I was wandering around the Web and found an interesting blog, found here and got to thinking if there was anything beyond my existence as his son that I'm thankful about as his son. And sadly nearly 17 years after his death, which I wrote about it two years ago, I struck me with the blog entries he did it before me.
And the "it" is? Well, when he was 19 after his first year of college his Dad told him the same thing he told me then, meaning the front door, but he got to stay around awhile until the war started and he enlisted in the Army 1940. He then served 23-plus years and rarely went home again. His Dad died when we were in England, and as far as I know didn't go home to Kansas for the funeral.
Anyway, the blog about Dad doing it before us is right, my Dad did to me what his Dad did to him. My Dad treated his oldest son, my brother, like his Dad treated his oldest son, my uncle, the same way, as the son who stuck around hom and could do no wrong. My Dad was the black sheep of the family as I became because we were the same at that age.
But I won't thank my Dad as he never said, "I love you.", beyond when it's expected. He was a very private person and rarely even said it to Mom in front of us kids, so I couldn't expect it from him. He probably did what he learned from his Dad, who did it before him. The English half of my family (the other German).
I will, however, thank my Mom when she said a few years before he died, "Do me a favor, don't become your father." Ok, thanks Dad for showing me how not to be. You did that before me as your father did it before you. I owe for that, but don't expect a thanks for it. It took me too long to realize it and change.
The only thing you taught me was what I taught myself. And that you didn't do before me.
Sunday, June 19, 2011
Tuesday, May 3, 2011
Looking for Abnormal
I was trying to think why the Gastroenterologist(s) can't seem to think that something is wrong. Well, besides the obvious that they assume something wrong is obvious, even after the patient flushes away most if not almost all the signs of something with the preparation liquids which cleanses the digestive tract for the proceedure. And besides the fact they're looking for something abnormal instead of normal being abnormal.
Well, my thought while making coffee this morning? It's not what they're looking for that matters but what they're looking at that matters. They're looking for something wrong. When they don't see anything wrong and the lab test (biopsies) are "normal" then they think everything is normal.
But it's what they're looking at that is the problem, the normal which isn't normal, but since the "evidence" isn't there and what they see is normal, then they don't suspect the normal is abnormal. That's because when normal is abnormal, then the abnormality, in their thinking, should be there, and when it's not, then normal isn't abnormal.
That's because they looking for those abnormalities. So when the results are normal, then it's the patient and it must be IBS, age, diet, and all thing the patient is doing wrong. Except when a recent finding noted there are actually three distinct types of digestive bacteria, then what is normal for whom?
When Gastroenterologists have always assumed one size, or type with digestive bacteria, fits all, then what about the others with the other types which are distinctly different? They're not looking for anything different, they're asuming the standard and when there are no signs of any difference, then nothing is different. Except everything is different, and all the abnormalities are different too.
So, what they thought was normal, isn't normal for that type. I can say this because we, as patients, know what are body is telling us, and when it says something is wrong and there is a difference from before it started, then we're frustrated with the medical profession over their inane insenstivity about our condition and us. And blow us off as an overly sensitive and obsessed patient.
And that's also now the crux of the issue. When the patients knows the symptoms and sees the signs of something wrong, including that which seem to defy the Gastroenterologist's knowledge, or what they take as common knowledge, then there isn't much the patient can do short of looking for a specialist who will listen and maybe actually do something to help. What's the adage there, good luck?
Which gets to my question, even if the specialists actually knew something was wrong and they had the test results which showed normal was abnormal, what if there isn't anything they could do anyway? What if there wasn't any treatment, no drug and really no cure. That the abnormal is the patient's new normal. Get used to it?
Gee, that's comforting. But isn't that one of the most common results? How many times do doctors and specialists chase the conditions to find there isn't anything they can determine, and nothing they can do, or at least all the known treatments have little, if any, effect and no cure?
I say that because here's what I know. I have a normal bacteria that is abnormally out of control for periods of time until the body finally rids the tissue masses from the digestive system. The body, meaning me, then feels good and normal again, just like before it all started, for awhile until the bacteria gets out of control again, triggered, by of course, food.
And since it's not a known bacteria which does get out of control, the specialists don't know what do look for or what to do when they see it. And there isn't anything they can do anyway even in the face of all the information. They're as useful as we are about it, meaning useless, so what do they do? They don't see it as abnormal, and our abnormal is their normal, so our abnormal doesn't exist.
It's easy for them to just be blind to see beyond their own knowledge and experience. If it's not obvious and not obviously abnormal, in their eyes and mind, then nothing is wrong except the patient's own view of things. It's, as they like to say now, IBS, age and diet, when in fact it's their own indifference and ignorance, and their own insensitivity to want to understand to learn.
