Peterson and having one of them prescribe some anti-anxiety medication. Fortunately, the anxiety seems to have dissipated, and I can cope with the normal stress.

What I can say about being off the Topamax is that some of the tingling and a lot of the numbness has gone, although I am unsure as yet as to whether or not that's because of not having any Topamax in my system or because that's just the way my body is working right now. Because it seems to come and go, and the skin on my back still has that rubbery feeling when I scratch. It's really hard to tell, at this point, what sensations (or lack thereof) are due to what causes (even if unnamed).

The itchy paraesthesia seemed to get unchained, and it's been really hard not to scratch holes in myself. I've tried antihistamines, and no luck. The twitching is worse, especially at night - to the point where I've been rolling from one side to the other to try and suppress it. My sleep is worse than it was, just when I thought I was getting some good rest, too.

And I've been fighting a nasty cold.

Argh.

2002-08-24T06:09:00.000-07:00

Well, my mind does seem a little clearer (five days Topamax-free), but the anxiety caused by withdrawal (the information did warn me) hasn't been that much fun. I'm hoping a few more days will take care of that.

This morning, my right leg is numb, my back is burning, and I don't seem to have much of a sense of taste. My lips are tingly and my arms feel weird.

Random pain and numbness, it's just what everyone needs to keep them on their toes.

2002-08-23T06:35:00.000-07:00

Yech.

2002-08-21T08:03:00.000-07:00

The walking thing hasn't worked out the past couple of days, either. I'd feel guilty, except that I know that once my legs stop hurting again, I can go walk again. And maybe once I get over the last vestiges of Topamax-withdrawal.

Yikes.

Some of the information pointed to increased anxiety, and boy, talk about an understatement. Of course, it doesn't help that Frankie isn't doing well, and is currently in the shop while I await news. Otherwise it feels like my mind has become diffuse, and I can't sit and think about any one thing for longer than two minutes together. It is better today, which is why I can sit down at the computer, although I don't know how long through the day it'll last. It's just exhausting fighting everything that's going on in my body, and it's not a conscious fight.

My face has started up, after a week of not bothering me. Flashes of pain on the left side, the creeping, bone-squeezing, ache on the right.

What else can I complain about? Oh, yeah! I talked to Dr. Peterson on the phone yesterday, because the yeast-y thing isn't going away, and he suggested trying to bolster my body's natural bacterial balance instead of going after the bugs, since obviously the latter is not working. So, a prescription for something called Fem pH, apparently a gel that gets applied, something called Culturelle ( which I should be able to find in a health-food store), and if I couldn't find that, the fall-back position of acidophilus. The fun hasn't stopped yet.....I talked about my appointment with Dr. Satovick, and Dr. Peterson said that he had wanted me to see an MS specialist. Huh. Because that's not the way I remember it when we discussed it with him - Matt and I thought I should just see another neurologist to see if we could get any other ideas, and perhaps start seeing somebody a little more often than every six months.

Disappointed.

I'm sure it's just as frustrating for him, although I do wish he'd pay a little more attention to my chart. I suppose I just need my own pet doctor, devoted entirely to my cause and willing to seek out anything that might help me, keep up-to-date on all my meds and the changes thereof, and be able to hunt down and pester anybody else who might be able to help me. Doesn't seem like too much to ask, does it?

So. Not being blindsided by the whole back/leg pain issue this time, I've been able to pay more attention to what's going on - and although I know exercise should help keep my muscles in condition to support the whole frame-work, this doesn't seem to be the case. I have been stretching and getting pretty limber, even if I do say so myself - and I've always been pretty loose-limbed - and my leg and back muscles are definitely getting stronger, but that doesn't seem to have any effect on what's going on now. Without any precipitating event, my muscles tightened up, and the neuropathic pain just started in on me. The only explanation I have is that the last injection's effectiveness is wearing off, and all I can really do right now is walk when I'm able, and keep up with the meditation (made difficult lately by the med-adjustment). This morning I can bend and stretch in ways I couldn't, yesterday, which in a normal world, doesn't make any sense.

Despite my soft and squidgy appearance (these past few years), I've always had pretty good muscle condition - whether from the luck of the genetic draw, or all those bales I used to toss as a teenager, I don't know - and I have gained a lot of my strength back. I can walk normally (ie, without limping) and have as much strength on the left as I do on the right, but the shooting pain up and down the left side when I do so (when the pain is worst) makes that inadvisable. Not that sitting down or lying still does me any better.

Oh, I may be a little aggravated. I remember how my body used to feel, and it pisses me off that it doesn't feel that way anymore.

Mentally, I want to do so much, but I don't seem to have the will to do anything. I'm still getting ideas and trying to keep any kind of brain activity going. Y'know, before I turn into a complete vegetable. I keep hoping that once the Topamax is out of my system, I'll feel a little sharper.

2002-08-19T07:11:00.000-07:00

Nope, didn't go walking yesterday. In fact, my legs hurt worse yesterday than they have in months - it was horrible. I did manage to walk this morning, but only about a third of what I normally do. It's very disconcerting, especially given the fact Dr. Gauthier only recently discharged me because I was feeling so much better. Now I wonder how much longer I can go before I'm going to have to have another injection?

Oh, the fun never stops here.

2002-08-18T06:33:00.000-07:00

I don't think I'm going to make my walk this morning. My legs hurt. My muscles seem to have tightened up for no reason - it's not like I haven't been stretching. I thought it would get easier, and it's not.

Yeah, well.

2002-08-16T08:12:00.000-07:00

Things have calmed down a bit, but I still feel like I can't do much. I don't know why, maybe it's coming down from the Topamax? Of course, I still have the p-word goin' on, but I seem to be adjusting. I guess it's just a matter of learning to live with it. Oh, great.

I'm beginning to think I need to get off the Neurontin and Baclofen, as well, to see what other symptoms are being masked, or how much the symptoms I already have are being masked. The AFP is mostly covered by the paraesthesia, with minor flares every so often. Even the tooth-achy pain seems to have subsided somewhat, so I wonder what, it is exactly, the Topamax was doing for me? It is all turning out so weird, and even though I must've mentioned this before, the AFP was probably just another sign along the road to what's going on right now.

So if this isn't neurological, or at least, not a central nervous system thingie, what the Hell is going on? Are my nerves being eaten from the ends up, or what? They've only done shots of my head, so it follows that they wouldn't see anything like that, and I don't know if they can see a lack rather than a layering, which is what they look for with MS. I don't have any muscle weakness, which is an indicator of Lou Gherig's disease, and I think that's a major reason the docs are confused. My balance is definitely off, I have patchy hypesthesia, global paraesthesia, and intermittent pain in my face, back, hip, and legs. Otherwise I'm obnoxiously healthy. (I think the problem with the yeast/staph infections is because of the meds and interactions, and can be resolved if I go off the anticonvulsants and try again with the regular resolutions.)

I would really like to be able to do stuff again, to be productive. As it is, it's getting harder and harder to just sit here and write.

2002-08-15T05:10:00.000-07:00

My right side seems to be on perma-fritz, whatever that may indicate. It's not nearly as bad as it was when it started, but it there's this constant tingle like I've just been tickled (another sensation I miss - I'm no longer ticklish). The tingle marches up and down its scale, like there's a string being plucked, somewhere, and its responding.

Not that the left side doesn't feel its own sense of paraesthesia, but not nearly to the same degree. It's almost normal in comparison.

The leg pain is trying to creep back, this time down both legs, although my left hip has been complaining a bit. I'm hoping the more I exercise, the less reason for complaint, but I have to take it slow or risk injuring myself further. So I've settled into a rhythm of early morning walks (although not quite as early, because it's getting damn' dark before 6am, and I'm being forced to encounter those pairs of women I was so worried about) and at least now I have some muscle tone in my legs.

2002-08-14T04:35:00.000-07:00

A new twist on an old friend, yesterday. Since yesterday morning, I spent the day dealing with, not only the dyskinesthesia, which dissipated eventually, but a deep, internal body-itch that ran down the entire right side (no way to get to it, to relieve that one), plus a hyper-paraesthetic sensation. Kind of like what you feel when a part goes to sleep, and you relieve the pressure, but right before the blood flow gets back to it. That floaty, "don't know where to put it" kind of feeling? That was what the entire right side of my body felt like. Now, why would just the right side feel that way? It was completely maddening, and if I had been a cat, I would've torn my body to bloody ribbons trying to relieve the itch, and walked myself in circles from the imbalance.

Lucky I'm not a cat.

The interesting thing about meditation - or at least, the meditation (or self-hypnosis) I've been doing - is that, if I'm concentrating, I can take my mind out of there. In my last session with Dr. Russell, he attempted to teach me some more control over my own reactions to what's going on around me (I can hear him saying, "You're good at this, so work on it this time...."), and I think it's starting to work. I don't know if it's working in the way he intended, but it's working. I just have to find my own way of doing things to make them effective for me, I suppose. Anyway, Dr. Russell discussed with me a way of dealing with stress, so that the paraesthesia wouldn't go into overdrive everytime I got a little bit aggravated, worried, or concerned (and trust me, it only takes a little). He showed me, step-by-step (because, apparently, that's what I need), how to slow my breathing and visualize my heart, heartbeat, and bloodflow, and then visualize the bloodflow to the affected areas, making them warmer by the blood, and thus feel better and less aggravated by the paraesthesia. It seems to work, and the more I practice, the more able I am to do it automatically, instead of going into automatic adrenalin overdrive. So, I use it to calm whatever else the paraesthesia is aggravating, or whatever.

Same goes for the pain mediation technique he taught me, which is pretty much automatic, now, too. I think a lot of my pain relief, now, is due to that. I also use a simple breath meditation to get to sleep, and on good nights it really helps give me some rest.

A girl's gotta have a hobby.

2002-08-13T09:24:00.000-07:00

Topamax - the problem? Pshaw.

2002-08-13T09:23:00.000-07:00

Oh boy. From the TMI files: yeast infection combined with staph, which I've had since taking heavy-duty antibiotics for the furuncles in February (antibiotics will always send me into yeast infection territory, unless I brace myself with acidophilus, and even that didn't work this time). Since the paraesthesia was at work, and the numbness in my legs started at the waist and hip level, and yes, has affected my bits and parts (and, as you can imagine, my love life), I just kinda didn't really notice much was going on. Numbness will do that. So.

When I finally got around to mentioning the problem to Dr. Peterson it was June, and since then I have treated it with three courses of Diflucan, two courses of Terazol, and, for the staph infection, one course of Bactrim (which, as it seems, I should not be taking if I'm also taking anti-convulsants. I may have to speak to Dr. Peterson about this....). None of which have worked. It didn't help that my period started in the middle of the first Terazol treatment, or that my iron count is low, or that I shouldn't be taking an iron supplement w/Bactrim on top of anti-convulsants. From what I've read, I've got several things working against the medications working for me.

Plus, my cycles have started coming at a rate of 22-23 days, with a lot of blood loss. I don't suppose that helps.

I'm still walking, even though some mornings are tough. I thought it'd get easier, but it turns out not to be the case. Sometimes I walk easy, sometimes not. I can walk like there's nothing wrong with me, and then I start weaving around like I'm drunk or high on something. One leg will cross completely in front of the other for no apparent reason - I don't consciously do it, it just happens. I'm beginning to understand, now, why I trip a lot.

This morning I'm experiencing that dyskinesthesia again. I'd almost missed it, but now I realize that was silly. I feel at odds with the world, like there's something between me and reality, a film, a barrier, some sort of membrane. I'm trying very hard to maintain.

2002-08-10T17:19:00.000-07:00

Well, the Topamax has definitely been doing its job as a pain-relief/anti-spasmodic for the AFP. I went down to 50 mg 2x daily yesterday, and today has been a bit of a bitch. It's felt like I have a roaring infection on the right side of my face all day, plus burning, plus the paraesthesia overlaying that - which kind of mitigates it, so I guess that kind of helps. As for the paraesthesia abating, I don't think that's happening. Instead, I'm feeling it more.

I don't think, in all truth, that Topamax is The Guy, which is disappointing, because when I first read that prescription info, I did get all excited. I am going to stick out this process, though, because if I don't, we'll never know for sure whether or not the paraesthesia is side-effect-related, or something else entirely.

It'll be a lidocaine patch for me this evening. Unattractive, but fairly effective as far as they go. They're supposed to be for back pain, but Dr. Steffens said they work well for his AFP patients, and I have no problem with that.

My legs have been burny-achy all day. I got up late for my walk - I woke up at 3am, and there was no way I was going to get up at that time, and when I woke up again at 6 I just couldn't bring myself to get out of bed. I finally woke up again at about 7:30, and after wandering about, and a blog entry, and after having convinced myself it was oh. kay. to miss a day, that I might be able to go for a walk, after all. My legs still don't feel right, and I don't know how to describe the feeling - kind of wandering, restless, but leaden. Contradictory. It's intermittent, which is why I was able to go for my walk, but they just don't feel right.

2002-08-10T06:39:00.000-07:00

Yesterday, having not heard anything back from Dr. Whitehair (as expected), Matt called to let the office know we would be coming by to pick up the MRI's. Well, he left a message. A couple of hours later, the good ole Doc called back, and yup, the scans were "perfectly normal" and the neurological exam was "perfectly normal" and he was going to send a note up to Dr. Peterson to that effect.

Did I call it, or what?

Lazy-ass sonofabitch. When you have to hit my left knee twice, the second time hard, to get any sort of reaction, I don't call that precisely normal. When I'm wobbling about the room because my balance is screwed, I don't call that normal. When the PA ran a pin down my leg, and I couldn't feel it 25% of the time, I don't believe that is normal. But of course, that is just my nonprofessional, female, opinion.

He should've tried my back, see what kind of sensation I get there, or the insides of my arms. (Now I think of it, the PA was female too, right?)

Matt also requested the file, which they will mail to us. I'm sure it will be sanitized for our protection.

So he suggested we return to Dr. Peterson and have Dr. Peterson run some more tests for whateveritis he would run tests for. Any clues?

2002-08-08T06:47:00.000-07:00

The walks continue apace. Har! Oh, I crack me up sometimes, I really do. I've been noticing a few things, but first, a question: should my hands be going numb when I walk? I mean, it's not like it's cold outside, even at 5:45am.

I usually wake up about 4:30, can't get back to sleep, come down, get on the computer, get dressed, go walk. I started out at 7am, thinking, "Hey! This is cool enough, I won't have the heat aggravating everything else." But then, I started running into pairs of middle-aged Mormon women, who would say "Hello." and "Good morning." And since my gait resembles that of a drunken sailor struggling across the deck of a man'o'war in a high gale, even when the pavement is flat, this is fairly embarrassing to me. So I tried 6am, but still ran into a fair amount of them, but a relatively slimmer demographic. So now I go out fifteen minutes earlier, and I run into a 70ish old lady going one way, and a 60ish old man going the other, and that's oh. kay. I can deal with that. The pairs of Mormon women I can't deal with. They were passing me up! We can't be havin' with that. Nope. I prefer my solitude, and I love the light in the morning, it's so cool and tinged with pink and peach. And I'm not a pastel kind of gal. Besides, I prefer my thoughts not to be interrupted by feelings of inadequacy.

I used to be able to walk the usual mile in fifteen minutes, now it takes 35. That's better from when I started a week ago, though, when I could barely make it around the block and over some. With my cane. My balance is way off, and I stumble around at night like someone who stumbles around a lot. Which is why I took the cane with me the first few days. Then, as my legs got used to walking a bit more, and I kept seeing people out doing the same thing, I decided to leave the cane at home and try it without. I weave around a lot, tending to list to the left, but I think I've managed to make that work for me. Most of the time.

The sharp neuropathic pain increases in my left leg when I walk, but I can ignore that, and my right leg starts to hurt, and I can ignore that, too. I just know that my legs and back have to be strong if I want to avoid what happened last winter. The paraesthesia is there when I walk, but it's easier to not have to worry about it when I'm moving. It's just that I get so tired, and the last few blocks I am more than ready to come home. But I'm doing something, and that helps.

I'm also stretching, and have borrowed a "Beginning Yoga" tape from Gina. Shannon wants to learn yoga, too, and I promised him we'd take a look at the tape this morning. I'm a little skeptical of it, myself (the tape, not yoga), but it was free, and that counts for a lot.

2002-08-04T17:10:00.000-07:00

Hypesthesia: Decreased sensitivity to touch and pain.
[On-Line Medical Dictionary] The feeling of rubberiness in my skin.

Nystagmus: (Gr. nystagmos drowsiness, from nystazein to nod) an involuntary, rapid, rhythmic movement of the eyeball, which may be horizontal, vertical, rotatory, or mixed, i.e., of two varieties.
[Multilingual Glossary of Medical Terms] I get this more from time to time, I thought it was just because I was sleepier than normal. Turns out there's a specific word for it. Cool.

When I got my refill on the Topamax, I also got theTopamax Prescribing Information, attached to the bottle. This is the first time I've seen it. Usually I avidly read all the prescribing information that comes with any of my prescriptions, because I'm looking for weight-gain side-effects (if there's even a small chance of weight-gain, I'll gain weight, that just seems to be the way it is). I noticed something interesting: there was a small incidence of paraesthesia in the clinical trials, and that paraesthesia was a main reason given for stopping the drug. However, another thing I noticed, rereading the information, was that the paraesthesias were intermittent and mild, which mine are not. Anyway, I called Dr. Majersik, and I am going to taper off the Topamax, and in a couple of weeks will be off it completely. Then, it will be a few days before it is out of my system. Then, we shall see.

