Re: (only)Wise Words spoken here

[Guest guest]

Wow Peg,

what powerful verbage you have. I can surely relate. I must say tho that your well defined words of wisdom will surely be looked upon and then the ducs willl say oh yeah hmmm naybe we need to look into this. Give em 10 years cause that is how far behind they are and most of us dont have ten years but you know we do have the will to fight - and by golly i'm gonna fight it to the very end and yes i am angry - mostly at me for listening to garbage from ducs for 10 yrs - ok thanks for lettin me vent and thank you peg for the eloquent words.....

Sam

a message dated 6/29/2005 6:44:35 PM Central Standard Time, lanelle@... writes:

Before I became ill I was a wife, mother of three and had a career that required long hours. I quickly learned that I wasn't going to make it unless I cut out the frills. That included being indecisive and learning to say what I mean't the first time. I think that is why I depend upon this group as I do. I don't have time to play "getting well" I'm in lock down, stealth mode now, no time to "practice" medicine. I need the real deal. I know that of the few posts I read today, the point was the best method to attaining this illusive wellness. But what I saw was decisive , independent thinkers who are taking responsibility for their lives and making no apologies. I heard such pride even in the disappointments, the core objective was not missed. The core objective was to extend life and I can see where that goal has been attained, which ever way was chosen to get there. I go through brief periods where I feel pressed against the wall, all alone, with no dependable source to truly assist me in major decisions. I don't usually feel panic, but these are close cousins inasmuch as I feel disjointed, fragmented in not having clear cut objective. Doing a little of this and a little of that, but not a lot of anything. Then I get frustrated that I've just been spinning my wheels, never making any real headway. I don't know if I instinctively knew that my support system would be weak and that the ducs wouldn't be much help, but early on I set up ways to trigger myself into not getting stuck down in the dumps very long. So, when these frustrating days hit, I have ways of reminding myself of my true objective. And although I may not be healthy, I am glad that I can still look in the mirror and know I am still alive. I've never been one much for compromise and it seems that is about all I do these days. I'm learning. So no matter which method of treatment each person has chosen, I can hear the true spirit in your words and know that the core objective is still in play. You are still alive. I think it would be safe to say that there is a lot of pride in the choices that we have made. Whether they will prove to be right or wrong, we made them under frightful conditions and we made them alone, without the benefit of years of medical school. This is courage that most doctors will never know. I wish that there was a way to attain my health without aggresive pharmaceuticals, but I fear there is not. We have paid a high price for health care and more times than not and are forced to accept less than acceptable service. I have had to bit my tongue on more occasions than I care to count, to tolerate rudeness, and a complacency that could be the ruin of men much stronger than we are given credit for. Even though we place our trust in supportive i.e. supplemental measure sometimes these supplements are more supportive to the toilet than to our bodies with my absorption rate at least. This week I have three doctor's appointments and it has taken its toll. I'm at a regrouping point on this ID duc as he is clearly making me jump through hoops because he is ticked off because the pain doctor sided with me instead of him. Don't know if I mentioned that in 2000 I was dx with anemia and it took me 18 months to find a doctor who was willing to prescribe Procrit. I took the six shots in the spring of 2002 and enjoyed plump happy red blood cells up until the MRSA this past winter. Blood tests now show the anemia is back, now in the lack of iron absorption and not folic acid. But this ID duc is insisting on a colonoscopy and whole GI song and dance. I see it as just another tatic to avoid aggressively looking for the offending pathogens and appropriately killing them. Or in other words pointing the finger elsewhere instead of practicing medicine in his field, infectious diseases.This week I'm finally scheduled for IVIG after presenting low IgG for the past six months. I think if I would do one thing over it would be not to waste precious time on these various avoidance tatics by some ducs. To set a time limit. Put up or shut up.... Their intimidation and manipulation only served to the denial of my own intuition.. Medicine, this is the only field I know where results are not related to pay scale. I wish there was a national registry where all doctors would be listed and all patients could post their experiences. I don't mean to sound angry, because I am not. I am embarrassed for them and at times even ashamed of them. I know now that each of us must follow our own instinct. That is why our body presents these symptoms, to tell us where we need help. I remember one time sitting in a doctor's office thinking "why am I having to live this awful existence, the human spirit always wanting to believe that there is still more meaningful life ahead. But it hit me. These doctor's probably believe that the only reason we are ill is just so they can excel to new and glorious fame. I shuddered as I thought, "Could it be that I did not live to be the lead in my own life story, but instead my entire existence has been to only be a bit player, a 'one line' walk-on in the fame and fortune story of this doctor. " It was just to sickening to even consider it. Right now, I'm just truly sorry that the very people who need to understand what is being said here are the doctors. They are the ones who really need to know how "INadequately" their lack of care is affecting their patients... Yes, I know that with the little energy we have, it is better spent on the positive things we can do for ourselves instead of a pissing contest with some duc. It is a fight that we cannot win....probably a fight that many will have to die for. The sin is that it doesn't have to be this way. I think it will have to be advocacy from the public that is NOT sick that will have to take place. Q Public is not ready to hear, much less accept that possibly an entire generation will be forfeited just because of the absurd hoops we must maneuver. That it takes years to get diagnosed and then still we are not treated with