And they blame the patient and cite the common wisdom about IBS, age, diet, exercise, or lack of it, and other things. Have a nice day. Next patient please.
Well, my thought while making coffee this morning? It's not what they're looking for that matters but what they're looking at that matters. They're looking for something wrong. When they don't see anything wrong and the lab test (biopsies) are "normal" then they think everything is normal.
But it's what they're looking at that is the problem, the normal which isn't normal, but since the "evidence" isn't there and what they see is normal, then they don't suspect the normal is abnormal. That's because when normal is abnormal, then the abnormality, in their thinking, should be there, and when it's not, then normal isn't abnormal.
That's because they looking for those abnormalities. So when the results are normal, then it's the patient and it must be IBS, age, diet, and all thing the patient is doing wrong. Except when a recent finding noted there are actually three distinct types of digestive bacteria, then what is normal for whom?
When Gastroenterologists have always assumed one size, or type with digestive bacteria, fits all, then what about the others with the other types which are distinctly different? They're not looking for anything different, they're asuming the standard and when there are no signs of any difference, then nothing is different. Except everything is different, and all the abnormalities are different too.
So, what they thought was normal, isn't normal for that type. I can say this because we, as patients, know what are body is telling us, and when it says something is wrong and there is a difference from before it started, then we're frustrated with the medical profession over their inane insenstivity about our condition and us. And blow us off as an overly sensitive and obsessed patient.
And that's also now the crux of the issue. When the patients knows the symptoms and sees the signs of something wrong, including that which seem to defy the Gastroenterologist's knowledge, or what they take as common knowledge, then there isn't much the patient can do short of looking for a specialist who will listen and maybe actually do something to help. What's the adage there, good luck?
Which gets to my question, even if the specialists actually knew something was wrong and they had the test results which showed normal was abnormal, what if there isn't anything they could do anyway? What if there wasn't any treatment, no drug and really no cure. That the abnormal is the patient's new normal. Get used to it?
Gee, that's comforting. But isn't that one of the most common results? How many times do doctors and specialists chase the conditions to find there isn't anything they can determine, and nothing they can do, or at least all the known treatments have little, if any, effect and no cure?
I say that because here's what I know. I have a normal bacteria that is abnormally out of control for periods of time until the body finally rids the tissue masses from the digestive system. The body, meaning me, then feels good and normal again, just like before it all started, for awhile until the bacteria gets out of control again, triggered, by of course, food.
And since it's not a known bacteria which does get out of control, the specialists don't know what do look for or what to do when they see it. And there isn't anything they can do anyway even in the face of all the information. They're as useful as we are about it, meaning useless, so what do they do? They don't see it as abnormal, and our abnormal is their normal, so our abnormal doesn't exist.
It's easy for them to just be blind to see beyond their own knowledge and experience. If it's not obvious and not obviously abnormal, in their eyes and mind, then nothing is wrong except the patient's own view of things. It's, as they like to say now, IBS, age and diet, when in fact it's their own indifference and ignorance, and their own insensitivity to want to understand to learn.
And they blame the patient and cite the common wisdom about IBS, age, diet, exercise, or lack of it, and other things. Have a nice day. Next patient please.
Monday, April 25, 2011
And so what now
It's been two months since I wrote the last entry about why some medical tests fail, for the obvious reason the preparation remove much of if not nearly all of the signs of any abnormal condition and the proceedure is looking for both the obvious and the abnormal. This means the test will miss the obvious when normal is abnormal, it's something they're not looking for and not seeing.
But that's aside from the conundrum between my digestive condition and my pulmonary artery condition. What's good for my digestive system, meaning food which it will tolerate, and what's good for my artery, meaning drugs, namely statin drugs to reduce my cholesterol and hopefully begin to remove the plaque on the artery, a 20% blockage if you don't remember. It's significant but not enough to warrant further proceedures or surgical intervention.
What's left on the table now is that I'm at the age, and have the genetic predispostion, to have additional problems from a higher than normal cholesterol level (in the mid 200's), such as additional plaque and late onset type-II diabetes, which my father had later in his life and really wrecked his one hobby, cooking and food.
In the time since the last entry, I've been on full dosage of a statin drug (Simvastatin) and off it, several times and then permanently when it crashed my digestive system and my body. I became a couch potato and did very little else. Everytime I went off I started to feel better and every time I went back on it, even at half and then quarter dose, I crashed.
So I went off it permanently and about a month later felt almost good again. Ok, but not great. Then my cardiologist prescribed another statin drug in the form of a health supplement (Red Yeast Rice similar to lovastatin). Well, less than a week into it, ditto, the same thing, my digestive system and my body started to crash. I went off and am slowly feeling better again.
