Low-functioning soul

It turns out that a low-functioning nervous system results in a low-functioning soul. Loss of brain function is making me smaller and less interesting, and less capable of experiencing. No wonder I'm losing contact with everyone. The soul is still here inside of me though, screaming to get out and feel.

New GP appt

Scary, unrelenting eye pressure, plus very bad experience with new doctor that is hitting me very hard. I have no time for this, for one false start after another, with these people. I'm in too much pain, etc., to make sense to a doctor or to be seen as someone worth listening to. I felt as if he were on the other side of a tunnel, I noticed that at the time... He has no idea that I'm in such a horribly altered neurological state, as I struggle to think and remember and focus and explain. He probably thinks it's "normal" for me, a sign of craziness, not evidence of a sane person struggling to get past a neurological barrier to communicate. I have to have an advocate.

My eyes have had enough for one life

I worked hard at relaxing eye muscles in hopes that the sensation of pressure was fooling me, and that the problem was eye muscle cramping instead-- that at least I have some control over. I spent most of two days on conscious relaxation of the eyes, lying in the blackened room I have to sleep in, sometimes managing some sleep. It backfired. Later on I ended up with what felt like very bruised, black and blue eyeballs. This was only the next day, almost like a sort of "hangover".

Andre Aggesey (sp?) the tennis player was talking on NPR recently. He said there had been times when uncramping certain muscle spasms after a game had automatically caused other muscles to cramp painfully, because (I hope I have this right) these muscles function together, and for one to relax, the other has to tighten, and vice versa. That has often been what it feels like in my eye muscles. Also though, I feel pretty sure now that enough pressure is on the eyes, as they're pushed against the bony walls of the eye sockets, that they're being bent out of shape a bit, enough for pain and these flashes in the corner of my eyes when I look back and forth.

Anyway, I dropped trying to relax the eyes, and decided just to leave them alone, and at least any damage I did might heal up. The aspirin/caffeine powder and muscle relaxant help very little and I've OD'd badly on them, and I'm cutting back. The pain is less, but the pressure remains. It feels sort of like trying to keep a jawbreaker in my mouth that's too big, except that we're talking about my eyes in their sockets.

I wish to God someone were reading this.

Eyes

Eye pressure increasing. Had day recently where shimmering lights were going on in my field of vision in one eye only, which gradually went away, but they were so bright they interfered with my reading the computer monitor.

Now, in the right eye, whenever I move the eye back and forth or up and down, there's a flash in my right peripheral vision, and a feeling of the eye brushing past something or making contact with something. Presumably it's now a somewhat tighter squeeze inside my eye socket, and for the eye to move, it has to get past a bit of resistance, and this is compressing the eyeball a little bit.

A Strange Anniversary, and Water Fries My Nervous System

October 15, 1999: a very weird combination of Independence Day and its exact opposite, for me. I finally escaped dependence on a family (an insane father mostly) who didn't accept this condition, only to end up with no family, a bare-subsistence income, and no physical help, very much an out-of-the-frying-pan-into-the-fire situation. I'm still living in that frying pan.

*****

Update: I was right to be terrified of my next shower-- it blasted my nervous system much worse. This comes right when I have a mounting dehydration problem, which I passed out from once. I can't avoid water. Who knows, maybe I'm even reacting to chemicals in the water in the fruit juice. Anyway, I can't avoid washing, and splashing my eyes to hydrate them. Only this Mountain Valley brand that I seem to be reacting to, which I've had delivered for 20 years, is in glass. I have to avoid any liquid in plastic, so I can't just order another brand.

Along with more severe current, there's near-overwhelming exhaustion and more mental lethargy. This lasts indefinitely after each shower, so there's never a point when it wears off. I had to take the taxi both ways to get food Wednesday, and still, the struggle from carrying five bags up one flight of stairs made this the hardest grocery trip yet.... and I walked across town first with all the other trips. I had to leave the store early this time, knowing I wasn't getting most needed things.

I bought a little bottled water (other brands) from the store in glass, and am rationing it. I'm drinking fruit juice, a lot of it, I have to to survive. I like to think this will pass if I somehow manage to think of any and all contributing factors and avoid them, but guess what.... I can't think. I will never be able to give a good description of what my system feels like right now, as I type this. It's horrible.

Negative results from the cardiologist's untrasound and the ENT doctor's scan. The only day I felt better at all recently was after a walk across town and a sudden, unexpected better-air day (before the water problem started). Maybe I need to force myself to walk no matter how exhausted, to get the building's toxic air out thoroughly, but it's counter-productive with bad pollution.

I'm half amazed I put together a coherent entry here tonight.

oct 9 2009

Is this John Lennon's birthday?

