Aa
Letter to my Healthy Friends
Does anyone still have a copy of a letter that was posted a couple years ago about how to talk to and treat people with a long term illness?
I can't find it and it was a great letter. Some of the points were:
Don't tell me I don't look sick.
Well, okay maybe I don't remember many of the other points. Just listen if I want to talk, etc. etc.
Thank you very much! Valorie
I can't find it and it was a great letter. Some of the points were:
Don't tell me I don't look sick.
Well, okay maybe I don't remember many of the other points. Just listen if I want to talk, etc. etc.
Thank you very much! Valorie
Whats up?
Is his from the other side?
I'm not quit there yet - stuck somewhere in between - like purgatory....waiting for the 4 wk post UND report and trying to harness the pain
Is his from the other side?
I'm not quit there yet - stuck somewhere in between - like purgatory....waiting for the 4 wk post UND report and trying to harness the pain
3. THE EMOTIONS OF CHRONIC DISEASE
Patients battling rheumatoid disease will undergo both physical and emotional changes, but for most of those who treat the disease with antibiotic therapy, the outcome will be very different from traditional outcomes. The following is a chronicling of the internal, emotional changes which take place within the course of a disease or even within a rheumatoid flare period or perhaps with any chronic disease or illness. Time is compressed and there may be a variation in the order of these manifestations. There may, of course, be other manifestations unique to the individual, since any disease is as individualized as the host or patient in which it resides.
The onset of disease or of a flare is similar, usually beginning with extreme fatigue. You find that you begin to sleep whenever possible, constantly needing more and more hours of down time. As the fatigue becomes ever more dominant in your life, an accompanying, but incipient loss of interest in most things which were previously important-your job, hobbies, home, spouse, and even children increases. Your focus turns inward to a self-protected type of self-centeredness to the selfishness of survival. There is no ability to concentrate on other things no focus. Frequently, there may even be an irrational lashing out, particularly at those who you love the most or at those with whom you work, in short, a short fuse syndrome.
Eventually, accompanying the fatigue are physical symptoms such as stiffness, swelling or pain, and a depression which deepens with the increasing physical ramifications and the increasing puzzlement and frustration of friends and family. This depression is both biological, from the toxins coursing through your body, and psychological brought on by the lack of predictability in your life. One day you wake up feeling fairly well, anxious to catch up on things you have let slide, but just as you get started your body gives out and you are forced back to bed. Another time, there are plans for a family event and when it arrives you are too exhausted to participate, or worse yet, you go to the event but give out in the middle, ruining it for your family and yourself. Your family and friends can’t understand this apparent giving up or giving in. Life has always been based on some degree of predictability, of being able to say with some degree of surety, I will do this or that in a particular time frame. Now there is only disappointment because nothing is predictable; despair, because nothing is sure. This pushes you further into depression. Now, there is a more or less subtle fear of the future pervading your waking hours.
The unpredictability frequently manifests itself in a show of indifference about consequences. It expresses a fear of hoping which is really another type of self protection frequently accompanied by hesitancy, loss of confidence, slowing down of motor skills and a shortened attention span. A physical sensitivity to cold may develop. Along with a still greater need for sleep, perhaps the inability to sleep can even come a sagging of features particularly the face. The result can be an emotional withdrawal from those around you and from the demands of life. It stems from the inability to accept what the disease is doing to you, and paradoxically may lead to fooling yourself into pretending that everything is normal. You refuse to talk about yourself, while in reality; you may feel that you are sitting on a time bomb not knowing what will happen next or when it will explode.
The disease causes an embarrassment about your condition to you, your family, and friends. For a long time, sometimes years, until the crippling effects begin to distort your joints, you don’t really look sick. So how do you explain the physical and emotional ups and down of what is happening to you? One day everything is apparently fine, the next is a struggle just to function.
Yet over time, there develops a constitutional stubbornness which is necessary to live in a world of healthy people. You push hard to cope and hold your place in the world. You compensate by improving your organizational skills; because you can’t rely on having energy or feeling well enough to take things as they come.
4. IMPROVEMENT
Just as these changes have gradually taken place in you as the disease progressed, so will they gradually improve as the source of your disease is treated and the progress of destruction is stopped. As you feel better, you will begin taking on more responsibility in small, unsteady steps; but making progress nonetheless. Your interest in things will return and you'll find that you are doing more, living life in a normal way without needing the compensations you had developed.
The bonus to this sometimes long and difficult battle is a greater sense of self --the good and the bad, a greater adaptability and a deeper compassion for others.
Those organizational and prioritizing skills you develop in order to cope remain and make you more efficient and focused individual able you to do far more with less time and energy expended. As survivors, we feel that we are now able to leap tall buildings in a single bound -- and we do.
