Kubler-Ross's five stages of grief upon learning of one's imminent demise might also be relevant in acceptance of severe chronic disease.
I've gone through the first two, and will no doubt cycle back now and then:
1) Denial - That stage didn't last long for me. It was hard to argue with my symptoms, hard to deny that my body was failing me.
2) Anger - This, on the other hand, is still pretty fresh. I'm not so angry at the gods--I've been blessed in so many ways in my life, and why should I be immune to pain or "injustice," if that's what illness is, when others on this planet suffer so greatly?
I have often, however, been angry at the health care system and at individual health care providers for a variety of valid reasons, many of which have been described here on The Mary Dell Show.
And although I get upset when I start thinking about how a fragmented system has betrayed me, and how individual physicians and practices have made me feel marginalized, I'm moving beyond anger now.
Why get angry? That's just more energy to expend, when I have so little energy anymore at all.
And so I'm moving into that third stage, bargaining.
I'm beseeching the gods for help since I can't get the help I need from living, breathing human beings.
And my bargain with the gods is that I'll tell my story; I'll try to help other patients in this miserable situation; I'll speak my mind and try to bring the patient back into the health care equation, if the gods will just please let just one doctor among my twenty or so come up with a way to identify the cause of my shortness of breath and lack of stamina.
The patient is very, very sick. Not just me. The whole damned system.
My demise is mirroring the demise of a health care system once based on the needs of the patient, once permitting doctors the time and adequate reimbursement to fully investigate patients' symptoms while getting to know that patient, since often a patient's personality or other traits may help in diagnosis.
Today's health care system is fragmented and incomplete, and it's coming apart at the seams.
I should say we, the patients, are coming apart at the seams while we're paying a bunch of expensive tailors to keep us together. The problem is, we have one tailor who works on one leg, another tailor for the other leg, one for one arm, one for the other, one for the front, another for the back . . .
You get the idea.
And one tailor does not communicate with another tailor. So maybe the pieces all fit together, because each one does the same tests the others do, the same measurements, repeating costs that do not need repeating, but in the end one leg will be clothed in pink wool, the other in cotton seersucker; one arm is leather, and the other is lace.
That's us in that harlequin suit, and the doctors assigned to take care of our gallbladder don't talk to the kidney doctors. The cardiologists don't talk to the pulmonologists, even though the cardio and pulmonary systems are intricately connected.
The neurologists don't talk to the sleep doctors, though sleep disorders are found more and more to originate in the brain, and specific sleep problems can indicate specific brain disorders, guiding future testing and intervention and saving the patient a lot of pain and expense--not to mention the health care system's costs*.
The neurologists also don't talk to the psychiatrists, though nearly every psychological condition today has been linked to neurological conditions as well, thanks to functional MRI and other newly available tests.
I regularly see at least six doctors--my family physician and about five specialists, covering problems from my Ear, Nose, and Throat to my rectum.
I also have a cadre of about five more specialists whom I've seen in the past and who are technically still my doctors, though I don't need to see them regularly because they have adequately treated my condition, such as Dr. Salvatori, my Hopkins endocrinologist; Spironolactone now treats the primary aldosteronism he discovered, but he's there should I need him again.
To look at me, you'd never guess I'd need that many specialists.
But even with all those specialists, I have an unexplained condition ruining my daily quality of life.
Perhaps all the king's specialists in all the king's land can't put the patient I am back together again, but a full review of my case by the federal government, at least, recognized that I am profoundly disabled by the health problems plaguing me.
Yet I still can't be taken seriously by the individual specialists I see, the ones whose tunnel-vision glasses are trained on one specific thing, and I think that's because I honestly don't look like a typical severely ill patient and am therefore taken as a malingerer, even when medical tests show that I am not.
As I've said since Day One, it's bizarre Down the Rabbit Hole of today's health care system, so I guess I shouldn't be surprised by anything anymore.
And I'm not. I'm just tired. I'm tired of fighting for an answer. I'm worn out.
And that leaves me nothing to do but beseech the gods for an answer.
