TMJ & CHRONIC PAIN
I am no expert on CP; however I have lived in CP for 37 years -- probably older than most people reading this. I been on just about every pain medication (including the patches, TENS unit); been through too many psychiatrists to count (and a pretty incredible experience at the hands of one of them who put me in a Behavior Modification program)--also the anti-depressants (pain and depression go hand in hand); tried all manner of osteopaths, chiropractors, massage therapists, neurologists, neurosurgeons, Hypnosis, Biofeedback, Trigger Point Injections, physical therapy, just regular M.D.s; oral surgeons (have had 5 surgeries on my jaws to date, one of which left me disfigured; numerous dentists (trying to save what teeth I have left. Because of the jaw surgeries (TMJ) I now have no saliva glands and one of the outcomes of that is "dry mouth" which can lead to fatal pneumonia (yes I spent 6 weeks == 30 days in ICU in a hospital for that & survived). In July of 2005 I just got fed up and said I was taking no more drugs -- this led me to have a seizure and another hospital stay -- it also removed a lot of my memory bank and still have to write everything down if I'm to hopefully remember it. When I awoke from the seizure the pain that had been gnawing the left side of my head constantly for 35 years was diminished to GONE (no one understands that, least of all me). I continued to recover and divest my body of all drugs. By Christmas of 2005 I was out hiking with my family when I fell 20 feet off a cliff. I broke all my ribs, back, numerous fractures, contusions and wound up back on a ventilator. When I was removed from the vent, I began to come around and saw that they were pushing in drugs so much so that I said if you were to press a pore on my skin it would ooze morphine! Now I've managed to get through the past year with no incidents (also might mention that I lost all things material, e.g., car, etc.) and now live in one room with a bathroom in a small apt. in a small town. I won't begin to tell you what all has come and mostly gone through my life during this time. I did wind up back on the pain meds after the fall. I sank more deeply than ever into Depression and even called my law enforcement son to ask how to go about getting a gun; but then thought better of it as I figured I'd probably make a mess and wind up a vegetable so that was out). I have been on a disability for 20 years, raised 3 sons, worked in the labor force, did lots of Volunteer work (e.g., EMT, Fire Rescue, worked in a soup kitchen for the homeless, taught adult literacy, founded an organization for people in CP and worked with that for about 5 years before moving to another state. I can tell you that where you live (state/country) makes a hell of a lot of difference in the kind of treatment you receive for CP. Shortly after moving to CA, I found that I was eligible for medical aid for prescriptions (w/o which I don't think I'd still be here). Anyway I began to see a Hospice doctor, who also had a private practice and helped those of us who were so stigmatized by the medications we have to take that we get put on ER lists as being "drug seekers". I've lived it all. I tried to take up alcohol at one point back in the '70s but couldn't as it made me so nauseated I couldn't stand it. Once I was put on the meds out here, I was able to have some semblance of life, albeit I paid a high price for it. Most people do not understand the kind of "scoping out" we have to take. It's not bad enough to be in l0/l0 pain (and I had that numbering system!!!) but you've got to start over with each new doctor and maybe they believe you and maybe they don't. My biggest obstacle was that no one knew (initially) what was my problem with the pain. It wasn't until l982 that I finally was diagnosed with TMJ and my joints had deteriorated to the point that they had to be replaced==with joints that later proved to be bad. Which meant another surgery to take that out and put something else in; but Medicare doesn't like to pay for this type of "dental surgery" (one of these days somebody out there is going to deduce that the mouth is part of the body as much as the heart!). I'm writing this without knowing anything about you or what is going on in your life. Needless to say I finally got to the point that if I was going to be saved, I'd have to be the one to do it. So lots of research on CP. More good things turning up all the time; but none of that matters when you are in desperate pain (I made so many trips to the ER that I've lost count). I've said that people in CP are like the lepers of ancient civilizations -- the "untouchables". Now the morphine, oxycontin, demerol and others of the opiates have something cut into them that is supposed to take away any of the euphoric side affects -- I know this is laughable when you are in a clear state of mind. You NEED to be in a Pain Management group. When I write that I feel as though I'm just throwing a dart with a blindfold on. So uncertain are the people out there in this field. My youngest son was in an accident and had to have his back fused, then the rods broke, he's not got heart problems -- it just goes on and on. CP is an epidemic in this country. And I heard the other day that Drug Overdoses account for the Number One reason for death in this country - followed by what had been number one -- Vehicular Accidents. I've taken my meds, turned around, then wondered if I'd taken them, and turn around and take them again. I don't know why I'm still here. Except that I keep jumping into the fray over this issue. Obviously I could write for the next month and not get what I wanted to get out -- OUT. And all I've been through at the hands of the "experts" has shaped me and honed me into a depressed recluse. I've found an artistic side to me that I was very enchanted with initially -- Now, it's like so-what. After the pneumonia the dr. says I won't ever get back what I had (in terms of energy level). That was a big jolt that I kept trying to avoid hearing because I want to go to Africa and help with the healing, feeding, comfort of those people, especially the children. Somehow I've got to get myself out and into doing something "other-oriented". I've been approached about writing a book but it seems there are enough self-help books out there. It comes down to you and the PAIN. As I am basically an intuitive feeler when it comes to making decisions that is what guides me. I'm not a religious person -- although until a couple of years ago I was deeply spiritual, but after the seizure, that belief just fell away, much as a blanket you have wrapped around yourself to protect you from the cold. It was not a big MAD at some God -- the belief just left me. So. What we have here is a 63 year old woman (still looking younger) whose life has been lived (for 37 yrs. anyway) in "desperate" pain and nobody was listening. My 2nd husband at that time, started divorce proceedings so that I could no longer have the use of his medical insurance. I just went into the dr's office one day for medications/injections and was told that I was no longer covered. (I don't know why that didn't cause a seizure!! lol) I left the job market long ago and have filled my life with family, love and helping opportunities as were possible; but now it's like being dragged out of your grave into a new world you don't know or understand and nobody being able to understand what has happened to you. I always kept thinking I'd get over it, but then the years became a blurr and all I did was medicate the pain and try to keep up as best I could with family activities. I moved out into the country...saw no one, spoke to no one; had no support for all practical purposes. I continually wish I had a wand that I could wave and make everything ok; but that hasn't happened == yet, anyway.