Carol Lange, rheumatic patient - road backhome foundation
mikmo
Patients battling rheumatoid disease will undergo both physical and emotional changes, but for most of those who treat the disease with antibiotic therapy, the outcome will be very different from traditional outcomes. The following is a chronicling of the internal, emotional changes which take place within the course of a disease or even within a rheumatoid flare period or perhaps with any chronic disease or illness. Time is compressed and there may be a variation in the order of these manifestations. There may, of course, be other manifestations unique to the individual, since any disease is as individualized as the host or patient in which it resides.
The onset of disease or of a flare is similar, usually beginning with extreme fatigue. You find that you begin to sleep whenever possible, constantly needing more and more hours of down time. As the fatigue becomes ever more dominant in your life, an accompanying, but incipient loss of interest in most things which were previously important-your job, hobbies, home, spouse, and even children increases. Your focus turns inward to a self-protected type of self-centeredness to the selfishness of survival. There is no ability to concentrate on other things no focus. Frequently, there may even be an irrational lashing out, particularly at those who you love the most or at those with whom you work, in short, a short fuse syndrome.
Eventually, accompanying the fatigue are physical symptoms such as stiffness, swelling or pain, and a depression which deepens with the increasing physical ramifications and the increasing puzzlement and frustration of friends and family. This depression is both biological, from the toxins coursing through your body, and psychological brought on by the lack of predictability in your life. One day you wake up feeling fairly well, anxious to catch up on things you have let slide, but just as you get started your body gives out and you are forced back to bed. Another time, there are plans for a family event and when it arrives you are too exhausted to participate, or worse yet, you go to the event but give out in the middle, ruining it for your family and yourself. Your family and friends can’t understand this apparent giving up or giving in. Life has always been based on some degree of predictability, of being able to say with some degree of surety, I will do this or that in a particular time frame. Now there is only disappointment because nothing is predictable; despair, because nothing is sure. This pushes you further into depression. Now, there is a more or less subtle fear of the future pervading your waking hours.
The unpredictability frequently manifests itself in a show of indifference about consequences. It expresses a fear of hoping which is really another type of self protection frequently accompanied by hesitancy, loss of confidence, slowing down of motor skills and a shortened attention span. A physical sensitivity to cold may develop. Along with a still greater need for sleep, perhaps the inability to sleep can even come a sagging of features particularly the face. The result can be an emotional withdrawal from those around you and from the demands of life. It stems from the inability to accept what the disease is doing to you, and paradoxically may lead to fooling yourself into pretending that everything is normal. You refuse to talk about yourself, while in reality; you may feel that you are sitting on a time bomb not knowing what will happen next or when it will explode.
The disease causes an embarrassment about your condition to you, your family, and friends. For a long time, sometimes years, until the crippling effects begin to distort your joints, you don’t really look sick. So how do you explain the physical and emotional ups and down of what is happening to you? One day everything is apparently fine, the next is a struggle just to function.
Yet over time, there develops a constitutional stubbornness which is necessary to live in a world of healthy people. You push hard to cope and hold your place in the world. You compensate by improving your organizational skills; because you can’t rely on having energy or feeling well enough to take things as they come.
4. IMPROVEMENT
Just as these changes have gradually taken place in you as the disease progressed, so will they gradually improve as the source of your disease is treated and the progress of destruction is stopped. As you feel better, you will begin taking on more responsibility in small, unsteady steps; but making progress nonetheless. Your interest in things will return and you'll find that you are doing more, living life in a normal way without needing the compensations you had developed.
The bonus to this sometimes long and difficult battle is a greater sense of self --the good and the bad, a greater adaptability and a deeper compassion for others.
Those organizational and prioritizing skills you develop in order to cope remain and make you more efficient and focused individual able you to do far more with less time and energy expended. As survivors, we feel that we are now able to leap tall buildings in a single bound -- and we do.
Carol Lange, rheumatic patient - road backhome foundation
mikmo
3. THE EMOTIONS OF CHRONIC DISEASE
Patients battling rheumatoid disease will undergo both physical and emotional changes, but for most of those who treat the disease with antibiotic therapy, the outcome will be very different from traditional outcomes. The following is a chronicling of the internal, emotional changes which take place within the course of a disease or even within a rheumatoid flare period or perhaps with any chronic disease or illness. Time is compressed and there may be a variation in the order of these manifestations. There may, of course, be other manifestations unique to the individual, since any disease is as individualized as the host or patient in which it resides.
The onset of disease or of a flare is similar, usually beginning with extreme fatigue. You find that you begin to sleep whenever possible, constantly needing more and more hours of down time. As the fatigue becomes ever more dominant in your life, an accompanying, but incipient loss of interest in most things which were previously important-your job, hobbies, home, spouse, and even children increases. Your focus turns inward to a self-protected type of self-centeredness to the selfishness of survival. There is no ability to concentrate on other things no focus. Frequently, there may even be an irrational lashing out, particularly at those who you love the most or at those with whom you work, in short, a short fuse syndrome.