Any doctors out there with a God complex? Fuhget about it. You're not God. A whole lot of you can't even diagnose how a basic bodily function is going wrong in one patient.
I've pretty much had it with the lot of you, with one exception, my neurologist Dr. A. I haven't given up on him yet, and I hope I don't have to. He's the one physician who has connected with me as a human being, who has shown me he cares about my diagnosis and is willing to go out on a limb, just a little bit, really, to help me find my answers.
I'm very lucky to have him. I've no doubt others out there don't even have one champion in the system.
In today's fragmented health care system, most doctors don't see the whole patient, just a little itty bit of the patient he or she treats. Each little bit is treated by a different specialist, and never do the twain, or twenty, speak.
Never are the jigsaw pieces put together to represent the whole patient.
They think electronic health records are going to make this happen.
Really?
They are wrong. I see these as helping little, if any, except in the organization of documents, not in any way benefiting the patient. Supposedly medical analysts are hired to put the pieces together using those electronic records, but for whom?
Who is sitting there at a computer with all my records putting my picture together?
No one.
Besides, I see specialists at different health care institutions, and each institution has its own electronic health care program, and one doesn't "talk to" the systems in the other institutions. So the idea these records will put together a full picture is a bunch of bunk.
It's a very expensive filing and retrieval system, that's all it is. And it's fragmented, just like the rest of the system. And with the privacy issues these huge databases present, I promise you the patients do not stand to benefit.
Electronic health records are only one more layer of distance--and a rather profound one--separating the patient and the practitioner. I describe my own experience as the "digital patient" in an earlier episode.
Now doctors don't even have to look at us. They can look at a screen instead. They don't have to ask us anything; they can read the screen.
Ostensibly, the screen lists questions the practitioner should ask based on the signs and symptoms entered into the system.
But after reading the medical reports on my visits to my cardiologist, I realized he had skipped a lot of these "required" questions and answered them based on his own assumptions. Many of those assumptions were wrong.
The digital patient in my cardiologist's practice is not me. It's a fiction created to satisfy a machine.
A list of "required questions" from a computer program is begging for just such a response. Shortcuts are inevitable, and incorrect information entered into a system, in the end, is just junk. Garbage in, garbage out.
All at our expense. What good is an easily retrieved diagnosis if it's wrong?
Do you think any one of these doctors has the time to talk to one of the others, no matter how frequently their specialties intersect in medical knowledge--not to mention the body of the patient?
And so it is I have sought answers to my shortness of breath and utter exhaustion upon the slightest exertion, along with a documented history of oxygen desaturation in the blood, hypercapnia, and polycythemia, an indication of underoxegenated tissue, for two full years and a new bevy of specialists--to no avail.
In fact, it's been longer than two years, since I was first hospitalized with these symptoms in 2008--and they somewhat resolved for a while, then came back full force, the sort of thing neuromuscular diseases are known to do.
None of the usual tests have yet revealed anything that adequately explains my near-constant debilitation due to breathing/oxygenation issues. Oh, I was diagnosed with sleep apnea and hypersomnolence and put on a CPAP machine, so at least I get enough oxygen at night.
But the problem remains during the day, leaving me nearly confined to my bed because my breath runs out so quickly when I try to do just about anything. And even in bed, as I've described before, since I barely have the stamina to make love to my Honey, something we used to enjoy on a regular and vigorous basis.
The tests have pointed to lots of possibilities, and as a medical librarian it is very easy to find medical guidelines indicating what these possibilities might actually be and what further tests might reveal the underlying causes, but thus far no discussion with a single one of my health professionals has led to an appropriate test (or, in at least one case, an appropriate test was ordered but was not properly applied) other than one: Dr. A's finally ordering a DNA test for myotonic dystrophy, for which I'm still awaiting the results.
If that test is negative, I'll be right back in the primordial ooze with no clear direction forward. I shouldn't have to be the one to figure out what's wrong with me, but if I don't do my own research I know my physicians won't bother.