I want to encourage you NOT to go to the alcohol as that only furthers your descent -- this is coming from someone who did try that so I know how bad the pain is and how I'd have done anything, ANYTHING to get out from its clutches. I get rilled when I see that another office where marijuana is dispensed to those whose dr. has w ritten them a prescription. It seems it is a battle between the Feds and the State laws on such. And who (as always) gets caught in the wheels of the ignorant person trying to show how they are "going to stamp out drugs in American society", those people who have had no other way to help fend off the debilitating pain. It is my belief that a person needs a multi-disciplinary approach to the task. If you have someone who can help think with and for you in finding such a group, so much the better. I had no one. Maybe that is why I'm as calloused when it comes to standing my ground on this and other issues. This I've lived -- so no one can speak to me when they've not walked in my skin. It is possible to get set up on the right dosage of pain killers, anxiety/lanti-depressant drugs, and whatever else may be appropriate to you specifically. If you don't already, learn to think with your gut and take someone with you when you are talking with the doctor. Someone who can take notes, and later give you their impression of what the doctor was all about. There are groups in California for people in CP. There are National Foundations/Organizations to help you with more info than you may currently have; and there is the issue of a bill in the House that is supposed to help CP patients regain some semblance of being treated like a human. Just type into Google or some search engine and ask for Chronic Pain Organizations. If you go right to a National group, they can help you with one that is located nearer you. I know this is a massive and disturbing, crushing not only flesh and bones, but Spirit too. I don't know if they'll let me put all this in one post ! When I get into writing I lose myself (which is a very good sign and once you get your pain properly medicated, then you will find something to engage your mind...this is as necessary for your restoration as any of the other medical approaches. I'm the Go=TO here at Tribe on Chronic Pain and How to Deal With It. I'd like to think that all my experiences, raking across the coals and being turned away from hospital ERs or even dr.s' offices (because I was just looking for drugs). Currently I have the good fortune to have a mobile doctor who comes to my apt. I found him and his group when all my then dr. associations went to shreds. I have great empathy for us all. There will be times when you feel stuck and are getting nowhere; then there will be times when you will just stand back in awe that your life just got bumped in a kind of earthquake==and you get morphed into a whole new being. As much as I can do and am able to do, I will do to the last breath of me, in what I see now is a Cause and the ones it harbors are broken, bereft of human companionship, the spittle of gossip, the joke at the pharmacy. Somehow I want all that I went through to count for something, somehow. I want people who are disabled to be granted a SS Disability -- based on that alone. Not as some have had to take it on a mental status.) I want people in CP to be treated like everyone else who has a chronic disease, e.g., Heart Problems, Diabetics, Cancer...and a whole host of other ailments. It's time for CHRONIC PAIN to be allowed to come out of the closet and receive the needed and appropriate treatment; be assisted in restoring or maintaining their lives.
So much information is coming out now on TMJ. I read that a study of cadavers showed that women had multiple X the number of nerve receptors in their cheeks as opposed to the males. This was a huge breakthrough for me as I had begun to believe that I was truly crazy!
And the brain is only just now begun to be mapped. I said that reading that research data was like say, having Polio strike you, crippling you for life, and the next day you hear that they have found a vaccine for it. It won't heal what you have but it will stop future generations from the suffering that you and so many others went through.
Let me know if there's anything I can do for you....or any of you.
You are already in my Heart because you are one whose life is akin to mine, and I expect so too, others. I could go on and on but should also stop! Take care of you, be good to you, be sure you eat as well as possible. I saw a Nutritionist and Herbalist among so many and realize how important it is NOT to forget the rest of your body.
