Take what you can use, & leave the rest! (WHEW! Long!)

Discussion in 'Fibromyalgia Main Forum' started by missvickielynn, Oct 6, 2002.

  1. missvickielynn

    missvickielynn New Member

    Hello everyone!

    I have not posted for the majority of this year. That is partially due to some of the things that were happening during and after the big change on the board, but mostly because I just don't usually have the energy to do so. My profile is not updated, cause it didn't make it through all the board changes. I will get it updated ASAP.

    I originally intended to post this on the thread that was started by Jaimy. I finally worked up the energy and the nerve to compose the post, which I composed offline. Then, when I came back online, and onto the board........Lo and behold, Jaimy had removed her post! I found that not only frustrating, but interesting, in that I thought that once a message had replies posted to it, the original poster could not delete it. At least, that is the way it used to be.

    The topic of Jaimy's post was, I suppose you could say, a debate about the way in which advice and information presented by people who are either in remission, or have a lesser degree of illness severity, and those attempts to share what works for them and to dispell hopelessness, is often misunderstood or taken personally by those who are either newly diagnosed, or who have not found any long term, significant relief.

    Jaimy, if you read this......I am not sure of your reasons for deleting your thread......and you are right when you say there were lots of worthwhile posts on it. In my opinion, EVERY post is worthwhile, except the ones by the snake oil hucksters. And Jaimy, I have followed your posts, and find you to be very intelligent, and well informed. The same is true of many others who post on the board, and the only reason I am naming only you right now is because it was your thread I had intened to reply to. Incidently, I would be fascinated to hear sometime who employs you to do CFIDS/FMS research, and how you found such a plumb assignment. I am also curious if you are working full-time, in other words, are you still on disability?

    At any rate, since you deleted your post, I decided to make my own, so that my time and effort in composing this would not have been in vain. And, just like I tend to do when I try to do too much on good days, trying to make up for lost time during bad days....I will try to make up for lost time away from the board, here in this post. The few who remember me will remember that I am very long-winded. Well, it wears me out, too....but I Yam what I Yam.

    For those who do not remember me...

    I am 49 years old. I was diagnosed with CFS in 1988, Endometriosis in 1991, and FMS/MPS in 1993, and other issues within the last 2 years. I have been ill most of my life, but I believe the CFS & FMS/MPS started in my early 20's, after a bout with Mono at 17, followed by mono-related hepatitis at 19.

    The DD's began interfering with my ability to work beginning in the early 1980's.........long before anyone was talking about CFS, FMS, etc. I had moved to a new state in the fall of 1979 for a new job that I thought was to be the beginning of a career in the newspaper business. I was working 45 to 50 hours a week at my full time job at the paper, and 16 hours a week on a week-end job. I continued that, even after my illness began interfering with my work, until Jan.1983, when gave up my part-time job. I was only able to hold onto the full time job until July of that year. I was then 30 years old.

    When I returned to my home state in early 1984, I went back to work almost immediately, but began a four year search to find out what the hell was wrong with me. The first diagnosis came, as I said, in 1988, when my then-employer was convinced I was having thyroid issues, and sent me to see her Endocrinologist. While he did find some questionable thyroid issues, including a nodule on my thyroid, his primary diagnosis was CFS. That was only the year following the CDC finally giving a new name to what they had been calling Chronic Epstein Barr Virus Syndrome.

    Years went by, and the other diagnoses were added. I worked at 5 different jobs in the years between 1988 and 2000, with the longest one being 7 1/2 years at the one I lost in Dec. 2000. In all that time, I spent a total of 2 years, (broken up into months, between 3 different jobs) not working. I even filed for SSDI in 1992, but did not pursue it past the first denial, for reasons that I won't go into.

    Now, here I am, almost 20 years after the first (CFS) diagnosis.

    All of my reasearch, personal experience, and especially retrospect, tells me that the reason I have CFIDS, FMS and MPS, advanced osteoarthritis and osteoporosis, is because of the combinations of the following:

    1. Multiple injuries, and various recurrent body-wide infections, dating all the way back into my early childhood, and continuing to this day. The details of which I will not bore you with......they would not be anything you haven't heard or experienced.

    2. Years of Endometriosis, from my early twenties, not diagnosed and treated until 1993, when I had a huge endometrioma removed from my right ovary, which left practically nothing of that ovary. (Of course, the Endo issue brings up the old "which came first....." issue.)