The fragmentation of health care also creates such distance between physician and patient that said physician knows very little about the whole patient or who that patient actually is.
Thus, no matter how intelligent, knowledgeable, and/or engaged in one's own health a patient may be, that patient will be rushed through the visit with increased skepticism should the patient voice any theories or repeat complaints of symptoms that have not yet been verified by testing.
The patient will say to the pulmonologist, "But, wait, what about this test result by my neurologist," and the pulmonologist will shut down, unwilling to deal with a patient with his or her own ideas about his or her body, even though certain neuromuscular conditions are known to cause oxygenation issues due to weakness of the breathing muscles.
Not one of these doctors has the time to investigate unusual causes of a patient's signs and symptoms. They aren't even interested in obscure possibilities.They have a waiting room full of patients, and they have to see their quota to get reimbursed by a system broken by the increasingly arcane and dysfunctional requirements of insurance companies.
Your doc might check UpToDate, the ubiquitous health care diagnostic tool of the day, if you're lucky. The more obscure your condition is, the less likely a physician will bother.
Easier to chalk up the patient as an attention seeker or malingerer than to have to go an extra mile.
I worked as a medical librarian for years in a community hospital. Before UpToDate pretty much closed every hospital medical library in the country (another blow to adequate patient care, in my humble librarian opinion), I conducted literature searches for physicians on cancers, embolisms, skin conditions, and deadly infectious diseases such as c. diff.
I never got a search for causes of oxygen desaturation.
That's basic stuff to a physician.
Why, then, after seeing all these specialists, has not one of them been able to tell me why my body is registering low oxygen saturation. Why do I still every day with such a lack of energy I can get winded just going from the couch to the kitchen, with no explanation as to why?
I am not overweight. I do as much activity as I'm capable of doing; I am positive this is not a case of being deconditioned.
My ability to exercise has dwindled over the years, with muscles being pulled when I've attempted even light weights on an exercise routine I regularly did in years past. As far back as the 1990s, I've had exaggerated breathing responses to factors such as high altitude.
The two most obvious culprits, my cardio system and my pulmonary system, are checked every six months by specialists, yet neither one of them takes my lack of energy and breath seriously. And then I go home and live with near-complete lack of stamina and breath, day after day, week after week, month after month, until the next visit when the each doctor distinctly makes me feel that I am exaggerating my symptoms.
I hear them talking to one another: "Do you have that same crazy lady who keeps trying to get tested for this or that?" All my requests are based on my medical signs, symptoms, and a thorough research of the literature and a review of evidence-based treatment guidelines. I'm not just throwing out names of tests for the hell of it; I don't want to waste medical dollars. I don't even want to be in those doctors' offices.
If they'd just figure out what the hell this is, I'll be happy to stop haunting their doorsteps.
But because these doctors don't know me, don't know the person I am, they make assumptions about me that are untrue and that further compromise my care.
Dear Viewer, I am not exaggerating my symptoms, and both my Honey and my son who lives near me, as well as fifteen former coworkers, will testify to that fact. They have seen my stamina drop over the years they've known me to the dismal level where it huffs and puffs along at today. If it goes any lower, I'll be bedbound or dead.
But I can't get one of these damned specialists to take me seriously.
I believe there's a neuromuscular reason, and Dr. A, my lovely, wonderful neurologist, has diagnosed me with a neuromuscular disorder.
But the neuromuscular specialist he referred me to at Johns Hopkins, Dr. Red Queen of Down the Rabbit Hole, had no interest in exploring what, in fact, that condition might be and what it might have to do with my daily weakness and shortness of breath, as well as my hypersomnia--sleeping a minimum of 12 hours a day and frequently so much more--17, 20, 30 hours at a clip.
And so I'm desperate. I am well into Stage Three of Life With Chronic Disease. I'm beseeching the gods now--forget the damned doctors.
Please, gods, help me find out why my life is ebbing away, and I won't get mad, no matter how bad the diagnosis might be. I won't bemoan my circumstances. I'll be as good as I can be and live out my life as honorably as I can for the rest of my life, however long that might be.