You have my genuine empathy and loving sympathy .......You Can Make It Through!! You are in a fight for your life. YOUR LIFE!!!!!!!
patricia church
Chronic Pain Advocate
reply to this post Hi Dave,
I am no expert on CP; however I have lived in CP for 37 years -- probably older than most people reading this. I been on just about every pain medication (including the patches, TENS unit); been through too many psychiatrists to count (and a pretty incredible experience at the hands of one of them who put me in a Behavior Modification program)--also the anti-depressants (pain and depression go hand in hand); tried all manner of osteopaths, chiropractors, massage therapists, neurologists, neurosurgeons, Hypnosis, Biofeedback, Trigger Point Injections, physical therapy, just regular M.D.s; oral surgeons (have had 5 surgeries on my jaws to date, one of which left me disfigured; numerous dentists (trying to save what teeth I have left. Because of the jaw surgeries (TMJ) I now have no saliva glands and one of the outcomes of that is "dry mouth" which can lead to fatal pneumonia (yes I spent 6 weeks == 30 days in ICU in a hospital for that & survived). In July of 2005 I just got fed up and said I was taking no more drugs -- this led me to have a seizure and another hospital stay -- it also removed a lot of my memory bank and still have to write everything down if I'm to hopefully remember it. When I awoke from the seizure the pain that had been gnawing the left side of my head constantly for 35 years was diminished to GONE (no one understands that, least of all me). I continued to recover and divest my body of all drugs. By Christmas of 2005 I was out hiking with my family when I fell 20 feet off a cliff. I broke all my ribs, back, numerous fractures, contusions and wound up back on a ventilator. When I was removed from the vent, I began to come around and saw that they were pushing in drugs so much so that I said if you were to press a pore on my skin it would ooze morphine! Now I've managed to get through the past year with no incidents (also might mention that I lost all things material, e.g., car, etc.) and now live in one room with a bathroom in a small apt. in a small town. I won't begin to tell you what all has come and mostly gone through my life during this time. I did wind up back on the pain meds after the fall. I sank more deeply than ever into Depression and even called my law enforcement son to ask how to go about getting a gun; but then thought better of it as I figured I'd probably make a mess and wind up a vegetable so that was out). I have been on a disability for 20 years, raised 3 sons, worked in the labor force, did lots of Volunteer work (e.g., EMT, Fire Rescue, worked in a soup kitchen for the homeless, taught adult literacy, founded an organization for people in CP and worked with that for about 5 years before moving to another state. I can tell you that where you live (state/country) makes a hell of a lot of difference in the kind of treatment you receive for CP. Shortly after moving to CA, I found that I was eligible for medical aid for prescriptions (w/o which I don't think I'd still be here). Anyway I began to see a Hospice doctor, who also had a private practice and helped those of us who were so stigmatized by the medications we have to take that we get put on ER lists as being "drug seekers". I've lived it all. I tried to take up alcohol at one point back in the '70s but couldn't as it made me so nauseated I couldn't stand it. Once I was put on the meds out here, I was able to have some semblance of life, albeit I paid a high price for it. Most people do not understand the kind of "scoping out" we have to take. It's not bad enough to be in l0/l0 pain (and I had that numbering system!!!) but you've got to start over with each new doctor and maybe they believe you and maybe they don't. My biggest obstacle was that no one knew (initially) what was my problem with the pain. It wasn't until l982 that I finally was diagnosed with TMJ and my joints had deteriorated to the point that they had to be replaced==with joints that later proved to be bad. Which meant another surgery to take that out and put something else in; but Medicare doesn't like to pay for this type of "dental surgery" (one of these days somebody out there is going to deduce that the mouth is part of the body as much as the heart!). I'm writing this without knowing anything about you or what is going on in your life. Needless to say I finally got to the point that if I was going to be saved, I'd have to be the one to do it. So lots of research on CP. More good things turning up all the time; but none of that matters when you are in desperate pain (I made so many trips to the ER that I've lost count). I've said that people in CP are like the lepers of ancient civilizations -- the "untouchables". Now the morphine, oxycontin, demerol and others of the opiates have something cut into them that is supposed to take away any of the euphoric side affects -- I know this is laughable when you are in a clear state of mind. You NEED to be in a Pain Management group. When I write that I feel as though I'm just throwing a dart with a blindfold on. So uncertain are the people out there in this field. My youngest son was in an accident and had to have his back fused, then the rods broke, he's not got heart problems -- it just goes on and on. CP is an epidemic in this country. And I heard the other day that Drug Overdoses account for the Number One reason for death in this country - followed by what had been number one -- Vehicular Accidents. I've taken my meds, turned around, then wondered if I'd taken them, and turn around and take them again. I don't know why I'm still here. Except that I keep jumping into the fray over this issue. Obviously I could write for the next month and not get what I wanted to get out -- OUT. And all I've been through at the hands of the "experts" has shaped me and honed me into a depressed recluse. I've found an artistic side to me that I was very enchanted with initially -- Now, it's like so-what. After the pneumonia the dr. says I won't ever get back what I had (in terms of energy level). That was a big jolt that I kept trying to avoid hearing because I want to go to Africa and help with the healing, feeding, comfort of those people, especially the children. Somehow I've got to get myself out and into doing something "other-oriented". I've been approached about writing a book but it seems there are enough self-help books out there. It comes down to you and the PAIN. As I am basically an intuitive feeler when it comes to making decisions that is what guides me. I'm not a religious person -- although until a couple of years ago I was deeply spiritual, but after the seizure, that belief just fell away, much as a blanket you have wrapped around yourself to protect you from the cold. It was not a big MAD at some God -- the belief just left me. So. What we have here is a 63 year old woman (still looking younger) whose life has been lived (for 37 yrs. anyway) in "desperate" pain and nobody was listening. My 2nd husband at that time, started divorce proceedings so that I could no longer have the use of his medical insurance. I just went into the dr's office one day for medications/injections and was told that I was no longer covered. (I don't know why that didn't cause a seizure!! lol) I left the job market long ago and have filled my life with family, love and helping opportunities as were possible; but now it's like being dragged out of your grave into a new world you don't know or understand and nobody being able to understand what has happened to you. I always kept thinking I'd get over it, but then the years became a blurr and all I did was medicate the pain and try to keep up as best I could with family activities. I moved out into the country...saw no one, spoke to no one; had no support for all practical purposes. I continually wish I had a wand that I could wave and make everything ok; but that hasn't happened == yet, anyway.