I also found a site, which is actually about psychotic and mental health medications, but which lists Topamax. (Amazing what the uses for different medications can be.) It mentions the possibility that Topamax may be the cause of my continuing battle with a certain infection. I don't know how reliable that site is, though. The larger site purports to be a mental health support site, so the information may be about as reliable as the information from the TN/Facial Neuralgia sites. Which is to say, they put up what sounds good, and they think is the best information available, but they don't research it as much as one would hope.

In the meantime, I've started taking walks in the early morning, hoping that a little movement will prevent some of the muscles from seizing up, and that if I keep a little more in shape, my weight will not balloon. I'm hoping, naturally, to keep doing this, and to add some other type of exercise, and I'm planning on asking Dr. Peterson for some information on physical therapy for my back. Maybe I can help prevent a repeat performance of last winter. Ya think?

2002-08-03T05:40:00.000-07:00

I wonder if my taking iron could have anything to do with some of it? Or is that a bit of a stretch?

2002-08-03T05:39:00.000-07:00

I noticed something vaguely unusual yesterday whilst plucking my eyebrows [did you like that? I used "whilst" in a sentence!]: I got a metallic taste in my mouth when I pulled some particularly stubborn, mutant, Eddie Munster-ish hairs out of the brows. Both sides. Huh.

I've been tasting metal in my mouth quite a bit, lately. Doesn't seem to be any reason or connection to anything, other than the above, and when my nose is bleeding (however little).

2002-08-03T04:48:00.000-07:00

We picked up the MRI films on Wednesday, since they needed 24 hours to get them ready (and they're mine now, and will cost money to get more, so I need to make sure I get them back from Dr. Silverhair as soon as I get my negative report, or, actually, any report, because at this point I don't trust him in any way, shape, or form). Dropped 'em off, and have since not heard back. Not a surprise, but I will make sure to get any notes from him, as well. Because....

I got a call yesterday, from Dr. Sbei's replacement (and as you can tell, I will not be directly under Dr. Steffen's care), Dr. Majersik. She said she had got my message and apologized for taking so long to get back to me. Well, yeah, I should think, since I had already gone and wasted some perfectly good time and temper with whatsishair. I described, in fairly good detail, what had been going on, and I could hear the tap-tap-tapping of a keyboard as, I assume, she took copious notes. I sincerely hope she took copious notes. She did say that it all sounded complicated (uh-huh, uh-huh), and that I was doing all the right things (I didn't mention my straying into Second Opinion territory, although that is probably allowed). Research, seeing Dr. Russell, my going to Dr. Gauthier. (Also, panicking.....)

I mentioned how, when my body feels drunk and my mind doesn't - when it's really bad - that it's 50-50 on whether or not I take myself to the emergency room, but obviously so far I haven't done that, and she said that they wouldn't know what to do with me. I said, "Exactly." That's why I haven't gone. What would be the point?

So, it was good to hear from the next neurologist resident, I feel much better. Even though I won't actually meet her until October. I'm starting to resign myself to the fact that this whole Bod Thang won't be resolved for a very long time; as long as the neurologist keeps in contact with me - as Dr. Majersik proved she is willing to do - I think I might just be able to handle it. I'll just have to see, I guess.

No panicking allowed.

2002-07-31T16:24:00.000-07:00

Twitching, otherwise known as myoclonus. Just another drop of information in the well of my mind.

2002-07-30T17:35:00.000-07:00

The previous was brought to you by Ree's Rants R Me. Apologies for language, iffen it offends, but that's the way it goes.

2002-07-30T17:32:00.000-07:00

Went to see a new and different neurologist this morning, for a second opinion. I was hoping to find someone who would see me more often than once every five or six months. I was also hoping to see someone who would actually listen to what I was saying, and not just focus on the AFP, or jump to conclusions because I do my research and am as smart, if not smarter, than he is.

What a paternalistic prick. (Matt's term, not mine - although if I had thought of it, instead of "motherfucking bastard, goddamsonofabitch, goddammit!" I would've used it, but I do like to spread my attributions appropriately).

I think we knew pretty much as soon as he walked in the door and started doing the same neurological exam his PA had done (a very nice young woman, who I am sure is looking forward and getting a real job with a real human being) that this man was not going to be bothered with me, or want to look beyond the obvious. He is going to look at the MRI films, which we have to pick up from the U hospital tomorrow since they did not get sent to his office like we were promised they would be, but I can predict with 99.99% certainty that he is not going to find anything wrong with them, and thus with me. Beyond the AFP, for which he suggested I see I neurosurgeon.

When he suggested that, I politely informed him that I'd done research on that, and the research suggests that the outcome for AFP patients is not positive. Classical TN patients do have reasonable outcomes, but AFP is something else altogether. Sir, I have lived with this for long enough, and I have internet access, I have a mind, and am able to use it - you do the math, assface.

I tried to discuss the fact that I'd been seeing a psychologist and that we didn't think it was psychosomatic, and he responded that "a few visits with a psychologist can't determine whether or not these are psychophysiological effects" and went on to ask me if I had much stress in my life. Well, huh. Am I alive? Am I writing this blog? Do I have physical problems and have to deal with obtuse doctors who are nearing retirement and don't like intelligent women who know what they're talking about and so can be dismissed because they'll make you look bad? Because you don't know what the fuck you're talking about.

"I've never seen symptoms like this, I don't know what to say. I'll have to look at the MRI films before I can say anything for sure."

Riiiight. And then you'll tell me that you can't help me, I should see the neurosurgeon about the AFP, and a psychiatrist about the rest of it. Because, ya know, my symptoms match a lot of multiple sclerosis symptoms, except for the electrical stuff, so what's going on mimics MS up to a point, and then veers off into some unknown territory, and that scares the pants off you. You're not prepared to deal with what my body is doing, and you won't have the balls to tell me to my face.

You're a liar and a misogynist, and this morning was a complete waste of time.

2002-07-29T04:59:00.000-07:00

Let's do a body check: the paraesthesia seems to have abated somewhat, which has been a mighty relief. The lethargy is still around, I'm still frustrated by what I cannot do, but I've been writing a lot, as anyone who has checked the blog recently may be able to tell. The facial pain has made a comeback, which I am not happy about.

Speaking of which, I broke out my lidocaine patches last night, just for fun and entertainment purposes. It works pretty well, the only problem being that one side of my tongue ends up being numb all day, and since my tongue has had problems lately anyway, this is not really a good thing. Of course, numb in a cold way, and the usual numb - or rubbery, as I prefer to describe it - in the way I have become used to it, are two different sensations, so at least we're switching off.

Vision: Very occasionally I will have what seems like mercury cross the bottom of my vision. It's silver and it trails across the path of my vision in liquid blobs. As I move my head it's almost like a reflection of light. This has happened pretty much as long as I can remember, although it is happening more lately.

I seem to have slightly more sensation in my skin recently, so my sense that things come and go wasn't way off. I feel like there is something playing with the circuitry, messing about with the switches.....

2002-07-27T18:26:00.000-07:00

The question arises - why do I feel the need to note every single thing that's happening? And I answer that I'm afraid I'm going to completely lose it. Too many things are happening, fairly quickly, and more and more I'm losing my grasp of some of the cognitive skills that I used to take for granted. I just keep thinking that if I write everything down, I can make some sense of it, if I can write it down it will somehow sort itself out. Naturally, this won't happen, but the compulsion is still there. If anyone gets, uh, embarrassed in the process (y'know because of TMI - Too Much Information - Syndrome), that's the chance you gotta take. I have to assume you are an adult, yes?

No, really, it's not that I'm callous, but I'm about ready to jump out of my body and steal somebody elses.

I'm just sayin'.....

2002-07-26T08:28:00.000-07:00

More weirdness:
A feeling like ice dripping down my right arm, just below my armpit. Don't know why, or how, but there it is. My lips have a pretty much constant buzz or hum of numbness and tingling. Pretty mild, and I can feel stuff over and under that feeling, but it is there. It kinda spreads over the rest of my face, being more predominant on the right side. The AFP underlies that, more painful on occasion, but the buzzing and humming seems to counteract it.

My legs get numb and heavy when I lie down or sit, and the rest of my body will follow when I lie down sometimes, spreading up to my chest and arms. This can be oppressive or relaxing, and I don't know what makes the difference. Meditation and breath-mindfulness helps the oppressiveness, and if I just lift a finger or move a foot, the oppressiveness lifts immediately, and the numbness flows away, but when I'm trying to go to sleep, I don't want to be constantly moving around to avoid the feeling. I think my sleep disruption may stem partly from this feeling.

Sleep-walking - I know that I used to do this when I was a child, but I am doing it quite a bit now, and it's kind of troublesome. Not because I'm worried about doing anything dangerous, but because I like to be aware of what I'm doing at all times. Last night I woke up twice and came downstairs and outside for a cigarette: once at 4am and then again close to 6. When I came back out around 6 I noticed the door was not locked, but I remember, distinctly, locking it on the way back in, and then when I came out at 8 (I had forced myself back to bed, because the boys had decided to sleep in the basement since one of their friends had slept over, and The Dude resides in the basement), I noticed that not only was the door not locked, but it was open (we have a screen door, fear not, the cats had not escaped). So, either I had come back downstairs twice more last night, or one of the kids had gone outside. Or Matt had, which is unlikely. I will ask all of them, and they will look askance at me, as they do after one of these nights, because it always ends up being me who does these strange things in the middle of the night.

Grr. Argh.

Bloody noses. I have nostrils you could drive a train through (thanks, Matt), so the blood trickles straight back down my throat (they're not gushers), but it's happening often enough to make me question. I thought I'd mention it, anyway, in the interest of full disclosure, and since I had a nasty (and painful) one this morning.

2002-07-25T18:28:00.000-07:00

I guess I'll find out if any of the previous has anything to do with what's going on, or not.

Twitches:
There's the regular twitch, which occurs mostly in my left hand, second and ring fingers, sometimes thumb. My index finger will do it, too, but mostly it pulls in (as does the second finger), like my granddad's second finger did (his ended up pulled entirely in, permanently, after WWII, whether due to a neurological disorder or a war injury, I was never entirely sure), and the same fingers on my right hand will twitch, too, in the same way, but not nearly as much.
I have what I call "micro" twitchs near my elbows, not anything you can see, they lay just under the surface and feel like tiny surges that want to break through my skin. Nothing painful, at all, but kind of funky and weird. I also get them in my face, mostly on the right side, sometimes wrapping around my head and down my neck.
Jumper-cable twitches in my legs, mostly thighs, sometimes calves, usually right before a major pain episode and mostly on the left side. I had one huge, giant electrical charge-like jolt in my left thigh last winter, that felt like nothing I've ever felt before, it felt like two shocks - one running up and one running down - meeting in the middle of my thigh. Not painful, but, well, shocking. That was in the middle of a very, very, painful episode. I haven't experienced much since the pain has been more under control.
Reverse-twitches - I don't know how else to describe it. It's like the complete opposite of a twitch, the release, instead of the joining or knitting, which is what it feels like a twitch does (to me). These are just way bizarre, but also, and I know I'm wacky, kind of cool.

Electrical activity - another thing I don't know how to describe any other way:
What I've described before as "sparking" along my body. It feels like electricity jumping along my body hair. Like I said before, it feels kinda cool. I'm sorry if that's wrong, or reveals me as a complete, freaking, nut-bar (as if nothing else had, already), but there ya go.
Pulse in my forehead - again, I don't know how else to describe it, but this has happened a couple of times: it feels like someone has sent a jolt through my skin. It's not painful, but it does feel electrical in nature.

Gotta go, dinner. Barbecued ribs....mmmm....ribs.....

2002-07-25T17:30:00.000-07:00

All righty - the sedimentation rate is due to an infection that nobody wants to know about, mm-kay? Blood sedimentation rates go up when there is an infection in the body, and I've been fighting this one since, well, February (and nothing to do with everything else, unless everything else has made it hard to fight this one off, which is, given everything else, likely). This would be because my iron is low, which is something I've fought on and off for as long as I can remember. Probably since before I had hepatitis (B, I think), when I was about seven years old. I've always been mildly anemic. I would've thought that, since I've been taking my Women's Daily Multivitamin (generic-type), that wouldn't have been a prob, but apparently it is. So, anyway, this infection, mild as it normally is in other women, has been a Bitch-Monster From Hell. It started when I took some heavy-duty antibioticals (yes, that's on purpose, you can thank some folks down in Blanding who use that term when Dad prescribes for their animals) due to yet another embarrassing, yet ongoing and problematic issue, which has gone on and off continually since the accident, Furuncles From Hell (or, Acne Gone Wild).

File all this under, More Stuff You Didn't Need To Know, and let it pass from memory unnoticed, please, I beg you. I just have to get it off my mind, because, well, I do. That's just me, let it not concern you too much.

Actually, the AGW has let up, so that's a relief. There's no rhyme or reason to any of it, I'm just along for the ride.

So, that's why the blood sedimentation is up. There is no other reason to suspect an infection in my body - as I've stated before, I'm ridiculously healthy. Well, I guess with the exception of being mildly anemic. Heh.

2002-07-23T15:56:00.000-07:00

Saw Dr. Peterson this afternoon - I don't know if he's sick of seeing me, yet (I hope not, he's been really good to us), but he did point me in the direction of a new neurologist, someone who isn't quite as busy as the guys up at the U (and is connected with St. Mark's, which is oh, so much more convenient than the University). He agreed that All Signs Point To something that isn't quite as linear as Dr.s Steffens and Sbei have been treating, and that we need something a little more lateral. Matt and I tried to assure him we weren't diagnosing me with MS (as I've mentioned, two MRIs seem to have ruled that out; my mind's still open, naturally, I just want to find something out, any information at this point would be appreciated), but I don't think Dr. Peterson is worried about us appropriating any physicians' prerogatives. I think he appreciates my frustration, and at this point, my fears.

The blood test results were back, too, so we got more information: negative on Lupus; normal on thyroid; a little low on iron; and something about being high on the sediment level, which I don't quite understand, but as Dr. Peterson explained it, it means that I do have something wrong, systemically if not infectiously. I don't have an infection, that is to say, but my blood is saying, through the iron and sediment levels, that there is something going on. So, I'm not completely out of my mind (at least, not hypochondriacal), there is something going on.

Sometimes it's hard being right.

2002-07-23T07:28:00.000-07:00

Despite what I just said, I do go back and carefully read for content and error. Mostly. Heh. Just so everyone knows that my words are chosen carefully. But I suppose you knew that already....

2002-07-23T07:25:00.000-07:00

One thing I've really noticed with all the meds I'm on is the degradation of my writing skills - not my being able to put my thoughts down into words, but simply being able to get the letters and words in the right order. Simple words come out spelled incorrectly, words are juxtaposed, and sentences will emerge in ways that seem simply....unusual. It's definitely weird. I just had to edit Ree 101 because of simple errors that I should obviously not have made. Stupid stuff that I laugh at other people for making, and leaving up, on their own sites. (Generally I try to avoid reading other blogs, but when I'm doing research, sometimes I do run across exceptionally badly edited content.) I apologize to anyone I've e-mailed who've run across errors like this in my replies. It's the meds, I tell you, the meds!

I swear.

Honest.

2002-07-22T06:46:00.000-07:00

The paraesthesia was really bad on Saturday, although I could still feel the inside of my lips. At least I wasn't constantly biting them. My face hurt too bad for that. Yowee.

I guess it's good to have words for what I'm feeling - maybe now the doctors will understand some of what I'm saying? Or will they be annoyed because I'm hijacking their terms? Still, I'm building a vocabulary, and that helps me buttress myself against this stuff, intellectually at least. Emotionally, I'm still working on. My goal is still to hold in there for the twenty-thirty years this is going to take for medical science to figure the shit out. And for the whole immortality thing to get sorted, but I'm just humming the same ole tune.

Even at the low end, twenty years is a long time.....

2002-07-22T06:25:00.000-07:00

Dyskinesthesia would also work.

2002-07-21T05:47:00.000-07:00

Oooo! I forgot to post this, yesterday, when I was doing the other stuff about paraesthesia: The NINDS information site. It doesn't really give that much information, but at least it's another tidbit on the tray.

I am really glad I finally have a word, and I wish I had had one sooner. I think of it as Dr. Gauthier's parting gift. I didn't win the game, but at least I got a prize.

I've been spending the past hour or so trying to figure out what the fancy-schmancy term for that bridge-sway sensation must be - kinesthesia is what the normal sense is, so what is it I'm feeling? Parakinesthesia?

2002-07-20T05:48:00.000-07:00

Paraesthesia - Main Entry: par·es·the·sia; Pronunciation: "par-&s-'thE-zh&; Function: noun; Etymology: New Latin, from para- + -esthesia (as in anesthesia); Date: circa 1860; : a sensation of pricking, tingling, or creeping on the skin that has no objective cause. [Yeah, whatever.....]
[Merriam-Webster Online]

From the The Neuropathy Trust: Peripheral Neuropathy Info - Associated Symptoms, up to and including paraesthesia. Very interesting, innit? Which leads me to think that this whole thing is related to the neuropathy, which further leads me to think that the neuropathy must be something larger than just a piddling side-effect of a minor ruptured disc.

