Here's the conundrum about eating.
With respect to the digestive issues and problems, I can't go anywhere if I eat breakfast, brunch or lunch because I don't know how and when the system will react. I can't eat anything if I go anywhere for the same reason.
With respect to the recent problem of Temporomandibular Joint Disorder I'm not supposed to eat or only eat soft foods or liquids, so the muscles and ligament can heal in the proper position. If I eat any food, soft or otherwise, the jaw may still shift out of joint for the rest of the day and has to be gently pushed back into place.
If I eat I get tired, sleepy and go to the bathroom, often. If I don't eat I get tired, sleepy and hungry and still go to the bathroom, only less often.
So that's it, damned if I eat and damned if I don't.
Tuesday, September 6, 2011
Saturday, September 3, 2011
A Lost Year
Tomorrow, Sunday, I turn 62. Precisely about 6 pm to be exact. Yeah, about then, and since a few weeks after that day and time last year I've lost almost the entire year, all of it chasing a digestive system that went south and having a good doctor who understands but specialists who don't. I'd say they suck, but that's impolite, even if it is appropriate.
There's nothing worse than a specialist who is totally dismissive and condescending. Really. She didn't want to hear what I had to say and even interrupted me to say it was my imagination and that every thing was normal, at least according to the results of the proceedures and lab tests, but they didn't look for what I wanted to know, only for obvious abnormalities. Which is ok if that exists, but they wouldn't answer my question, what i if normal is abnormal.
And so what happened, like you want to hear a story that's not much except irritating to live with and frustrating to find an answer? After taking some photos of the tissues masses the doctor finally said they clearly appear to be blood clots, or most of them, some were really, "Huh?" masses.
Anyway, she ordered lab tests for some, except they didn't analyze them for what we were looking for, only for the obvious. Like one had blood vessels attached and they didn't see it or at least said they did, or they called it normal tissue. The thought was that my small intestine is bleeding in several places, or so it appeared from mulitple moderate to large clots.
Anyway, as always happens, it got better after the latest tests where it's not obvious (blood clots) but still a problem with consistent mild to moderate diarrhea, like 3-5 times a day depending on when and what I eat. It's more of the same I tell my doctor, "I only feel good when I don't eat and that's not a promise things won't still go wrong."
So, from last October when it started to just a few weeks ago, I spent chasing diagnoses for something no one can find, or really wants to look, and without a diagnosis I can't get more test to eliminate ideas. The new cost-efficient and effective healthcare, if it's not obvious, then you don't get test. You only get them when the doctors think something is wrong.
It's the catch-22. You know something is wrong but they don't believe you, so you can't prove it either way because they won't order test because they don't think something is wrong, only it's your imagination, or your diet, lifestyle, health, fitness, etc, but still it's you. So I'm back to square one only 11 months later and older.
On top of that, last winter they discovered a 20% blockage of my Aorta, you know the artery that supplies blood to the lungs to replenish the oxygen in the bloodstream and leave carbon dioxide behind to exhale. It's been there about 20 years since I noticed I get short of breath when I exert myself and I have to rest or slow up to catch up.
I had some of the more extensive heart tests where they discovered it. Otherwise, my heart is good and sound, only one very small artery on the bottom with a slight blockage at a high heart race, which is the reason it can race from normal to over 180 beats per secongs in seconds, which is what happens when I exert myself. My heart races trying to feed the lungs with blood but can't until the body slows up to balance the supply versus the demand.
So on statin drugs I went, which last about 2 months when my body crashed. This is not uncommon but two statin drugs later, the same results but each time the reaction is sooner and worse, so I'm off statin drugs until the cardiologist has some ideas. Because it's only a slight, long-lived blockage, the only issue the high cholesterol which they want to get below normal where it's never been.
So that's on the horizon when I can get the digestive problems sorted out or better, or we can find something that fits in to those problems and not thoroughly crash the body into being a permanent couch potato. And this last June I got Temporomandibular Joint Disorder (TMD) where the joint in the upper jaw shifts position.