I want to encourage you NOT to go to the alcohol as that only furthers your descent -- this is coming from someone who did try that so I know how bad the pain is and how I'd have done anything, ANYTHING to get out from its clutches. I get rilled when I see that another office where marijuana is dispensed to those whose dr. has w ritten them a prescription. It seems it is a battle between the Feds and the State laws on such. And who (as always) gets caught in the wheels of the ignorant person trying to show how they are "going to stamp out drugs in American society", those people who have had no other way to help fend off the debilitating pain. It is my belief that a person needs a multi-disciplinary approach to the task. If you have someone who can help think with and for you in finding such a group, so much the better. I had no one. Maybe that is why I'm as calloused when it comes to standing my ground on this and other issues. This I've lived -- so no one can speak to me when they've not walked in my skin. It is possible to get set up on the right dosage of pain killers, anxiety/lanti-depressant drugs, and whatever else may be appropriate to you specifically. If you don't already, learn to think with your gut and take someone with you when you are talking with the doctor. Someone who can take notes, and later give you their impression of what the doctor was all about. There are groups in California for people in CP. There are National Foundations/Organizations to help you with more info than you may currently have; and there is the issue of a bill in the House that is supposed to help CP patients regain some semblance of being treated like a human. Just type into Google or some search engine and ask for Chronic Pain Organizations. If you go right to a National group, they can help you with one that is located nearer you. I know this is a massive and disturbing, crushing not only flesh and bones, but Spirit too. I don't know if they'll let me put all this in one post ! When I get into writing I lose myself (which is a very good sign and once you get your pain properly medicated, then you will find something to engage your mind...this is as necessary for your restoration as any of the other medical approaches. I'm the Go=TO here at Tribe on Chronic Pain and How to Deal With It. I'd like to think that all my experiences, raking across the coals and being turned away from hospital ERs or even dr.s' offices (because I was just looking for drugs). Currently I have the good fortune to have a mobile doctor who comes to my apt. I found him and his group when all my then dr. associations went to shreds. I have great empathy for us all. There will be times when you feel stuck and are getting nowhere; then there will be times when you will just stand back in awe that your life just got bumped in a kind of earthquake==and you get morphed into a whole new being. As much as I can do and am able to do, I will do to the last breath of me, in what I see now is a Cause and the ones it harbors are broken, bereft of human companionship, the spittle of gossip, the joke at the pharmacy. Somehow I want all that I went through to count for something, somehow. I want people who are disabled to be granted a SS Disability -- based on that alone. Not as some have had to take it on a mental status.) I want people in CP to be treated like everyone else who has a chronic disease, e.g., Heart Problems, Diabetics, Cancer...and a whole host of other ailments. It's time for CHRONIC PAIN to be allowed to come out of the closet and receive the needed and appropriate treatment; be assisted in restoring or maintaining their lives.
So much information is coming out now on TMJ. I read that a study of cadavers showed that women had multiple X the number of nerve receptors in their cheeks as opposed to the males. This was a huge breakthrough for me as I had begun to believe that I was truly crazy!
And the brain is only just now begun to be mapped. I said that reading that research data was like say, having Polio strike you, crippling you for life, and the next day you hear that they have found a vaccine for it. It won't heal what you have but it will stop future generations from the suffering that you and so many others went through.
Let me know if there's anything I can do for you....or any of you.
You are already in my Heart because you are one whose life is akin to mine, and I expect so too, others. I could go on and on but should also stop! Take care of you, be good to you, be sure you eat as well as possible. I saw a Nutritionist and Herbalist among so many and realize how important it is NOT to forget the rest of your body.
