February 16 Fibromyalgia, Lyrica

Yesterday I sent a message to my internist saying that I had reduced my Lyrica dosage downward; I take a total of 225 mg. per day, 150 at night, 150 in the morning. Not too many weeks ago I had noted here that I didn’t think that I could go down from the 300 level, now I feel differently. I take acetaminophen on an almost regular basis, no more than 1,000 mg. per day. I started, in August, at 75 mg., moved quickly up to the maximum recommendation of 450 mg., then began this slow reduction.

There are two motives for doing this: The first remains that I don’t want to take any more medicine than I have to. That is why I stay away from the supplement counter at the drugstore, the innumerable recommendations of friends and associates, none of whom are healthier than I am. If a drug is needed I want a person in a white coat, who works at a teaching hospital, to write the order and attach a signature. The popular sneer aimed at western-medicine comes from a political or psychological need, driven by poor logic and an absence of science. The psychological need is one for control, the unexamined belief that one should take control, be in charge, fight the unpleasant, etc. The logical mistake is that one we were taught in Logic class, post hoc ergo proctor hoc;if my reader is a follower of self-medication that old logical fallacy is something you had better stay away from, it is about your fallacy.

My second reason for trying to reduce the dosage is the side effect; currently it is this feeling of fatigue that colors everything I do, or don’t do. It has destroyed my social life, not that my social life was a difficult target for destruction, but there was something there. I want to be rid of this malaise.

Dizziness continues at a low level, for short periods; it is far from being the overwhelming problem it was at the start of this therapy in August.

I continue to see what I call repairgoing on, I use that word whenever I write or talk about this, no one has come along to contradict me, so I continue with it.

That is my state of treatment as of today, it will change, I will try to make a record of it here.

I finally bought a hat

The temperature is low this morning, -4°F, winds are expected to gust up to about 30 m.p.h. The sun is bright, the sky is a clear blue, the bulky sparrows wait their turn at the feeder.We like this “wind chill” business, it lets us feel that we endure Siberian and Shackleton brands of cold as we sit inside centrally heated houses, watching the meteorologist detail just how badly we have it. This is sort of like buying a shirt with your favorite player’s number on it. Our wind chill right now is -24°F.I have been outside when the thermometer reads -40°F, I was north of Cochrane, Ontario in late February. Cochrane is as far north as one can go by road in Ontario, from there I went by train north, towards James Bay, about half way up the line was a place called Coral Rapids, I don’t think that it exists anymore. That kind of cold is different, needs no wind to imprint its seriousness, it was just fucking deadly cold .After I arrived in Coral Rapids I was told by several people that if I was out walking and began to feel sleepy, that I should knock on the first door I saw, house or office, tell the person who came to the door that I was feeling sleepy, they would take care of me. The sign of hypothermia is sleepiness, the body shutting down to preserve energy; lay down in that fat snowdrift, have a bit of a nap, it doesn’t feel so bad now, just a nice sleep, that long, long sleep.So much for morbidity: The low sun angle makes a great picture of bronze birds, branches and feeder, shining surfaces and deep shadows contrast. I am being reminded that I sit in a sunporch that is open to the outside, underneath this thin floor. The bright sun in my eyes, the cold soles of my slippers makes for an interesting morning, but a short lived one, this will get old after a while.I was going to write another post about how to face whatever fearful thing is available, overcome it, accept it, move on kind of piece; but maybe I have done enough of them. The idea I was trying to get across has been said for several thousand years, my recent ruminations are enough for now.I have been playing at arranging in some sort of system how I experience and understand revelation and the spiritual life; without success. This is the most slippery chore I have ever come across, it explains why there are so few theologians who have anything important to say. I knew a woman who was working on her PhD. in theology at the U of C, the average time for someone with a M. A. to get a doctorate there, was 5 years, that is a long time to figure out the addition she could make to our knowledge of the divine. I think that she ended up doing some kind of women-in-religion kind of thing, not quite the divine; but I do remember knowing a few woman who took me to heaven and to hell.The coffee is just right this morning, I shut my eyes and face the sun after a swallow of strong, fresh brew; I feel the effects on my body, the caffeine doing that wonderful thing it does, the heat in my belly.

I did buy a hat yesterday, went into a Western wear store in my neighborhood; there were hundreds of hats, most of them too cowboy for me, but then I found the area of felt hats from fedora to rodeo styles. Of all the hats there were only two that were my size, both the same style, one black, one mink (brown). I have a big head. (Many have said that, but used different phrases to express their estimate.) Now I own a Resistol, 4/xxxx beaver, “self-conforming“; and I love it. I have just put it on as I sit here, tilted so that the sun is blocked, the edge of the brim is at the top of my vision, it feels good, and I expect it to feel even better as the years shape it to my cranium.