Eventually, accompanying the fatigue are physical symptoms such as stiffness, swelling or pain, and a depression which deepens with the increasing physical ramifications and the increasing puzzlement and frustration of friends and family. This depression is both biological, from the toxins coursing through your body, and psychological brought on by the lack of predictability in your life. One day you wake up feeling fairly well, anxious to catch up on things you have let slide, but just as you get started your body gives out and you are forced back to bed. Another time, there are plans for a family event and when it arrives you are too exhausted to participate, or worse yet, you go to the event but give out in the middle, ruining it for your family and yourself. Your family and friends can’t understand this apparent giving up or giving in. Life has always been based on some degree of predictability, of being able to say with some degree of surety, I will do this or that in a particular time frame. Now there is only disappointment because nothing is predictable; despair, because nothing is sure. This pushes you further into depression. Now, there is a more or less subtle fear of the future pervading your waking hours.
The unpredictability frequently manifests itself in a show of indifference about consequences. It expresses a fear of hoping which is really another type of self protection frequently accompanied by hesitancy, loss of confidence, slowing down of motor skills and a shortened attention span. A physical sensitivity to cold may develop. Along with a still greater need for sleep, perhaps the inability to sleep can even come a sagging of features particularly the face. The result can be an emotional withdrawal from those around you and from the demands of life. It stems from the inability to accept what the disease is doing to you, and paradoxically may lead to fooling yourself into pretending that everything is normal. You refuse to talk about yourself, while in reality; you may feel that you are sitting on a time bomb not knowing what will happen next or when it will explode.
The disease causes an embarrassment about your condition to you, your family, and friends. For a long time, sometimes years, until the crippling effects begin to distort your joints, you don’t really look sick. So how do you explain the physical and emotional ups and down of what is happening to you? One day everything is apparently fine, the next is a struggle just to function.
Yet over time, there develops a constitutional stubbornness which is necessary to live in a world of healthy people. You push hard to cope and hold your place in the world. You compensate by improving your organizational skills; because you can’t rely on having energy or feeling well enough to take things as they come.
4. IMPROVEMENT
Just as these changes have gradually taken place in you as the disease progressed, so will they gradually improve as the source of your disease is treated and the progress of destruction is stopped. As you feel better, you will begin taking on more responsibility in small, unsteady steps; but making progress nonetheless. Your interest in things will return and you'll find that you are doing more, living life in a normal way without needing the compensations you had developed.
The bonus to this sometimes long and difficult battle is a greater sense of self --the good and the bad, a greater adaptability and a deeper compassion for others.
Those organizational and prioritizing skills you develop in order to cope remain and make you more efficient and focused individual able you to do far more with less time and energy expended. As survivors, we feel that we are now able to leap tall buildings in a single bound -- and we do.
Carol Lange, rheumatic patient - road backhome foundation
mikmo
Patients battling rheumatoid disease will undergo both physical and emotional changes, but for most of those who treat the disease with antibiotic therapy, the outcome will be very different from traditional outcomes. The following is a chronicling of the internal, emotional changes which take place within the course of a disease or even within a rheumatoid flare period or perhaps with any chronic disease or illness. Time is compressed and there may be a variation in the order of these manifestations. There may, of course, be other manifestations unique to the individual, since any disease is as individualized as the host or patient in which it resides.
The onset of disease or of a flare is similar, usually beginning with extreme fatigue. You find that you begin to sleep whenever possible, constantly needing more and more hours of down time. As the fatigue becomes ever more dominant in your life, an accompanying, but incipient loss of interest in most things which were previously important-your job, hobbies, home, spouse, and even children increases. Your focus turns inward to a self-protected type of self-centeredness to the selfishness of survival. There is no ability to concentrate on other things no focus. Frequently, there may even be an irrational lashing out, particularly at those who you love the most or at those with whom you work, in short, a short fuse syndrome.
Eventually, accompanying the fatigue are physical symptoms such as stiffness, swelling or pain, and a depression which deepens with the increasing physical ramifications and the increasing puzzlement and frustration of friends and family. This depression is both biological, from the toxins coursing through your body, and psychological brought on by the lack of predictability in your life. One day you wake up feeling fairly well, anxious to catch up on things you have let slide, but just as you get started your body gives out and you are forced back to bed. Another time, there are plans for a family event and when it arrives you are too exhausted to participate, or worse yet, you go to the event but give out in the middle, ruining it for your family and yourself. Your family and friends can’t understand this apparent giving up or giving in. Life has always been based on some degree of predictability, of being able to say with some degree of surety, I will do this or that in a particular time frame. Now there is only disappointment because nothing is predictable; despair, because nothing is sure. This pushes you further into depression. Now, there is a more or less subtle fear of the future pervading your waking hours.