You have my genuine empathy and loving sympathy .......You Can Make It Through!! You are in a fight for your life. YOUR LIFE!!!!!!!
patricia church
Chronic Pain Advocate
reply to this post
I am no expert on CP; however I have lived in CP for 37 years -- probably older than most people reading this. I been on just about every pain medication (including the patches, TENS unit); been through too many psychiatrists to count (and a pretty incredible experience at the hands of one of them who put me in a Behavior Modification program)--also the anti-depressants (pain and depression go hand in hand); tried all manner of osteopaths, chiropractors, massage therapists, neurologists, neurosurgeons, Hypnosis, Biofeedback, Trigger Point Injections, physical therapy, just regular M.D.s; oral surgeons (have had 5 surgeries on my jaws to date, one of which left me disfigured; numerous dentists (trying to save what teeth I have left. Because of the jaw surgeries (TMJ) I now have no saliva glands and one of the outcomes of that is "dry mouth" which can lead to fatal pneumonia (yes I spent 6 weeks == 30 days in ICU in a hospital for that & survived). In July of 2005 I just got fed up and said I was taking no more drugs -- this led me to have a seizure and another hospital stay -- it also removed a lot of my memory bank and still have to write everything down if I'm to hopefully remember it. When I awoke from the seizure the pain that had been gnawing the left side of my head constantly for 35 years was diminished to GONE (no one understands that, least of all me). I continued to recover and divest my body of all drugs. By Christmas of 2005 I was out hiking with my family when I fell 20 feet off a cliff. I broke all my ribs, back, numerous fractures, contusions and wound up back on a ventilator. When I was removed from the vent, I began to come around and saw that they were pushing in drugs so much so that I said if you were to press a pore on my skin it would ooze morphine! Now I've managed to get through the past year with no incidents (also might mention that I lost all things material, e.g., car, etc.) and now live in one room with a bathroom in a small apt. in a small town. I won't begin to tell you what all has come and mostly gone through my life during this time. I did wind up back on the pain meds after the fall. I sank more deeply than ever into Depression and even called my law enforcement son to ask how to go about getting a gun; but then thought better of it as I figured I'd probably make a mess and wind up a vegetable so that was out). I have been on a disability for 20 years, raised 3 sons, worked in the labor force, did lots of Volunteer work (e.g., EMT, Fire Rescue, worked in a soup kitchen for the homeless, taught adult literacy, founded an organization for people in CP and worked with that for about 5 years before moving to another state. I can tell you that where you live (state/country) makes a hell of a lot of difference in the kind of treatment you receive for CP. Shortly after moving to CA, I found that I was eligible for medical aid for prescriptions (w/o which I don't think I'd still be here). Anyway I began to see a Hospice doctor, who also had a private practice and helped those of us who were so stigmatized by the medications we have to take that we get put on ER lists as being "drug seekers". I've lived it all. I tried to take up alcohol at one point back in the '70s but couldn't as it made me so nauseated I couldn't stand it. Once I was put on the meds out here, I was able to have some semblance of life, albeit I paid a high price for it. Most people do not understand the kind of "scoping out" we have to take. It's not bad enough to be in l0/l0 pain (and I had that numbering system!!!) but you've got to start over with each new doctor and maybe they believe you and maybe they don't. My biggest obstacle was that no one knew (initially) what was my problem with the pain. It wasn't until l982 that I finally was diagnosed with TMJ and my joints had deteriorated to the point that they had to be replaced==with joints that later proved to be bad. Which meant another surgery to take that out and put something else in; but Medicare doesn't like to pay for this type of "dental surgery" (one of these days somebody out there is going to deduce that the mouth is part of the body as much as the heart!). I'm writing this without knowing anything about you or what is going on in your life. Needless to say I finally got to the point that if I was going to be saved, I'd have to be the one to do it. So lots of research on CP. More good things turning up all the time; but none of that matters when you are in desperate pain (I made so many trips to the ER that I've lost count). I've said that people in CP are like the lepers of ancient civilizations -- the "untouchables". Now the morphine, oxycontin, demerol and others of the opiates have something cut into them that is supposed to take away any of the euphoric side affects -- I know this is laughable when you are in a clear state of mind. You NEED to be in a Pain Management group. When I write that I feel as though I'm just throwing a dart with a blindfold on. So uncertain are the people out there in this field. My youngest son was in an accident and had to have his back fused, then the rods broke, he's not got heart problems -- it just goes on and on. CP is an epidemic in this country. And I heard the other day that Drug Overdoses account for the Number One reason for death in this country - followed by what had been number one -- Vehicular Accidents. I've taken my meds, turned around, then wondered if I'd taken them, and turn around and take them again. I don't know why I'm still here. Except that I keep jumping into the fray over this issue. Obviously I could write for the next month and not get what I wanted to get out -- OUT. And all I've been through at the hands of the "experts" has shaped me and honed me into a depressed recluse. I've found an artistic side to me that I was very enchanted with initially -- Now, it's like so-what. After the pneumonia the dr. says I won't ever get back what I had (in terms of energy level). That was a big jolt that I kept trying to avoid hearing because I want to go to Africa and help with the healing, feeding, comfort of those people, especially the children. Somehow I've got to get myself out and into doing something "other-oriented". I've been approached about writing a book but it seems there are enough self-help books out there. It comes down to you and the PAIN. As I am basically an intuitive feeler when it comes to making decisions that is what guides me. I'm not a religious person -- although until a couple of years ago I was deeply spiritual, but after the seizure, that belief just fell away, much as a blanket you have wrapped around yourself to protect you from the cold. It was not a big MAD at some God -- the belief just left me. So. What we have here is a 63 year old woman (still looking younger) whose life has been lived (for 37 yrs. anyway) in "desperate" pain and nobody was listening. My 2nd husband at that time, started divorce proceedings so that I could no longer have the use of his medical insurance. I just went into the dr's office one day for medications/injections and was told that I was no longer covered. (I don't know why that didn't cause a seizure!! lol) I left the job market long ago and have filled my life with family, love and helping opportunities as were possible; but now it's like being dragged out of your grave into a new world you don't know or understand and nobody being able to understand what has happened to you. I always kept thinking I'd get over it, but then the years became a blurr and all I did was medicate the pain and try to keep up as best I could with family activities. I moved out into the country...saw no one, spoke to no one; had no support for all practical purposes. I continually wish I had a wand that I could wave and make everything ok; but that hasn't happened == yet, anyway.