    3. Ongoing, unrelenting emotional stress, whether from childhood abuse, domestic violence, and other family problems, contant illness, and financial problems, and any variation on those themes;

    4. Many ill-advised lifestyle choices, which for me were smoking, poor nutrition, and use of illicit drugs. The smoking and drug use are in the past, but the damage is probably already done, and in retrospect I know that even the illicit drug use was basically a misguided and ignorant attempt to treat the symptoms of these DD's; the nutrition issue is a work in progress.

    5. The continued dogged attempt to "keep on pushing", living in denial about the illness, and then allowing myself to be controlled by other people's judgements about what I could and could not do, or what I should or should not do to get better.

    I am totally convinced, especially with that good old 20/20 retrospect, that continuing to push myself, especially without effective and consistent treatment of the underlying conditions, and without treatment of my pain and sleep disturbance, has resulted in my current near-total collapse. I am convinced that had I (and many of us) been able to receive early diagnosis, education and treatment, I/we probably would not have reached such a level of decline.

    I have gone through many remissions, some lasting as long as 3 and 4 years, during which I was convinced I was "cured", and that whatever treatment and exercise regimen I was on at the time had provided the cure. I, too, found myself almost sounding smug and slightly judgemental when I would "share" my current successful treatment with others.

    I found myself many times thinking to myself during these remissions, when hearing the cries of people who were suffering just as I had, that I would "never let myself get that sick again". Just like, when I have lost weight, after being obese, I would smugly say, "I will never let myself get that fat again." It is really easy to forget, when you are in remission, no matter how brief or how long, that I never just decided to "let myself" get that sick or that fat.

    Even though I bear some responsibility for some of the poor lifestyle choices I made, as mentioned above, by and large this DD is not "My Fault". It is easy to forget during remissions, especially if they last a good while, just how sick I was, and how much it hurt when people implied in even the slightest way, that I was to blame for my illness.

    But the remissions didn't last, treatments and regimens stopped working as well, or at all. But I still continued to push myself to "keep on keeping on", believing (and being told my family, friends and employers), that I had no other choice.

    The results of continuing to push beyond my abilities have proved more detrimental each time, and have brought me to the place I am today. Unemployed for 2 years (after being fired from a job I held onto tooth and nail for almost eight years), completely unable to work, barely able to do even the most basic things on bad days, and only able to handle "one or 2 things a day", as I put it often, on "good" days.

    Over the years, I have done everything and anything, traditional, alternative, whatever the current thinking and research is at any given time, which we all know has at least some measure of bias, as was mentioned by someone else in Jaimy's thread.

    I have forced myself to exercise past my limits so many times I can't count, against my own better judgement, and against most "knowledgable" advice about CFS. I have used all the recommended meds, except narcotics. Most of them I could not tolerate side effects (such as Elavil, Flexeril, and Effexor), or they just didn't help. I have been in and out of physical therapy of various kinds, and got much better relief (although temporary) from chiropractic, massage and trigger-point therapy. I have tried many herbal and homeopathic regimens. I have used yoga and meditation (and still do, but not as often as I would like.) On and on........

    Now, I take Klonopin .5 mg at bedtime, but am thinking of talking to my doc about upping it, because even with it and Ultram, I am still only sleeping about 3 or 4 hours a night, due to pain and RLS. I have been on Klonopin since January of this year. I also take Claritin for allergies, Zovirax for Herpes Simplex and Zoster, and use Combi-Patch HRT.

    I am also going to talk to my Doc about Guai treatment and antibiotic therapy, based on past improvements 3 different times when I was given the combination of Biaxin and Entex LA for chronic bronchitis, or a sinus infection after a cold or allergy attack, or strep throat. This idea has only come to me within the past 6 months, and I became aware of it through both information on this board, and as a result of gathering my medical records for SSDI, and comparing those times (when I was on Biaxin and Entex) with my diaries.

    I hope to get back to walking at least 10 minutes, three times a week, working up to 10 mins., twice a day, 3 times a week, and more as I build up some stamina. That is my hope. I have been able to do it before........so I hope to do it again.

    I have finally learned to MOSTLY stay within certain limits, as much as life will allow me to, but to not stop all activity, even on my worst days. I have learned that to completely stop moving my body, and to get no exercise at all, is definitely going to make me worse. It always does. So I try to do something, even if it is just simple stretches, and even if I have to do them in bed.