Had CT scan of troublesome left face area and eyes yesterday. A new much worse neurological reaction to water has just shot ahead of all other concerns to #1 though. The horrible electric effects have become so severe from washing in bottled water that yesterday I said to hell with it, I'm going ahead and showering in the tap water I've avoided for years.... at this point it couldn't be worse than the expensive bottled water, and it's free.

I'm now terrified of every shower. I'll have to buy this Cetaphil stuff and start washing without water, but that doesn't deal with hair, and what the hell do I drink? I have to drink water.

Mountain Valley is the only uncarbonated brand left in glass, that I can have delivered. I now have to consider water in those polycarbonate? bottles that they claim don't leech out plastic, but I doubt that can possibly be true. In the meantime I'm drinking and splashing my eyes with water I don't dare bathe in.

I just heard on NPR that Chronic Fatigue can involve debilitating bone and joint pain, so maybe I have CF after all, and that's where the arthritis comes from. I wanted to connect my EI to my arthritis; maybe I can via CF. A doctor in Reno NV says they may have found a virus that causes CF, which could leaded to targeted treatments.

sept 29 2009

Happy birthday, Helen.

Cardiologist did ultrasound, heart okay. He actually suggested that my general 'constellation' of symptoms, the larger eye/neurological thing, could be an "MS variant". I didn't know about variants, but I've often thought this condition might be vaguely MS-like, and that the wearing away of the fatty insulation around nerve fibers (which is what MS is), and resulting excess "noise" in the nervous system, might explain the neurological "overload" I experience, the sense of "current" (electrical).

I'm trying to arrange a CT scan to look into that left side of my face where an infection, or something, is going on. Antibiotics in the meantime.

Big arthritis flare-up, worsening. It's settled mostly in my right wrist. It's swelled and covered with rash (it's psoriatic arthritis, rash comes with it). The wrist's much wider now including the bone, so will it ever go back to normal? I wonder if I bought some bad glucosamine. I'll get a different brand soon. Connection between infection and worse arthritis? They seem to coincide. Three immune system factors at same time: EI, arthritis, apparent infection. I can't even form a proper question in my head about this. What's it all mean?

I thought of looking up information on the biochemistry of vision, since light is affecting my nervous system and brain in a very unusual way. Something's wrong somewhere in all those steps between light hitting the retina and the signal reaching the brain, right? As always though, the moment I start I have to stop, because of the eyes, and I can't remember much of what I've learned.

sept 11 2009

Someone, probably Helen, told me a possible infection like this might be "manageable"; in other words, there are steps one can take on one's own to help it run its course. If it's this persistent though.... Anyway, I got out to walk several days in a row, which I thought was progress, but maybe ragweed exposure's a factor. No ragweed when the whole thing started though... Could I be so far behind in apartment-cleaning (and lack of antiseptics except vinegar) that catching up could help manage the 'infection'? I'm now taking insane amounts of glucosamine for arthritis, but it's helping. I was Walter Brennan-ing all over the apartment tonight (hobbling staggering that sort of thing) when I got up, I had it all over me. Is arthritis connected to how clean the place is?

sept 9 2009

Starting to get that strange sick feeling that led me to get my tooth pulled, and I think the strange area with pain/pressure from the upper left molars through that left maxillary sinus right above it and through to the left eye needs looking into. Otolaranygologist?

I forgot that holes from pulled teeth need special maintenance with EI patients, to keep all food particles and anything out (so trapped infections don't happen), until the hole seals, and didn't remember till it was too late.

Maybe coincidentally, maybe not, ragweed season should be well underway now. The usual throat itching that lets me know it's started hasn't happened though. They're advertising flu shots as if we all need them, but I don't recall ever having had one. Not sure what flu is, apart from being like a bad cold, except muscle aches, which I have. I've been attributing that to my greater arthritis than usual.

More arthritis has accompanied this whole tooth business in the last few weeks. So, something that seems like an infection (to me, not that I'd know), plus arthritis-- which I think is an [i]over-active[/i] immune system. Meaning??

Sept 3 2009

The tooth seems to have been the right one. I hope to delete info. here if it becomes obselete, such as everything about the pulled tooth once I'm sure it all went fine. I don't want readers overloading on details.

I screwed up my dentist appointment for tomorrow. It seem to sneak up on me; suddenly I realized it was tomorrow and I thought it was still a week off. This is new. I take steps to get around my memory problem so that doesn't happen to me. I had to cancel because I hadn't arranged to get enough rest to recover enough to make the trip. Then when I called to cancel the taxi, they swore I hadn't arranged for it. (You have to arrange for this state-paid service well in advance.) I was absolutely certain I had, but only a special long-distance taxi company makes that trip, and I never called them.