I want to encourage you NOT to go to the alcohol as that only furthers your descent -- this is coming from someone who did try that so I know how bad the pain is and how I'd have done anything, ANYTHING to get out from its clutches. I get rilled when I see that another office where marijuana is dispensed to those whose dr. has w ritten them a prescription. It seems it is a battle between the Feds and the State laws on such. And who (as always) gets caught in the wheels of the ignorant person trying to show how they are "going to stamp out drugs in American society", those people who have had no other way to help fend off the debilitating pain. It is my belief that a person needs a multi-disciplinary approach to the task. If you have someone who can help think with and for you in finding such a group, so much the better. I had no one. Maybe that is why I'm as calloused when it comes to standing my ground on this and other issues. This I've lived -- so no one can speak to me when they've not walked in my skin. It is possible to get set up on the right dosage of pain killers, anxiety/lanti-depressant drugs, and whatever else may be appropriate to you specifically. If you don't already, learn to think with your gut and take someone with you when you are talking with the doctor. Someone who can take notes, and later give you their impression of what the doctor was all about. There are groups in California for people in CP. There are National Foundations/Organizations to help you with more info than you may currently have; and there is the issue of a bill in the House that is supposed to help CP patients regain some semblance of being treated like a human. Just type into Google or some search engine and ask for Chronic Pain Organizations. If you go right to a National group, they can help you with one that is located nearer you. I know this is a massive and disturbing, crushing not only flesh and bones, but Spirit too. I don't know if they'll let me put all this in one post ! When I get into writing I lose myself (which is a very good sign and once you get your pain properly medicated, then you will find something to engage your mind...this is as necessary for your restoration as any of the other medical approaches. I'm the Go=TO here at Tribe on Chronic Pain and How to Deal With It. I'd like to think that all my experiences, raking across the coals and being turned away from hospital ERs or even dr.s' offices (because I was just looking for drugs). Currently I have the good fortune to have a mobile doctor who comes to my apt. I found him and his group when all my then dr. associations went to shreds. I have great empathy for us all. There will be times when you feel stuck and are getting nowhere; then there will be times when you will just stand back in awe that your life just got bumped in a kind of earthquake==and you get morphed into a whole new being. As much as I can do and am able to do, I will do to the last breath of me, in what I see now is a Cause and the ones it harbors are broken, bereft of human companionship, the spittle of gossip, the joke at the pharmacy. Somehow I want all that I went through to count for something, somehow. I want people who are disabled to be granted a SS Disability -- based on that alone. Not as some have had to take it on a mental status.) I want people in CP to be treated like everyone else who has a chronic disease, e.g., Heart Problems, Diabetics, Cancer...and a whole host of other ailments. It's time for CHRONIC PAIN to be allowed to come out of the closet and receive the needed and appropriate treatment; be assisted in restoring or maintaining their lives.
So much information is coming out now on TMJ. I read that a study of cadavers showed that women had multiple X the number of nerve receptors in their cheeks as opposed to the males. This was a huge breakthrough for me as I had begun to believe that I was truly crazy!
And the brain is only just now begun to be mapped. I said that reading that research data was like say, having Polio strike you, crippling you for life, and the next day you hear that they have found a vaccine for it. It won't heal what you have but it will stop future generations from the suffering that you and so many others went through.
Let me know if there's anything I can do for you....or any of you.
You are already in my Heart because you are one whose life is akin to mine, and I expect so too, others. I could go on and on but should also stop! Take care of you, be good to you, be sure you eat as well as possible. I saw a Nutritionist and Herbalist among so many and realize how important it is NOT to forget the rest of your body.