The unpredictability frequently manifests itself in a show of indifference about consequences. It expresses a fear of hoping which is really another type of self protection frequently accompanied by hesitancy, loss of confidence, slowing down of motor skills and a shortened attention span. A physical sensitivity to cold may develop. Along with a still greater need for sleep, perhaps the inability to sleep can even come a sagging of features particularly the face. The result can be an emotional withdrawal from those around you and from the demands of life. It stems from the inability to accept what the disease is doing to you, and paradoxically may lead to fooling yourself into pretending that everything is normal. You refuse to talk about yourself, while in reality; you may feel that you are sitting on a time bomb not knowing what will happen next or when it will explode.
The disease causes an embarrassment about your condition to you, your family, and friends. For a long time, sometimes years, until the crippling effects begin to distort your joints, you don’t really look sick. So how do you explain the physical and emotional ups and down of what is happening to you? One day everything is apparently fine, the next is a struggle just to function.
Yet over time, there develops a constitutional stubbornness which is necessary to live in a world of healthy people. You push hard to cope and hold your place in the world. You compensate by improving your organizational skills; because you can’t rely on having energy or feeling well enough to take things as they come.
4. IMPROVEMENT
Just as these changes have gradually taken place in you as the disease progressed, so will they gradually improve as the source of your disease is treated and the progress of destruction is stopped. As you feel better, you will begin taking on more responsibility in small, unsteady steps; but making progress nonetheless. Your interest in things will return and you'll find that you are doing more, living life in a normal way without needing the compensations you had developed.
The bonus to this sometimes long and difficult battle is a greater sense of self --the good and the bad, a greater adaptability and a deeper compassion for others.
Those organizational and prioritizing skills you develop in order to cope remain and make you more efficient and focused individual able you to do far more with less time and energy expended. As survivors, we feel that we are now able to leap tall buildings in a single bound -- and we do.
Carol Lange, rheumatic patient - road backhome foundation
mikmo
3. THE EMOTIONS OF CHRONIC DISEASE
Patients battling rheumatoid disease will undergo both physical and emotional changes, but for most of those who treat the disease with antibiotic therapy, the outcome will be very different from traditional outcomes. The following is a chronicling of the internal, emotional changes which take place within the course of a disease or even within a rheumatoid flare period or perhaps with any chronic disease or illness. Time is compressed and there may be a variation in the order of these manifestations. There may, of course, be other manifestations unique to the individual, since any disease is as individualized as the host or patient in which it resides.
The onset of disease or of a flare is similar, usually beginning with extreme fatigue. You find that you begin to sleep whenever possible, constantly needing more and more hours of down time. As the fatigue becomes ever more dominant in your life, an accompanying, but incipient loss of interest in most things which were previously important-your job, hobbies, home, spouse, and even children increases. Your focus turns inward to a self-protected type of self-centeredness to the selfishness of survival. There is no ability to concentrate on other things no focus. Frequently, there may even be an irrational lashing out, particularly at those who you love the most or at those with whom you work, in short, a short fuse syndrome.
Eventually, accompanying the fatigue are physical symptoms such as stiffness, swelling or pain, and a depression which deepens with the increasing physical ramifications and the increasing puzzlement and frustration of friends and family. This depression is both biological, from the toxins coursing through your body, and psychological brought on by the lack of predictability in your life. One day you wake up feeling fairly well, anxious to catch up on things you have let slide, but just as you get started your body gives out and you are forced back to bed. Another time, there are plans for a family event and when it arrives you are too exhausted to participate, or worse yet, you go to the event but give out in the middle, ruining it for your family and yourself. Your family and friends can’t understand this apparent giving up or giving in. Life has always been based on some degree of predictability, of being able to say with some degree of surety, I will do this or that in a particular time frame. Now there is only disappointment because nothing is predictable; despair, because nothing is sure. This pushes you further into depression. Now, there is a more or less subtle fear of the future pervading your waking hours.
The unpredictability frequently manifests itself in a show of indifference about consequences. It expresses a fear of hoping which is really another type of self protection frequently accompanied by hesitancy, loss of confidence, slowing down of motor skills and a shortened attention span. A physical sensitivity to cold may develop. Along with a still greater need for sleep, perhaps the inability to sleep can even come a sagging of features particularly the face. The result can be an emotional withdrawal from those around you and from the demands of life. It stems from the inability to accept what the disease is doing to you, and paradoxically may lead to fooling yourself into pretending that everything is normal. You refuse to talk about yourself, while in reality; you may feel that you are sitting on a time bomb not knowing what will happen next or when it will explode.
The disease causes an embarrassment about your condition to you, your family, and friends. For a long time, sometimes years, until the crippling effects begin to distort your joints, you don’t really look sick. So how do you explain the physical and emotional ups and down of what is happening to you? One day everything is apparently fine, the next is a struggle just to function.
Yet over time, there develops a constitutional stubbornness which is necessary to live in a world of healthy people. You push hard to cope and hold your place in the world. You compensate by improving your organizational skills; because you can’t rely on having energy or feeling well enough to take things as they come.