Please, gods, give one physician enough curiosity and concern about my case to listen to what I'm going through, take me seriously, and order the correct tests.
I don't want to die wondering what it is about me that is so broken. Or that I might have something genetic that could affect my children or nieces in the future.
Nearly every system in my body, just like in the health care system, is broken.
Why?
I was never particularly unhealthy as a very young person, but I became very unhealthy very young compared to "normal" people. I am still only in my mid-fifties, but I might as well be an eighty-five year old woman.
Why? That's all I want to know.
It's a simple question, isn't it? Why can't a dozen specialists figure out a problem in the most fundamental of bodily processes, breathing?
All I want to know is why my body can't breathe adequately to support a life of reasonable stamina.
Will it take an Act of Congress to find out?
Wow--that's not even a joke nowadays, since our health is a political football tossed around by a bunch of money-hungry puppets to the rich.
Good luck to all of us, especially those of us who don't fit the mold. The zebras among the horses. The ones who know just enough NOT to shut up, to keep seeking answers.
Our doctors don't like us; they want us quiet and compliant and stupid. They have a lot of patients to see every day to meet their quota. They have us in their electronic record; why should they bother with the flesh-and-blood patient? We are just an annoyance.
They can pass the buck to the next specialist, or back to our regular doctor, who has to see so many patients in a day there's no way he or she has the time to put the pieces together.
We're in tatters, patients of the U.S. health care system. The system is in tatters.
Your best bet for an explanation for your symptoms may very well be your communication lines to the gods, if you can convince them to care.
Good luck to us all.
______________
*All of which, I'm afraid, benefit the Very Rich who now reap the profits of an out-of-control system designed not to help patients but to make Very Rich fellow citizens ever Richer, which is why they've spent so much money brainwashing the public against Obamacare and the benefits of a single-payer system.
A single-payer system would inevitably pull the fragments together in a way that will never happen in today's splintered system.
And that's just how the vampires making money off our flesh and blood want it.
I've gone through the first two, and will no doubt cycle back now and then:
1) Denial - That stage didn't last long for me. It was hard to argue with my symptoms, hard to deny that my body was failing me.
2) Anger - This, on the other hand, is still pretty fresh. I'm not so angry at the gods--I've been blessed in so many ways in my life, and why should I be immune to pain or "injustice," if that's what illness is, when others on this planet suffer so greatly?
I have often, however, been angry at the health care system and at individual health care providers for a variety of valid reasons, many of which have been described here on The Mary Dell Show.
And although I get upset when I start thinking about how a fragmented system has betrayed me, and how individual physicians and practices have made me feel marginalized, I'm moving beyond anger now.
Why get angry? That's just more energy to expend, when I have so little energy anymore at all.
And so I'm moving into that third stage, bargaining.
I'm beseeching the gods for help since I can't get the help I need from living, breathing human beings.
And my bargain with the gods is that I'll tell my story; I'll try to help other patients in this miserable situation; I'll speak my mind and try to bring the patient back into the health care equation, if the gods will just please let just one doctor among my twenty or so come up with a way to identify the cause of my shortness of breath and lack of stamina.
The patient is very, very sick. Not just me. The whole damned system.
My demise is mirroring the demise of a health care system once based on the needs of the patient, once permitting doctors the time and adequate reimbursement to fully investigate patients' symptoms while getting to know that patient, since often a patient's personality or other traits may help in diagnosis.
Today's health care system is fragmented and incomplete, and it's coming apart at the seams.
I should say we, the patients, are coming apart at the seams while we're paying a bunch of expensive tailors to keep us together. The problem is, we have one tailor who works on one leg, another tailor for the other leg, one for one arm, one for the other, one for the front, another for the back . . .
You get the idea.
And one tailor does not communicate with another tailor. So maybe the pieces all fit together, because each one does the same tests the others do, the same measurements, repeating costs that do not need repeating, but in the end one leg will be clothed in pink wool, the other in cotton seersucker; one arm is leather, and the other is lace.