    And there are many other things I do, many of which I have learned here on this board, to ease pain and improve quality of life.......or at least make it through the killer flares, the ones when you don't know how you can be this sick and not die!

    I have accepted that I cannot work.....at least not now, and not for the forseeable future. But even not working has brought on circumstances that force me to do more that I can really handle without making myself more ill. (Like starting the SSDI process......for the 3rd time in a year.) So I have not yet been able to really benefit from "not working". So far, it has just caused a whole new set of problems that make my illness worse. I pray that some of that will ease up soon. But I have basically accepted that I could not continue to work.

    I am completely alone, my "friends" deserted me very shortly after I got fired, most of my family, with 2 exceptions, have deserted me, and the 2 exceptions are threatening to desert me. It is now to the point that they are saying things like, "If you want us to help you financially, you are going to have to get rid of your pets, cause you are spending too much money on them!" I spend, on average, $16 per week on my pets. I have a house full.....1 little mutt, and 5 cats, three of which were dumped on me by strangers last spring, as unweaned kittens with no mother. My animals are the only reason I get up lately, and I need them for reasons that only other pet lovers can really understand, and that non-pet lovers will never get!

    I am so close to losing what little I have, that I can barely breathe most days. And there are many times every day that I think I might not make it through this SSDI process alive, much less with anything left in my life that means anything to me, which at this point is my home, the belongings inside it, my car, (all of which are paid for thankfully), and my precious pets.

    But then, when I think I can't make it one more minute......I try to remind myself that I do have many things to be thankful for, and I am still here, so God must not be done with me yet. The more desperate I feel, the more I pray, not just for help and guidance, but now, more and more in gratitude. Maybe there is a lesson in that, huh? Everything happens for a reason.

    Having said all that..........I still have not given up, in spite of the fact that my family tells me that filing for SSDI says I have thrown up my hands and said "There is no hope!" I am still trying to get better, still looking for something to give me some improvement. Still looking for "it". And still hoping for a miracle cure.

    And I still look to learn from people like you all here on this board, both from those of you who have had improvement, whether a little or a lot, and whether long-lasting or temporary, and from those of you who are still suffering.

    Thanks to this board, despite the many changes and ongoing conflicts (which will always continue occur, since conflict is part of the human condition to begin with), I have gotten support, empathy, and good advice. I have had many "Aha!" moments from reading this board, more times than I can count. I have also had many "GRRRRRRRR" moments. But, for the most part, the "Aha" moments make it worth the other moments.

    And I try to remember to take what I can use, and leave the rest. And I try not to let what others on the board say (or in some cases, don't say) hurt my feelings, or make me feel "less than". I try to remember that when people share what works for them, they are trying to help, even if they are not always perfectly diplomatic or sensitive in the way they express themselves. I have to remember, I have done the same thing when I have been in remissions.

    I do hope and pray, that during my NEXT major remission, that I can share what "it" is that has worked for me, without sounding judgemental when others express that "it" didn't work for them, or if they are not ready to try whatever "it" happens to be, for their own probably very good reasons. I pray that I will not forget what it is like to be this sick, and to be dismissed or blamed.

    And I make a commitment to myself that, as soon as I get through this initial hell of the SSDI process (I am almost there), I will try to be supportive to someone on this board who is hurting and looking for answers, suggestions, or just empathy and validation, or a shoulder to cry on.

    If you made it all the way through my post.....thank you! You deserve a medal for patience, tolerance, and compassion. If you didn't......I can't blame you!

    But there has been a lot of stored-up stuff I wanted to say. And believe me.....this post has not been the whine that it might have been.......even a few days ago. I truly have tried to make this post focus on something other that my current fear surrounding my circumstances. I hope that something I have said will resonate with some of you! Thank you for listening!

    Peace,

    Vickie
    [This Message was Edited on 10/07/2002]
  2. missvickielynn

    missvickielynn New Member

    Hello everyone!

    I have not posted for the majority of this year. That is partially due to some of the things that were happening during and after the big change on the board, but mostly because I just don't usually have the energy to do so. My profile is not updated, cause it didn't make it through all the board changes. I will get it updated ASAP.