You have my genuine empathy and loving sympathy .......You Can Make It Through!! You are in a fight for your life. YOUR LIFE!!!!!!!
patricia church
Chronic Pain Advocate
reply to this post Hi Dave,
I am no expert on CP; however I have lived in CP for 37 years -- probably older than most people reading this. I been on just about every pain medication (including the patches, TENS unit); been through too many psychiatrists to count (and a pretty incredible experience at the hands of one of them who put me in a Behavior Modification program)--also the anti-depressants (pain and depression go hand in hand); tried all manner of osteopaths, chiropractors, massage therapists, neurologists, neurosurgeons, Hypnosis, Biofeedback, Trigger Point Injections, physical therapy, just regular M.D.s; oral surgeons (have had 5 surgeries on my jaws to date, one of which left me disfigured; numerous dentists (trying to save what teeth I have left. Because of the jaw surgeries (TMJ) I now have no saliva glands and one of the outcomes of that is "dry mouth" which can lead to fatal pneumonia (yes I spent 6 weeks == 30 days in ICU in a hospital for that & survived). In July of 2005 I just got fed up and said I was taking no more drugs -- this led me to have a seizure and another hospital stay -- it also removed a lot of my memory bank and still have to write everything down if I'm to hopefully remember it. When I awoke from the seizure the pain that had been gnawing the left side of my head constantly for 35 years was diminished to GONE (no one understands that, least of all me). I continued to recover and divest my body of all drugs. By Christmas of 2005 I was out hiking with my family when I fell 20 feet off a cliff. I broke all my ribs, back, numerous fractures, contusions and wound up back on a ventilator. When I was removed from the vent, I began to come around and saw that they were pushing in drugs so much so that I said if you were to press a pore on my skin it would ooze morphine! Now I've managed to get through the past year with no incidents (also might mention that I lost all things material, e.g., car, etc.) and now live in one room with a bathroom in a small apt. in a small town. I won't begin to tell you what all has come and mostly gone through my life during this time. I did wind up back on the pain meds after the fall. I sank more deeply than ever into Depression and even called my law enforcement son to ask how to go about getting a gun; but then thought better of it as I figured I'd probably make a mess and wind up a vegetable so that was out). I have been on a disability for 20 years, raised 3 sons, worked in the labor force, did lots of Volunteer work (e.g., EMT, Fire Rescue, worked in a soup kitchen for the homeless, taught adult literacy, founded an organization for people in CP and worked with that for about 5 years before moving to another state. I can tell you that where you live (state/country) makes a hell of a lot of difference in the kind of treatment you receive for CP. Shortly after moving to CA, I found that I was eligible for medical aid for prescriptions (w/o which I don't think I'd still be here). Anyway I began to see a Hospice doctor, who also had a private practice and helped those of us who were so stigmatized by the medications we have to take that we get put on ER lists as being "drug seekers". I've lived it all. I tried to take up alcohol at one point back in the '70s but couldn't as it made me so nauseated I couldn't stand it. Once I was put on the meds out here, I was able to have some semblance of life, albeit I paid a high price for it. Most people do not understand the kind of "scoping out" we have to take. It's not bad enough to be in l0/l0 pain (and I had that numbering system!!!) but you've got to start over with each new doctor and maybe they believe you and maybe they don't. My biggest obstacle was that no one knew (initially) what was my problem with the pain. It wasn't until l982 that I finally was diagnosed with TMJ and my joints had deteriorated to the point that they had to be replaced==with joints that later proved to be bad. Which meant another surgery to take that out and put something else in; but Medicare doesn't like to pay for this type of "dental surgery" (one of these days somebody out there is going to deduce that the mouth is part of the body as much as the heart!). I'm writing this without knowing anything about you or what is going on in your life. Needless to say I finally got to the point that if I was going to be saved, I'd have to be the one to do it. So lots of research on CP. More good things turning up all the time; but none of that matters when you are in desperate pain (I made so many trips to the ER that I've lost count). I've said that people in CP are like the lepers of ancient civilizations -- the "untouchables". Now the morphine, oxycontin, demerol and others of the opiates have something cut into them that is supposed to take away any of the euphoric side affects -- I know this is laughable when you are in a clear state of mind. You NEED to be in a Pain Management group. When I write that I feel as though I'm just throwing a dart with a blindfold on. So uncertain are the people out there in this field. My youngest son was in an accident and had to have his back fused, then the rods broke, he's not got heart problems -- it just goes on and on. CP is an epidemic in this country. And I heard the other day that Drug Overdoses account for the Number One reason for death in this country - followed by what had been number one -- Vehicular Accidents. I've taken my meds, turned around, then wondered if I'd taken them, and turn around and take them again. I don't know why I'm still here. Except that I keep jumping into the fray over this issue. Obviously I could write for the next month and not get what I wanted to get out -- OUT. And all I've been through at the hands of the "experts" has shaped me and honed me into a depressed recluse. I've found an artistic side to me that I was very enchanted with initially -- Now, it's like so-what. After the pneumonia the dr. says I won't ever get back what I had (in terms of energy level). That was a big jolt that I kept trying to avoid hearing because I want to go to Africa and help with the healing, feeding, comfort of those people, especially the children. Somehow I've got to get myself out and into doing something "other-oriented". I've been approached about writing a book but it seems there are enough self-help books out there. It comes down to you and the PAIN. As I am basically an intuitive feeler when it comes to making decisions that is what guides me. I'm not a religious person -- although until a couple of years ago I was deeply spiritual, but after the seizure, that belief just fell away, much as a blanket you have wrapped around yourself to protect you from the cold. It was not a big MAD at some God -- the belief just left me. So. What we have here is a 63 year old woman (still looking younger) whose life has been lived (for 37 yrs. anyway) in "desperate" pain and nobody was listening. My 2nd husband at that time, started divorce proceedings so that I could no longer have the use of his medical insurance. I just went into the dr's office one day for medications/injections and was told that I was no longer covered. (I don't know why that didn't cause a seizure!! lol) I left the job market long ago and have filled my life with family, love and helping opportunities as were possible; but now it's like being dragged out of your grave into a new world you don't know or understand and nobody being able to understand what has happened to you. I always kept thinking I'd get over it, but then the years became a blurr and all I did was medicate the pain and try to keep up as best I could with family activities. I moved out into the country...saw no one, spoke to no one; had no support for all practical purposes. I continually wish I had a wand that I could wave and make everything ok; but that hasn't happened == yet, anyway.