I feel sad because I am coming to an end of the kind of writing that I have been doing, don’t know what I will write tomorrow; what I was saying has become redundant. I could write on food and cooking, but there are a million writers of that; what there aren’t many of is people explaining what is going on when one prepares food. I found myself that if I know the why behind anything then I do it better, am freed from the mindlessness of recipes, perhaps there are some who would read that kind of thing.

I continue to feel good about my visit with Bert yesterday, the purity of his welcome & thanks, the freedom to say to him “my old friend”; between us there is no history, no agenda, no reserve nor embarrassment. It is an experience unlike any other, I am fortunate each time, with each person that this connection occurs.

My left hand, wrist and forearm are wrapped in Ace bandage this morning, sprained from a fall on the ice; this will be the end of typing today.

It’ll force me to focus on thinking what I might put down here tomorrow.

I finally bought a hat

The temperature is low this morning, -4°F, winds are expected to gust up to about 30 m.p.h. The sun is bright, the sky is a clear blue, the bulky sparrows wait their turn at the feeder.

We like this “wind chill” business, it lets us feel that we endure Siberian and Shackleton brands of cold as we sit inside centrally heated houses, watching the meteorologist detail just how badly we have it. This is sort of like buying a shirt with your favorite player’s number on it. Our wind chill right now is -24°F.

I have been outside when the thermometer reads -40°F, I was north of Cochrane, Ontario in late February. Cochrane is as far north as one can go by road in Ontario, from there I went by train north, towards James Bay, about half way up the line was a place called Coral Rapids, I don’t think that it exists anymore. That kind of cold is different, needs no wind to imprint its seriousness, it was just fucking deadly cold .

After I arrived in Coral Rapids I was told by several people that if I was out walking and began to feel sleepy, that I should knock on the first door I saw, house or office, tell the person who came to the door that I was feeling sleepy, they would take care of me. The sign of hypothermia is sleepiness, the body shutting down to preserve energy; lay down in that fat snowdrift, have a bit of a nap, it doesn’t feel so bad now, just a nice sleep, that long, long sleep.

So much for morbidity: The low sun angle makes a great picture of bronze birds, branches and feeder, shining surfaces and deep shadows contrast. I am being reminded that I sit in a sunporch that is open to the outside, underneath this thin floor. The bright sun in my eyes, the cold soles of my slippers makes for an interesting morning, but a short lived one, this will get old after a while.

I was going to write another post about how to face whatever fearful thing is available, overcome it, accept it, move on kind of piece; but maybe I have done enough of them. The idea I was trying to get across has been said for several thousand years, my recent ruminations are enough for now.

I have been playing at arranging in some sort of system how I experience and understand revelation and the spiritual life; without success. This is the most slippery chore I have ever come across, it explains why there are so few theologians who have anything important to say. I knew a woman who was working on her PhD. in theology at the U of C, the average time for someone with a M. A. to get a doctorate there, was 5 years, that is a long time to figure out the addition she could make to our knowledge of the divine. I think that she ended up doing some kind of women-in-religion kind of thing, not quite the divine; but I do remember knowing a few woman who took me to heaven and to hell.

The coffee is just right this morning, I shut my eyes and face the sun after a swallow of strong, fresh brew; I feel the effects on my body, the caffeine doing that wonderful thing it does, the heat in my belly.

I did buy a hat yesterday, went into a Western wear store in my neighborhood; there were hundreds of hats, most of them too cowboy for me, but then I found the area of felt hats from fedora to rodeo styles. Of all the hats there were only two that were my size, both the same style, one black, one mink (brown). I have a big head. (Many have said that, but used different phrases to express their estimate.) Now I own a Resistol, 4/xxxx beaver, “self-conforming“; and I love it. I have just put it on as I sit here, tilted so that the sun is blocked, the edge of the brim is at the top of my vision, it feels good, and I expect it to feel even better as the years shape it to my cranium.

I feel sad because I am coming to an end of the kind of writing that I have been doing, don’t know what I will write tomorrow; what I was saying has become redundant. I could write on food and cooking, but there are a million writers of that; what there aren’t many of is people explaining what is going on when one prepares food. I found myself that if I know the why behind anything then I do it better, am freed from the mindlessness of recipes, perhaps there are some who would read that kind of thing.

I continue to feel good about my visit with Bert yesterday, the purity of his welcome & thanks, the freedom to say to him “my old friend”; between us there is no history, no agenda, no reserve nor embarrassment. It is an experience unlike any other, I am fortunate each time, with each person that this connection occurs.

My left hand, wrist and forearm are wrapped in Ace bandage this morning, sprained from a fall on the ice; this will be the end of typing today.

It’ll force me to focus on thinking what I might put down here tomorrow.