4. IMPROVEMENT
Just as these changes have gradually taken place in you as the disease progressed, so will they gradually improve as the source of your disease is treated and the progress of destruction is stopped. As you feel better, you will begin taking on more responsibility in small, unsteady steps; but making progress nonetheless. Your interest in things will return and you'll find that you are doing more, living life in a normal way without needing the compensations you had developed.
The bonus to this sometimes long and difficult battle is a greater sense of self --the good and the bad, a greater adaptability and a deeper compassion for others.
Those organizational and prioritizing skills you develop in order to cope remain and make you more efficient and focused individual able you to do far more with less time and energy expended. As survivors, we feel that we are now able to leap tall buildings in a single bound -- and we do.
Carol Lange, rheumatic patient - road backhome foundation
mikmo
Patients battling rheumatoid disease will undergo both physical and emotional changes, but for most of those who treat the disease with antibiotic therapy, the outcome will be very different from traditional outcomes. The following is a chronicling of the internal, emotional changes which take place within the course of a disease or even within a rheumatoid flare period or perhaps with any chronic disease or illness. Time is compressed and there may be a variation in the order of these manifestations. There may, of course, be other manifestations unique to the individual, since any disease is as individualized as the host or patient in which it resides.
The onset of disease or of a flare is similar, usually beginning with extreme fatigue. You find that you begin to sleep whenever possible, constantly needing more and more hours of down time. As the fatigue becomes ever more dominant in your life, an accompanying, but incipient loss of interest in most things which were previously important-your job, hobbies, home, spouse, and even children increases. Your focus turns inward to a self-protected type of self-centeredness to the selfishness of survival. There is no ability to concentrate on other things no focus. Frequently, there may even be an irrational lashing out, particularly at those who you love the most or at those with whom you work, in short, a short fuse syndrome.
Eventually, accompanying the fatigue are physical symptoms such as stiffness, swelling or pain, and a depression which deepens with the increasing physical ramifications and the increasing puzzlement and frustration of friends and family. This depression is both biological, from the toxins coursing through your body, and psychological brought on by the lack of predictability in your life. One day you wake up feeling fairly well, anxious to catch up on things you have let slide, but just as you get started your body gives out and you are forced back to bed. Another time, there are plans for a family event and when it arrives you are too exhausted to participate, or worse yet, you go to the event but give out in the middle, ruining it for your family and yourself. Your family and friends can’t understand this apparent giving up or giving in. Life has always been based on some degree of predictability, of being able to say with some degree of surety, I will do this or that in a particular time frame. Now there is only disappointment because nothing is predictable; despair, because nothing is sure. This pushes you further into depression. Now, there is a more or less subtle fear of the future pervading your waking hours.
The unpredictability frequently manifests itself in a show of indifference about consequences. It expresses a fear of hoping which is really another type of self protection frequently accompanied by hesitancy, loss of confidence, slowing down of motor skills and a shortened attention span. A physical sensitivity to cold may develop. Along with a still greater need for sleep, perhaps the inability to sleep can even come a sagging of features particularly the face. The result can be an emotional withdrawal from those around you and from the demands of life. It stems from the inability to accept what the disease is doing to you, and paradoxically may lead to fooling yourself into pretending that everything is normal. You refuse to talk about yourself, while in reality; you may feel that you are sitting on a time bomb not knowing what will happen next or when it will explode.
The disease causes an embarrassment about your condition to you, your family, and friends. For a long time, sometimes years, until the crippling effects begin to distort your joints, you don’t really look sick. So how do you explain the physical and emotional ups and down of what is happening to you? One day everything is apparently fine, the next is a struggle just to function.
Yet over time, there develops a constitutional stubbornness which is necessary to live in a world of healthy people. You push hard to cope and hold your place in the world. You compensate by improving your organizational skills; because you can’t rely on having energy or feeling well enough to take things as they come.
4. IMPROVEMENT
Just as these changes have gradually taken place in you as the disease progressed, so will they gradually improve as the source of your disease is treated and the progress of destruction is stopped. As you feel better, you will begin taking on more responsibility in small, unsteady steps; but making progress nonetheless. Your interest in things will return and you'll find that you are doing more, living life in a normal way without needing the compensations you had developed.
The bonus to this sometimes long and difficult battle is a greater sense of self --the good and the bad, a greater adaptability and a deeper compassion for others.
Those organizational and prioritizing skills you develop in order to cope remain and make you more efficient and focused individual able you to do far more with less time and energy expended. As survivors, we feel that we are now able to leap tall buildings in a single bound -- and we do.
Carol Lange, rheumatic patient - road backhome foundation
mikmo
Oh here's one I sent my family when i had to stop tx - it's for RA - pretty long but really right on...
Understanding the Painful RA Flare
A patients perspective
An RA patient of many years duration noticed her flares followed a sequence which she came to recognize. This helped her realize what was happening and to work her way through the flare. The Anatomy of a Flare is her description of this sequence. Not everyone will follow this same pattern, but with education and understanding you may also find a pattern to your flares.