It's caused by the cartildge shifting, yes, it's not permanently attached to anything, from tired or weakened muscles and ligaments or from pressure from chewing. It's often caused by stress or other physical problems. So when I eat my jaw shifts slightly to the right and the teeth don't fit and sometimes grind. The dentist wasn't optimistic it's cureable but merely treatable.
And as always my Raynaud's Syndrome effects both my hands and feet now. Below 50 my toes swell and turn bright red, along with the feet swelling unless I keep them inside shoes, but then swell when I take the shoes off. My hands are still the same, it takes temperatures near 40 before they become stiff and cracked.
Gee, and they say life doesn't suck. Wait, that's doctors. Life just is what it is. And the sad part is that the last 3+ years chasing a minor digestive problem into a bigger one (March 2008 to October 2010 for the minor ailment and this from there for the obvious one no one wants to see) has diverted another change in progress, which has had it's own issues and problems, but that's another story.
The rest of the issue I don't have a choice but to live with them. The digestive one is optional but first I have to find a specialist who will listen enough to think beyond obvious and think beyond routine test. I'd rather they do that and prove something, even if I'm wrong, than keep hearing it's me. But then without a diagnosed problem I don't get a specialist or tests.
Maybe the next year will be, like what, better?
There's nothing worse than a specialist who is totally dismissive and condescending. Really. She didn't want to hear what I had to say and even interrupted me to say it was my imagination and that every thing was normal, at least according to the results of the proceedures and lab tests, but they didn't look for what I wanted to know, only for obvious abnormalities. Which is ok if that exists, but they wouldn't answer my question, what i if normal is abnormal.
And so what happened, like you want to hear a story that's not much except irritating to live with and frustrating to find an answer? After taking some photos of the tissues masses the doctor finally said they clearly appear to be blood clots, or most of them, some were really, "Huh?" masses.
Anyway, she ordered lab tests for some, except they didn't analyze them for what we were looking for, only for the obvious. Like one had blood vessels attached and they didn't see it or at least said they did, or they called it normal tissue. The thought was that my small intestine is bleeding in several places, or so it appeared from mulitple moderate to large clots.
Anyway, as always happens, it got better after the latest tests where it's not obvious (blood clots) but still a problem with consistent mild to moderate diarrhea, like 3-5 times a day depending on when and what I eat. It's more of the same I tell my doctor, "I only feel good when I don't eat and that's not a promise things won't still go wrong."
So, from last October when it started to just a few weeks ago, I spent chasing diagnoses for something no one can find, or really wants to look, and without a diagnosis I can't get more test to eliminate ideas. The new cost-efficient and effective healthcare, if it's not obvious, then you don't get test. You only get them when the doctors think something is wrong.
It's the catch-22. You know something is wrong but they don't believe you, so you can't prove it either way because they won't order test because they don't think something is wrong, only it's your imagination, or your diet, lifestyle, health, fitness, etc, but still it's you. So I'm back to square one only 11 months later and older.
On top of that, last winter they discovered a 20% blockage of my Aorta, you know the artery that supplies blood to the lungs to replenish the oxygen in the bloodstream and leave carbon dioxide behind to exhale. It's been there about 20 years since I noticed I get short of breath when I exert myself and I have to rest or slow up to catch up.
I had some of the more extensive heart tests where they discovered it. Otherwise, my heart is good and sound, only one very small artery on the bottom with a slight blockage at a high heart race, which is the reason it can race from normal to over 180 beats per secongs in seconds, which is what happens when I exert myself. My heart races trying to feed the lungs with blood but can't until the body slows up to balance the supply versus the demand.
So on statin drugs I went, which last about 2 months when my body crashed. This is not uncommon but two statin drugs later, the same results but each time the reaction is sooner and worse, so I'm off statin drugs until the cardiologist has some ideas. Because it's only a slight, long-lived blockage, the only issue the high cholesterol which they want to get below normal where it's never been.
So that's on the horizon when I can get the digestive problems sorted out or better, or we can find something that fits in to those problems and not thoroughly crash the body into being a permanent couch potato. And this last June I got Temporomandibular Joint Disorder (TMD) where the joint in the upper jaw shifts position.
