Re: none of us getting anywhere fast from kim

[Guest guest]

Kim,

Wow! You have put into words what my heart has been trying to say for weeks.

It is the responsibility of our MD's to step up and take charge--and educate us and themself. Those that are stupified by what they see- and then don't have the courage due to EGO and SELF PRIDE--have missed the boat. (This means they do belong on Shit Creek.--Not taking care of us.)

As for the efforts that you've put forth for the "selfish one" -- some may choose to never "get it."

Kim, do tkae care. I know that you are a world away, and that the care you are getting is so not what you need. My love to you.

Tracie

NS Co-owner/moderator

[Guest guest]

My dear, dear, Kim-------thank you so much for writing this! You have

really hit home and told it like it is! I know this is straight from

your heart and it is so very well said. I am sure many will agree with

your thoughts. I just wish everyone in the world could read it -- Doctors

and patients alike.

It is good to see you post and I know you are not well enough to do so. I

still keep you in my thoughts and prayers each and every day. I wish you

were here in the states but I know you cannot be........

Wishing you all the best luck in getting good treatment and you hang in

there......we will win this fight against the terrible Sarc Monster if we

all keep trying! Like you said, it is horrible that someone has the nerve

to wish he could get struck down in order to get disability.........and

here we are all fighting to stay alive.

Keep on fighting, dear.......we love you.

Hugs and prayers,

Darlene

NS Co-Owner/Moderator

[Guest guest]

....all that Marla said.....and my prayers are with you, too. hang in there, girl. hugs S.marla wrote: Kim, It's good to hear your voice if you know what I mean. I'm sorry you've been in the hospital so long, were they able to help you? I've been praying for you, thinking about you every day, and praying you were getting help. You really on it when you said i promise you if you start thinking of others and showing kindness your problems will disappear This is so very true, I find that if I pray for other's, God still blesses me. And if I do for others, then I'm not sitting around thinking about me. Great Advice. Now my

dear, really how are you? I take it the kids made it home for Christmas? Will they come back for spring break? We missed you girl, now take care of you, and I will keep you in my prayers, Hugs and blessings, Marla I've been home from the hospital the past three days, was in for 12 days before insisting to come home. As I listen to all the stories of Drs trying to decide if there is active sarc going on or indeed sarc at all I am dumbfounded at how so much progress can have been made over the past five years in the diagnosis and understanding of this disease and yet so little progress be made in actual patient care. I do not understand. I am deeply saddened and disheartened for each and everyone of us. Drs hold so much power in their hands and words, in thier demeanor and bedside manner, it is a shame that so many misuse it. When they take an oath to help patients and agree to take on a new patient, they should do so, if htey do not want to take the time to learn about the disease a particular patient has or do all they can to help a given patient they should just come clean and say so, give them a chance to move on and find a dr willing to do all they can for them. or to at least treat them with dignity and kindness, or answer their questions. patients are people right? we are capable of understanding that not all patient - drs are good fits, not every dr wants to take on a challenging case, we understand. but its kinder to say so, hey my load is really full, im kind of in a comfortable spot with all my regular easy going MS patients and i dont want to rock the boat right

now. wouldnt that be fine with most of you? they hold power in their ability to look up the newest research and treatments and information and pass that on to their patients or not.... that is POWER...if i have ever heard of it... and to misuse it the way some do, is no less than withholding treatment from a dying patient. just because you didnt know the treatment was there, is no excuse. you killed the patient if you didnt keep up on your education and you were a dr. .... continuaing education was part of your job and responsibility to your patients. and to those who become upset when their patients bring research to them or question them about reports and results, or soemthing that they have read, we know you are only upset because you are feeling your inadequacies as a physician , your guilt at not doing your job fully and

completely. you can hide behind comments to your coleagues that patients think they know everything. but thats not true, we are simply asking you to explain something most the time, things that you cant explain because you are not up on the research, which is okay, we dont expect you to be up on everything all the time, but when you dont have the answers, that pertain to one of your patients directly, dont you think you owe it to them to go find them?? or point them in the direction of someone who does?? insteead of sticking your heads in antiquated answers and refusing to acknowledge that the information your patient has might, just might have came from some legitimate source? my heart goes out to each of you everyday as you gather your strength at teh beginning of each day to fight this fight, as you muster the courage to face yet another dr or go back to the same ones over and over again. and for the ones wishing their illness would get worse and they would be stricken with seizures and tias and whatever else they are hoping would strike them down, i simply have no words. for those in this group woh struggle with such horrible health issues on a dialy basis such comments are a slap in the face and an insult. so very disrespectful. imagine that i have been and others in this group struggling and suffering many seizures daily and trying to fight my way through that, have suffered tias and been laying in a hospital bed very alone, to come back here and read someone writing how they wish tehse very horrid things would happen to them. its like looking down at someone having a stroke and saying oh damn it why isnt that happening to me instead..... then i could collect disability!! why do you have all the luck!!!! START COUNTING YOUR FREAKING BLESSINGS!!!! I wont say anymore than

that, except this by the way, after all the things that i have done for a particular person, calling half way around the world to make arrangements for help with a local church that was never taken up on, sending medications, etc, that person hasnt even said hey how are you and i hope you are okay through all this..... just i wish what is happening to you would happen to me so i can collect disability! good grief! i promise you if you start thinking of others and showing kindness your problems will disappear.............. sorry to go off a bit.....ive just had it.....from every direction , im so very tired, god bless you all, Kim NS Moderator -- The Lord bless you and keep you: The Lord make his face to shine upon you, and be gracious to you: The Lord lift up his countenance upon you and give you peace. Numbers 6:24-26 begin:vcardfn:Marla Bramern:;Marla tel;work:tel;home:version:2.1end:vcard

Brings words and photos together (easily) with PhotoMail - it's free and works with Yahoo! Mail.