The second part of this article should help you understand what happens inside your body during a flare and part three describes the emotional side.
1. THE ANATOMY OF A FLARE
In the beginning, there is usually no conscious awareness that something is wrong; things are just not right. Exercise becomes an effort and muscles tend to become tight, even sore. However, the muscles still respond to exercise and the next day, you wake up mobile and feeling fairly well. The feeling of well-being, however, does not last.
While you are not really aware of a change, feeling good is replaced by a nonspecific feeling of non well-being. Nothing may be obviously wrong but you become lethargic, tired, and have difficulty sleeping. This stage continues for a few days, varying in degree, but moving towards feeling awful.
Sometimes, there is an occasional pain-- intermittent, usually twinges, stabbing but quickly over. By the time you are consciously aware of not feeling good, there is an incessant, aching pain. Besides fatigue, pain, a feeling of malaise and swollen joints, a temperature check will indicate a low grade temperature or the opposite -- chills.
It is extremely difficult to recognize the onset of a flare unless it is fierce and dramatic as sometimes happens. Rather, you look back as you begin to come out of it and feel you should have been able to spot what was happening. It is insidious, depressing.
Depression is a very real part of the anatomy of a flare. It begins with the feeling of non well-being. First there is simply a lessening of enthusiasm for things normally enjoyed. As the pain and swelling increase, mobility decreases and common daily routines become a test of endurance, determination and consistent defeat. Now depression becomes more easily recognized for what it is. The solution to depression is what is hardest to continue as though nothing were wrong.
A whole new realm of pain ensues: manifestations of acute ache, burning pain, stabbing pain and skewering pain at the same time in different joints and muscles. You have reached the peak of the flare.
Sleep is difficult or impossible, but necessary for the healing. You vegetate, moving only when necessary or, in contradiction, roaming without purpose, perhaps in an unconscious effort to escape the pain. There may be a loss of weight, loss of body to your hair, a sagging of your facial features, an excess buildup of tartar on your teeth and a blurring of vision. Your whole system is rebelling and under attack. Concentration is difficult.
Finally, when you have lost all track of what is normal, the pain is not quite so intense, a joint may begin to move more easily and swelling decreases. There are still stabbing pains, but they have lost their heat and the ache occasionally quiets. Movement returns slowly and with great effort, but it returns. Now you must exercise to encourage the mobility, to strengthen the weakened muscles.
As the flare subsides, there is almost a compulsive need to do things. Suddenly you become aware that you are sleeping at night. The sleep may be still broken, but now you can go back to sleep rather quickly. At last the flare has passed.
2. THE INFLAMMATORY PROCESS
Rheumatoid or rheumatism refers to a category of diseases causing inflammation, stiffness, and pain in joints and supporting structures. Arthritis is the involvement of the joints and immediate surrounding structures by disease characterized by inflammation, pain, and swelling, often resulting in crippling deformities.
One of the most easily recognized signs of rheumatoid arthritis are joint inflammation. The word inflammation means to set on fire and describes the reaction of tissue to injury. Reddening, swelling, pain, and heat are common manifestations of inflammation. Reddening results from the increased blood flow to the area. White blood cells (lymphocytes) are sent by the immune system to destroy the foreign invaders and to break down and remove dead and damaged tissue. The synovial membrane (joint lining) increases its production of fluid, causing swelling. Pain is the body’s warning to protect the injured area and draws attention to the need to do something about it. The heat comes from increased metabolism in the area.
There are two phases of joint inflammation: the exudative, and the chronic. The exudative phase involves the lining layer and synovial effusion. Cartilage can become damaged during this phase. In the second phase, the inflammation moves into the sublining layer. In this stage, infiltrates that are present are said [by some] to be resulting from a cellular immune response to an antigen. A commitment to future research in RA will be a continued attempt to identify a possible infectious agent as the inciting antigen in this disease. It is in the second phase that the permanent tissue destruction occurs.
Extensive research has allowed scientists to better understand the enzymes that are released during inflammation. These enzymes, normally stored in little packages or sacs inside the white blood cells, are called lysosomes. Normally, release of these enzymes would help cells to digest invading bacteria, viruses or other foreign material during the body's fight against the invading agents. In rheumatic diseases, however, these enzymes often spill out of the white blood cells into surrounding tissues where they can digest cartilage, bone, protein, ligaments, muscles or other tissues. The enzyme collagenase is particularly damaging, because it breaks down collagen, a vital part of the normal joint. Researchers have shown that all of these chemical substances are present in inflamed joints. Rheumatoid arthritis can be variable in its course. An increase in disease activity, called a flare, can be characterized by a return or an increase in inflammation. A flare can last for days, weeks, or months.
Understanding the Painful RA Flare
A patients perspective
An RA patient of many years duration noticed her flares followed a sequence which she came to recognize. This helped her realize what was happening and to work her way through the flare. The Anatomy of a Flare is her description of this sequence. Not everyone will follow this same pattern, but with education and understanding you may also find a pattern to your flares.