    I originally intended to post this on the thread that was started by Jaimy. I finally worked up the energy and the nerve to compose the post, which I composed offline. Then, when I came back online, and onto the board........Lo and behold, Jaimy had removed her post! I found that not only frustrating, but interesting, in that I thought that once a message had replies posted to it, the original poster could not delete it. At least, that is the way it used to be.

    The topic of Jaimy's post was, I suppose you could say, a debate about the way in which advice and information presented by people who are either in remission, or have a lesser degree of illness severity, and those attempts to share what works for them and to dispell hopelessness, is often misunderstood or taken personally by those who are either newly diagnosed, or who have not found any long term, significant relief.

    Jaimy, if you read this......I am not sure of your reasons for deleting your thread......and you are right when you say there were lots of worthwhile posts on it. In my opinion, EVERY post is worthwhile, except the ones by the snake oil hucksters. And Jaimy, I have followed your posts, and find you to be very intelligent, and well informed. The same is true of many others who post on the board, and the only reason I am naming only you right now is because it was your thread I had intened to reply to. Incidently, I would be fascinated to hear sometime who employs you to do CFIDS/FMS research, and how you found such a plumb assignment. I am also curious if you are working full-time, in other words, are you still on disability?

    At any rate, since you deleted your post, I decided to make my own, so that my time and effort in composing this would not have been in vain. And, just like I tend to do when I try to do too much on good days, trying to make up for lost time during bad days....I will try to make up for lost time away from the board, here in this post. The few who remember me will remember that I am very long-winded. Well, it wears me out, too....but I Yam what I Yam.

    For those who do not remember me...

    I am 49 years old. I was diagnosed with CFS in 1988, Endometriosis in 1991, and FMS/MPS in 1993, and other issues within the last 2 years. I have been ill most of my life, but I believe the CFS & FMS/MPS started in my early 20's, after a bout with Mono at 17, followed by mono-related hepatitis at 19.

    The DD's began interfering with my ability to work beginning in the early 1980's.........long before anyone was talking about CFS, FMS, etc. I had moved to a new state in the fall of 1979 for a new job that I thought was to be the beginning of a career in the newspaper business. I was working 45 to 50 hours a week at my full time job at the paper, and 16 hours a week on a week-end job. I continued that, even after my illness began interfering with my work, until Jan.1983, when gave up my part-time job. I was only able to hold onto the full time job until July of that year. I was then 30 years old.

    When I returned to my home state in early 1984, I went back to work almost immediately, but began a four year search to find out what the hell was wrong with me. The first diagnosis came, as I said, in 1988, when my then-employer was convinced I was having thyroid issues, and sent me to see her Endocrinologist. While he did find some questionable thyroid issues, including a nodule on my thyroid, his primary diagnosis was CFS. That was only the year following the CDC finally giving a new name to what they had been calling Chronic Epstein Barr Virus Syndrome.

    Years went by, and the other diagnoses were added. I worked at 5 different jobs in the years between 1988 and 2000, with the longest one being 7 1/2 years at the one I lost in Dec. 2000. In all that time, I spent a total of 2 years, (broken up into months, between 3 different jobs) not working. I even filed for SSDI in 1992, but did not pursue it past the first denial, for reasons that I won't go into.

    Now, here I am, almost 20 years after the first (CFS) diagnosis.

    All of my reasearch, personal experience, and especially retrospect, tells me that the reason I have CFIDS, FMS and MPS, advanced osteoarthritis and osteoporosis, is because of the combinations of the following:

    1. Multiple injuries, and various recurrent body-wide infections, dating all the way back into my early childhood, and continuing to this day. The details of which I will not bore you with......they would not be anything you haven't heard or experienced.

    2. Years of Endometriosis, from my early twenties, not diagnosed and treated until 1993, when I had a huge endometrioma removed from my right ovary, which left practically nothing of that ovary. (Of course, the Endo issue brings up the old "which came first....." issue.)

    3. Ongoing, unrelenting emotional stress, whether from childhood abuse, domestic violence, and other family problems, contant illness, and financial problems, and any variation on those themes;

    4. Many ill-advised lifestyle choices, which for me were smoking, poor nutrition, and use of illicit drugs. The smoking and drug use are in the past, but the damage is probably already done, and in retrospect I know that even the illicit drug use was basically a misguided and ignorant attempt to treat the symptoms of these DD's; the nutrition issue is a work in progress.