Lyrica, fibromyalgia, January 24

I wouldn’t be writing another log note on this subject except that so many have read the previous:

There isn’t anything to add to the previous notes; the dosage stays at 300 mg. of Lyrica and 2000 mg. of acetaminophen daily, broken in 2; there hasn’t been a debilitating day of pain in weeks, there is slight dizziness early in the morning, feelings of fatigue and naps throughout the day; that’s about it; I certainly want to continue with this drug, have no reason at all to stop taking it, am so happy that I overheard doctors talking about it, and that I asked them to tell me the story.

There is one observation that I have made from reading the reports of the others who have this thing: I don’t think that there is as much subjective or unique nature to the problem, there appears to be a strong common thread in all of their stories, both history and current situation; I have nothing other than a hunch about that, you can judge that one for yourself.

Again, this is one guy’s observation and opinion, I buy this stuff at the same price and place that everyone else does, have no affiliation with Pfizer or any medical group.

My only advice continues to be the same: Be active, don’t wait for some physician to come to you, and make sure that you have a doc who appreciates active patients, if yours doesn’t get rid of him.

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The hawk has just returned, I think that it is a kestrel, it is sitting outside my window, all the sparrows have disappeared from view, none in the bushes or on the wires; it was here last week, I wrote about it then and then did a search to see what kind of bird it might be, kestrel was all I could come up with.

January in Chicago

It is a great idea to have a sunporch, to be able to put a computer out here where I can see the sun come up over the buildings and watch the birds at the feeder; but sunporches have no connection to the insulated world, they hang right out there. Out there this morning is:

umidity:	68 %
Wind Speed:	W 10 MPH
Barometer:	30.41″ (1031.7 mb)
Dewpoint:	-13°F (-25°C)
Wind Chill:	-22°F (-30°C)
Visibility:	10.00 mi.
More Local Wx:	3 Day History:

That is a copy from the NWS statement at just before 7 a. m.

It is a cold morning to be sitting in a sunporch and typing.

But what could make a good, strong cup of coffee taste better?

What could make me appreciate more this oversized Irish fisherman’s sweater I bought off e-bay last year, and the heavy Orvis shirt over it, and my Lake Wobegon Whippets cap that I almost never wear?

The weather is predicted to begin warming tomorrow, good.

A guy at work overheard that I had an interest in fibromyalgia, it turns out that a relative of his has it, that it has made her life miserable and those around her as well; like many others she has had uneasy relationship with her doctors.

It is not unusual or difficult to understand why some doctors don’t act well around an ailment that doesn’t have a clear explanation (although that is changing), doesn’t have the same symptoms every day or patient, that no medication treats well or consistently, this makes sense because these people have a disposition and are trained to do something to make people better, that is what they are about; and when they can’t make you better they don’t always act in ways that we’d like. Hospice people find the same situation, the patient ain’t going to get better, that is why they are in hospice, they are about to come to the end of their lives; doctors want to make us better, their mission statement is simple in that regard, many of them can’t handle existential complexities any better than the rest of us, and most of us don’t handle threats to our being very well either.

I have a pretty good internist, deputy chief of his department in a teaching hospital—-I went to him with this medicine in mind, he did not come to me; he goes quiet on the subject of fibromyalgia, but he wrote the prescription and he monitors the progress. I really don’t give a damn if he is a believer or not, that isn’t necessary, medicine is a co-operative effort. He is not shy about matters of weight, blood pressure or cancer, and he listened to me when I said that I wanted to try this stuff, he looked into the research and then wrote the prescription, adjusted the dosage when I told him I needed more, now less. I know that judging doctors is a common sport, but it won’t make you healthier or feel better; if the doc is bad fire him or her, otherwise get in tandem and pull together.

Getting back to the fibromyalgia: I have not had a day of disabling pain in a couple of weeks, and that one lasted less than a day, this after three decades of feeling badly. Currently I take 300 mg. of Lyrica and 2,000 mg. of acetaminophen daily, broken into two parts; this works for me right now although I can sense some discomfort around the edges, I was hoping to cut the Lyrica back again but I don’t think this is the right time. Let me repeat what I hope I have said each time I write about this: This works for me, the side effects diminished from the difficult beginning to where they are barely noticeable now; if fibromyalgia is a difficult enough problem for you then maybe you ought to give it a try. I have no relationship or contact with Pfizer, am not in anyway connected to the health care industry, other than checks that I send to Blue Cross.

The bird feeder is empty, my chilly fingers are wondering if I can handle the fitting that I put up there to hold it in the tree, with gloves on? I found a fast release shackle from the sailboat and put it up there a week or so ago knowing that there would be a time when I would appreciate not having to untie and retie stiff that stiff cord, this would be such a morning, but the shackle has a split ring on the cotter pin, that won’t come off using gloved fingers.

I feel as if I would write more about a philosophical problem I am thinking about, but I will restrain myself.

Just remember this:—It takes a morning of real cold in order to fully appreciate all that a cup of good, strong coffee has to offer; sip the coffee, stare at the empty bird feeder, watch the sun come up over the apartment buildings, and then make a day.