The second part of this article should help you understand what happens inside your body during a flare and part three describes the emotional side.
1. THE ANATOMY OF A FLARE
In the beginning, there is usually no conscious awareness that something is wrong; things are just not right. Exercise becomes an effort and muscles tend to become tight, even sore. However, the muscles still respond to exercise and the next day, you wake up mobile and feeling fairly well. The feeling of well-being, however, does not last.
While you are not really aware of a change, feeling good is replaced by a nonspecific feeling of non well-being. Nothing may be obviously wrong but you become lethargic, tired, and have difficulty sleeping. This stage continues for a few days, varying in degree, but moving towards feeling awful.
Sometimes, there is an occasional pain-- intermittent, usually twinges, stabbing but quickly over. By the time you are consciously aware of not feeling good, there is an incessant, aching pain. Besides fatigue, pain, a feeling of malaise and swollen joints, a temperature check will indicate a low grade temperature or the opposite -- chills.
It is extremely difficult to recognize the onset of a flare unless it is fierce and dramatic as sometimes happens. Rather, you look back as you begin to come out of it and feel you should have been able to spot what was happening. It is insidious, depressing.
Depression is a very real part of the anatomy of a flare. It begins with the feeling of non well-being. First there is simply a lessening of enthusiasm for things normally enjoyed. As the pain and swelling increase, mobility decreases and common daily routines become a test of endurance, determination and consistent defeat. Now depression becomes more easily recognized for what it is. The solution to depression is what is hardest to continue as though nothing were wrong.
A whole new realm of pain ensues: manifestations of acute ache, burning pain, stabbing pain and skewering pain at the same time in different joints and muscles. You have reached the peak of the flare.
Sleep is difficult or impossible, but necessary for the healing. You vegetate, moving only when necessary or, in contradiction, roaming without purpose, perhaps in an unconscious effort to escape the pain. There may be a loss of weight, loss of body to your hair, a sagging of your facial features, an excess buildup of tartar on your teeth and a blurring of vision. Your whole system is rebelling and under attack. Concentration is difficult.
Finally, when you have lost all track of what is normal, the pain is not quite so intense, a joint may begin to move more easily and swelling decreases. There are still stabbing pains, but they have lost their heat and the ache occasionally quiets. Movement returns slowly and with great effort, but it returns. Now you must exercise to encourage the mobility, to strengthen the weakened muscles.
As the flare subsides, there is almost a compulsive need to do things. Suddenly you become aware that you are sleeping at night. The sleep may be still broken, but now you can go back to sleep rather quickly. At last the flare has passed.
2. THE INFLAMMATORY PROCESS
Rheumatoid or rheumatism refers to a category of diseases causing inflammation, stiffness, and pain in joints and supporting structures. Arthritis is the involvement of the joints and immediate surrounding structures by disease characterized by inflammation, pain, and swelling, often resulting in crippling deformities.
One of the most easily recognized signs of rheumatoid arthritis are joint inflammation. The word inflammation means to set on fire and describes the reaction of tissue to injury. Reddening, swelling, pain, and heat are common manifestations of inflammation. Reddening results from the increased blood flow to the area. White blood cells (lymphocytes) are sent by the immune system to destroy the foreign invaders and to break down and remove dead and damaged tissue. The synovial membrane (joint lining) increases its production of fluid, causing swelling. Pain is the body’s warning to protect the injured area and draws attention to the need to do something about it. The heat comes from increased metabolism in the area.
There are two phases of joint inflammation: the exudative, and the chronic. The exudative phase involves the lining layer and synovial effusion. Cartilage can become damaged during this phase. In the second phase, the inflammation moves into the sublining layer. In this stage, infiltrates that are present are said [by some] to be resulting from a cellular immune response to an antigen. A commitment to future research in RA will be a continued attempt to identify a possible infectious agent as the inciting antigen in this disease. It is in the second phase that the permanent tissue destruction occurs.
Extensive research has allowed scientists to better understand the enzymes that are released during inflammation. These enzymes, normally stored in little packages or sacs inside the white blood cells, are called lysosomes. Normally, release of these enzymes would help cells to digest invading bacteria, viruses or other foreign material during the body's fight against the invading agents. In rheumatic diseases, however, these enzymes often spill out of the white blood cells into surrounding tissues where they can digest cartilage, bone, protein, ligaments, muscles or other tissues. The enzyme collagenase is particularly damaging, because it breaks down collagen, a vital part of the normal joint. Researchers have shown that all of these chemical substances are present in inflamed joints. Rheumatoid arthritis can be variable in its course. An increase in disease activity, called a flare, can be characterized by a return or an increase in inflammation. A flare can last for days, weeks, or months.