It's caused by the cartildge shifting, yes, it's not permanently attached to anything, from tired or weakened muscles and ligaments or from pressure from chewing. It's often caused by stress or other physical problems. So when I eat my jaw shifts slightly to the right and the teeth don't fit and sometimes grind. The dentist wasn't optimistic it's cureable but merely treatable.
And as always my Raynaud's Syndrome effects both my hands and feet now. Below 50 my toes swell and turn bright red, along with the feet swelling unless I keep them inside shoes, but then swell when I take the shoes off. My hands are still the same, it takes temperatures near 40 before they become stiff and cracked.
Gee, and they say life doesn't suck. Wait, that's doctors. Life just is what it is. And the sad part is that the last 3+ years chasing a minor digestive problem into a bigger one (March 2008 to October 2010 for the minor ailment and this from there for the obvious one no one wants to see) has diverted another change in progress, which has had it's own issues and problems, but that's another story.
The rest of the issue I don't have a choice but to live with them. The digestive one is optional but first I have to find a specialist who will listen enough to think beyond obvious and think beyond routine test. I'd rather they do that and prove something, even if I'm wrong, than keep hearing it's me. But then without a diagnosed problem I don't get a specialist or tests.
Maybe the next year will be, like what, better?
Friday, August 5, 2011
It's the Little Things
It's always the little things, but with age, they compound themselves over your life and somewhere between the time you're 50 and 60 they begin to become noticed, and then after 60 they become real, the daily part of your life you can't ignore and have to resolve to live until the reason can be found and fixed or for the rest of your life. Those pesky little things.
I'm no different, and time, age, genes and life has found me and given me some of them I now live with and hate to no end. Yeah, just bitching about and at life. Nothing new, just mine and me, like everyone else facing being over 60 and the pesky little things become part of myself and what I now live with. They're annoying, but there is nothing I can do about some of them.
And then some new ones seem to find you, or me in this case, to add to the list of those pesky little things. And what, if you're still reading this and wonder what?
Well, for one, the Raynaud's Syndrome which have had in my hands since my early 40's found my toes two winters ago and since then they're progressively getting worse. They're now perpetually swollen and red no matter the temperature and my feet, especially my right foot, often swells too. Kinda' makes shoes uncomfortable.
I know it's not something else as I've done the things to help other problems and nothing changes very much. The ends of them are always mildly to moderatley scabbed and in cold weather look like little popsicle only to turn cherry red when the weather warms up, still popsicles just red.
In June I came down with Temporomandibular joint disorder (TMJ) when the cartlidge in my upper left jaw shifted and the joint has a mild to moderate clicking sound. The dentist agreed and could only suggest an OTC to help reduce the inflamation and time. Then when eating a few weeks ago there were some very loud clicks and most of it faded imediately but not all, so now it's a little inconvenient click with soreness.
I learned the cartlidge in the jaw is permanently atttached to anything but floats in the joint, held in place by ligaments and muscles, and the cartlidge can, and will as I experienced, shift causing noise, problems and more so pain. Lots of pain. A number of years ago I had a blockage in a salivary gland which almost required surgery. Not fun so, at least this isn't as bad and, like that probem then, slowly healing.
I've written about my digestive issues, and we're slowly resolving them. We'll know more in a month or so when the lab analyzes the samples of the tissue masses, but the current diagnosis is that the masses are blood clots from the small intestine because it's bleeding, and likely in several places. When the lab confirms what the tissues are, and all aren't just clots but something else too, then I'll get to see a gastroentrologist.
I haven't decided if I want to go back to the first one, she was condescending and dismissive, but with real evidence it would be hard to deny it's my imagination this time and hard not to think her initial diagnosis of IBS, age and diet, was premature to say the least and now worse because of her decision not to get more information. I'll make that decision when we have something.
On top of that, the whole issue has made me add 10-12 pounds I can't seem to lose. I don't overeat, and am eating less these days and still gaining weight. Yes, I'm not exercising as much and that's critical for me as I easily gain weight when I don't exercise, but this weight has come since last October and this problem. It's a sudden weight gain, something I really hate the feeling.
Now, well, slowly developing over the last few years and only recently really obvious, my left hand goes numb. Namely 2-3 fingers. It's always been a problem when sleeping and why I can't sleep on my left side, my left hand goes completely numb after about 15-20 minutes. Not fun waking up with that feeling, or lack of it.