    5. The continued dogged attempt to "keep on pushing", living in denial about the illness, and then allowing myself to be controlled by other people's judgements about what I could and could not do, or what I should or should not do to get better.

    I am totally convinced, especially with that good old 20/20 retrospect, that continuing to push myself, especially without effective and consistent treatment of the underlying conditions, and without treatment of my pain and sleep disturbance, has resulted in my current near-total collapse. I am convinced that had I (and many of us) been able to receive early diagnosis, education and treatment, I/we probably would not have reached such a level of decline.

    I have gone through many remissions, some lasting as long as 3 and 4 years, during which I was convinced I was "cured", and that whatever treatment and exercise regimen I was on at the time had provided the cure. I, too, found myself almost sounding smug and slightly judgemental when I would "share" my current successful treatment with others.

    I found myself many times thinking to myself during these remissions, when hearing the cries of people who were suffering just as I had, that I would "never let myself get that sick again". Just like, when I have lost weight, after being obese, I would smugly say, "I will never let myself get that fat again." It is really easy to forget, when you are in remission, no matter how brief or how long, that I never just decided to "let myself" get that sick or that fat.

    Even though I bear some responsibility for some of the poor lifestyle choices I made, as mentioned above, by and large this DD is not "My Fault". It is easy to forget during remissions, especially if they last a good while, just how sick I was, and how much it hurt when people implied in even the slightest way, that I was to blame for my illness.

    But the remissions didn't last, treatments and regimens stopped working as well, or at all. But I still continued to push myself to "keep on keeping on", believing (and being told my family, friends and employers), that I had no other choice.

    The results of continuing to push beyond my abilities have proved more detrimental each time, and have brought me to the place I am today. Unemployed for 2 years (after being fired from a job I held onto tooth and nail for almost eight years), completely unable to work, barely able to do even the most basic things on bad days, and only able to handle "one or 2 things a day", as I put it often, on "good" days.

    Over the years, I have done everything and anything, traditional, alternative, whatever the current thinking and research is at any given time, which we all know has at least some measure of bias, as was mentioned by someone else in Jaimy's thread.

    I have forced myself to exercise past my limits so many times I can't count, against my own better judgement, and against most "knowledgable" advice about CFS. I have used all the recommended meds, except narcotics. Most of them I could not tolerate side effects (such as Elavil, Flexeril, and Effexor), or they just didn't help. I have been in and out of physical therapy of various kinds, and got much better relief (although temporary) from chiropractic, massage and trigger-point therapy. I have tried many herbal and homeopathic regimens. I have used yoga and meditation (and still do, but not as often as I would like.) On and on........

    Now, I take Klonopin .5 mg at bedtime, but am thinking of talking to my doc about upping it, because even with it and Ultram, I am still only sleeping about 3 or 4 hours a night, due to pain and RLS. I have been on Klonopin since January of this year. I also take Claritin for allergies, Zovirax for Herpes Simplex and Zoster, and use Combi-Patch HRT.

    I am also going to talk to my Doc about Guai treatment and antibiotic therapy, based on past improvements 3 different times when I was given the combination of Biaxin and Entex LA for chronic bronchitis, or a sinus infection after a cold or allergy attack, or strep throat. This idea has only come to me within the past 6 months, and I became aware of it through both information on this board, and as a result of gathering my medical records for SSDI, and comparing those times (when I was on Biaxin and Entex) with my diaries.

    I hope to get back to walking at least 10 minutes, three times a week, working up to 10 mins., twice a day, 3 times a week, and more as I build up some stamina. That is my hope. I have been able to do it before........so I hope to do it again.

    I have finally learned to MOSTLY stay within certain limits, as much as life will allow me to, but to not stop all activity, even on my worst days. I have learned that to completely stop moving my body, and to get no exercise at all, is definitely going to make me worse. It always does. So I try to do something, even if it is just simple stretches, and even if I have to do them in bed.

    And there are many other things I do, many of which I have learned here on this board, to ease pain and improve quality of life.......or at least make it through the killer flares, the ones when you don't know how you can be this sick and not die!

    I have accepted that I cannot work.....at least not now, and not for the forseeable future. But even not working has brought on circumstances that force me to do more that I can really handle without making myself more ill. (Like starting the SSDI process......for the 3rd time in a year.) So I have not yet been able to really benefit from "not working". So far, it has just caused a whole new set of problems that make my illness worse. I pray that some of that will ease up soon. But I have basically accepted that I could not continue to work.