I don't know if the pelvic fracture can possibly cause something like this, but the incident with my arms when I was fourteen leads me to believe that the pelvic fracture is not responsible; then, of course, there is the whole AFP shit. Is the AFP merely a symptom of a larger pathology?

2002-07-19T20:14:00.000-07:00

Dr. Gauthier broke up with me today. Well, that's what I could call it if I had actually started the transference process, or is it identification? Possibly both. Maybe it helps to be married. Anyway, apparently he's moving to Virginia with his wife, and since I've got a grip on the pain, and the injections have helped, and Dr. Russell and I are working with the psychological stuff, he feels that what we've really been doing during the past appointments is simply discussing symptoms and trying to figure out what the Hell's been going on. He can't figure it out, and it's really out of his purview. If I need more injections, I can go back to the pain clinic and see one of his associates.

Dammit. Grooming another doctor in a few months isn't my idea of a good time.

But, he's been a good doctor, and he has helped me - especially with recommending Dr. Russell. Of course, if Dr. Russell dumps me, I'm really going to be, as my mother says, up the river without a canoe.

So I'm going to have to - as I mentioned earlier - do the research, put up with more questions and interviews and tests and skepticism. And try to get the neurologist to pay some attention, but it's starting to look like I might have to shop for a new neurologist. The more I think about it, the more I'm starting to wonder if seeing the neurologist every five months, with my symptoms changing so swiftly, isn't cutting things a little fine. If it isn't a nerve thing, that'd be okay, but what if it is? I dunno.

I don't know if I should panic, or if I should just wait and see what happens. When the bridge-sway stuff takes over - when it's really so intense I can't feel anything else - I feel like panicking, feel like running to the emergency room and forcing them to strap me down and inject me with something to induce a coma - anything to make it stop. Anything to stop my body doing this to me. I don't know what else to do.

The leg and back pain, even the face pain just falls away in comparison - the meditation, the techniques I've developed to help control my fear of the pain, they're automatic now. But everything else, I don't know how to deal with it. It skitters away from me, almost laughing at my attempts to deal with it. That's what I'm learning to fear. I'm getting used to the numbness, the tingly sensations, but when the really bad paraesthesia sets in, I don't know what to do with myself.

I don't know what to do with myself, and I don't think anybody else does, either.

2002-07-18T05:29:00.000-07:00

Oh! And I did officially get the invite to the bachelorette party, so I'm obligated to go. For a bit, at least. Plus, I'm going to the "meet-up" thingie tonight. Hey, I'm sick anyway, might as well exhaust myself, right?

2002-07-18T05:24:00.000-07:00

Well. Just lost the last post, don't know what happened, but one more thing to add to the already frustrating week I'm having. Nice. It's not enough that I'm not physically able to alter a dress, but I have to have all these Blogger problems. (Yeah, yeah, along with uncounted others, I know, I know....)

So. I saw Dr. Peterson yesterday, and started what I'm sure will be a round of Primary Care Physician antics. He ordered blood tests: thyroid, Lupus, and one other, I can't remember what. The thryoid will come back normal, because it always does - I don't know why he always checks, other than it's just protocol. Lupus, I suppose because some of my symptoms match; I just don't think it's going to be "It" for the same reason MS wasn't "It" - just not gonna be the first diagnosis out of the gate. Not that simple. I don't think he was paying attention to everything I was telling him - a lot of what is going on seems to confuse the doctors, they don't want to hear or listen to what I'm telling them. Nothing I'm saying seems to match what they already know, therefore it must either be in my head or not exist. It's not their fault, it's just not in their experience. That's my job, I guess, to make it their experience. Lucky me. More work, more struggle, more research. I realize none of them have the time to look into what's really going on, but on the other hand, they really should pay more attention to what I'm saying. Dr. Gauthier is good at paying attention - but he had to get there, and it took a few appointments for him to start paying attention, beyond what he knew of my pain. He had to learn to look beyond my depression and pain to realize that there was more going on. Dr. Sbei - who, by this time, is no longer even my neurologist - couldn't even focus beyond the AFP to realize there might be something else. Dr. Peterson is facing a sharp learning curve.

It doesn't seem fair to me or him, really.

2002-07-17T05:16:00.000-07:00

I finally managed to catch Trystan's nasty cough - the one he's had for the past two months, and we've taken him to the doctor for it twice. Spent most of the day in bed, sleeping (amazing, isn't it?), so have avoided too much lung-rattling, but y'know, did I need much more body antics on my plate? Then there's this deep, internal, aggravating itch inside my right ear, which no amount of rubbing, q-tip exploration, or plain old jabbing will assuage (and, hello, it makes me cough!). It just gets better and better.

At least I have plenty of excuses to avoid the Bachelorette Party tomorrow night. Oh, can I?

Sometimes I think I live for being a sarcastic bitch.

2002-07-15T07:55:00.000-07:00

Bonnie did find somebody else to do the dress for her, so that's the problem taken care of. Just thinking about it made me more tired than I already am.

I am just so tired lately, I feel like I'm moving through mud all the time. I'm a slow-mover.

2002-07-15T05:40:00.000-07:00

No wedding dress alterations, no stress. Initiating the SEP field - Somebody Else's Problem.

2002-07-14T06:52:00.000-07:00

Speaking of it being a struggle to get anything done - how to fix a wedding dress in a week, when I can barely do the things I want to do for myself? I was doing the fitting for Bonnie last night and it was all I could do to stand and pin, bend and pin, kneel and pin, sit on the toilet or bed and pin. Now I'm going to have to cut and sew and fret and try to get this dress perfect (because I have to get things perfect or it just isn't right) and stress doesn't help the way I feel.

And now I'm whining about it, which isn't pretty or becoming. Bonnie wants to look her best, and who can blame her? She doesn't have anybody else who can do this for her, and at least I'll be doing what I'm trained to do. Maybe if I just take a deep breath and do it and stop worrying about it in advance, it'll all be oh. kay. and I can get on with what I need to get done. Break it down into bite-size chunks, organize the process - which is what I do anyway - and it'll be manageable. I still have two Valium left.

2002-07-13T07:19:00.000-07:00

I'm sleeping more, I don't know if I'm sleeping better. I think I'm sleeping more because of the meditation - I can get my mind to relax, and I can get my body to calm down.

I've been tired, sleepy, lately. I'd blame the meds if it weren't for the fact that my dosage increased a couple of months ago. The grogginess should've happened then, not now. It could be the heat and the weather that's doing this to me, or maybe it's just the way I'm dealing with everything my body is throwing at me. Another way of dealing with the pain and the weirdnesses. It's a struggle to get anything I want to get done, done. Bugger.

2002-07-11T06:48:00.000-07:00

After a comfortable morning, smug in the knowledge that I didn't really hurt anywhere, my lips started to go numb, and then my whole body really started to sing. The itching was worse, but yesterday was more disconcerting. My lips were numb in that way that I could bite the insides of them and not feel it, and today they're a little swollen (no, no blood!). The rest of my body was comparable, it felt like my nerve endings were actually trying to extend through my skin, with the anaesthetizing effect of the numbness thrown in for good measure. Nice combo. It was as intense yesterday, if not moreso, as it has ever been. I was getting a little complacent, since it hadn't bugged me so much since the first big waves - and that's just it, yesterday it wasn't waves, it was constant, all day long. I was too tired to keep moving, so I pretty much had to just take it.

I laid down to take a nap, and as is pretty much habit now, started my meditation process to still everything that was going on. My muscles started aching, my skin started prickling, and I tried to let everything go. I did manage to achieve a state of detente with my body, I was meditating, vaguely aware of what was going on, monitoring the pain levels and keeping things in check; then it felt like there was a minor electrical storm on my skin - it literally felt like there was an electrical charge, sparks, on my skin, all over. It didn't hurt, but it was eerie. I won't lie, either - it was also kind of cool. With so much else going on that's freaky, funky and painful, this sensation was so different it was just weird. I guess it all depends on what one's basis for comparison is. Left-over body detritus, I can only assume, and I kept my mind under control and my body still while it wound down, and stayed still and managed some sort of sleep. I think. Sometimes, with meditation, it's hard to tell.

2002-07-10T09:06:00.000-07:00

Well, my appointment with Dr. Russell went pretty smoothly yesterday. No hypnosis, just talk. Interesting, as Little Bear would say. (Too much Nick Junior with Shannon pre-pre-school.) Either Dr. Russell is a very smart man, or he's been reading my blog, but he's caught on very fast to the fact that talking about my childhood won't go anywhere, anger isn't subsumed in my nervous system, and the whole funky feeling stuff isn't psychological. Not that it was said in so many words, but we glossed over it briefly. The itching was addressed, since the heat was brought up in the context that it must make the skin sensations worse (uh-huh, uh-huh). I like the weather when it's between about 68 and 82. Not that I'm exacting, or anything, but I do have preferences.

The face pain seems to have eased way the hell off. Just a vague memory in my upper right jaw, and some minor twinges on the left side in case I do forget. Here's to medication.

Today the itching isn't so bad, but then the temps have gone down as well. At 6am this morning I was almost chilly. I was trying to describe to Dr. Russell what it's like to try and scratch and not get any satisfaction ("I can't get no...satis...factshawhn"), and the closest I could come was likening it to scratching through layers of clothing, like scratching through jeans, or, like on my back, through a lined jacket, sweater, shirt, and bra. I can feel the scratch, but the itch isn't satisfied. At least I've mostly stopped gouging. It's all in the training. I mean, why gouge if there's no point in scratching? Rubbing is better, same sensation, no damage. And I've been keeping my nails really, really, short. The mozzie bites are receding in their ability to get my attention, so I'm more able to ignore most of the itching, which is the best way to deal with most of it.

Dr. Russell posed most of the toughies yesterday. He commiserated with my suffering, with all I had to deal with, and I stopped him. I told him that I didn't so much think of it as suffering, as moving through. Everyone has stuff they have to deal with, and this was stuff I had to deal with, and I was trying to learn to deal with it, get the coping skills I needed. So we talked about that. The last thing I want to happen is to make a martyr of myself - not that I think he was trying to, merely being sympathetic, and a couple of months ago, I would've agreed that "suffering" was an appropriate word to use. Now, I view it differently, and if I can see it differently, I think that helps. I had an image come up awhile ago, I'm not sure exactly when, but I do know it was while I was meditating. I remebered it while I was going over this recent session in my mind, just sitting and letting everything wash back through me: the experiences with pain, trying to figure it out, cope with it, live within this new structure is like wading chest deep across some sort of swampy morass. The bottom is uneven and muddy, the water is foul and brackish, the surface is clogged with all kinds of weeds and detritus, but every now and then I step onto a sandy bottom, the water is fresh and clean, and the surface is undisturbed. A major problem is that I can't see any shore, so I don't know which way is the best way to go; I just have to move through it, hoping that the direction I'm already moving in - sheer momentum, will be good enough. But I do know enough to enjoy those clean, pure spaces while they last. There might even be islands out there, who knows? Places to rest.

I don't think this is all about suffering, and another thing Dr. Russell brought up was did I ever ask, "Why me?" I just looked at him and asked, "Why not me?" I mean, of course I've asked, "Why me?" But it's a whiny question, and I've known it was whiny when I asked it. When you're hurting as badly as I've hurt, the first question you're going to ask is, "Why me?" It's our nature. Pain kind of narrows the Universe down to a pin-point, with one person at the center, being punished for unknown crimes, past, present, or future. Assuming Karma or reincarnation, that is.

"Why not me?" I don't think that my physiology is unique or special enough to avoid being bombarded by whatever it is that has ahold of me. Or, maybe it is unique and special enough to be bombarded by whatever it is that has ahold of me? Hmmm.....

I don't think Dr. Russell brought up the "Why me?" question to let me feel sorry for myself, but to do what I'm doing now, explore the questions. I think he was surprised, though, when I asked him, "Why not me?" Hah.

He also asked what I thought all this was for, if anything. If there was any reason for it. Actually, I don't know. Sometimes stuff just happens. If anything, it's to make me stronger, to prove that I can pull through - "that which does not kill me makes me stronger." And, boy (as I told him) if anything has tempted me to kill myself, this pain stuff surely has. But, there are people who would kill me if I killed myself. Hee! Besides (and again - Dr. Russell surely knows I'm completely mental by now - I told him this too), if I committed suicide, it would ruin my plans to live forever. Dying would solve the physical stuff, but I don't think it would solve the family stuff, I would still have to deal with leaving my family behind, and I wouldn't be able to deal with that. Stubborn as I am, I would feel like I had failed myself for not coping, for not working through everthing that needed to be done, for not dealing with things appropriately. So, Dr. Russell got a snapshot idea of my basic agnosticism, even though I do believe in some sort of afterlife. He knows I want to try and be immortal through technology (but not cryogenics, just simply living forever), and that I believe I simply have to much to do to think about dying.

And now everybody else does, too. Bananas, anyone?

(I feel like I had a conversation I could have had with friends at a bar at 2am after too many Long Island Iced Teas. I have had that conversation at a bar at 2am with friends at a bar after too many Long Island Iced Teas.)

2002-07-08T05:56:00.000-07:00

I thought I hated mosquito bites before all this stuff started. Now I hate them with all the burning power of ten thousand blazing suns. Okay, maybe I'll save that much hate for something a little worse, but I'll give itchy bites at least a five sun hate. I have several of them tucked right behind my right armpit, right where the line of my tank-top was, and they itch and itch and itch. I go to scratch, and I get no satisfaction. Oh, sure, they burn afterwards, like every other scratch I give myself, but no itching satisfaction, it is about to drive me completely mental. I thought part of the whole itchy bit process was the satisfaction of a good, deep, gouge along the bump of contention? Scratch the skin off the top so it becomes a potentially infectious site, stick some antibiotic cream and a bandaid on top, and you don't have to worry about it anymore.

....Um, am I the only one here who used to do that on purpose?

Now, along with the random, fictitious itchies, I've got real itchies, and who knows which ones are which? Well, I can tell by the swelling of the itchy bites, which I suppose is some help, but other than that, they both act the same.

And, also, we're dealing with record heat in SLC. Not by much, but it's still too hot to be alive. We're all doing our best to pretend we're not, really, in a metaphorical sense. Doesn't help.

2002-07-07T06:03:00.000-07:00

Thank Goodness Trystan is now old enough to help drive, or the trip to Blanding would've been a complete nightmare. Usually the numbness sets in pretty quickly after I get in the car, but with the shaking and the vibration of the New, Bad, Roads, my whole body was just one icy lump by Provo, and although any time I move a muscle, I can achieve feeling in a limb, it is a little disconcerting. And then there's the pain.

But the boys were actually pretty well-behaved on the way down, so that was nice. Shannon is now way past the age of needing a bottle or a diaper or constant attention, and on the way back, Trystan asked me how I did it, driving with all of them when they were younger (Shannon has tonsillitis, and did need constant attention). Now he can drive, he understands the stresses.

Anyway, I got a little sunburn and many mosquito bites, and it was very, very, hot down in Blanding, the first of which I don't feel, the second of which I can feel the itching in some places but I can't do anything about, and the heat adds to the general funky feeling. I stayed at a motel down there, since there was no room at my dad's (the boys slept in a tent there) and had some quiet time until Shannon got sick and stayed with me, and walked more than I was really comfortable with. Joann tried to tell me I was drinking too much Coke, which (she continued) leaches calcium from my bones, which is probably why I have all these problems. Aha! I was ready for that one - I had a bone scan about eight months ago while we were still looking at the ruptured disc thing at Pioneer Valley Hospital, I told her, and that showed that I had plenty of calcium in my bones, my bones were completely healthy, as was the rest of me with the exception of the bits that were causing me pain for whatever reasons. She was speechless in her little banty hen way. She said, "Well, then, I guess you can drink all the soda you want, huh?" Hee! The woman has no concept of science and the methods used therewith. Joann thinks she should capsaicin because someone heard it worked on someone else once awhile ago, and that is evidence enough. Anecdotal doctorin'.

2002-07-02T07:09:00.000-07:00

So I whined, and I complained, and I let Dr. Sbei know that the AFP was showing up on the left side of my face, yeah? Didn't seem to concern him overly. Just another day at the Office of Ree's Face, pain pushing through, whatcha gonna do about it? I was noticing the creep, almost intellectually. (Yeah, yeah, yeah! I know I've gone over it, just let me recap, okay?) Nothing compared to the right, but definitely not pain-free anymore.

I started noticing that the teeth on that side were all acting like they were tooth-achey. Not necessarily at the same time: sometimes one at a time, sometimes two at once; the tooth that Dr. Loosli worked on did a bit of hurting on-and-off, ran it's own Hit Parade of tried-and-true favourites. Then the pain changed from tooth-achey into something like biting on tinfoil - oh, I'm sorry: aluminum foil - where the sensation just shoots straight from the crown of the tooth directly into the jawbone. It isn't a big pain, as pain goes, but it does get my attention, and I certainly know I didn't bite down on any foil of any variety, aluminum or tin, and certainly not repeatedly. Top and bottom teeth, not selective. And it's not like the pain is constant, every day, all day. Or even more than once or twice a day, varying teeth.