And that's the conundrum. The two aren't compatible for successful treatment for both. One has to get and be better and the other suffer what happens. The digestive systems seems to be getting better with time, and watching my diet to avoid foods which cause temporary problems, or just get through those periods when it does. But it's a matter of the body solving itself.
We know the artery problem won't get better unless somethings happens and I change. I'm working on the latter, but it won't be enough, that's obvious. It started and happened when I was in my best health and fitness so anything less won't make it better. But I can slow down or stop making it worse, and then hope the body can and will do something to help, all by itself, at least keep it from getting worse.
So that's the tale to date. It's the old adage, if the illness doesn't kill me, the (drug) treatments will. So, it's choose my own poison. And so far I've chosen food and living than being a nothing on a couch.
But that's aside from the conundrum between my digestive condition and my pulmonary artery condition. What's good for my digestive system, meaning food which it will tolerate, and what's good for my artery, meaning drugs, namely statin drugs to reduce my cholesterol and hopefully begin to remove the plaque on the artery, a 20% blockage if you don't remember. It's significant but not enough to warrant further proceedures or surgical intervention.
What's left on the table now is that I'm at the age, and have the genetic predispostion, to have additional problems from a higher than normal cholesterol level (in the mid 200's), such as additional plaque and late onset type-II diabetes, which my father had later in his life and really wrecked his one hobby, cooking and food.
In the time since the last entry, I've been on full dosage of a statin drug (Simvastatin) and off it, several times and then permanently when it crashed my digestive system and my body. I became a couch potato and did very little else. Everytime I went off I started to feel better and every time I went back on it, even at half and then quarter dose, I crashed.
So I went off it permanently and about a month later felt almost good again. Ok, but not great. Then my cardiologist prescribed another statin drug in the form of a health supplement (Red Yeast Rice similar to lovastatin). Well, less than a week into it, ditto, the same thing, my digestive system and my body started to crash. I went off and am slowly feeling better again.
And that's the conundrum. The two aren't compatible for successful treatment for both. One has to get and be better and the other suffer what happens. The digestive systems seems to be getting better with time, and watching my diet to avoid foods which cause temporary problems, or just get through those periods when it does. But it's a matter of the body solving itself.
We know the artery problem won't get better unless somethings happens and I change. I'm working on the latter, but it won't be enough, that's obvious. It started and happened when I was in my best health and fitness so anything less won't make it better. But I can slow down or stop making it worse, and then hope the body can and will do something to help, all by itself, at least keep it from getting worse.
So that's the tale to date. It's the old adage, if the illness doesn't kill me, the (drug) treatments will. So, it's choose my own poison. And so far I've chosen food and living than being a nothing on a couch.
Saturday, February 26, 2011
When Tests Fail
I was thinking, as it seems a lot of late considering the situation and circumstances, about why the Gastroenterologist couldn't find and didn't report any "abnormal" with my recent test (colonoscopy and lab tests). In her words, "Everything is normal", and despite the obvious symptoms of something being wrong, she decided the problems were IBS, age and food sensitivities.
As the old saying goes, "Yeah, right." But in defense of her, from her perspective, and while there was reason to investigate the problems more and didn't, she went with the obvious. Except that at the same time, she dismissed the obvious of why the results failed. There are two reasons.
First, with a colonoscopy you have to do the preparation preceedure which is 2 quarts of a liquid which flushes and cleanes the intestinal tract. I mean really flush and cleanse, no pun intended. It's terrible stuff and causes terrible reactions. The problem is that, while food and all the normal stuff in the testinal tract is flushed and the tract wall cleansed, any signs of problems is also flushed away.
The colonoscopy is designed to look for obvious physical problems, such as infections, perferations, etc of the wall, protrubing polyps, and other problems. Lacking those, the diagnosis is that everything is normal. Except, what was lost in the flushing and cleansing which would have indiciated problems, no one will know because that's all down the toliet.
Second, the lab test looks for the obvious. When everything is normal, then obviously to them, everything is normal. But that only accounts for the signs of the normal biochemical processes. It misses one obvious issue and raises the question.
What if normal is abnormal? This is what Pseudomembranous colitis is, an abnormal and uncontrolled growth of the normal bacteria in the intestinal tract. In some cases the infection, of which only a few have been recognized, leave signs in the wall of the tract. But what of the other bacteria which don't leave signs but create the same symptoms?
What if the preparation proceedure removes all the obvious signs of any abnormal and uncontrolled growth of bacteria? And wouldn't the abnormal growth of any normal bacteria in the intestinal tract produce similar symptoms but won't necessarily be obvious?