That's us in that harlequin suit, and the doctors assigned to take care of our gallbladder don't talk to the kidney doctors. The cardiologists don't talk to the pulmonologists, even though the cardio and pulmonary systems are intricately connected.
 |
| One Harlequin patient among many! (From Couples Costumes) |
The neurologists don't talk to the sleep doctors, though sleep disorders are found more and more to originate in the brain, and specific sleep problems can indicate specific brain disorders, guiding future testing and intervention and saving the patient a lot of pain and expense--not to mention the health care system's costs*.
The neurologists also don't talk to the psychiatrists, though nearly every psychological condition today has been linked to neurological conditions as well, thanks to functional MRI and other newly available tests.
I regularly see at least six doctors--my family physician and about five specialists, covering problems from my Ear, Nose, and Throat to my rectum.
I also have a cadre of about five more specialists whom I've seen in the past and who are technically still my doctors, though I don't need to see them regularly because they have adequately treated my condition, such as Dr. Salvatori, my Hopkins endocrinologist; Spironolactone now treats the primary aldosteronism he discovered, but he's there should I need him again.
To look at me, you'd never guess I'd need that many specialists.
But even with all those specialists, I have an unexplained condition ruining my daily quality of life.
Perhaps all the king's specialists in all the king's land can't put the patient I am back together again, but a full review of my case by the federal government, at least, recognized that I am profoundly disabled by the health problems plaguing me.
Yet I still can't be taken seriously by the individual specialists I see, the ones whose tunnel-vision glasses are trained on one specific thing, and I think that's because I honestly don't look like a typical severely ill patient and am therefore taken as a malingerer, even when medical tests show that I am not.
As I've said since Day One, it's bizarre Down the Rabbit Hole of today's health care system, so I guess I shouldn't be surprised by anything anymore.
And I'm not. I'm just tired. I'm tired of fighting for an answer. I'm worn out.
And that leaves me nothing to do but beseech the gods for an answer.
Any doctors out there with a God complex? Fuhget about it. You're not God. A whole lot of you can't even diagnose how a basic bodily function is going wrong in one patient.
I've pretty much had it with the lot of you, with one exception, my neurologist Dr. A. I haven't given up on him yet, and I hope I don't have to. He's the one physician who has connected with me as a human being, who has shown me he cares about my diagnosis and is willing to go out on a limb, just a little bit, really, to help me find my answers.
I'm very lucky to have him. I've no doubt others out there don't even have one champion in the system.
In today's fragmented health care system, most doctors don't see the whole patient, just a little itty bit of the patient he or she treats. Each little bit is treated by a different specialist, and never do the twain, or twenty, speak.
Never are the jigsaw pieces put together to represent the whole patient.
They think electronic health records are going to make this happen.
Really?
They are wrong. I see these as helping little, if any, except in the organization of documents, not in any way benefiting the patient. Supposedly medical analysts are hired to put the pieces together using those electronic records, but for whom?
Who is sitting there at a computer with all my records putting my picture together?
No one.
Besides, I see specialists at different health care institutions, and each institution has its own electronic health care program, and one doesn't "talk to" the systems in the other institutions. So the idea these records will put together a full picture is a bunch of bunk.
It's a very expensive filing and retrieval system, that's all it is. And it's fragmented, just like the rest of the system. And with the privacy issues these huge databases present, I promise you the patients do not stand to benefit.
Electronic health records are only one more layer of distance--and a rather profound one--separating the patient and the practitioner. I describe my own experience as the "digital patient" in an earlier episode.
Now doctors don't even have to look at us. They can look at a screen instead. They don't have to ask us anything; they can read the screen.
Ostensibly, the screen lists questions the practitioner should ask based on the signs and symptoms entered into the system.
But after reading the medical reports on my visits to my cardiologist, I realized he had skipped a lot of these "required" questions and answered them based on his own assumptions. Many of those assumptions were wrong.