I want to encourage you NOT to go to the alcohol as that only furthers your descent -- this is coming from someone who did try that so I know how bad the pain is and how I'd have done anything, ANYTHING to get out from its clutches. I get rilled when I see that another office where marijuana is dispensed to those whose dr. has w ritten them a prescription. It seems it is a battle between the Feds and the State laws on such. And who (as always) gets caught in the wheels of the ignorant person trying to show how they are "going to stamp out drugs in American society", those people who have had no other way to help fend off the debilitating pain. It is my belief that a person needs a multi-disciplinary approach to the task. If you have someone who can help think with and for you in finding such a group, so much the better. I had no one. Maybe that is why I'm as calloused when it comes to standing my ground on this and other issues. This I've lived -- so no one can speak to me when they've not walked in my skin. It is possible to get set up on the right dosage of pain killers, anxiety/lanti-depressant drugs, and whatever else may be appropriate to you specifically. If you don't already, learn to think with your gut and take someone with you when you are talking with the doctor. Someone who can take notes, and later give you their impression of what the doctor was all about. There are groups in California for people in CP. There are National Foundations/Organizations to help you with more info than you may currently have; and there is the issue of a bill in the House that is supposed to help CP patients regain some semblance of being treated like a human. Just type into Google or some search engine and ask for Chronic Pain Organizations. If you go right to a National group, they can help you with one that is located nearer you. I know this is a massive and disturbing, crushing not only flesh and bones, but Spirit too. I don't know if they'll let me put all this in one post ! When I get into writing I lose myself (which is a very good sign and once you get your pain properly medicated, then you will find something to engage your mind...this is as necessary for your restoration as any of the other medical approaches. I'm the Go=TO here at Tribe on Chronic Pain and How to Deal With It. I'd like to think that all my experiences, raking across the coals and being turned away from hospital ERs or even dr.s' offices (because I was just looking for drugs). Currently I have the good fortune to have a mobile doctor who comes to my apt. I found him and his group when all my then dr. associations went to shreds. I have great empathy for us all. There will be times when you feel stuck and are getting nowhere; then there will be times when you will just stand back in awe that your life just got bumped in a kind of earthquake==and you get morphed into a whole new being. As much as I can do and am able to do, I will do to the last breath of me, in what I see now is a Cause and the ones it harbors are broken, bereft of human companionship, the spittle of gossip, the joke at the pharmacy. Somehow I want all that I went through to count for something, somehow. I want people who are disabled to be granted a SS Disability -- based on that alone. Not as some have had to take it on a mental status.) I want people in CP to be treated like everyone else who has a chronic disease, e.g., Heart Problems, Diabetics, Cancer...and a whole host of other ailments. It's time for CHRONIC PAIN to be allowed to come out of the closet and receive the needed and appropriate treatment; be assisted in restoring or maintaining their lives.
So much information is coming out now on TMJ. I read that a study of cadavers showed that women had multiple X the number of nerve receptors in their cheeks as opposed to the males. This was a huge breakthrough for me as I had begun to believe that I was truly crazy!
And the brain is only just now begun to be mapped. I said that reading that research data was like say, having Polio strike you, crippling you for life, and the next day you hear that they have found a vaccine for it. It won't heal what you have but it will stop future generations from the suffering that you and so many others went through.
Let me know if there's anything I can do for you....or any of you.
You are already in my Heart because you are one whose life is akin to mine, and I expect so too, others. I could go on and on but should also stop! Take care of you, be good to you, be sure you eat as well as possible. I saw a Nutritionist and Herbalist among so many and realize how important it is NOT to forget the rest of your body.
You have my genuine empathy and loving sympathy .......You Can Make It Through!! You are in a fight for your life. YOUR LIFE!!!!!!!
patricia church
Chronic Pain Advocate
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