Personal Update 27 January 2004
Those who know me have probably noticed that this blog tends to get more and more impersonal over time. This doesn't come from any unwillingness on my part to communicate, it's just that I get tired of trying to find new ways to describe my illness and the severity with which it has laid me low. So, for those who were wondering wtf is going on:
I am out of bed less than an hour each day. Most of that time I am either in too much pain to do much, even surf the web or read >:( , or I am too drugged, with much the same result. Unfortunately the drugs don't actually make the pain go away, and at times I doubt they are helping at all... if they are truly minimizing my pain, then my problem has gotten much more severe, since the pain levels are already debilitating.
The operating theory of 'nerve damage' appears to be falling apart, as that pain spreads to the left side of my abdomen and up into both sides of my chest. In addition to this, one of my most pressing problems is (also) as yet undiagnosed, a sort of cramping seizure that wrenchs my guts every time I exert myself, which is what really limits the time I can be out of bed - a few minutes of activity, and I can barely stand.
The doctors are still approaching the nerve thing as a pain-management problem... I've got a nerve block scheduled for the right side of my abdomen, but as I've said, this is but a small part of the problem at this point. I'll still do it, because any reduction in pain is welcome, but how far can that process go? They are *killing* nerves, as in numb... no pain, no pleasure, nothing. As you can see, the 'treatment' has profound effects on my quality of life that rival those of the illness.
The stomach thing is mostly unresolved... they've given me 5 different drugs, none of which do much of anything except for the new one, belladonna, which does not calm my guts at all but does have the side effect of giving me dreams so painfully psychotic that I usually wake up thinking about death as a preventative measure to keep me from having more such dreams. We've been experimenting with all of the other drugs, adjusting levels and substituting formulations to see whether or not the stomach thing could be primarily an unwanted drug interaction; so far this path has yielded no useful information other than the fact that I am chemically dependent on a couple of my medications and suffer greatly when their effects wear off.
The stomach thing can't be purely the result of the drugs, as it is a problem that I've experienced on rare occasions over the past 8 years or so... but now it happens all day, every day.
All that I have described has done little cheer my mood, so I am not really seeking people out lately... I'm thinking about you, I'm missing you, but I'm in no position to actually interact very well. Anne-Marie is my sole connection to the world; when she goes to work, I usually just sleep those days away, so I might be rested enough to do something with her, like work on the house (for instance), a task that is moving astoundingly slowly due to my inability to stand up for any length of time, let alone do strenuous work. Every couple of weeks there is a day when I can get out of bed for an hour or two; we're using those times to pick away at the remodeling.
In the meantime, we watch a lot of films and just talk a lot, which is nice... we've watched almost all of Buster Keaton's films this month Sometimes I have the same problem with Anne-Marie that I have with the collective you: I've run out of ways to say 'ouch', but that is what I am feeling, se we just sit quietly and talk about other things, dreams and plans for the as-yet mythical future when I am well enough to get my life back.
Any questions?
I am out of bed less than an hour each day. Most of that time I am either in too much pain to do much, even surf the web or read >:( , or I am too drugged, with much the same result. Unfortunately the drugs don't actually make the pain go away, and at times I doubt they are helping at all... if they are truly minimizing my pain, then my problem has gotten much more severe, since the pain levels are already debilitating.
The operating theory of 'nerve damage' appears to be falling apart, as that pain spreads to the left side of my abdomen and up into both sides of my chest. In addition to this, one of my most pressing problems is (also) as yet undiagnosed, a sort of cramping seizure that wrenchs my guts every time I exert myself, which is what really limits the time I can be out of bed - a few minutes of activity, and I can barely stand.
The doctors are still approaching the nerve thing as a pain-management problem... I've got a nerve block scheduled for the right side of my abdomen, but as I've said, this is but a small part of the problem at this point. I'll still do it, because any reduction in pain is welcome, but how far can that process go? They are *killing* nerves, as in numb... no pain, no pleasure, nothing. As you can see, the 'treatment' has profound effects on my quality of life that rival those of the illness.
The stomach thing is mostly unresolved... they've given me 5 different drugs, none of which do much of anything except for the new one, belladonna, which does not calm my guts at all but does have the side effect of giving me dreams so painfully psychotic that I usually wake up thinking about death as a preventative measure to keep me from having more such dreams. We've been experimenting with all of the other drugs, adjusting levels and substituting formulations to see whether or not the stomach thing could be primarily an unwanted drug interaction; so far this path has yielded no useful information other than the fact that I am chemically dependent on a couple of my medications and suffer greatly when their effects wear off.
The stomach thing can't be purely the result of the drugs, as it is a problem that I've experienced on rare occasions over the past 8 years or so... but now it happens all day, every day.
All that I have described has done little cheer my mood, so I am not really seeking people out lately... I'm thinking about you, I'm missing you, but I'm in no position to actually interact very well. Anne-Marie is my sole connection to the world; when she goes to work, I usually just sleep those days away, so I might be rested enough to do something with her, like work on the house (for instance), a task that is moving astoundingly slowly due to my inability to stand up for any length of time, let alone do strenuous work. Every couple of weeks there is a day when I can get out of bed for an hour or two; we're using those times to pick away at the remodeling.
In the meantime, we watch a lot of films and just talk a lot, which is nice... we've watched almost all of Buster Keaton's films this month Sometimes I have the same problem with Anne-Marie that I have with the collective you: I've run out of ways to say 'ouch', but that is what I am feeling, se we just sit quietly and talk about other things, dreams and plans for the as-yet mythical future when I am well enough to get my life back.
Any questions?
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