    I am completely alone, my "friends" deserted me very shortly after I got fired, most of my family, with 2 exceptions, have deserted me, and the 2 exceptions are threatening to desert me. It is now to the point that they are saying things like, "If you want us to help you financially, you are going to have to get rid of your pets, cause you are spending too much money on them!" I spend, on average, $16 per week on my pets. I have a house full.....1 little mutt, and 5 cats, three of which were dumped on me by strangers last spring, as unweaned kittens with no mother. My animals are the only reason I get up lately, and I need them for reasons that only other pet lovers can really understand, and that non-pet lovers will never get!

    I am so close to losing what little I have, that I can barely breathe most days. And there are many times every day that I think I might not make it through this SSDI process alive, much less with anything left in my life that means anything to me, which at this point is my home, the belongings inside it, my car, (all of which are paid for thankfully), and my precious pets.

    But then, when I think I can't make it one more minute......I try to remind myself that I do have many things to be thankful for, and I am still here, so God must not be done with me yet. The more desperate I feel, the more I pray, not just for help and guidance, but now, more and more in gratitude. Maybe there is a lesson in that, huh? Everything happens for a reason.

    Having said all that..........I still have not given up, in spite of the fact that my family tells me that filing for SSDI says I have thrown up my hands and said "There is no hope!" I am still trying to get better, still looking for something to give me some improvement. Still looking for "it". And still hoping for a miracle cure.

    And I still look to learn from people like you all here on this board, both from those of you who have had improvement, whether a little or a lot, and whether long-lasting or temporary, and from those of you who are still suffering.

    Thanks to this board, despite the many changes and ongoing conflicts (which will always continue occur, since conflict is part of the human condition to begin with), I have gotten support, empathy, and good advice. I have had many "Aha!" moments from reading this board, more times than I can count. I have also had many "GRRRRRRRR" moments. But, for the most part, the "Aha" moments make it worth the other moments.

    And I try to remember to take what I can use, and leave the rest. And I try not to let what others on the board say (or in some cases, don't say) hurt my feelings, or make me feel "less than". I try to remember that when people share what works for them, they are trying to help, even if they are not always perfectly diplomatic or sensitive in the way they express themselves. I have to remember, I have done the same thing when I have been in remissions.

    I do hope and pray, that during my NEXT major remission, that I can share what "it" is that has worked for me, without sounding judgemental when others express that "it" didn't work for them, or if they are not ready to try whatever "it" happens to be, for their own probably very good reasons. I pray that I will not forget what it is like to be this sick, and to be dismissed or blamed.

    And I make a commitment to myself that, as soon as I get through this initial hell of the SSDI process (I am almost there), I will try to be supportive to someone on this board who is hurting and looking for answers, suggestions, or just empathy and validation, or a shoulder to cry on.

    If you made it all the way through my post.....thank you! You deserve a medal for patience, tolerance, and compassion. If you didn't......I can't blame you!

    But there has been a lot of stored-up stuff I wanted to say. And believe me.....this post has not been the whine that it might have been.......even a few days ago. I truly have tried to make this post focus on something other that my current fear surrounding my circumstances. I hope that something I have said will resonate with some of you! Thank you for listening!

    Peace,

    Vickie
    [This Message was Edited on 10/07/2002]
  3. Mikie

    Mikie Moderator

    First, welcome back. Thank you for sharing all this with us. You are a perfect example of someone who keeps on keepin' on (by that I don't mean pushing yourself beyond what your health will permit; I mean not giving up) even when you are not in remission.

    I have been posting about taking responsibility for our own health and trying all kinds of things and I am in one of the worst places I have been since coming here two years ago. However, if I look back to where I was two years ago, I have made progress, very sloooooow progress.

    When some see my posts, they assume I am in a remission or never had a "bad case" of CFS/FMS--Not! I've been sick since late 1990, getting worse and worse until I could no longer work two years ago. I think we can always make choices. We can either continue to fight the good fight or give up and give in to our illnesses. If we do not continue to fight for healing, we have no chance at all of ever getting better unless there is a cure. I'm not willing to wait for that and depend on the medical community; they have been less than helpful as it is.

    Good for you for being a survivor. A therapist once told me that sometimes just surviving is a big deal and something to be proud of. Bless you.