This is something they can't answer, partly because they don't know and partly because they don't test for them since it's harder and not obvious. So they call it your imagination, but in medical terms like IBS, age and food sensititives. It's the line from the Dire Straits song, "You have industrial disease. Next patient please."
So that's where I'm at. The symptoms haven't changed for the last 3 years now and more so since last October. But the test show everything is normal and thus it's my imagination. Tell my intestinal tract that. It's not listening.
As the old saying goes, "Yeah, right." But in defense of her, from her perspective, and while there was reason to investigate the problems more and didn't, she went with the obvious. Except that at the same time, she dismissed the obvious of why the results failed. There are two reasons.
First, with a colonoscopy you have to do the preparation preceedure which is 2 quarts of a liquid which flushes and cleanes the intestinal tract. I mean really flush and cleanse, no pun intended. It's terrible stuff and causes terrible reactions. The problem is that, while food and all the normal stuff in the testinal tract is flushed and the tract wall cleansed, any signs of problems is also flushed away.
The colonoscopy is designed to look for obvious physical problems, such as infections, perferations, etc of the wall, protrubing polyps, and other problems. Lacking those, the diagnosis is that everything is normal. Except, what was lost in the flushing and cleansing which would have indiciated problems, no one will know because that's all down the toliet.
Second, the lab test looks for the obvious. When everything is normal, then obviously to them, everything is normal. But that only accounts for the signs of the normal biochemical processes. It misses one obvious issue and raises the question.
What if normal is abnormal? This is what Pseudomembranous colitis is, an abnormal and uncontrolled growth of the normal bacteria in the intestinal tract. In some cases the infection, of which only a few have been recognized, leave signs in the wall of the tract. But what of the other bacteria which don't leave signs but create the same symptoms?
What if the preparation proceedure removes all the obvious signs of any abnormal and uncontrolled growth of bacteria? And wouldn't the abnormal growth of any normal bacteria in the intestinal tract produce similar symptoms but won't necessarily be obvious?
This is something they can't answer, partly because they don't know and partly because they don't test for them since it's harder and not obvious. So they call it your imagination, but in medical terms like IBS, age and food sensititives. It's the line from the Dire Straits song, "You have industrial disease. Next patient please."
So that's where I'm at. The symptoms haven't changed for the last 3 years now and more so since last October. But the test show everything is normal and thus it's my imagination. Tell my intestinal tract that. It's not listening.
Monday, February 21, 2011
Fear of Eating
I wrote about food and my body, and about the battle between my taste buds and my digestive system. It finally occurred to me that I have a fear of eating. Not the many definitions of fear of eating, but a simple fear of eating, despite that I really like to eat and really like food, because I don't know how my body, and more so my digestive system, will work and react.
I used to keep a list of foods I could eat without problems, foods I keep trying now and then to see, and hope, I can eat them more, foods I know I will have problems and foods I just can't eat. During the last nearly three years that list was always changing and it still continues to change. For brief periods during these years, I could throw the lists away and eat almost anything and the body was ok.
Since last fall, the list has changed weekly and sometimes in days, and for periods nothing was on the list. It's created a situation where I fear eating because I don't know what I can eat because the digestive system just won't work. Nothing changes it and nothing helps it. And as quickly as the system stopped working, it would work, I mean (hint) really work.
I don't have answers anymore. Not even the Gastroenterologist has answers beyond IBS, age and food sensitive, and of course the obvious advice you hear everywhere, eat right, watch your diet, exercise, get the proper amount of sleep, and so on down the litany of common sense. And you pay a specialist for it?
So, that's my life for now. Eat and hope it works today, tomorrow and a few days on, or not and be ready when it doesn't.
I used to keep a list of foods I could eat without problems, foods I keep trying now and then to see, and hope, I can eat them more, foods I know I will have problems and foods I just can't eat. During the last nearly three years that list was always changing and it still continues to change. For brief periods during these years, I could throw the lists away and eat almost anything and the body was ok.
Since last fall, the list has changed weekly and sometimes in days, and for periods nothing was on the list. It's created a situation where I fear eating because I don't know what I can eat because the digestive system just won't work. Nothing changes it and nothing helps it. And as quickly as the system stopped working, it would work, I mean (hint) really work.
I don't have answers anymore. Not even the Gastroenterologist has answers beyond IBS, age and food sensitive, and of course the obvious advice you hear everywhere, eat right, watch your diet, exercise, get the proper amount of sleep, and so on down the litany of common sense. And you pay a specialist for it?
So, that's my life for now. Eat and hope it works today, tomorrow and a few days on, or not and be ready when it doesn't.
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