This is what had me fooled, you see - I was starting to think it was a tooth problem again. Despite the fact that I had just barely been to the dentist and just barely had two cavities filled and everything taken care of for another six months. I've been going to see Dr. Loosli for four years, I don't think he's going to screw me up now, especially since I can now do fillings without nitrous. Even with AFP.

Ow. There it is again - this is what I was leading up to - I think the left side of my face is exhibiting more-classical Trigeminal Neuralgia symptoms than the right side of my face. Doesn't that just beat all? What I have to say about that is this: When it's happening, it certainly gets more attention than the right side, but the right side still hurts more, generally speaking. I can now see why it used to be called tic douloureux, as well. I wince every time it happens, my shoulder hunches up and I can imagine it looks pretty bizarre. I can also see why people used to get put away because of it - for the very reason mentioned: it must look insane.

I'm not going to bother calling the U of U Department of Neurology, going through their touch-tone system, and leave a message for someone (who knows who, at this point? Dr. Sbei is gone, and I don't know for sure if Dr. Steffens is going to pass me off like a Nerf football to the next resident or if he deems me interesting enough to keep me on his roster of interesting patients) with a random secretary and then wait and see if someone has enough interest to call back and recommend another increase in medication. The med increases don't seem to be doing that much, anymore, and in all honesty, I'm concerned with fiddling with side-effects right now. Cognitive difficulties. Not up to dealing. Right now I'm doing oh. kay. with the level of intensity, so I'm just going to see how things develop. If things go screamers, then we'll see how quickly I change my tiny little mind.

2002-07-01T07:50:00.000-07:00

Blargh.

2002-06-30T07:11:00.000-07:00

Okay, still harping.

I did a good meditation night before last, wherein I managed to calm myself, and when I came out - and I had managed to go to the place where there was no there there, if you know what I mean? I don't know if everyone who meditates goes there, or if it's just me. It's the place in myself where it's just blank. I don't know if that means it's unwritten or unreadable. Either way, it totally relaxes me, and I always come out totally relaxed and sometimes with new ideas, new ways of looking at things, stuff dredged up from the deep. Or not - I was calm, everything had stilled. The stress and tension had lifted, and the bod stuff was under my control, if only for a bit. I was able to be in a place where I could separate the disparate sensations, if I had wanted to, but I was too busy just being free of all the extraneous stuff and was enjoying being myself.

With the notable exception of the skin on my back, but I've gone so far as to completely ignore that unless it's actively burning at this point.

I don't know how long the peace lasted, but it's kind of moot, now. At least I enjoyed it.

Yesterday, I was free of stress at WalMart - I know! Just wandering around, not thinking about anything, just kind of free-wandering, not even shopping. Just meandering about for no apparent reason. Waiting for some film to be developed (turned out the Mystery Rolls were of the film I costumed: "The Edge of the World." I ended up being kind of the set photographer, but paying for my own film and, it ended up, the development of same, so this is why it took two years to develop it. Some cool pics, and I'm sure I'll share them with someone who cares at some point), but it eventually got to be a bit much - shopping does. It wasn't only the weariness, but that creepy feeling started overtaking me again, and having some point of reference to compare it to the stress, and very recently, and since this was not just one of the vague sensations, but almost a full-blown....and I don't want to say "attack" or "episode" because the words don't evoke how sneaky this thing is....it creeps, it sneaks, it nibbles at the edges of my attention until I finally have it's full attention. When I am finally noticing, I can't help but notice, and then I'll do almost anything not to notice, I feel like I could become a Whirling Dervish even if it means adopting a religion and changing my gender, just for the movement and trancelike quality. Hauling rocks around the garden for an hour or so in the middle of the afternoon when it's over 100 degrees and not noticing what I've done to my back till the next day. Just to not notice. If I notice, I feel like folding up like a dying flower, curling in on myself and withdrawing, disappearing. I hate it. It makes my body not mine anymore, it takes it away from me. And every time it zaps me or whatever is happening, it kills off some sensitivity somewhere, some other patch of skin turns to latex, rubber. Burning rubber, I guess I should say.

It's not stress that's causing the new things that are happening to my body.

2002-06-28T16:22:00.000-07:00

Just to harp on a theme: I can feel the discrete sensations. The stress running one way, the other stuff running the other. How's that for sensitive? I'm sure it doesn't do me any good at all to be able to feel it, and it's possible it's all in my head, so to speak. It's just that I'm fairly positive I'm not repressing anything, which would be the reason I'm expressing feelings through my body. Some previously unexplored emotion that I haven't dealt with, or somesuch. Tension and stress I can deal with once I recognize it for what it is - it's sneaky and it creeps, and I know how to grab it by the throat and beat it into submission once I catch the clue (sometimes I'm a bit more clueless than others, so sue me). Once that ebbs, though, the other is still left wandering around above the highwater mark.....

2002-06-28T16:17:00.000-07:00

Blargh. Well, stress definitely intensifies the sensations that've been bothering me, and some of the stress stuff is akin to the bod stuff, certainly. I feel stress and tension through my body in certain ways that are eerily similar, but it's like the feelings run in opposite directions, and when they're both flowing, the currents are charging back and forth in a way that is extremely unpleasant. Generalized stress/tension stuff: headaches, stomach free-fall stuff, I've talked about, but I also get some of that tingly stuff going on. But as I just mentioned, it seems to flow in a different direction. I told Dr. Gauthier that I have been keeping close track of the whole thing, trying to see if I can tell which is which and attribute the whole bridge-sway or almost-drunk sensations to subsumed stress or anger. Pee-see-kological stuff. And sure as Hell the stress makes everything else more intense. The pain, of course.

Which is why I try to keep a handle on the whole meditation thang. It just seems like there's a full-scale war going on, right now, for possession of my body and I'm not sure who's winning, because I'm not even on a side. That would be the dissociation talking. Too bad I've got all the plants planted, because I sure could use something useful to do. Maybe I should try painting those fishy luminaria-thingies I got last year at Michael's that I just ceram-coated. That ought to keep me busy for an hour or two.

2002-06-27T06:35:00.000-07:00

Well, I tried to meditate last night, and ended up repeating what I'd done with Dr. Russell. Ooh, ugh. Of course, I was able to control it, but it wasn't fun at all.

2002-06-26T06:47:00.000-07:00

I had a post on this last night, then I hit the wrong button and everything went Kablooey! Shit. Yes, "Shit." For those of you who are offended by my use of bad words, I apologize, because I do tend to use them a lot, they are part of my vocabulary. I think I make up for that by using a lot of other words. I like all my words, and will continue to use them on a regular basis. If you are offended by them, just try to censor them out and forgive me my wrongdoings for I know not what I do. Or something to that effect.

Anyway. I was going on about meditation. I have had the experience of being in pain in a dream, being aware of pain in a dream - actual pain, the pain I experience every day, not just dream pain, and because I had this awareness, I immediately went into meditation-mode to tackle the pain. It worked, I took control of the pain and continued the dream. I don't remember the dream, but I do remember the experience of the pain and the meditation, how I took control of the experience. Usually when I'm in pain during sleep, it simply disrupts my rest, and I end up tired and worn down. This is how it's been for the past year. I've managed to catch up on my rest in the past three or four weeks (well, not entirely catch up, but my sleep has been better - five to six hours of sleep a night), by meditating, however briefly before I go to sleep, no matter how my body has been acting. Or at least being mindful of my breathing, would be a better way to put it. Falling asleep would be an even better way to put it, it has been like stepping off a precipice into a deep, deep chasm. I didn't have any choice in the matter. My body had such a deficit that it just gave up and took what it needed. It's been a combination, perhaps? Last night was the first night in a while that my sleep has been disrupted, I woke up and actually went outside for a smoke at 1:30 in the morning; but then I didn't wake up till 6, so I'm still doing pretty good.

Another thing meditation has helped me with is the whole "waking dream" thing - not-quite-waking-up but wandering around still dreaming and talking to people while still in a dream. Kinda freaked Troy out once, I know, and slapped Matt's hand once. I have woken up with my face pressed against the screen door of our useless sliding-glass doors in our bedroom, having thought I overheard a police conversation. Weird stuff like that. But in the past week, I've been in the cusp between the end of the dream and waking up, waiting for the dream to end before getting up and moving about, just waiting for that moment to pass before getting up. In my mind, that moment can seem almost endless, and I could hear people moving about and talking (I had been taking a nap), but I knew I needed to stay still until the moment was over, or the dream would spill over. I had control. It was kind of pleasant, just riding that moment, sitting there, waiting for the dream to ebb....

I really didn't know such things were possible.

2002-06-25T20:19:00.000-07:00

I still feel funky, but I want to write about this while it's still sitting on the froth at the top of the mocha latte of my mind. Maybe I should go have a ciggie first. Yes, I smoke. I told you I was bad. At least Matt and I decided to limit our smoking to outside.

Anyway, before I do that, I do want to go over my session with Dr. Russell. He was trying to see if he could find an emotional trigger for the symptoms that I've been experiencing that don't seem to have anything to do with either the AFP or the neuropathy. He had me go under, and of course my legs went numb, and I focused on that. I could also feel some micro-twitching in my right arm and some in the right side of my face. He had me focus more on the numbness, focus completely, and as I did he asked me if I associated any memory or emotion with that numbness, and I couldn't feel anything but the complete heaviness in my legs. It felt like they were encased in cement, like they were stone, and as the session went on, it felt like they fused and became so heavy they were dragging me down, pulling me. I couldn't move, and the numbness and heaviness started to become actual pain. I felt like I was becoming a statue, and I hated it, I couldn't move, and it felt like there was something pushing against me, against my left arm, and my left hand started to twitch. I could feel myself frowning with effort and my breathing became laboured (I don't know if it actually did, or if I just felt like it did). Dr. Russell kept asking me for an emotion or feeling or memory, and all I could tell him was that my legs felt like they were encased in cement, that they were cement. I could barely speak, and he started me focusing on my breathing again, to follow my breaths and although my legs were numb, he told me I could still be mindful of my breath. All I could really feel, emotionally, was that I wanted out of my body, away from the feeling in my legs, to do anything to get away from the sensation; this is how I always feel when the various wacky symptoms crop up, I just want to get away from them and my body.

I guess what Dr. Russell showed me was that I could still stay with my body while this stuff is going on, if I manage to remember to breathe, to use my mind. I don't think he found what he was looking for, though, an emotional root to the problem, a psychological basis for these goings-on. I'm sure we'll continue to work on it, though. The fun continues apace.....

2002-06-25T19:52:00.000-07:00

I knew there was another word I was thinking of that I shouldn't have said in front of Dr. Gauthier. It was suggestible. Bad, bad, bad Ree-Ree. What I meant was that since I am now Master of Meditation (I can go into such a deep trance that Matt likes to accuse me of sleeping, since I snore and drool, but my defense is that since I come out of it immediately, rather than having to be "woken up" that is proof that I am meditating - or whatever -rather than asleep. Dr. Russell says I must need that deep relaxation. Hell yeah!), or at least pretty good at meditating (more later on what I can do with this sharp tool of a mind that I have - yeah, whatever), and Dr. Russell can put me under pretty damn easily, I am a good hypnosis subject. I can put me under very easily. It doesn't mean that I'll cluck like a chicken, or buy into the next Swamp Land Sale (mostly), it just means I'm a good subject, and a good patient for Dr. Russell.

Dr. Gauthier and Dr. Russell like me because I'm interesting and complicated, and I understand what they're talking about (when I'm not playing dumb with Dr. Russell because I'm being slightly intransigent and I don't want to talk about what he wants to talk about at that precise moment. Who me? Would I ever do such a thing? I can't imagine.....I told you, I'm a bad, bad, bad Ree-Ree.....) and I also understand the words that they use when they're talking to me.

I have to say something to justify my presence in their offices. Sometimes I feel like a ping-pong ball and they're playing some sort of complicated game, where they know two thirds of the rules, and I know the other third, and they're trying to guess what I know. Do I hold the upper hand because of this? I doubt it, but it's a fun metaphor for now. I feel a little funky.

2002-06-25T07:23:00.000-07:00

Whaddaya think of the new blog name? Is it too cute? I just hated leaving it as plain as "Pain Diary," it was too raw, and just wasn't me anymore. I wanted something that more reflected my bouncy personality and ultimate inner vivacity.

Uh-huh, uh-huh.

Whatever I gotta say to look myself in the mirror, right? Matt has also commented that the green is a little hard to read, but I personally like the green, so it's staying awhile. My apologies to those who may have allergies. If you like what you read, you'll stay for the content.

And back on topic: My dad called Sunday night, just to let me know he got Joann's message about the (negative) results of my MRI. He also wanted to remind me of a book he wanted me to read, one that he thought might have some answers for me. He couldn't remember, offhand, the name or author, but he knew that it had to do with systemic infection resulting from root canals and that the germs spread from the tooth throughout the body causing degenerative disease and it sounded just like what I am going through. He reminded me that all this started from the time I had the first root canal and told me I should just have the tooth taken out and everything would be fine. I argued that I didn't see how an infection in my mouth could possibly affect the rest of my body, or that on one side of my face could make the other side hurt, but I told him that I s'posed reading the book wouldn't hurt, either. I know that he was just hoping that he'd found something that would help me, and I promised him I'd try and hunt the book down and read it (by this time he'd lost his copy, anyway).

Yesterday morning I woke up clenching my jaw. The original tooth felt like it was riding on a pool of infection, and I started thinking that Dad must be right. I came downstairs and did my computer stuff, and then started running some searches having to do with "root canal infection" and came up with the name "George A. Meinig" and this article, Root Canals Can Be Dangerous To Your Health. I guess the title, if not the page itself, should've set off alarm bells, but I was in pain, and still giving Dad some leeway. I mean, I was hurting. Since my mind was a bit blurry (I know, I know, excuses, excuses), I was reading this thing and getting nothing but hooked on what the guy was saying, he was saying all the right things to me - it all seemed to fit, especially the bit where the infection was triggered by an accident, which was probably what hooked my dad, as well.

I told Matt to read it, and his reaction was that the guy was a huckster. So, at least one of us was awake. However, it was someone else's turn on the computer, and I had to go with Trystan to school (he drives, I come back, I pick him up, it's a thing), and the morning progressed to afternoon. I watched some tv, still mulling over the information and wondering if Matt was right, or if this guy was for real. We both figured it couldn't hurt to at least read the book, Root Canal Coverup Exposed (good second clue right there, huh?), and I'd found it used at Amazon for $6 plus shipping. I also figured I could do some more searching, get some background information on this Price-Pottenger Nutrition Foundation (Weston A. Price being the dentist whose research Weinig based the book on). So I found the website, and was stunned and not entirely surprised to find out it was everything Joann wold love about a Nutrition Foundation. I got out of it after a pretty quick tour, just to make sure I had some basic information, and started another search, this time on anything anti Price or Meinig and their research or conclusions. What I came up with was something that was on the original search (the back button is a wonderful thing), and it led me to "Holistic Dentistry: A Brief Overview" by Stephen Barrett, M.D. and
William T. Jarvis, Ph.D., an article posted on QuackWatch, the site maintained by Dr. Barrett. And thank all the stars in the heavens that he does, because yesterday I was seriously contemplating having several teeth removed.

I printed off one copy for myself, one for Dad, and I also found an article about Cavitational Osteopathosis, NICO, and "Biological Dentistry", which, frighteningly enough, is all over the information pages I found regarding Trigeminal Neuralgia and Atypical Facial Pain that I found when first trying to dig up anything on them after hearing my diagnosis. In fact, right here, at the Facial Neuralgia Resources: Atypical Facial Pain page, it mentions it, and posts a link. Oh, man, now I'm pissed. That was the first site I came up with on my Yahoo search. I'd dumped all my AFP links as unnecessary, because I thought I'd gleaned all the information I needed from them, and since I'm not a joiner, and not a blamer, I didn't want to be a part of their lists or message boards. Urgh.

Phooey.

Anyway, I also printed Dad off a copy of the article on the The Mercury Amalgam Scam: How Anti-Amalgamists Swindle People. Because Joann had all her fillings removed and replaced, and I think she did the same for Dennis and Dustin and Dale, if I recall correctly. And now Dad's buying into her fantasy-life and he used to have a clear mind when it came to all this bullshit. I mean, damn, he's the one who taught me that evolution made sense! That's kind of impressive while trying to raise me Mormon at the same time, dontcha know.

Now I've got an e-mail to write to Dr. Barrett, who replied to my thankful note yesterday.

2002-06-23T21:39:00.000-07:00

Geez. I had the thread of a thought, then lost it as Matt and Shannon wanted me to listen to the CD they made for Teagan, then there was dinner, then I got sucked into watching Dr. Strangelove again....managed to pull myself away and finally picked the thread up again. I was lucky, because this occurred the same day, it usually takes me a day or two or more before I remember what I was thinking about. As a matter of fact, this topic is something I've been pondering on and off, and tonight I finally remembered to write something about it. Which is why I was anxious to actually write something about it. Memory slippage is anxiety-inducing, but I am getting slightly better, I think. I'm trying, anyway. If that counts.