Wow- this perfect for my Ra - fibro as well....man I just hate it because i'm tiny everyone always says how great i look - even after i have just thrown up or could barely hobble from the car to the golf cart....I usually say "yea thanks - and under my breath say - wish I felt that way too" But the other day i just laid into a friend of mine at the ranch - she says it everyday because i smile whern i drive by in my golf cart...she always says - oh it's so good to see your feeling good - you look great.
I just pulled her aside (I was really feeling horrible -could hardly hold my head up) and asked her if she could not assume that anymore that i would prefer that she just wave and say hi that i was so tiered of hearing that from everyone and how hard it was just to muster up the smile and then i stormed off...I felt aweful later and appologized to her the next day....but i think she finally understood. Pain so unexplainable to those who do not experience it.
Thanks for that -
I just pulled her aside (I was really feeling horrible -could hardly hold my head up) and asked her if she could not assume that anymore that i would prefer that she just wave and say hi that i was so tiered of hearing that from everyone and how hard it was just to muster up the smile and then i stormed off...I felt aweful later and appologized to her the next day....but i think she finally understood. Pain so unexplainable to those who do not experience it.
Thanks for that -
Saved in my documents since I 1st got it....pretty good one. My sis used it too, has cancer and it applied well for her also.
Good luck with however it's needed MrsOkert
LL
Good luck with however it's needed MrsOkert
LL
thank you for sharing this- i needed to hear it- just as much as some of my family and friends do. what a great reminder
Albany
Albany
Hey there Deb - how are you?????
Have you been to any of these other sites???? there are some really weird people on here. It's like watching a train wreck - you know it's coming but you just can't stop watching. ROFL
It's a good letter. Probably good for all the recent newbies to have it also.
I'm okay. I thought the sarcoidosis might go into remission, but so far no such luck. Other than that same old, same old. Not scheduled for another biopsy till 2010.
How are you, You SVR person? Have you got your energy back? Talk to you tomorrow.
Have you been to any of these other sites???? there are some really weird people on here. It's like watching a train wreck - you know it's coming but you just can't stop watching. ROFL
It's a good letter. Probably good for all the recent newbies to have it also.
I'm okay. I thought the sarcoidosis might go into remission, but so far no such luck. Other than that same old, same old. Not scheduled for another biopsy till 2010.
How are you, You SVR person? Have you got your energy back? Talk to you tomorrow.
MRS. OOOOOOOOOOOOOOOOOOOOOOOOOO
HELLO VALORIE HOW ARE YOU DOING?
WHAT A GREAT SURPRISE TO SEE YOU!!!!!!!!!!
debby
HELLO VALORIE HOW ARE YOU DOING?
WHAT A GREAT SURPRISE TO SEE YOU!!!!!!!!!!
debby
Thank you! This is much more informative than the one I was thinking of and will work perfectly!
This time I'll print several copies so I don't lose it.
This time I'll print several copies so I don't lose it.
Found by a special person and forwarded to me
------
Letter to People Without Hepatitis C
Having Hepatitis means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about HCV and its effects, and of those that think they know, many are actually mis-informed.
In the spirit of informing those who wish to understand ... These are the things that I would like you to understand about me before you judge me...
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about life and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing.
Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what Hepatitis does to you. Please understand that HCV or HBV is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen.
Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Please understand that "getting out and doing things" does not make me feel better. Telling me that I need a treadmill, or that I just need to loose (or gain)weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously HCV deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity.
Also, Hepatitis may cause condary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression. Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). Hepatitis does not forgive. In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the physical therapist. I need you on a different level too ... you're my link to the outside world... if you don't come to visit me, then I might not get to see you... and, as much as it's possible, I need you to understand me.
Authored by Bek Oberin
Is this it?
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about life and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing. Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what Hepatitis does to you.
Please understand that HCV or HBV is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Please understand that "getting out and doing things" does not make me feel better. Telling me that I need a treadmill, or that I just need to loose (or gain)weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the excercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously HCV deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity.
Also, Hepatitis may cause condary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression. Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). Hepatitis does not forgive.
If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with hepaititis then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Hepatitis if something worked we would KNOW. If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.
In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the physical therapist. I need you on a different level too ... you're my link to the outsideworld... if you don't come to visit me, then I might not get to see you... and, as much as it's possible, I need you to understand me.
Authored by Bek Oberin
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about life and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing. Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what Hepatitis does to you.
Please understand that HCV or HBV is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Please understand that "getting out and doing things" does not make me feel better. Telling me that I need a treadmill, or that I just need to loose (or gain)weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the excercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously HCV deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity.
Also, Hepatitis may cause condary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression. Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). Hepatitis does not forgive.
If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with hepaititis then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Hepatitis if something worked we would KNOW. If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.
In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the physical therapist. I need you on a different level too ... you're my link to the outsideworld... if you don't come to visit me, then I might not get to see you... and, as much as it's possible, I need you to understand me.
Authored by Bek Oberin
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Herpes sores blister, then burst, scab and heal.
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