In other words, I'm losing more ground, in my brain function. I used to say I felt half asleep all the time. Now it's two-thirds or three-quarters. I wonder how little oxygen my brain is struggling valiantly to get by on... I screw up more and more important phone calls, because of terrible concentration.

I'm failing to prepare for possible Social Security and Public Aid reviews, and the next housing review, by working on finding a new doctor, because of my endless eye abuse--sleep deprivation cycle. Losing huge amounts of time. I should be in a good bed with good food and no light to recuperate, not struggling to think and work now.

Possible areas for new doctor to look into: Compromised liver function-- local eye anesthetic? Local eye anti-inflammatory? (Bring down eye swelling)-- PET scan... for neuro-transmitter loss? Dopamine etc.?-- Immune system boost? (to counteract environmental assaults, possible accumulated alcohol effects, and damage from anti-arthritis drugs)-- Flushing my system out... that colonoscopy flush was somewhat "energizing", or something. In a good way, not like my nervous system over-reacts to light.

Really ill all the time, and can't get break from it. The blankness is basically making me forget who I am, my own personality. That's too complicated to explain here and now. All in all, I can't take this at all anymore, not even a little bit.

My friend Helen has ideas on what to ask a new doctor to look into. I need to get all that info. down.

aug 21 2009

Today I suspect they might have pulled the wrong tooth. I think they were checking with me at the last minute to confirm that they were about to pull the right one, instead of the X-ray, and I wasn't at all sure. He tapped on this and that tooth and I said yes to the one I came into the office thinking it was, but what do I know?

I'm starting to remember the neighboring tooth as the root canal one now, and that one is a bit tender, and "tight" in that now familiar way. Pain from extraction fading, recent pain/pressure I meant to have treated still around.

I'm more than half asleep every moment of every day. I didn't think I'd be telling [i]them[/i] which tooth. I didn't think I'd be having one pulled, certainly not the same hour. Everything went by so fast. The dentist and I didn't understand a third of what the other was saying because of a language or accent barrier.

I'll call them tomorrow morning.

aug 20 2009

That old root canal tooth with the crown on it was just yanked from my head. I'm biting down on bloody cotton as we speak. It's not too depressing losing this one; EI patients are really supposed to get teeth like this pulled rather than getting root canals anyway, too much chance of trapped anaerobic
bacteria. Root canal teeth are already dead teeth. If I start losing good ones, that I hate the thought of. It's over, and fast, I like that.

Aug 19 2009

Seeing a dentist Thursday, to see about possible infected old root canal tooth in UL quadrant, that may be interacting with the left eye and left maxillary sinus (next door to those molars). I got some antibiotic into me today, helped a bit I think. I've wondered if a growing overall more ill feeling might be a building infection, since crowned root canal teeth get infections trapped inside them... something to do with lack of oxygen inside.

Eye pressure has been a growing problem, more in the left eye usually. In 1986 alcohol suddenly made my eyes bug out a bit, then that faded, only to recur and become permanent the next week when I had more vodka. Why did I have more you ask? Then as now, my brain chemistry is damaged so as to blunt emotion, or emotional depth. Lessened dopamine production I think. I have those slightly Parkinsonian twitches sometimes. Anyway, in the absence of any willingness to get involved on the part of the medical community (what a warm reassuring word... community...), self-medication is my only option, therefore, alcohol. Considering my income, usually the cheap kind with preservatives and/or dyes. Tonight it's Sam Adams Blackberry Witbier, but I can't do the better stuff that often.

So now I'm experiencing my first real alcohol-related (at least patrtly) increase in eye pressure since 1986. I almost hope something neurological is found that's pressing into my eyes from behind... unless it's inoperable anyway.

I need to see a cardiologist and neurologist, and maybe an ear nose throat MD depending on how Thursday goes. In October 2008, I fainted twice in the space of a couple minutes at a brewpub. I'd had one Vicodin (I rarely have access to such a good analgesic, but I was having a colonoscopy the next week and had to be off aspirin), blood pressure pills, and just over one potent brewpub beer. I'd just started a second one. I'm told I turned white then dropped to the floor, twice. The ER did a CT I think though these days it seems they call everything "X Rays" whether they are X-Rays or not. Anyway, nothing found, they rehydrated me for hours, that helped (dehydration is a prime problem ever since Apr 24 1984 the day my EI started, when water seemed constantly sucked out of my body and almost constant Gatorade couldn't keep up).

I went to an appointment with a cardiologist, but haven't gotten back for the treadmill test for months. A big problem with my gov't housing stalled all this. A neurologist was also reccommended.