One of the side-effects of topamax is that one loses one's grip on vocabulary and the ability to use words correctly - a kind of aphasia, and in fact, if one ramps up the dosage too quickly, one runs the risk of actual aphasia. Naturally, when Dr. Steffens first mentioned this risk, Matt had to ask what the actual dosage-speed might be, but perhaps it's best not to mention that here. Ahem. Anyway, I have dreams where I can't move, can't speak, and y'know, these aren't situations where moving or speaking are life-threatening necessities, just situations where I would like to speak my mind, express myself, get something off my rather considerable chest. Lately these dreams, like every other dream I have, are extemely vivid and realistic.

Since I knew from the beginning that topamax would fuck with my words - and my other cognitive abilities - I have tried extremely hard in the past months, since I've been on it, to make sure I'm keeping my brain in shape. Making sure those wrinkles increase in depth and number. Anything and everything I have an interest in or a question about, I've tried to research and find answers for, just to make sure I have some information that I didn't have before. Unfortunately, a lot of my links went the way of the Dodo because they were located at The Rant, which may or may not ever resurface. I have some links in my bookmarks, but since a lot of what I used the links for were for fun and amusing arguments, I didn't like to carry around the links like trophies. That's just me.

Trystan wants The Dude for a scheduled gaming thang, so I'm going to logoff, but at least I got the gist down. Maybe I'll round this off tomorrow.....

2002-06-23T07:00:00.000-07:00

Having done a lot of thinking on this - why not, I have a lot of time, spare meg to devote to the task (metaphorically-speaking of course, I would never compare my brain to a computer, no way.....bbbpppptttt) because I can run cycles on this stuff and still do other stuff at the same time (I'm funny that way - I may not do the other stuff well, or prevent myself from causing myself accidental harm like dropping heavy objects on my feet, but that's the price you gotta pay for being me) and it is one of my favourite subjects, after all - I have had some thoughts. And, besides, I am bored with the varied subjects of my pain, my health, the weird feelings, and related aspects.

So: Given that I understand where Dr. Gauthier and Dr. Sbei (I'll get to Dr. Russell in a few) are coming from when they expressed concern about my depression a few months ago (Dr. Sbei brought it up first, since I spent my January appointment a complete wreck in his office), and Dr. Gauthier's first move (pretty much) was to get me on an anti-depressant, I think doctors may jump a bit too fast to assume psychological factors after, when I exhibit symptoms that do not fit in with what they expect from me. Now, I was a wreck, and I did need an antidepressant, or I was going to continue being a wreck, and it wasn't helping my pain any. I can honestly say that the pain I have now is no less than the pain I had in January, but now I have the tools I need to deal with it, rather than being panicked and terrified by it.

Nothing like feeling trapped like a rat on the sinking ship of your body to make you terribly depressed.

So I was on a whompin' good antidepressant and then the Next Phase of what I like to term the Bod'O'Rama kicked in, so I wasn't so much depressed, and in fact I think I was doing pretty good. Maybe I should check back a few weeks in the archives and see?...........Um..........Okay. I only mentioned it a couple of weeks ago, and it seems like it's been happening longer than that. I've had two appointments with Dr. Gauthier this month, and one with Dr. Russell.....No, that's right. Wow, my time-sense is just so out-of-tune that I'm a little confused. That's okay, though. Not a problem. I probably feel this way because it's June and the temperature is rising, and that's always disappointing; I feel the same way every year. Hah! I know the itching started a bit earlier than that, though, because I was off the antidepressant sooner, and Dr. Gauthier had me schedule two appointments in advance for this month. Anyway....

So we know I was depressed, and it was really, really, really hard to come off the antidepressant, I was a mess for a couple of weeks when that happened, and my first appointment with Dr. Gauthier after that was not a happy one, and I think that was perhaps not good for my psychological profile, either. Also, I had an appointment with Dr. Russell shortly thereafter, when I still hadn't adjusted, and that's when Dr. Russell started talking about my childhood, and I don't think that helped my psychological profile. Not that I'm vain about such a thing, or protective (okay, so I am), but c'mon, give me leeway for trauma, guys! 'Kay? Major pharmaceutical adjustment, not to mention

Somatic:
Function: adjective; etymology: Greek sOmatikos, from sOmat-, sOma ; Date: circa 1775 1: of, relating to, or affecting the body especially as distinguished from the germ plasm or the psyche
2 : of or relating to the wall of the body
[Merriam Webster Online]

upheaval, distress, weirdness, and general angst. This is as opposed to the psychological conditions either one might try to think of pinning on me during this whole process. (Not that I blame them, I know what they're going through, I'm a difficult case, confusing, complicated, and so forth. But this is me we're talking about, all right?) And it's not that my childhood, in particular was that far from normal that any abnormal psychological label needs to be pinned to my chart, either. With the exception of my mother being a complete whackaloon, everything should be fine. (Love ya, Mum!) I just don't see how being raised should be my torment. I'm too smart for that, and by now, both doctors should know that.

(I'm not smug much, am I?)

Which brings me somewhere else, kind of oblique (I love that word, and now that I remember it, I may start to overuse it, so beware!) - why does every little thing have to be blamed on something that happened in one's childhood? I know that things that happened in the past affect us, I mean, that much should be obvious. But what I see is that we should learn from that past more than be shackled to it in some way we have no control over. I've had some "There's something nasty in the woodshed!" moments in my life, and just to prove that those moments are exactly as momentous as they were in Cold Comfort Farm, I've let them be exactly as momentous as they were, used them for story-telling purposes, then let them go. These stories may become part of me, if I let them, but they only change me as I will, and only in a way that I let them. As I mature, I have more control over that, and I become more and more cognizant of that fact. What's interesting, is that I can go back and make changes in myself if I feel I need to - I am an unfinished product. I always will be, and that's what I like about being alive.

Why muck about with something like that? I simply don't buy into the idea that there are things that are hardwired. Yes, there are going to be certain proclivities, tendancies, paths of least resistance that are hardwired, but that doesn't mean I need to go tripping merrily down them if I see that they are not, perhaps, in my best interests, or in the best interests of others. Of course, stubbornness being one of my most stubborn hardwired attributes, it is sometimes hard for me to see certain things from different angles, so it can be difficult for me to make changes, but dammit if I don't try.

Dr. Russell has given me a very powerful tool in meditation, even if he isn't aware of it. I've been experimenting, and doing a bit of research - although, I have to say the research hasn't turned up much I haven't found out on my own.

2002-06-22T07:42:00.000-07:00

Huh. You know when I said I shouldn't get complacent? had a little reminder to remind me. Heh. Just a little one. It's been pretty calm, the past couple of days. Probably to make me think it's all in my head. Or, as I've learned from that site, a somatized disorder.

But then I reach 'round to scratch my back, because, y'know, there's one of them there constant, deep itches back there that drive me a bit bonkers, and nu'uhn. Well, except for the line of burning afterwards. Did I mention that? Probably not. There's so much I miss when I try to describe what goes on. So I satisfy myself with merely picking at what might be an imperfection in my skin. Well, it sure as Hell is an imperfection in my skin, now, let me tell you, yessirree Bob. Uh-huh. I try not to tear at any skin tags or moles, because of, well, the threat of skin cancer, but what if it's the source of the itch? What if, y'know, the itch stops if it comes off? You never know, especially if I'm in one of my half-dreaming, half-sleeping, deep concentration, kinda spacey states. I might be thinking about gardening or making a mask or contemplating taking over the Universe, you never know! And if I have an itch and I'm scratching and there's something standing in my way, well, darn it! I might just have to get rid of that something. If I'm stressed and, god and all little saints and demons forbid I might have a zit or two somewhere about my person, well, then you know those things are toast on wheels. Possibly with marmite. Yup.

Apparently I'm back on the itching cycle, whatever that means. I am trying to keep my nails short, although at one point I did let them grow a little long, and that was a terrible mistake. I don't even think there is a cycle, so that was a misnomer. I think it's more like peaks and valleys, and whatever happens to be in a trough or crest merely happens to be there, and whatever my mental state happens to be at the time, well, that's just me. I'm doing whatever I can to smooth that out, and physical activity seems to help, although as I have discovered recently, too much will sideline me very, very, quickly. There is a reason I was diagnosed with a ruptured disc. It is because I have one. Hauling rocks around the yard is not something I should be doing, no matter how strong my biceps and quadruceps are. Dammit if that doesn't piss me right off. Of course, there is that whole neuropathy thing, and the pain down my left leg (and sometimes down my right), so I shouldn't just complain about my back. Crap, crap, crap, crap, crap.

I am not small, feminine and delicate, and I don't want to have to act like it! Or like an invalid. I'm sick of it. Shit.

Which brings me to the point that I need to remind myself to talk to Dr. Gauthier about physical therapy. I also want to do yoga, which I believe I have mentioned before, but I want to mention it again, just to imbed it further into what passes for my brain. This isn't for you, dear reader, this is for me. I'm selfish that way. [Not that I don't relish the thought of somebody else reading this, but I don't kid myself, either. It helps to know somebody else might read this, but mostly this is for me to vent and to clear out some mental dust bunnies. But maybe also to show off my typing skills and writing acrobatics. I'm quite mental that way.]

I think I've given a lot of ammunition for the whole somatization thing to the docs, myself, by using words like dissocation and disjointed. Words that, I suppose, have more sense in a psychological context. I'm used to having words have more meaning, a broader sense, something outside a narrow definition in a given context. I guess that would be because of my background, perhaps because I was an English major, but more probably because words are richer to me, they're deeper, more full of life and meaning. I don't know if this means anything to anybody besides myself, but words don't just have their dictionariy definitions, by which you can argue logically and definitively their exact meanings and etymologies. Words are so much more than that. They have a life of their own, they mean more to people - they have layers and layers of history and psychological context. Just f'rinstance, we have etymologies. We have to know where words come from, what their genealogies were, what they meant before they meant what they mean now. Which is why I love, love the Webster's 1828 Dictionary (and I apologize for the Christian site, but whatcha gonna do? They went to the trouble with the dictionary, and hey, gotta thank them for that.....)

Dr. Gauthier and Dr. Russell listen for these "keywords," if you will, and I guess are....interested?....impressed?....pleased?....that I'd even be aware enough of what's going on with myself that I'd even use them, but still wary that I'm misconstruing a psychological event for a physical condition. So, okay, I know that there is enough psychological mess going on that I need some counselling, but hey, who wouldn't? But I also know that not everything that's going on with me can be explained away by simply saying it's psychosomatic. I think that, and this doesn't take points away from my doctors for trying, medical professionals are so busy with everything they have to do, that they don't see what there is to see. They can't explain everything, and thus a lot gets explained as psychological overflow. I'm sure that a lot of what they see in me is confusing and complicated, and I sure as Hell know that after as long as I've been trying to figure it out, it's tempting to just sit back and say, "must be mental." They're not, they're really trying not to, but it must be really tempting.

Maybe I'll have to start choosing my words a little more carefully, given the context?

2002-06-21T07:06:00.000-07:00

Oh! And Frazer, my father-in-law, sent me a link on what Dr. Gauthier and Dr. Russell will probably be considering what my mind is doing to me at this page. Looks interesting, although I'm not sure the definitions equal what's going on with my bod. Not that I'm a particularly objective observer.

2002-06-21T07:04:00.000-07:00

Hmmmm....You know, I didn't feel like that at all yesterday, not one bit. Not the whole body thing, anyway. Of course, I worked myself into pain, my leg and back, forgot my morning meds, so my face started in on me, but the whole body thing? Nah.

Got the itch back, and the insensate parts of my skin are still there. So I really have to wonder what's up. Is this an ebb and flow thing? Does it have to do with the pain, or does the pain push out the other stuff? Or is it how I described it to Dr. Gauthier? Some kind of circuit-breaking, crossed wires thing?

I gotta wonder.

But then, I wore myself out, yesterday, what with the garden and the working and the dragging of rocks. Oops. Sorry, Matt. (I'm not s'posed to drag rocks, it's bad for me.) One would think I would be able to sleep, especially since, lately, when I sit still I can barely keep my eyes open. Which is one of the reasons why I try to keep moving, in the generalized sense of the word. Find something to do, and just motor on....I took a nap around 5 pm, woke up at 6, or maybe it was 6 and woke up at 7pm? I'm not sure, but anyway, we watched Hannibal (good flick, by the way, discussed on the other side), and I stayed up as long as I could, which turned out to be about 10:30. Tried meditating, found some calm in the eternal swirl that is my brain, fell back out after half an hour. Tried to go to sleep, couldn't. Went outside for a smoke, wobbled about, fed the cats, and decided it was one of those nights, and took an ambien.

It was just one of those nights where I could tell I wasn't going to sleep. Tired down to the bone, eyes wide open. Leg hurting so bad that every position made it hurt worse, which shouldn't be possible but apparently is.

I promised Shannon I'd take him swimming today, so I'm going to take it easy. Which means no moving rocks or obsessing over the garden.

2002-06-20T06:59:00.000-07:00

Every time I get a little breathing room in between feeling stressed-out (headaches and the elevator-drop stomach) and the bridge-sway, body-drunk effect I start thinking, "Hey! I'm better, I don't have to worry about it anymore!" About that time, I start feeling all queasy and my body starts playing tricks on me again.

I've got to stop feeling complacent when I'm feeling good. It's bad for me, methinks.

2002-06-19T11:36:00.000-07:00

Info the whole world has been holding it's breath for: the MRI was negative, I don't have Multiple Sclerosis, or anything else the MRI would've shown, for that matter. (Everyone exhale.)

So, the detective work continues. Dr. Sbei and Dr. Gauthier have discussed me and my symptoms, my past history (and, perhaps, past histrionics? Heh) and given the medications I'm on, have eliminated the possibility of drug interactions and side-effects. Which leaves psychological effects. Presumably. After my appointment today, I think I convinced Dr. Gauthier that psychological effects are not where it's at. Mostly.

Which leaves us back where we started, not knowing a damn thing, and me with my body acting as if I don't own it at all. I have another appointment with Dr. Gauthier in a month, and obviously I'm going to continue seeing Dr. Russell, pursuing the psychological end of things (I'm not stupid, I'm sure there are some psychosomatic influences floating around in there, too), and Dr. Gauthier is going to talk to Dr. Russell about putting me on another medication to see if we can't mitigate some of the waking-dream kind of symptoms I'm experiencing. I asked him (pleaded, actually) to try and see if he couldn't find something that wouldn't make me put on weight, since I've managed to lose ten pounds, after everything and all. And I pointed out that I am not as depressed as I was when he last saw me, so that is a plus.

Fingers crossed.

I think I laid out, more clearly this time, my symptoms and so forth. I was much calmer and definitely able to use better words to describe what is going on. I told him that was keeping a log (diary) of what was going on, and I also told him about what Dr. Russell and I were doing in our sessions, and how the meditation and stuff had helped with the pain. I also told him that Dr. Russell had changed focus from the meditation to talking about stress and anger and how I dealt with that, in regard to what my body is doing now, since the meditation is becoming harder for me. I am finding some space to do it, it's just hard to sit still and find that space without a twitch coming along and ruining any peace I might find.

Twitch, twitch, twitch, twitch.

Twitch.

2002-06-18T14:55:00.000-07:00

The closest description I can get to the way my body feels (right now) is a pre-drunk buzz. Not the pleasant release of tension in your mind - oh, that it would! No, my mind isn't affected (besides what I assume are the cognitive affects of the topamax), but the way my body feels when I'm pleasantly buzzed on a couple of drinks, before I get just a little tipsy. The point where I'm saying, "My teeth are numb." Well, when my teeth aren't hurting from the AFP, they are numb. The rest of my body is tingling in that pre-drunken "whoopsy!" stage.

And I am get more clutzy, my balance is off, which Dr. Gauthier thinks is also a side-effect of the meds, but which I think otherwise, since my balance has never been that good and has deteriorated over the past few months. Standing up throws me off, fer crissakes. I bump into doorways, and getting up in the morning has caused some bruising which mostly goes unnoticed since bruising has always been a part of my life (clutzy am I - there are many reasons I took ballet as a child, loving it sincerely being the main one, the hope that I would learn to not hurt myself as often being secondary in my parents' hearts). I must've dropped something heavy on my foot yesterday, because there's a nasty-ass bruise on the top of my foot today. Do I remember what I dropped on my foot? Hell no! I vaguely remember hurting my foot somehow, but not what, and not when. This is the kind of stuff that's happening constantly. It's happening so often that I instantly put it out of my memory, or I don't notice it in the first place because I don't feel it. That's kind of freaky, if you see what I mean?

Back to the whole drunkenness theme (ReeWorld - Segues A Specialty!): My body acts as if I'm drunk, the coordination (the lack thereof, I should say), the lethargy, the whole wacky package. I feel like I did the first time I got drunk: I want to get out of my body. I fucking hate it. I want to escape, I can't stand it, I don't understand what's gone wrong. My body wants to go one way, I want to go another, it's a constant fight. My body wants to lie down and give up halfway through the day, my mind is busy making plans to learn new things and do stuff in the garden, or finish projects I started days, weeks, months, years ago. I sit on the couch and my head starts wobbling, and I have to get up and start compulsively doing something.

Or obsessively doing something, whichever way you wanna look at it.

I miss the feel of real sensation on my skin.