    Love, Mikie
  4. Lanie

    Lanie New Member

    Well, I made it thru all of that! :)

    I must give you recognition for writing all of it and so well said. I would have been lost by paragraph 2, too tired to type anymore.

    I have nothing intelligent to add, still waking up after a long weekend, but I wanted to say good for you and keep your chin up. Someone with your kind of determination cannot fail!
    Best wishes,
    Lanie
  5. roro

    roro New Member

    Your story sounds a LOT like mine. The many infections early in life, the illicit drug use in a lame attempt to self medicate, the trying everything medical and alternative. I am definitely better than I was before, since I have started taking vitamins/supplements, eating right, and exercising. But I still get flares. But they pass, and i am better again.
    I do not blame the people who DO NOT take any alternative things for their predicament. They are not "wallowing in self pity". They are simply misled. I said on the other post, and I hope it didnt offend anyone, that anyone who relies SOLELY on doctors (bad doctors) and still eats junk and puts chemicals like aspartame in their bodies is a fool. I did not mean that in the way that a "fool" is someone who is purposely doing these things to themselves. i meant it in a way that a fool is someone who is misled. Everything the FDA, the medical community, and the gov't tells us about diet, nutrition, and supplements is for the most part WRONG. I realize how difficult it is for someone to go against all that and do all the research and find the answers, and distinguish the beneficial treatments from the "snake-oil". It is NOT the fault of the victim. It is the fault of the way this gov't has turned illness into a business. It is capitalism at its worst. You really cant blame the doctors. The doctors only know what they are "taught" in medical school (its really brainwashed, not "taught".) The drug companies run everything. They give donations to the medical schools. Their motive is to make money, not get people to get better. There are a lot of alternative therapies that WORK for a lot of people in small studies at universities. But if they are not a drug, they will never be an FDA approved treatment because only the big drug companies can afford to do the type of research study required for a treatment to be FDA approved. Some universities have done fabulous studies on alternatives, and these are what I base my knowledge on. I beleive that these alternatives work for SOME people. They are not a cure. But neither is chemotherapy a cure for cancer. Chemotherapy is not a cure. It is a treatment that helps SOME people. It is FDA approved, while some alternatives that may work for a higher percentage of people (maybe 40 instead of 25) are not approved. Why? because the alternatives cannot be patented and cannot make money for the drug companies.
    I also realize that many people cannot afford the alternatives. That may be me someday. I am in the place vicki talked about, desperately holding onto my job because i know if I have to go on disability, I will not be able to afford my alternative treatments, and I will only get worse. And I know that day may come, depsite all the vitamins I take, and despite the diet and exercise. Because i am not cured, I still get flares, and sometimes they are really bad.
    Our only hope is that the insurance companies get bigger than the drug companies and realize that THEY will make more money if people are NOT sick. Then maybe they will have more power over the FDA to change things. Then, when alternative treatments are approved by the FDA, maybe everyone will be able to afford them because they will be FDA approved.
  6. CL

    CL New Member

    I just had to say thank you for your wonderful post. Seemed I was reading my biography and you expressed my own feeling so well. :)
  7. balie

    balie New Member

    Vickie; I wish you all the luck in the world with the SSI and I know exactly how you feel about your animals. They really are the best of friends. Take care Karla
  8. JP

    JP New Member

    Dear Vickie,

    Thank you for your candid, honest and historical post. You have provided an excellent big picture for someone like myself who has just been diagnosed with FM and a few other things that actually measure positive in lab tests.

    I was the reply who talked about bias in research. I happen to have a background in research and I am far too familiar with recognizing what "I see" as the sad corruption of capitalism, researcher's bias and statistically manipulated results for profit, or some type of advancement. I can spot an unsubstantiated claim a mile away. I am also quite fortunate to have about 22 years in alternative practice, a degree in pre medical science and a graduate degree in business. I am quite comfortable reading and understanding health related articles and research. It's nice to be able to see through the smoke with these lovely tools.

    What I got from your post was the message, teach compassion. This is a profound message. The last thing someone with an illness needs is judgement. It has been my experience that my self-esteem has become somewhat fragile as a result of being ill. I protect myself much of the time. I do not share much of what I experience (even with my doctors) with anyone (some on this board) in fear that I will lose more (love, support, etc.). So, thank you for this message.