The digital patient in my cardiologist's practice is not me. It's a fiction created to satisfy a machine.
A list of "required questions" from a computer program is begging for just such a response. Shortcuts are inevitable, and incorrect information entered into a system, in the end, is just junk. Garbage in, garbage out.
All at our expense. What good is an easily retrieved diagnosis if it's wrong?
Do you think any one of these doctors has the time to talk to one of the others, no matter how frequently their specialties intersect in medical knowledge--not to mention the body of the patient?
And so it is I have sought answers to my shortness of breath and utter exhaustion upon the slightest exertion, along with a documented history of oxygen desaturation in the blood, hypercapnia, and polycythemia, an indication of underoxegenated tissue, for two full years and a new bevy of specialists--to no avail.
In fact, it's been longer than two years, since I was first hospitalized with these symptoms in 2008--and they somewhat resolved for a while, then came back full force, the sort of thing neuromuscular diseases are known to do.
None of the usual tests have yet revealed anything that adequately explains my near-constant debilitation due to breathing/oxygenation issues. Oh, I was diagnosed with sleep apnea and hypersomnolence and put on a CPAP machine, so at least I get enough oxygen at night.
But the problem remains during the day, leaving me nearly confined to my bed because my breath runs out so quickly when I try to do just about anything. And even in bed, as I've described before, since I barely have the stamina to make love to my Honey, something we used to enjoy on a regular and vigorous basis.
The tests have pointed to lots of possibilities, and as a medical librarian it is very easy to find medical guidelines indicating what these possibilities might actually be and what further tests might reveal the underlying causes, but thus far no discussion with a single one of my health professionals has led to an appropriate test (or, in at least one case, an appropriate test was ordered but was not properly applied) other than one: Dr. A's finally ordering a DNA test for myotonic dystrophy, for which I'm still awaiting the results.
If that test is negative, I'll be right back in the primordial ooze with no clear direction forward. I shouldn't have to be the one to figure out what's wrong with me, but if I don't do my own research I know my physicians won't bother.
The fragmentation of health care also creates such distance between physician and patient that said physician knows very little about the whole patient or who that patient actually is.
Thus, no matter how intelligent, knowledgeable, and/or engaged in one's own health a patient may be, that patient will be rushed through the visit with increased skepticism should the patient voice any theories or repeat complaints of symptoms that have not yet been verified by testing.
The patient will say to the pulmonologist, "But, wait, what about this test result by my neurologist," and the pulmonologist will shut down, unwilling to deal with a patient with his or her own ideas about his or her body, even though certain neuromuscular conditions are known to cause oxygenation issues due to weakness of the breathing muscles.
Not one of these doctors has the time to investigate unusual causes of a patient's signs and symptoms. They aren't even interested in obscure possibilities.They have a waiting room full of patients, and they have to see their quota to get reimbursed by a system broken by the increasingly arcane and dysfunctional requirements of insurance companies.
Your doc might check UpToDate, the ubiquitous health care diagnostic tool of the day, if you're lucky. The more obscure your condition is, the less likely a physician will bother.
Easier to chalk up the patient as an attention seeker or malingerer than to have to go an extra mile.
I worked as a medical librarian for years in a community hospital. Before UpToDate pretty much closed every hospital medical library in the country (another blow to adequate patient care, in my humble librarian opinion), I conducted literature searches for physicians on cancers, embolisms, skin conditions, and deadly infectious diseases such as c. diff.
I never got a search for causes of oxygen desaturation.
That's basic stuff to a physician.
Why, then, after seeing all these specialists, has not one of them been able to tell me why my body is registering low oxygen saturation. Why do I still every day with such a lack of energy I can get winded just going from the couch to the kitchen, with no explanation as to why?
I am not overweight. I do as much activity as I'm capable of doing; I am positive this is not a case of being deconditioned.
My ability to exercise has dwindled over the years, with muscles being pulled when I've attempted even light weights on an exercise routine I regularly did in years past. As far back as the 1990s, I've had exaggerated breathing responses to factors such as high altitude.