2002-06-18T06:58:00.000-07:00

Surprise, surprise! Kathryn called me back last night, and I was informed that she'd called last week,while I was taking one of my infamous naps wherein I dream the entire time, wake up thinking I'd slept for eight hours thinking it's morning again, only to discover I'd been sleeping for fifteen to thirty minutes (bummer!). Anyway, I didn't get the message, and when I questioned Matt, he was as surprised as I had been.

Musta been a boy.

So. Kathryn listened to what had been happening to me, and asked me to call her when I got my diagnosis, or at least got info on the next step of diagnostic procedure (which is, as we all know, my prediction). I guess that is her way of being supportive, and I'm just whining when I whinge about not getting any sympathy or whatever from her. I'm just really, really, really frightened right now. Fwightened little wabbit. Hah! Rabbit is not something I idenitfy myself with, although a trembling little bunny is something close to what my psyche is going through. (I am trying really hard to send the crying part of me to the fluffy pink-and-purple teen bedroom-of-my-dreams to bawl her eyes out whenever necessary, and a lot of times this has been working. I can turn up the music really loud, cuddle up to a nice lavender chenille through, throw my head back against masses of overly-embroidered and over-stuffed pillows, and just let go without frightening anybody or being accused of being depressed. It really does help to have a vivid imagination.)

We had a good talk, and I told her what Dr. Gauthier hinted about the implications of the MRI, and possibility of a spinal tap. Dr. Russell discussed it more openly with me, as he felt the symptons, as I described them, were pretty close to those of Multiple Sclerosis. Which, of course, they eliminated way back after they took the first MRI over two years ago. (Don't mean a thing, being over two years ago, but hey, one must keep these little hopes to oneself.)

Then, of course, there's always Parkinson's to worry about, which is what Granddad had. I hear some of my symptoms match.

I am sure as Hell comfortable, at this point, in saying that not all of my symptoms are psychosomatic. I'm sure some of them may be, but stress from the others would be a good trigger, huh? I'm just a bundle of fritzing nerves, all mis-wired and mis-firing. Shooting off in all the wrong directions, and some not shooting off at all. Oh, the fun!

2002-06-17T06:25:00.000-07:00

I know Dad's upset. It was just hard to have him not talk to me about it right then. I know the reason he can't help me right now is that I'm his little girl and he doesn't know how to help me right now. He'll find a way, even if it's not talking about it.

I don't know why Kathryn can't talk to me about it. I've never been about to quite figure that out, although I have theories. She'll talk over and under and around it, but I have never felt like she's actually talked about it.

Huh.

2002-06-17T05:38:00.000-07:00

I guess physical exercise is one way of pretending to ignore the signals my body is giving me. Of course, the consequences of that is I end up shattered and no good to myself or anybody. I worked on the garden for I don't know how long last night. Got quite a bit done, not that you can really tell, well you can, but incrementally. Hah. I have plans, dontcha know?

I got some sleep, though. I've managed to stretch my six hour sleep cycle out for a week, which is good. Usually I just get that one night of six hours of sleep, and then the increasingly small number of hours of sleep. Sure, I've been doing this by wearing myself out each and every day, but who's to know? Or maybe it's simply to do with the way the whole thing has been changing? It's not like any of this is predictable, or that I'm particularly married to the fractured slumber patterns. Hell no. But I wouldn't say I feel more rested, precisely. And I do wonder if I'm not getting up in the middle of the night, anyway. I'm not afraid I'd do anything dangerous if I was sleep-walking, at least not to anyone else, but I'd be seriously confused if I woke up in my pajamas (another good reason to wear them, in my opinion) in the middle of the street, if I had decided to go walkies.

Still, I feel quite satisfied with what I got done in the garden, and I am full of plans with what to do next.

I called Dad last night, to wish him Happy Father's Day - he finally got back from Michigan, after he and Joann had been looking after Joann's father who had suffered a recent fall (he's 92). They'd been gone a month, and just got back Thursday. The boys all spoke with him, and we caught up on all the generalized stuff, and then I told him about what was going on with me, healthwise. I don't know, I guess I expected a bit more support from him. I know there's a lot that he has to deal with right now, and maybe my stuff is a little too overwhelming, but I just somehow expected something more. And I know he just got a call from someone who wanted him to go to Monetezuma Creek to look at a horse, but I'm his daughter, y'know?

Kathryn is kind of acting the same. I haven't heard from her since I told her that I was getting the MRI. I tried calling her last night, and of course got her voice-mail.

I'm crying and can't even taste the salt in my tears.

2002-06-16T06:46:00.000-07:00

One thing I've noticed over the past six months, which I think is one of the most disturbing things about this whole mess - and which just goes to show where my priorities are: my typing is getting worse and worse. I just noticed two obvious typos in the last post which were painful and embarrassing to me. I don't know if you could even call them typos, since they were errors in syntax and grammar. Grrr. Aaargh. I do that a lot. I think it may be a result of the topamax, which has a high rate of word-type intererence (and yes, there's probably a word for that, I just don't know what it is right now, goshdarnit). Yay, me.

I am getting back on top of my vocabulary, somewhat; I managed to pronounce anthropomorphize after looking it up. Just one of those things I finally remembered to do. My problem was I kept adding an extra "o" after the "ph" which was entirely unnecessary and kept throwing me off. I also finally looked up "palimpsest" after reading it a few years ago in one of Neal Stevenson's books (The Diamond Age, I think). One of those words you think you get the gist of from context, but that you're never quite sure of. I had to be sure, after I brought up the concept with Dr. Russell, so I did look it up on OneLook Dictionaries, my favourite, one-stop dictionary look-up joint. And it was as I had gathered, although I think the concept is much more richly deep than the plain definitions would tell you.

My back and my legs are bothering me, pain-wise; my right hand has been twitchy - the fingers - which is a new one. My right leg was jumpin' like a dead frog under electrical stimuli during the MRI on Friday, I forgot to mention. Twitchy, twitchy, twitchy. Just mild, so far, I guess. No one notices but me. It sure felt like my leg was dancing all over the place, but Matt said he didn't notice anything. It felt to me like it was moving around on its own, like it was shifting without my will. I thought for sure someone would notice something like that. Of course, I could've had some dream-leakage, too.

Isn't it interesting that dreams only last seconds? I'm sure finding that out, with this dropping in-and-out of dreams so quickly.

2002-06-15T07:07:00.000-07:00

Oh, great giggling gods. The experience goes from really bad to "Yay! I have valium!" to last night. Nothing to do with any putative diagnosis, of course, since I haven't been "spoken to" by a medical professional, yet. I mean, not one that can discuss the pickys with me.

I'm going to be mean to the docs for a bit, I'm sorry: Ahem. "We must not say anything about what these magnetic resonance images show, because if we did, it would reveal how easy it is to deconstruct the pictures in the first place, and we would not be able to command our massive salaries." I know, I know. That was beneath me, and perhaps untrue, as well.

Hee!

Anyway. So my appointment was for 6pm, and we got up there in good time, and I filled out the paperwork nice and slow because I was getting overwhelmed by one of my little bridge-sway sensations, body overcome by whatever it is that overcomes it, on top of which I was so stressed out my neck was rigid with...what is it? Oh, yeah, I think it's fear. Tension headache so tension headache it almost didn't hurt, stomach so flip-floppy it was like in free-fall. I took my 5mg valium like a good girl and felt a little more relaxed, but I didn't know if I was that much more relaxed, when I followed my nice radiologist, Lisa, back into the MRI room. I told Matt it would be all right for him and Trystan to go ahead down to the cafeteria to get something to eat. (Trystan was with us so he could drive us home.)

I think we got half-way through - well, I'd been in there half an hour, anyway, when I started freaking out. Couldn't breathe, I started feeling too hot, way too closed in (hah!), and I asked Lisa to pull me out. I was good way to a full-on freakout, but once I was out I managed to calm down. She asked me if I wanted to be rescheduled, but I knew that if I had to come back, it would only be worse. So, they paged Matt, and we waited. There was another patient, and we waited about fifteen minutes for Matt (who didn't hear the page), and then another hour to wait for that patient to get done. I, naturally, took another valium.

This time, Matt went in with me. About every pass or two, I asked Lisa to pull me out so I could get out. I would take a sip of water and know that there was some out out there. Claustrophobia is not cool, and neither is being enclosed in a space where you cannot move, nor is being in tremendous pain and you can't move or adjust your body - much less your head, the focus of the MRI - to alleviate some of that pain. Combined, the experience was a nightmare. I remembered my breathing mindfulness, I remembered my meditation, and I managed to lose some of the passes and some of the noise, even lost some of what happened in the tube, but when I came "out" of the meditation or sleep or whatever you want to call it, it made it ten times worse, which is why I ended up panicking and wanting to be pulled out of there. I was so fortunate that Lisa had enough patience and presence of mind to listen to me.

And I was lucky that I had enough forethought to get that scrip from Dr. Peterson earlier this week. Sheesh. I can only imagine what would've happened if I hadn't. Sedation would've been the only answer, and I think that'll probably be what happens next time, as the pain gets worse.

I think I have an appointment with Dr. Gauthier next week - the 19th? - I don't know if he'll have the results, or if he'll be able to discuss them with me. Marge said Dr. Sbei will be back on Monday and will give me a call, but I doubt he'll have the results by then. My biggest concern right now, I guess, is that the MRI will show nothing, again! and I will be left to think that I'm having either a bad reaction to one of the meds I'm on or that all this is just a function of my demented and deranged psychology.

Ooooh, the fun.

2002-06-13T18:23:00.000-07:00

Just passing the time, waiting for the MRI. Woo-hoo, that's the excitement in my life.

I'd like to think there's going to be a positive outcome from this, "positive" meaning some sort of diagnosis or lacking that, a clean bill of health (hah!). But I really don't think so. I think there are going to be more questions and more tests. Whatever is going on with me isn't going to be pinned down with an MRI, this oily little beastie doesn't want to be known, that's the feeling I get. I know, anthropomorphizing is probably bad, but hey, what else is a person to do? Gives me a bit more of a target.

Anthropomorphizing is something that just comes naturally to me, anyway, I can't help myself.

2002-06-12T05:37:00.000-07:00

Went in for two fillings, yesterday - oh, the joy! Poor Dr. Loosli has been through my unholy fear of dentists, and very patient, listening to me work through my experiences with the dental nurses in New Zealand.

I am sure that dental technology there has caught up with most of the civilized world, but when I was a kid, socialized dentistry and all that implies was a horrible, horrifying experience. Especially since I was not genetically blessed to begin with. Let's start with no anaesthetic, and low-speed drills, work our way through low-paid women working on-site at the schools and go from there. Oh, the nightmares it gave me. Dr. Loosli has managed to get me off the nitrous, and that's something of an accomplishment, let me tell you. Although, yesterday we did have to do some mouth-stretching exercises that I would hesitate to try on a horse.

See, and dental appointments are stress situations for me - if it weren't for the fact that I know pretty much everyone at the office, there, now, and that I can make Dr. Loosli and Gladys giggle (and they made me giggle so hard I almost choked), I'd still be on nitrous - so I went in prepared to try my meditation and visualization stuff. Especially since I knew a couple of injections were going into the right side of my face. Wow, that hurt. The cavities were located in pretty much the most awkward places they could be, so the session was long, and by the middle, boring. Dr. Loosli and Gladys could talk (and got into a pretty heated argument; I was on Dr. Loosli's side, but that's just me - usually I'm on Gladys's side, so you never know with these things). Anyway, part-way through I guess I was kind of sleeping, because I woke up in the middle of one of my waking-dreaming things again. I don't think I'd been sleeping very long, but it was very, very odd.

In the dream Dr. Loosli and I were searching on the internet for tooth colours for my new caps - and yes, I will have all my teeth capped eventually. Bad teeth, bad, bad teeth. The enamel just isn't what it should be. Too many high fevers when I was young, and I think antibiotics had something to do with it, but mostly I think it was just bad genetics. Anyway, again. So, we were cutting and pasting (literally) swatches of tooth colour onto my teeth to see if they'd work. Not much of a dream, but fitting under the circumstances, and I kind of came to thinking that's what we were doing.

Hey, it's better than the drill.

In other news, I feel almost normal this morning. This is very good. The whole thing swings and sways, like a swinging bridge over a deep and wide canyon. Although I don't know if it's attached to anything on either end, it's hard to tell. Right now I'm in a smooth patch where it doesn't appear to be moving, but I'm keeping my eye out for sudden jostling motions. And holding on to the ropes.

I saw Dr. Peterson, yesterday, too. I've lost ten pounds, officially. Wee-hoo! Had to get a prescription for some valium for my MRI. Can't do the coffin-thing without it, I'm afraid. I could've tried meditation, I s'pose, but I didn't want to risk hopping out of the thing halfway through. I also had to get my handicapped placard application. Another bold step, another six months, hoping this will all be over by then. Uh-huh.

Uh-huh, uh-huh.

2002-06-11T08:12:00.000-07:00

Dr. Russell asked me, yesterday, about whether I had, in the past, funnelled any emotion through my body before. I asked him what he meant, specifically. I mean, yes, I did know what he meant, but I wanted to know what he was looking for....I'm psychic, but not that psychic. Har. Anyway, he mentioned tension headaches and stuff like that, and since that had been what I was thinking of in the first place, and since those have been one of the (previous) banes of my existence, it made sense to discuss them, along with my nervous stomachs (dating situations, dental nurse visits in primary and intermediate schools, serious talks with Mum and Dad, those sorts of things). Finals were a bitch for the headaches, it seemed like I'd get them from the start of finals through to the end, about two weeks if you count personal extruded time, not actual time.

I'm just sayin'.

I told Dr. Russell that I was trying to compare the current litany of symptoms to my usual stress reactions, but they weren't fitting. The symptoms are way too histrionic (although I didn't use that word), my stress reactions are so much more mundane. I don't know if I got that across to him, but since I woke up this morning with a tension headache (dental appointment this morning), and I have been having them pretty much consistently for the past week (now, why would that be?), I feel I'm in a position to make a comparison between a tension headache and everything else that's going on.

The tension headache, although bothersome and irritating, is definitely stress-related. I can tell. I do have tension in my neck and upper shoulders. Stress-related. Everything else is....different.

The difference isn't even that subtle.

Well, at least I think I've got that one sorted. Maybe.

2002-06-10T17:02:00.000-07:00

Had an interesting session with Dr. Russell today. He's taking the psychological corner of the triangle of questions regarding my symptoms. We finally got to the "let's talk about your childhood" bit that I have been less-than-enthusiastic about from the start. I had been hoping we'd never get to it, because I don't think it's really pertinent.

What do I know, though, ay? After all, it's only my brain and emotions we're picking to pieces.

I just find it difficult to believe that I'd unconsciously sabotage my body so horribly. I mean, the things that are happening are so mean and so seemingly guaranteed to make me crazy, that if it is a psychological problem, I must have some sort of deep-seated self-hatred to do this to myself. I don't see it, honestly. Especially since I've been trying in the last few years to work through stuff on my own to make myself a better person. Y'know, less self-hatred. Given the state of the world, and the fact that we all must bear some free-floating guilt simply for the fact that we're alive and given the fact that we obviously have access to things like computers and, uh, I don't know, food, I think I'm doing pretty damn well. Except for being chronically weirded out by my body, naturally.

Shit. Maybe I'm missing something obvious. Dr. Russell wants me to try and access my anger (we discussed that during our session, the fact that I've tried to tame it over the years because I have tended to be pretty hot-tempered, a smart-ass, and have unintentionally hurt the feelings of others because I've been too busy trying to prove how smart I am - of course, once I realized I was acting that way, I went the opposite direction and became what was seen as shy and retiring until folks saw me as stupid, until I had to prove how intellectually superior I was, and thus the cycle began again. Things like this I've tried to fix). He didn't try to do any hypnosis with me today, and he did mention that it must be very hard for me to meditate with all this going on, right now. But he said he did want me to try, during meditation, to see if I could access my anger, and try and figure out what it was all about. I don't know if that's a very good idea (I think I'm afraid of what I might find, but I'm always afraid of what I might find, that's nothing new), but I guess I can give it a go. At this point, anything is worth a try, if it's going to help me avoid feeling like I do.

I left a message for Dr. Sbei this morning, trying to explain, again, about the feeling in my skin - that it's more like a rubbery feeling than anything else, although the numbness and tingling are involved. I felt like I didn't explain it very well last week. We did schedule an MRI at the U hospital for this Friday, so at least we're moving more quickly, but he feels that the meds are to blame. I'm sure that I am experiencing side-effects from the meds, but it's so hard to extricate discrete symptoms from everything else - how to tell if one is due to side-effects, and one is due to something else? I think that all three reasons Dr. Gauthier gave me for the symptoms I have are involved, but how to tell which is to blame for what?

And does it really matter? At this point, I just want a good night's sleep, and some reprieve.

2002-06-08T06:11:00.000-07:00

I must note that the scabs on my scalp are only very small scabs, as scabs go. I in no way live up to any prime example of grotesquerie that would put me on the Jerry Springer Show, more's the shame. And, now I'm realizing what I'm doing, I've managed to control myself and the scratches are healing. Hair-colour is way more important. Besides, it simply feels too weird to scratch and not have the itch satisfied.

Oh, let the last sentence be a metaphor for so many things!