    I do hope that your world shows you compassion and that you obtain the support that you need for less stress in your life and improved quality.

    Take care,
    Jan

    [This Message was Edited on 10/07/2002]
  9. poodlegirl

    poodlegirl New Member

    Vickie,
    I read all of your post and I must say that if it had been twice as long, I would have still enjoyed reading it! It was very eloquently spoken, sounds like you may have been a journalist or teacher or writer at one time. Anyway, it was a very nice post. I can sympathize with you as I think most of us can who has this (these) disease(s). I must say however, I am glad I do have my family. As hard as it has been to convince people there is something wrong with me, it would be even harder to have no one. But one thing is for sure you hang on to your pets. There is unconditional round the clock love and compassion that money can't buy! I have 4 dogs and they are my life (I also am a dog groomer, at least as long as I can be:) My 10 y/o poodle pulled me thru the healing process after a car wreck in '96 (one thing that I think triggered my FM and other problems). She licked my tears from my eyes when I cried. She was a faithful and loyal friend and still is. So you hold on to those babies! We will be here for you!
  10. lilwren

    lilwren New Member

    That has to be the most courageous thing I've ever seen! What an incredible post! Thank you for sharing that. You are so brave! I wonder everyday if I should keep on keeping on (as Mikie says) and I never find the answer. I just keep waking up everyday and going on with life. I wish for all of us they would find something to cure this, or at least help us have a better quality of life!!!!

    I have two doggies that are my babies. Don't let anyone take your pets away! Ask your family how they would feel if you took their children away! They are always there when everyone else has deserted you - they need you and love you. Their love is very important to us!!!

    Good luck with your SS, and thanks again for sharing so much.

    Sharon L
  11. CL

    CL New Member

  12. selma

    selma New Member

    for sharing and caring about others.

    You know that you will go into remission some day.

    We are all here for you as you know.

    Want to write more,but can't right now.

    You are sweet and precious keep us up to date when you can.

    Love, Selma
  13. missvickielynn

    missvickielynn New Member

    I should have learned my lesson by now. When I posted this topic the other day, I composed it on WordPad before I got online, then copied and pasted it to the board. It took me nearly 4 hours to complete the post, counting several rest periods and a meal break.

    I didn't get back to the board till tonight (this morning). I couldn't sleep, as usual, especially after some things that happened over the last 2 days. So I came on to the board and spent nearly 2 hours working on individual replies to thank all of you who responded to me.
    I also did quite a bit of venting about the things that have happened over the last two days. But, instead of composing it offline like I did the other day, I just logged in on the board, pulled up the message, clicked "reply" and started typing.

    Obviously I took too long, cause when I clicked the submit button, not only was my new post not there, but it just opened up the sign-in page, so I had even been logged off while I was posting.

    This has happened before, which is why posted offline the other day. You would think I would learn.

    So, for now, I will just say a belated thank you to all who replied. All of your replies touched me in specific ways, and the encouragement and kind things you said to me gave me the first feeling of validation and understanding I have had in a long, long time. I am so grateful to you all for not only taking the time to read my post, but to respond with such love.

    I will try to re-do (offline) the post that I lost this morning, but it will probably be over the weekend, if then. You all know about making promises and plans for tomorrow. I am tenatious.......but I am too wiped out to start all over on it right now. For now, I will leave you with somthing that I had included in the post I lost. I found it on a website for "survivors"....(let's just leave it at that.) It is so appropriate not only specifically to how I am feeling at the moment, but it is appropriate to all of our situations in dealing with any chronic invisible illness. Here it is:


    "We must be fundamentally emotionally strong or we would not have stayed alive this long.

    Like all living creatures, we can heal from our injuries and our suffering.

    If we have a healthy environment, healthy behaviors, healthy relationships, we will recover.

    We need to identify our histories of trauma, abuse, neglect, grief, and loss.

    We need to overcome denial on all of our addictive behaviors.

    We need to provide ourselves with good health care.

    We need a safe place where we can be who we are, and be welcome.

    We need quiet, respectful attention as we tell our stories in as much detail and as many times as we need to.

    If we get these things we will not just stay alive, but we will have good lives. Lives that are free of the curse of depression and suicidal ideation, lives that are productive and creative, lives that are filled with friendship and love."

    I wish you all peace and a pain-free day!

    Vickie



    [This Message was Edited on 10/11/2002]

[ advertisement ]