[Guest guest]

You got it right Peg.

And you have the right kind of depth of attitude and understanding

to get this job done, because in the end - everyone on this

list will have their OWN selves to credit for their improvements

because we ARE the ones that have been thru the medical

mill already - and realize the medical profession is *woefully*

inadequate and truly UNinterested in tailoring treatments the way

they need to be for the individuals in a group like this.

Barb

>

> Before I became ill I was a wife, mother of three and had a career

> that required long hours. I quickly learned that I wasn't going to

> make it unless I cut out the frills. That included being indecisive

> and learning to say what I mean't the first time. I think that is

> why I depend upon this group as I do. I don't have time to

> play " getting well " I'm in lock down, stealth mode now, no time

> to " practice " medicine. I need the real deal.

>

> I know that of the few posts I read today, the point was the best

> method to attaining this illusive wellness. But what I saw was

> decisive , independent thinkers who are taking responsibility for

> their lives and making no apologies. I heard such pride even in the

> disappointments, the core objective was not missed. The core

> objective was to extend life and I can see where that goal has been

> attained, which ever way was chosen to get there. I go through

brief

> periods where I feel pressed against the wall, all alone, with no

> dependable source to truly assist me in major decisions. I don't

> usually feel panic, but these are close cousins inasmuch as I feel

> disjointed, fragmented in not having clear cut objective. Doing a

> little of this and a little of that, but not a lot of anything.

Then

> I get frustrated that I've just been spinning my wheels, never

making

> any real headway.

> I don't know if I instinctively knew that my support system would

be

> weak and that the ducs wouldn't be much help, but early on I set up

> ways to trigger myself into not getting stuck down in the dumps

very

> long. So, when these frustrating days hit, I have ways of reminding

> myself of my true objective. And although I may not be healthy, I

am

> glad that I can still look in the mirror and know I am still alive.

> I've never been one much for compromise and it seems that is about

> all I do these days. I'm learning.

> So no matter which method of treatment each person has chosen, I

can

> hear the true spirit in your words and know that the core

objective

> is still in play. You are still alive. I think it would be safe to

> say that there is a lot of pride in the choices that we have made.

> Whether they will prove to be right or wrong, we made them under

> frightful conditions and we made them alone, without the benefit of

> years of medical school. This is courage that most doctors will

never

> know. I wish that there was a way to attain my health without

> aggresive pharmaceuticals, but I fear there is not. We have paid a

> high price for health care and more times than not and are forced

to

> accept less than acceptable service. I have had to bit my tongue

on

> more occasions than I care to count, to tolerate rudeness, and a

> complacency that could be the ruin of men much stronger than we are

> given credit for. Even though we place our trust in supportive i.e.