My MRI is set for next Friday. Woo-hoo! I'm seeing Dr. Russell on Monday, I don't know how I'm going to explain to him that I've been slacking off on my meditation. I don't know how I explain it to myself other than that my meditation just seems to set off twitching. I don't like twitching, it scares me. On top of the twitching, I seem to jump right from the breathing mindfulness into visualisation, which is okay, since that takes care of any pain I have (great for what ails me), but then I go from there directly into REM sleep and that, lately is definitely bad, since I don't seem to be able to distinguish between dreams and reality, lately, when I wake up. I go wandering around the house still thinking I'm in the dream, and it's disturbed a couple of family members.

Not to mention the cats.

Sleep deprivation is still not cool, but I don't know, anymore. I wake up stiff and sore, because I haven't moved all night, not rested from sleep that's been interrupted by pain, dreams that involve pain and itching and twitching, waking that involves dreams, and I don't even know if I am awake. I have a couple of good hours in the morning when I feel like I can actually think, although that may be a delusion, and then I try to get something done later on in the day, but by mid-day, I'm toasted and all I can do is sit on the coach and watch tv. I don't dare try and take a nap, because last time I tried that, I had an hour of dream-filled sleep, thinking I was only dozing. I woke up, still full of the dreams, and started yelling at Troy and Shannon for stuff they hadn't been doing. Were they confused and upset? Did I feel like an idiot and completely guilty? Oh, you betcha.

Then there are the dreams where I feel paralyzed, I can't move at all, I can't speak or scream. There may not even be any danger, just a situation I want to get out of, but I can't speak, not even to argue. I just have to sit or stand there and listen. Awful. One night I guess I was dreaming about sirens and listening to cops talking to some guy in his car over a bullhorn, and I thought it was on our street, and I woke up in the armchair, kneeling on the arm, with my head pressed up against the screen, trying to hear them, telling Matt to come see this. Of course, our bedroom door was closed, everything was dark, he was downstairs. I had no idea how I got there. I was really confused, but everything in the dream was so clear and real.

This kind of stuff is pretty wiggy.

2002-06-07T06:38:00.000-07:00

My body, the Next Plateau:

I have seemed to have reached the point - and this may or may not be the case, depending on whether or not I'm completely out of my tree - where, instead of feeling rubbery all over, I can detect areas of feeling, on and off, if I'm careful and paying attention. I kind of do a body check every now and then, just to see if I can feel anything on my skin, in the hopes that things change. The skin on my back is a loss. There's just nothing there. Matt keeps trying to scratch, and I don't get no satisfaction, which is a crying shame, because I used to feel like a cat who'd just trained her owner to find the right spot. Oh, yeah. If I knew how to purr, I'd be purring all the time. Now, nothing. It's like moving, well, rubber. Latex skin suit.

Bummer.

Most of the skin on my legs - it's weird, the feeling moves around, in patches. Sometimes one part it's good to scratch, other times, it's the same as my back.

My scalp, I have to be very careful. It itches, and I scratch a lot (well, now I just rub), but I've gouged, and now I have scabs, which is very bad, because it's time to colour again and I have this groovy plum dye that I picked up at a beauty supply store. Argh.

The itching on my back is maddening, because when I try to scratch, I get nothing, no joy whatsoever. Not only does the scratch not help, the itch moves. Not just your regular "moving itch" but it'll just not be there when I go to scratch, or move deeper. There's no way scratching will help.

I get these sensations like water is dripping - sometimes just a cold drop of water - on various parts of my body. Of course I check (I mean, at this point, who knows? Maybe I've wet myself?), but there's nothing there. Lately this sensation can change into a deep, burning, bitter (I don't know how else to describe it) itch. Something that is deep in my muscle. It hurts, it burns, and it itches at the same time. Just a line of fire and itching, like someone drawing a thread of 7.3 acidic string through my flesh.

It's been interesting to note the differences in sensations between the left and right sides of my face, now the left side has decided to join in the AFP fun. At first I was a bit panicky, true, but since that side hasn't quite reached the same levels of pain and misery, yet, my academic side has been observing the evolution objectively. This, in itself, is different from everything else that's going on. Everything else has been driving me to the giggling academy.

Weird.

2002-06-06T05:49:00.000-07:00

ZZZZZZZZZZZZZZZZZZBBBBBBBBBBBBBBBBBTTTTTTTTTTTTTT.

2002-06-05T06:00:00.000-07:00

Been playing ring-around-the-neurologists yesterday. Finally managed to get through to Dr. Steffens' secretary, only to find out that I'm still under Dr. Sbei's bailiwick (when does he graduate this month, exactly?) so she transferred me over to Marge, his secretary. Left a message on her voice-mail, another one of my confused, rambling messages, which I'm sure didn't help matters.

(Although, it does explain why Dr. Steffens' secretary didn't answer the messages I left for her, earlier. If I'm not "officially" under Dr. Steffens' direct care, yet, I'm sure getting the message to Dr. Sbei takes time, probably more than I am comfortable with right now.)

Marge did call me back fairly quickly, yesterday, so that was good, and once I explained some of what I was going through, and Dr. Gauthier's concerns, she promised to have Dr. Sbei get in touch with me as soon as possible, and have him call Dr. Gauthier. Dr. Sbei called me late yesterday afternoon. He is really good that way, even if sometimes it takes him a while to understand what I'm trying to explain to him. He does have a bit of a stubborn streak in him, if he's got an idea about what's going on. For example, even though Dr. Steffens had expressed concern about the AFP pushing through the meds, and that is why he wanted another MRI done in October, Dr. Sbei thought that doing an MRI now wouldn't be positive. Of course, I don't really think so either, but hey, man! At least give me something, here. Especially now. He didn't want to go for the spinal just yet, either. I can see he's being conservative, but dammit, I want to get this stuff over with, and try everything we can do to find out what's going on.

Of course, I forgot to tell him about the twitches, but if he gets in touch with Dr. Gauthier like he should, he'll find out about them. The twitches are what tip Dr. Gauthier toward the central nervous system diagnosis. Fun, huh? I should probably at least call and leave a message about them, too. Give Dr. Sbei all the info.

Wee-hoo.

2002-06-04T07:40:00.000-07:00

So it's been a while since I've blogged, oh yeah. Reasons? I've got reasons, baby. First one is we got the DSL cut off and thus I couldn't get online to do so, then we got a new Dude (translatation: computer), and I've kind of stayed away from the flock of geeks that is my family to give them time to play with it rather than fight for time on the machine. Thirdly, I've felt like complete and utter shit for the intervening passage.

I s'pose the last is good enough in and of itself, but I do like to have all my bases covered, yes?

The lortab-like symptoms that were bothering me earlier, have ratcheted up so far that I feel like I'm losing my mind. Dr. Gauthier says that that could be one of the reasons I'm experiencing those symptoms - pee-see-kologically-induced symptoms, that is. He would never say I'm stark, raving mad. Completely barkers. Loopier than Space Mountain. Har. Of course, why my mind would eat my body up like this is a question for the experts, but it would be interesting to find out. The second reason for the symptoms would be chemical - a reaction to the drugs I'm taking. Since I've been taking them for quite some time, maybe my body is just fed up, has built up some sort of toxic reaction, allergy, or is unleashing a massive dose of side effects I wasn't feeling at first. Huh. More interest for those who may be interested. I feel like a bug in a glass jar. The third in the trifecta of answers (should there be more? who knows?) would be that there's some sort of central nervous system thingy gone wrong. Yay, me! Something is shutting down, or gone into overdrive, or sick or infected, or something. Oh, goodie. I look forward to more ambiguous answers and discovering that there's not really much anyone can do for me.

Do you really think, after all this, there will be any answers at all? I sure don't. If they don't put me away in the nut-hatch for scratching great big, gouging holes in my scalp (I didn't mean to, honest, I just didn't realize what I was doing, I couldn't feel it), they'll tell me I'm "complicated," that's there's no "magic bullet," and that we'll have to work out some sort of medication regimen that I can tolerate, and that I'll be "coping" with this for the rest of my life.

Well, I would like to see one of them fucking cope with skin that feels like latex - no feeling at all - itching so deep you can't get to it, scratching so hard you bleed and don't know it until you see the blood under your nails. How do you explain to some one, anyone, how it feels to have twitches so deep they roil through your lungs and chest? Through your gut? It's not cramps, or stress, they're twitches, tics. Any tiny muscle that you never knew you had, I now know I have them. Thanks a bunch.

I feel like my skin needs to be covered, especially my legs. If I don't cover them, I feel like I don't have skin at all. We've had a couple of hot days, and sitting in the sun in a tank top, even though I don't get sunburned, I come inside and my skin burns. I feel like I have sunburn, and the feeling doesn't go away. I rub my skin, and it burns. I don't feel the contact of the skin of my hands on the skin of my legs or my arms, just the pressure, but when I take the pressure off, I feel I mild burning, tingling sensation. Sometimes more than mild. After I scratch, it can be more than mild. At least, then, I'm feeling something.

See, I am going crazy.

Dr. Gauthier took me off my anti-depressant, in case that was causing part of the problem. I don't think it was, I think it was helping to suppress it. And I think it was helping with my sleep, because I am getting so much less rest now. Even if I "sleep" more hours, my sleep is much less restful, and my dreams slip through into reality. Sleep-deprivation is a good way to psychosis.

2002-05-21T06:11:00.000-07:00

Yesterday, yesterday. I can write about yesterday. I have "awake" time in the mornings, so that's when I tend to do my writing. That's also when I have some actual time to do stuff, so everything I write about tends to have happened the day before. Thus, my overuse of the word, "yesterday." My apologies.

Yesterday, Matt and I shopped for a suit, went to Nordstrom Rack, and found a decent worsted wool one, then we went out to Fashion Place to a) find him some shirts to go with it, and b) spend my $15 coupon at Lane Bryant. (More on that on the regular blog.) My ass was dragging, oh yeah. We split up at the mall so I wouldn't have to do as much wandering about, and since Matt was unsuccessful, and I was displeased with Lane Bryant and ended up with two plain tank-tops, the mall trip was quick. When we got home, Trystan wanted to go to sword class, which he had invited us to watch. I was, by then, too tired to go, but he couldn't reach his friend for a ride. So, we all hopped back in the jeep to take him to the class (figuring we might as well go, iffen we had to give him a ride, anyway).

The class was a non-starter. I don't know if Trystan had the wrong info, or what, but no one showed up. So we waited for forty-five minutes, then headed home again. By this time I was tired and hurting - not as bad as on Sunday, but still pretty wiped out. We got home, I changed into my lounging pajamas (I can't properly relax unless I'm dressed for it), watched the Simpsons (giggling helps), and then went upstairs for a little meditation before Angel (season finale).

My face gave me some troubles last night, both sides. And both legs and arms didn't like any position I sat or lay in. My sleep was pretty disrupted, and I woke up at 6, wide awake, so I decided to just get up. I have an appointment with Dr. Russell this morning.

2002-05-20T10:52:00.000-07:00

Kathryn, Tiggly, and Cam-Cam came over yesterday for our first-ever barbecue. I think it went well, especially since I let Matt and the boys do all the work. I knew Kathryn would be late - as it turned out, she was two and a half hours late, which is pretty much par for the course - so I took it easy. Worked on the blog and the website, took a long bath, sat around. The leg complained, the back complained, the face complained. I complained, well, grumped. At those points, I tend to do family-avoidance-strategy, without realizing what I'm doing, until I catch myself bitching too much. Then I realize what I'm doing and try to stop. Before the pain med abatement program, I would swallow a lortab and all would be right with the world, yesterday I took some time out for some meditation, but my head was too full of too much shit.

Pain, for one thing. Heat, for another. The heat doesn't seem to be a good thing for finding my "happy place."

But it was good to have Kathryn over, although she was a bit frazzled over Cameron, who's going through this phase of complete Mommy-focus. He's just over two, so that explains part of it, but I think he's also missing Mike in his way, and needs the parental attention. He doesn't have any other way of expressing that need than clinging to Kathryn and doing anything and everything to get her attention.

We all came inside about 6pm, mostly to watch Simpsons (hafta!), I did because I couldn't take the bench anymore, or the wind. Definitely time for a haircut. Anyway, throughout the evening I found myself shifting around, unable to find a comfortable position. Another sign that things are not going well in the leg department. I can't wait for the twitches to start up again, either. Those are pure fun. I've only had one pure electric jolt, a few weeks ago, and that was like two muscles jamming into each other at speeds exceeding R17, with the same massive decelerative effects. Owie. What really bugs me is that my right leg is trying to join in the fun, although not nearly to the same extremes. My right hip joint is making the same bone-conductive noises when I try to shift positions, snapping and crunching, my knee and ankle burn, my calf aches and burns with some kind of sharp, skin burning, tingling sensation.

People, doctors (not that doctors aren't people), everyone, they all ask me what I did to set this off, and I reply that I did nothing, nothing at all. Especially this past week. I have done nothing in the past few days that is any different from what I've done in the past few weeks, when I was feeling much better. No sudden increase in activity, no strain, no heavy lifting, nothing. I haven't been lying around, and suddenly twisted wrong, no jerking, dancing, limboing, hula-hooping, jumping up and down, marathoning, running for busses, hitch-hiking, moving boxes, spelunking, panning for gold, or looking in the couch for change.

Now my arms are starting to hurt again, too, which they haven't done since I was a teenager. I know they've had problems, but I've been able to ignore those, and now I'm going to have to bring up those issues with Dr. Gauthier. I'm concerned that this thing is more than just a traumatic injury, that there's something else going on.

2002-05-19T07:39:00.000-07:00

Yesterday, after spending the morning playing on the computer and doing a bit of playing with dirt - actually mixing in some manure with the soil around ten small plants in the bed outside our living room window, four of which I'd done the previous evening (which took me two tries - the second try with Matt's help because I wore out too easily), Matt and I went picnic table shopping. My leg complained mightily, much more mightily than it has in a while, and I was most disappointed. I say "a while" which I guess means a couple of weeks, because time sort of dilates when you're enjoying the absence of that kind of pain. Two stores across the street from each other took three hours, partly because they were Wal Mart and ShopKo, and partly because anything I undertake takes (chime in if you have to) three times as long as it should. Oh, and we did run out to Home Depot to check on prices there, by which time I was seriously limping, only to go back to ShopKo to make the purchase, where I stayed in the Jeep while Matt went inside to buy. He often does that. I'll stay in the Jeep while he runs the errand, because I just can't face the walking around.

Every time I get any kind of respite, even with the weird sensations and facial pain and any other kind of symtom you care to name, I get to thinking "ah, I don't have to worry anymore" and then, Bam! I get hit over the head with the sledgehammer of pain. Just to remind me that there is no cure and I'm going to have to live with this for as long as I can foresee. I hate to say "the rest of my life," because I am optimistic about science and the breakthroughs that will be made in the next twenty to thirty years.

Speaking of which, Dr. Steffens mentioned that there were some new generation anti-convulsants coming out soonish that will not have the worrisome side-effects that the older ones have (weight gain, anyone?), and that we will be able to try those when they become available. That'll be good, I look forward to it.

It seems like the more exhausted I feel, the more things I have to do. I try to organize my week so that I only have a few things to do - if possible three during the week, and if I have to, one thing a day. Two appointments or errands a day is a maximum, more than that and I'm pushing it. On a really good day I can do more, and I've had some really good days where that's been okay, I've done that with relatively little pain and the exhaustion level has been not too bad. That's been creeping up on me again, though. Sometimes I look at the week ahead, and just get tired in advance.

2002-05-18T08:20:00.000-07:00

Had my last appointment with Dr. Sbei yesterday - he's graduating from his residency in June. I've got an appointment with Dr. Steffens in October. Dr. Steffens has been the doctor who's overseen Dr. Sbei's work with me the past year or so up at the department of neurology, so it's not that much of a change.

We went over what's been going on with my face - the breakthrough pain, the creepage stuff. I described to them that it seems like the medication is doing it's job, but the pain is pushing through nonetheless. It's like it was when it first started, fairly mild with major pain once or twice a week, including some stabbing pain in my ear, and throat and nose pain. (There's also some stuff going on on the left side of my head, which I forgot to mention, but it's not like there's any site-specific thing we can do, really.) Dr. Sbei wanted me to increase the baclofen to 20mg 3x/day, starting at night for a week and going up (it'll take three weeks to increase to full dosage), and Dr. Steffens suggested a lidocaine patch, that he said has helped several other patients he has with AFP. He said it has helped them with their pain on a daily basis, although they don't have exactly the same symptoms I do, he thinks it's definitely worth a try. I do, too. We're probably also going to try going up on the Topamax, eventually. Woo-hoo. (I don't mind that, it's the Neurontin I'm worried about increasing, given it's weight-gain effects, although the Topamax's cognitive-interference side-effects are worrisome.)

I'll probably also have to have another MRI done in the fall, simply to see if there's something there that didn't show up before because it was too small. Something that growed. Har.

2002-05-17T13:08:00.000-07:00

I'm supposed to be tracking my pain levels and activity each day - I'd started doing that in a notebook, but, as per my personality, was editorializing. I don't really see any way I can avoid that, simply because I don't seem to have much control over how my mind wanders, besides which it'd be boring as all Hell for me to write without following different trains of thought.

Is it just me, or is there a whiff of rationalization in here?