The two most obvious culprits, my cardio system and my pulmonary system, are checked every six months by specialists, yet neither one of them takes my lack of energy and breath seriously. And then I go home and live with near-complete lack of stamina and breath, day after day, week after week, month after month, until the next visit when the each doctor distinctly makes me feel that I am exaggerating my symptoms.
I hear them talking to one another: "Do you have that same crazy lady who keeps trying to get tested for this or that?" All my requests are based on my medical signs, symptoms, and a thorough research of the literature and a review of evidence-based treatment guidelines. I'm not just throwing out names of tests for the hell of it; I don't want to waste medical dollars. I don't even want to be in those doctors' offices.
If they'd just figure out what the hell this is, I'll be happy to stop haunting their doorsteps.
But because these doctors don't know me, don't know the person I am, they make assumptions about me that are untrue and that further compromise my care.
Dear Viewer, I am not exaggerating my symptoms, and both my Honey and my son who lives near me, as well as fifteen former coworkers, will testify to that fact. They have seen my stamina drop over the years they've known me to the dismal level where it huffs and puffs along at today. If it goes any lower, I'll be bedbound or dead.
But I can't get one of these damned specialists to take me seriously.
I believe there's a neuromuscular reason, and Dr. A, my lovely, wonderful neurologist, has diagnosed me with a neuromuscular disorder.
But the neuromuscular specialist he referred me to at Johns Hopkins, Dr. Red Queen of Down the Rabbit Hole, had no interest in exploring what, in fact, that condition might be and what it might have to do with my daily weakness and shortness of breath, as well as my hypersomnia--sleeping a minimum of 12 hours a day and frequently so much more--17, 20, 30 hours at a clip.
And so I'm desperate. I am well into Stage Three of Life With Chronic Disease. I'm beseeching the gods now--forget the damned doctors.
Please, gods, help me find out why my life is ebbing away, and I won't get mad, no matter how bad the diagnosis might be. I won't bemoan my circumstances. I'll be as good as I can be and live out my life as honorably as I can for the rest of my life, however long that might be.
Please, gods, give one physician enough curiosity and concern about my case to listen to what I'm going through, take me seriously, and order the correct tests.
I don't want to die wondering what it is about me that is so broken. Or that I might have something genetic that could affect my children or nieces in the future.
Nearly every system in my body, just like in the health care system, is broken.
Why?
I was never particularly unhealthy as a very young person, but I became very unhealthy very young compared to "normal" people. I am still only in my mid-fifties, but I might as well be an eighty-five year old woman.
Why? That's all I want to know.
It's a simple question, isn't it? Why can't a dozen specialists figure out a problem in the most fundamental of bodily processes, breathing?
All I want to know is why my body can't breathe adequately to support a life of reasonable stamina.
Will it take an Act of Congress to find out?
Wow--that's not even a joke nowadays, since our health is a political football tossed around by a bunch of money-hungry puppets to the rich.
Good luck to all of us, especially those of us who don't fit the mold. The zebras among the horses. The ones who know just enough NOT to shut up, to keep seeking answers.
Our doctors don't like us; they want us quiet and compliant and stupid. They have a lot of patients to see every day to meet their quota. They have us in their electronic record; why should they bother with the flesh-and-blood patient? We are just an annoyance.
They can pass the buck to the next specialist, or back to our regular doctor, who has to see so many patients in a day there's no way he or she has the time to put the pieces together.
We're in tatters, patients of the U.S. health care system. The system is in tatters.
Your best bet for an explanation for your symptoms may very well be your communication lines to the gods, if you can convince them to care.
Good luck to us all.
______________
*All of which, I'm afraid, benefit the Very Rich who now reap the profits of an out-of-control system designed not to help patients but to make Very Rich fellow citizens ever Richer, which is why they've spent so much money brainwashing the public against Obamacare and the benefits of a single-payer system.
A single-payer system would inevitably pull the fragments together in a way that will never happen in today's splintered system.
And that's just how the vampires making money off our flesh and blood want it.
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