> supplemental measure sometimes these supplements are more

supportive

> to the toilet than to our bodies with my absorption rate at

least.

>

> This week I have three doctor's appointments and it has taken its

> toll. I'm at a regrouping point on this ID duc as he is clearly

> making me jump through hoops because he is ticked off because the

> pain doctor sided with me instead of him.

> Don't know if I mentioned that in 2000 I was dx with anemia and it

> took me 18 months to find a doctor who was willing to prescribe

> Procrit. I took the six shots in the spring of 2002 and enjoyed

> plump happy red blood cells up until the MRSA this past winter.

Blood

> tests now show the anemia is back, now in the lack of iron

absorption

> and not folic acid. But this ID duc is insisting on a colonoscopy

and

> whole GI song and dance. I see it as just another tatic to avoid

> aggressively looking for the offending pathogens and appropriately

> killing them. Or in other words pointing the finger elsewhere

> instead of practicing medicine in his field, infectious diseases.

> This week I'm finally scheduled for IVIG after presenting low IgG

for

> the past six months. I think if I would do one thing over it would

be

> not to waste precious time on these various avoidance tatics by

some

> ducs. To set a time limit. Put up or shut up.... Their

intimidation

> and manipulation only served to the denial of my own intuition..

>

> Medicine, this is the only field I know where results are not

related

> to pay scale. I wish there was a national registry where all

doctors

> would be listed and all patients could post their experiences. I

> don't mean to sound angry, because I am not. I am embarrassed for

> them and at times even ashamed of them. I know now that each of us

> must follow our own instinct. That is why our body presents these

> symptoms, to tell us where we need help.

>

> I remember one time sitting in a doctor's office thinking " why am I

> having to live this awful existence, the human spirit always

wanting

> to believe that there is still more meaningful life ahead.

> But it hit me. These doctor's probably believe that the only reason

> we are ill is just so they can excel to new and glorious fame. I

> shuddered as I thought,

> " Could it be that I did not live to be the lead in my own life

story,

> but instead my entire existence has been to only be a bit player,

> a 'one line' walk-on in the fame and fortune story of this

> doctor. " It was just to sickening to even consider it.

>

> Right now, I'm just truly sorry that the very people who need to

> understand what is being said here are the doctors. They are the

ones

> who really need to know how " INadequately " their lack of care is

> affecting their patients... Yes, I know that with the little energy

> we have, it is better spent on the positive things we can do for

> ourselves instead of a pissing contest with some duc. It is a fight

> that we cannot win....probably a fight that many will have to die

> for. The sin is that it doesn't have to be this way.

> I think it will have to be advocacy from the public that is NOT

sick

> that will have to take place. Q Public is not ready to hear,

> much less accept that possibly an entire generation will be

forfeited

> just because of the absurd hoops we must maneuver. That it takes

> years to get diagnosed and then still we are not treated with

> aggressive enough protocols. They don't want to believe how easily

> they could be in our shoes. It is the complacency that is our

enemy.

> Peg

[Guest guest]

Bravo, Peg! I agree completely.