Today we had to take Shannon up to his nurse-practitioner to have a cast put on his arm, because he managed to sustain a buckle fracture Tuesday night, playing with Troy. They'd been playing on the clothesline, Troy pushing Shannon along the wires, Shannon hanging from a stick laid across a couple of them (kind of like a flying-fox-type of arrangement, New Zealanders may know what I'm talking about, I don't know if I'm painting a clear enough picture for everyone else), and Shannon usually jumps off right before smashing into the metal pole at the far end, which he did this time, but landed too hard, catching himself with his right hand on the ground. At least, this is what I've gathered, because I try not to watch too much of these goings-on, simply because I'm the mommy. Shannon feels like he needs all the mommy-daddy attention he can get right now, although I don't think he's in too much pain right now. We've been giving him children's Advil to help reduce the swelling (as per emergency room doctor instructions), and although we filled his prescription for tylenol with codeine, he hasn't needed it. After that we had lunch, and although I have an appointment with my neurologist up at the University Hospital (which under other circumstances means we could've spent there rest of the afternoon downtown), I just felt like coming home and conserving what little remains of my energy.

I did put some laundry in the washing machine, so that's good.

2002-05-15T10:24:00.000-07:00

I've been thinking, on-and-off, about some of the newer sensations my body's been giving off. I think I've finally nailed it down. It feels like I'm on lortab. The kind of floaty-tingly-not-quite-there-ish feeling. The pain stabs through once in a while, and lately it'll get aggravating when I lie down or sit for too long with my leg stretched out (counter to everything one would think would offer more comfort - sitting at a computer you'd think would be less comfortable, but, in fact, it only really aggravates the pain in my shoulders and arms occasionally). My lips are kind of numb most of the time, and of course my back has that burning, itching, numb-ish thing going on. Weird. I'm not taking any lortab. In fact, when I was taking it during the last weeks I had any, and then it was only sporadically when the pain was most excrutiating, it almost seemed to exacerbate the pain and I wouldn't even get the high I wanted to mediate between myself and the pain. I took it more in hope, than anything else. To see if maybe this time it would be different.

Of course, this weird, mixed-signal stuff can get overwhelming, and although it does seem to be better than the pain, it doesn't do anything to increase my productivity. It actually decreases it, because my mind scatters more, and I have found myself exhausted to the point of being constantly drowsy. Moreso than being on any kind of painkiller, more like when I was trying to adjust to my first heavy dosages of Neurontin. Meditation has helped that, and taking naps helps, too. But my body just doesn't quite feel like my own, it's like there's even more dissociation going on.

2002-05-13T09:20:00.000-07:00

Yeah, well, okay. For some reason, I don't know why, I guess I expect everything to be available on the web. Naturally I am disappointed in this - the article I was referring to, A Knife In the Back, by Jerome Groopman, The New Yorker, April 8, 2002, is not archived on the magazine site. I can understand that, perhaps, it may be a little soon to expect that issue to be archived, but fer cryin' out loud! why on earth be afraid to archive other back issues?

Anyway. I had an entirely different idea about disc fusion surgery (we have a friend who has undergone it, and, unfortunately, he's still in pain, just as predicted in most cases), and I don't think it's going to be something I will chose for myself. I don't see how faking a disc, by building something that doesn't even seem structurally sound, can help a nerve or nerves that are injured in the first place. Especially if that disc is not the locus. Removing pressure from the nerve could obviously be helpful, but other risks would seem to outweigh any possible benefit. Physical therapy seems more like an answer, which I will probably be starting at Dr. Gauthier's instigation, here shortly.

I've also been thinking about getting into yoga. Dr. Russell thinks that's a good idea, as well, and when I mentioned Troy's personality, and how we've started him in on a bit of therapy, he mentioned how yoga has helped his son (who, he said, has a similar personality type) kind of focus and direct his mind. So, Troy and I will probably start sometime this summer. I know the meditation has really helped me calm down a bit (well, that and the antidepressant, heh), and start to use my mind a lot more efficiently. Earlier in the year, when all I could do is just lie down and kind of let my mind have free reign, it was like ideas were just sleeting through my head. Kind of disturbing, in a way, but also interesting. I try to keep a notebook and pen handy, to write this stuff down, just in case I have the strength and opportunity to get to these things later on. (This is over and above my swatch/notebook that is located somewhere beneath the house and which I don't have the heart to ask Matt or one of the boys to go hunting for at this time.)

I do have a whole rant in the back of my mind about doctors and the medical industry and their lack of ability to acknowledge their inability to fix/identify the things that are going on with me, and others, but it's just kind of mellowing back there right now. Percolating, if you will. It might bubble forth sometime in the near future.

2002-05-12T10:01:00.000-07:00

Oh, yeah! I am still taking a multi-vitamin, which I credit for not having had a cold or the 'flu for over a year. Well, I've also had 'flu shots, so that must've helped, some, 'flu-wise. But surely that doesn't explain my not having had any colds? I smoke (with intermittent quittage), too, so I should have them regularly. I'm just thankful I don't have to put up with all the head-stuffiness on top of the facial pain. In fact, now I think about it, the colds pretty much tapered off when my facial pain started peaking.

Hmmm.....

Maybe this crappy ol' body of mine understands that I can only cope with so much. I did have to put up with a nasty virus a couple of weeks ago, shared with the boys and passed on from my sister and her kids. Ugh. Let's just say that two rolls of toilet paper were used in one day, and leave it at that. The boys (especially Shannon, my youngest) were throwing up, which is something I will avoid at all costs (clearly). The fever (a symptom that Kathryn's doc said wasn't supposed to show up with this one) did an evil number on the rest of my other "normal" symptoms and I was pretty much tethered to reality by a pretty slender thread for a day or so. Fortunately I was able to care for Shannon while he was spewing before I was flattened with it. (The older boys ended up having to fend for themselves.)

One of the oh-so-many things that sucks about all of this, is that I can't really function the way I want to. I mean, I am normally a lazy person during the healthiest of times and would feel no guilt whatsoever if the house was a mess and nothing got done. Up until I saw things crawling out of some dank and subtly glowing corner. Then I could get pretty compulsive. Dishes would get done, however, but as long as everything looked relatively tidy, I was okay. Now, I just look around me and list the things in my head that I wish I could do and feel guilty about it.

February, March, April - I've been feeling moderately better, at least compared to the horror that was the fall and winter months (with my sister's husband dying on top of the pain ratcheting up), so I'd been making plans for stuff I could do, incrementally at least. Trying to get out at least once a day. But everything takes at least twice as long as it should, and I get so exhausted. And, just for a change of pace, I'll have a couple of weeks where I'll have a surprise visit from the Serrated Knife of Leg Pain, or the Burning Back, or the Don't Blink or It'll Hurt, or Ice Pick to the Ear, or all of them at once, or some combination thereof, or even some new twist. Or, like the other day, I'll simply be walking out of the grocery store, and I'll notice that the soles of my feet are numb.

I have learned to stop panicking, though, over every new and unusual symptom. I try to note them, remember to bring them up at my next evaluation with Dr. Gauthier. Don't know if it'll make a difference in the treatment, though, or all this is just part of the pathology. Personally, I don't think any doctor has a true handle on this whole neuropathy thing, at least, not traumatic neuropathy. I've done a lot of reading, and I'm sure I'll do more. Later on, when I've got more time (Mother's Day, and I've got to do the Thing), I'll provide a link to a good New Yorker article my father-in-law sent me. It's just going to be a matter of coping with the pain until medical technology catches up with the pathology.

Yay.

2002-05-11T09:52:00.000-07:00

So, med update (and I established that I am no longer taking any pain meds - I think I have half a lortab left, and that's for an extreme emergency. After that, I don't know what happens....):

15 mg baclofen 3x/daily
100 mg topamax 2x/daily
1200 mg Neurontin 3x/daily
150 mg Effexor 1x/daily

The baclofen, topamax, and Neurontin are for the Atypical Facial Pain, and the Neurontin should also be helping with the neuropathy, but seems to be doing nought, nada, zip, zero, zilch for it. My facial pain breakthroughs are coming more and more often, as well, which is why the dosage has increased on the baclofen and topamax. The Neurontin has not increased, because of the weight-gain factor associated with it - on all sides we're trying to avoid that, and I seem to have plateaued, somewhat. I'm yo-yoing within a fifteen-pound range that is a little uncomfortable and does nothing for my self-esteem at the moment. Not that my vanity is something I'm concentrating on. I just like to have nice clothes, an uber-cool hairstyle, and always, always, shoes to envy.

Anway. The drug regimen keeps the major pain at bay, but when the one-two, one-two-three syncopated pain orchestration gets in full swing, things get a little much. It can feel like the right side of my face is connected and conspiring with the left side of my body and my left leg. My back will throw in some conspiracy and my arms will take point. The world starts to slide away from me, and things start to seem slightly less and somehow more than real. It's all very hard to hold inside my head.

Things start to leak. The ground feels like it's swaying, and even lying down, I feel like I'm moving on a high sea.

2002-05-10T10:38:00.000-07:00

No, my skin doesn't feel normal, but I am going to the St. Mark's Pain Management Center. I have a diagnosis of neuropathy, and will be living with this for the rest of my life. Or at least until there's a way to "cure" the damage done to my peripheral nerves. At this point, we can't even pinpoint where the damage is, or even if the damage is in just in one location. Which is unlikely.

My pelvis has a non-union, non-healing fracture. It probably never healed from the original traumatic injury, and it probably never will heal. It, as far as anyone can figure out, has probably been held together most of the time by fibrous tissue, and the pain comes when that tears apart. (That's one source.) Some major nerves lie across the pelvic girdle, and in all likelihood, some damage was done there. Since I also have a ruptured lumbar disc, it is suspected there is some nerve damage there, as well. On top of it all, I have damage in my SI joint, some arthritis, and heavy-duty muscle/tissue damage and scarring around the area.

Of course, my facial pain has ratched-up, breaking through the medication-barrier, and on days when the symphony of all the symptoms act together, my body just isn't mine anymore.

Dr. Gauthier has me on a new antidepressant, which has helped a lot, controlling my moods. It's called Effexor, and is a new-generation drug, unrelated to any of the older ones, chemically. Matt is very happy with the change, and I feel a lot better. Not so many unexplainable crying jags. I am off the pain meds completely, and I have been seeing a clinical psychologist to help me get better control of my pain management - through meditation and a little bit of self-hypnosis. I have become pretty damn good at sending myself into a trance. Now, though, I'd like to know where my mind goes when I send it off somewhere.

I haven't been able to do any sewing. I have been able to organize my morgue files (pages torn from magazines, inspiration stuff for designing, all organized into topics or themes), practice my sketching, do some minimal housework, and a craft project here and there (as long as I stretch out the steps). It takes me all day to get one or two things done, and I am exhausted by the end of the day.

Sleep is not restful, and although I have been prescribed a couple of things to help, the cycle breaks through anyway. Lying down seems to make the pain worse, and sleep seems to exacerbate it, I don't know how, or even how to explain it. All I know is that I stay awake sometimes, no matter how tired I am, simply to avoid the nightmare of being in pain while I'm asleep. Meditation during the day helps, a lot, but some days my mind becomes so unfocused I can't even read or think clearly, and meditation becomes impossible.

My skin, especially on my back, has become itchy, about a half inch deep. I have gouged my back with scratching, and then I scratch some more, picking at the scabs. I try not to, and Matt has put bandaids on the scratches, but when he's not here, I just scratch some more. What's bad is when I use a plastic knife to scratch. I've become very flexible with my arms, so that I can reach my whole back with my right arm, and I can sit and scratch for a long time if I don't stop myself.

2001-09-20T09:41:00.000-07:00

Ooh! I have discovered that I can stretch my arms and legs, if I don't stretch my back. It still feels good, although it does require some coordination and strength of will.

Also, I would like to return to having my skin feel normal.

But, in other news, I do feel much more normal, emotionally.

2001-09-20T09:39:00.000-07:00

Mostly my back has that feeling, although sometimes the skin on the rest of my body does, too. The itching comes mostly when I'm up to my eyeballs on pain meds - when they've kicked in and I'm not hurting. That is definitely a reaction to the pain medication. Sometimes, though, it's not itching, so much, as a feeling that I need to be scratched, like I need to feel my skin, or something. It's very weird.

Like my skin's crawling?

I didn't take any Ultram yesterday until I noticed that I was in significant amounts of pain, and by that time I needed a Lortab. And, it felt like there were two points of fire, right over where the scars on my back are.

Like there were rocks grinding in the pit of my pelvis. Of course, I blamed that on cramps.

I noticed that sometimes, it feels like a crochet hook is grabbing some of my innards on the left side and pulling. It happens less often on the right, almost like appendicitis, but since I've had my appendix out, that is ridiculous.

When my back is really bad, to have a bowell movement is to ask that meathooks drag fecal matter out of my body, ripping through my back at the same time. That isn't right, is it?

2001-09-18T15:39:00.000-07:00

Dr. Peterson has upped my Prozac to 20mg/day. Not too bad. He did mention (and Matt was with me at the appointment) that last week was pretty rough on everybody (big "doh" for me!). I just got it magnified through the PMS and my pain.

I am going to describe the way my skin feels like I'm always sitting too close to the fire. I'm not necessarily hot all the time, temperature doesn't seem to play into it. It's just that my skin has the almost-on-fire feeling. Not hot, though. It's weird. I get Matt to scratch a lot, and that helps.

2001-09-18T07:06:00.000-07:00

I forgot to mention that I'm also taking Naprocen (sp? - naproxen sodium, anyway) - 500mgx2/day - as an anti-inflammatory. I don't know if it helps any, but hey, it can't hurt - any condition I have right now, really.

This morning, woke up with Trystan's alarm, 6:30, and a headache (started my period, so that's explained), groaned because I knew that no matter what I took, pain med-wise, the headache would stay. I hate that. It's just not right. I did manage to go back to sleep for another 45 minutes, so that was okay. Got an appointment with Dr. Peterson right after we drop Shannon off at school. The depression is getting a little much. When I'm thinking about suicide, no matter how fleeting, I know it's time to up the dosage of Prozac. I really am an optimist - I try to be, anyway. I'm trying to change myself into a good, optimistic person. A kind person who'd do anything for anybody. This pain is dragging at my efforts. I thought I was doing so well, and then Last Tuesday happened (Sept. 11, 2001, for those not sure of what I mean).

Matt's trying to buy a house and I feel like his main albatross. I can't even work right now. All I can really do is support him emotionally, and do the chauffeuring. Sometimes it's so bad I can't even manage to do that. I'm going to put forth every effort, and do as much of the interior decorating as I can - the sewing and stuff. Trystan and Troy can help with their rooms, and Matt can learn handy Andy stuff. ;-D But at least I can use my creative forces for good, huh?

I'm trying to turn my frown upside down.....

2001-09-17T10:35:00.000-07:00

Pain meds:

Usually I take 2 Ultram (tramadol) in the morning, 2 at noonish, 2 afternoonish, 1 Lortab at night. That's a good day. I have had one really good day, where I didn't have to take the Lortab. One really, really good day where I only took 4 Ultram. Bad days are where I take 2 Ultram in the morning, 1 Lortab noonish, 2 Ultram afternoonish, 1 Lortab eveningish, 2 Ultram nightish....and if it's really, really bad, 1 Lortab when I wake up in the middle of the night. Scrips last about 2 1/2 weeks.

2001-09-17T07:16:00.000-07:00

Not too bad, already this morning. Troy woke me up going out the door. Should I be thankful my son wakes me up before the pain does?

I wake up stiff because I don't move all night. To move is to invite pain. Matt woke me up when he came to bed last night. I was lying across the whole bed. I stretched. I shouldn't have. Matt was immediately concerned, because I started whimpering. The pain stopped when I stopped stretching, but damn, that's what stretching is all about, to make you feel good!

2001-09-16T16:59:00.000-07:00

For informational purposes:

Renewed two scrips today, Neurontin and Baclofen. The Neurontin doesn't have a generic equivalent. With insurance, I pay $10/month, the actual cost is $377.59. The Baclofen does have a generic equivalent, I pay $5, and the actual cost is$29.19.

Today has turned into a "hip" day. It feels like whatever is holding my pelvis together is pulling apart, and I mean that literally. It's like something is in there, flaying my tendons and muscle off the bone. It hurts, is what I'm trying to say.

2001-09-16T08:57:00.000-07:00

Can I just say, "Ow." Woke me up at 7:30, this morning. Tried to go back to sleep without taking anything. Ended up getting up, feeding the cats, grabbing a Pepsi, and taking a Lortab. Made it easier to, well, anyway.

Did I mention that sometimes my legs go numb? No? Oh.

Well, not just sometimes. Quite a few times. If I stand they aren't numb, but my back hurts like a sumbitch and my pelvis will whine.

If I sit, my feet will tingle and quite often my toes will go numb, or something (mostly the left side, occasionally the right side will chime in, but that's rare). My butt will get a bit numb as well.

When I stand up, it will feel like a dribble of cold water is going down the inside of my right thigh.

Sometimes, not often, my left foot will be numb for extended periods.

When I lie down, sometimes both legs will just feel like they're not there. Not numb, not painful, just not...not.

At times like that I just try not to move for as long as possible, because, to be quite frank, that's as comfortable as it gets for me, anymore.