I'm sure there are many people, if any are reading this blog, who would say, tough shit or live with it. Like I have a choice. I can and we will resolve the digestive issue, not that I look forward to the examination and proceedures, but still maybe something better than bathroom visits 4-5 times a day. The rest, yes, I will learn, as I have, to adapt and adjust, and just be pissed at what life handed me.
I know it could easily be worse, far worse, and I'm lucky there. So, this entry is more a rant or vent on life than anything, and all those pesky little things that hide until you're 60 and remind you about yourself. Nothing you can undo or change, and everything you have to live with from now on until life decides otherwise.
I'm no different, and time, age, genes and life has found me and given me some of them I now live with and hate to no end. Yeah, just bitching about and at life. Nothing new, just mine and me, like everyone else facing being over 60 and the pesky little things become part of myself and what I now live with. They're annoying, but there is nothing I can do about some of them.
And then some new ones seem to find you, or me in this case, to add to the list of those pesky little things. And what, if you're still reading this and wonder what?
Well, for one, the Raynaud's Syndrome which have had in my hands since my early 40's found my toes two winters ago and since then they're progressively getting worse. They're now perpetually swollen and red no matter the temperature and my feet, especially my right foot, often swells too. Kinda' makes shoes uncomfortable.
I know it's not something else as I've done the things to help other problems and nothing changes very much. The ends of them are always mildly to moderatley scabbed and in cold weather look like little popsicle only to turn cherry red when the weather warms up, still popsicles just red.
In June I came down with Temporomandibular joint disorder (TMJ) when the cartlidge in my upper left jaw shifted and the joint has a mild to moderate clicking sound. The dentist agreed and could only suggest an OTC to help reduce the inflamation and time. Then when eating a few weeks ago there were some very loud clicks and most of it faded imediately but not all, so now it's a little inconvenient click with soreness.
I learned the cartlidge in the jaw is permanently atttached to anything but floats in the joint, held in place by ligaments and muscles, and the cartlidge can, and will as I experienced, shift causing noise, problems and more so pain. Lots of pain. A number of years ago I had a blockage in a salivary gland which almost required surgery. Not fun so, at least this isn't as bad and, like that probem then, slowly healing.
I've written about my digestive issues, and we're slowly resolving them. We'll know more in a month or so when the lab analyzes the samples of the tissue masses, but the current diagnosis is that the masses are blood clots from the small intestine because it's bleeding, and likely in several places. When the lab confirms what the tissues are, and all aren't just clots but something else too, then I'll get to see a gastroentrologist.
I haven't decided if I want to go back to the first one, she was condescending and dismissive, but with real evidence it would be hard to deny it's my imagination this time and hard not to think her initial diagnosis of IBS, age and diet, was premature to say the least and now worse because of her decision not to get more information. I'll make that decision when we have something.
On top of that, the whole issue has made me add 10-12 pounds I can't seem to lose. I don't overeat, and am eating less these days and still gaining weight. Yes, I'm not exercising as much and that's critical for me as I easily gain weight when I don't exercise, but this weight has come since last October and this problem. It's a sudden weight gain, something I really hate the feeling.
Now, well, slowly developing over the last few years and only recently really obvious, my left hand goes numb. Namely 2-3 fingers. It's always been a problem when sleeping and why I can't sleep on my left side, my left hand goes completely numb after about 15-20 minutes. Not fun waking up with that feeling, or lack of it.
I'm sure there are many people, if any are reading this blog, who would say, tough shit or live with it. Like I have a choice. I can and we will resolve the digestive issue, not that I look forward to the examination and proceedures, but still maybe something better than bathroom visits 4-5 times a day. The rest, yes, I will learn, as I have, to adapt and adjust, and just be pissed at what life handed me.
I know it could easily be worse, far worse, and I'm lucky there. So, this entry is more a rant or vent on life than anything, and all those pesky little things that hide until you're 60 and remind you about yourself. Nothing you can undo or change, and everything you have to live with from now on until life decides otherwise.
Sunday, June 19, 2011
Father's Day
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.
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.
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.
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