[infections] (only)Wise Words spoken here

Before I became ill I was a wife, mother of three and had a career that required long hours. I quickly learned that I wasn't going to make it unless I cut out the frills. That included being indecisive and learning to say what I mean't the first time. I think that is why I depend upon this group as I do. I don't have time to play "getting well" I'm in lock down, stealth mode now, no time to "practice" medicine. I need the real deal. I know that of the few posts I read today, the point was the best method to attaining this illusive wellness. But what I saw was decisive , independent thinkers who are taking responsibility for their lives and making no apologies. I heard such pride even in the disappointments, the core objective was not missed. The core objective was to extend life and I can see where that goal has been attained, which ever way was chosen to get there. I go through brief periods where I feel pressed against the wall, all alone, with no dependable source to truly assist me in major decisions. I don't usually feel panic, but these are close cousins inasmuch as I feel disjointed, fragmented in not having clear cut objective. Doing a little of this and a little of that, but not a lot of anything. Then I get frustrated that I've just been spinning my wheels, never making any real headway. I don't know if I instinctively knew that my support system would be weak and that the ducs wouldn't be much help, but early on I set up ways to trigger myself into not getting stuck down in the dumps very long. So, when these frustrating days hit, I have ways of reminding myself of my true objective. And although I may not be healthy, I am glad that I can still look in the mirror and know I am still alive. I've never been one much for compromise and it seems that is about all I do these days. I'm learning. So no matter which method of treatment each person has chosen, I can hear the true spirit in your words and know that the core objective is still in play. You are still alive. I think it would be safe to say that there is a lot of pride in the choices that we have made. Whether they will prove to be right or wrong, we made them under frightful conditions and we made them alone, without the benefit of years of medical school. This is courage that most doctors will never know. I wish that there was a way to attain my health without aggresive pharmaceuticals, but I fear there is not. We have paid a high price for health care and more times than not and are forced to accept less than acceptable service. I have had to bit my tongue on more occasions than I care to count, to tolerate rudeness, and a complacency that could be the ruin of men much stronger than we are given credit for. Even though we place our trust in supportive i.e. supplemental measure sometimes these supplements are more supportive to the toilet than to our bodies with my absorption rate at least. This week I have three doctor's appointments and it has taken its toll. I'm at a regrouping point on this ID duc as he is clearly making me jump through hoops because he is ticked off because the pain doctor sided with me instead of him. Don't know if I mentioned that in 2000 I was dx with anemia and it took me 18 months to find a doctor who was willing to prescribe Procrit. I took the six shots in the spring of 2002 and enjoyed plump happy red blood cells up until the MRSA this past winter. Blood tests now show the anemia is back, now in the lack of iron absorption and not folic acid. But this ID duc is insisting on a colonoscopy and whole GI song and dance. I see it as just another tatic to avoid aggressively looking for the offending pathogens and appropriately killing them. Or in other words pointing the finger elsewhere instead of practicing medicine in his field, infectious diseases.This week I'm finally scheduled for IVIG after presenting low IgG for the past six months. I think if I would do one thing over it would be not to waste precious time on these various avoidance tatics by some ducs. To set a time limit. Put up or shut up.... Their intimidation and manipulation only served to the denial of my own intuition.. Medicine, this is the only field I know where results are not related to pay scale. I wish there was a national registry where all doctors would be listed and all patients could post their experiences. I don't mean to sound angry, because I am not. I am embarrassed for them and at times even ashamed of them. I know now that each of us must follow our own instinct. That is why our body presents these symptoms, to tell us where we need help. I remember one time sitting in a doctor's office thinking "why am I having to live this awful existence, the human spirit always wanting to believe that there is still more meaningful life ahead. But it hit me. These doctor's probably believe that the only reason we are ill is just so they can excel to new and glorious fame. I shuddered as I thought, "Could it be that I did not live to be the lead in my own life story, but instead my entire existence has been to only be a bit player, a 'one line' walk-on in the fame and fortune story of this doctor. " It was just to sickening to even consider it. Right now, I'm just truly sorry that the very people who need to understand what is being said here are the doctors. They are the ones who really need to know how "INadequately" their lack of care is affecting their patients... Yes, I know that with the little energy we have, it is better spent on the positive things we can do for ourselves instead of a pissing contest with some duc. It is a fight that we cannot win....probably a fight that many will have to die for. The sin is that it doesn't have to be this way. I think it will have to be advocacy from the public that is NOT sick that will have to take place. Q Public is not ready to hear, much less accept that possibly an entire generation will be forfeited just because of the absurd hoops we must maneuver. That it takes years to get diagnosed and then still we are not treated with aggressive enough protocols. They don't want to believe how easily they could be in our shoes. It is the complacency that is our enemy.Peg