[Guest guest]

Kim,

It's good to hear your voice if you know what I mean. I'm sorry you've

been in the hospital so long, were they able to help you? I've been

praying for you, thinking about you every day, and praying you were

getting help.

You really on it when you said i promise

you if you start thinking of others and showing kindness your problems

will disappear This is so very true, I find that

if I pray for other's, God still blesses me. And if I do for others,

then I'm not sitting around thinking about me. Great Advice.

Now my dear, really how are you?

I take it the kids made it home for Christmas? Will they come back for

spring break?

We missed you girl, now take care of you, and I will keep you in my

prayers,

Hugs and blessings,

Marla

I've been home from the hospital the past three days, was in for

12 days before insisting to come home. As I listen to all the stories

of Drs trying to decide if there is active sarc going on or indeed sarc

at all I am dumbfounded at how so much progress can have been made over

the past five years in the diagnosis and understanding of this disease

and yet so little progress be made in actual patient care. I do not

understand. I am deeply saddened and disheartened for each and

everyone of us.

Drs hold so much power in their hands and words, in thier

demeanor and bedside manner, it is a shame that so many misuse it.

When they take an oath to help patients and agree to take on a new

patient, they should do so, if htey do not want to take the time to

learn about the disease a particular patient has or do all they can to

help a given patient they should just come clean and say so, give them

a chance to move on and find a dr willing to do all they can for them.

or to at least treat them with dignity and kindness, or answer their

questions. patients are people right? we are capable of understanding

that not all patient - drs are good fits, not every dr wants to take

on a challenging case, we understand. but its kinder to say so, hey

my load is really full, im kind of in a comfortable spot with all my

regular easy going MS patients and i dont want to rock the boat right

now. wouldnt that be fine with most of you?

they hold power in their ability to look up the newest research

and treatments and information and pass that on to their patients or

not.... that is POWER...if i have ever heard of it... and to misuse it

the way some do, is no less than withholding treatment from a dying

patient. just because you didnt know the treatment was there, is no

excuse. you killed the patient if you didnt keep up on your education

and you were a dr. .... continuaing education was part of your job

and responsibility to your patients.

and to those who become upset when their patients bring

research to them or question them about reports and results, or

soemthing that they have read, we know you are only upset because you

are feeling your inadequacies as a physician , your guilt at not doing

your job fully and completely. you can hide behind comments to your

coleagues that patients think they know everything. but thats not

true, we are simply asking you to explain something most the time,

things that you cant explain because you are not up on the research,

which is okay, we dont expect you to be up on everything all the time,

but when you dont have the answers, that pertain to one of your

patients directly, dont you think you owe it to them to go find them??

or point them in the direction of someone who does?? insteead of

sticking your heads in antiquated answers and refusing to acknowledge

that the information your patient has might, just might have came from

some legitimate source?

my heart goes out to each of you everyday as you gather your

strength at teh beginning of each day to fight this fight, as you

muster the courage to face yet another dr or go back to the same ones

over and over again.

and for the ones wishing their illness would get worse and they

would be stricken with seizures and tias and whatever else they are

hoping would strike them down, i simply have no words. for those in

this group woh struggle with such horrible health issues on a dialy

basis such comments are a slap in the face and an insult. so very

disrespectful. imagine that i have been and others in this group

struggling and suffering many seizures daily and trying to fight my way

through that, have suffered tias and been laying in a hospital bed very

alone, to come back here and read someone writing how they wish tehse

very horrid things would happen to them. its like looking down at

someone having a stroke and saying oh damn it why isnt that happening

to me instead..... then i could collect disability!! why do you have

all the luck!!!! START COUNTING YOUR FREAKING BLESSINGS!!!! I wont

say anymore than that, except this

by the way, after all the things that i have done for a

particular person, calling half way around the world to make

arrangements for help with a local church that was never taken up on,

sending medications, etc, that person hasnt even said hey how are

you and i hope you are okay through all this..... just i wish what is

happening to you would happen to me so i can collect disability!

good grief! i promise you if you start thinking of others and

showing kindness your problems will disappear..............

sorry to go off a bit.....ive just had it.....from every

direction , im so very tired,

god bless you all,

Kim

NS Moderator

-- The Lord bless you and keep you:

The Lord make his face to shine upon you, and be gracious to you:

The Lord lift up his countenance upon you and give you peace.

Numbers 6:24-26

Attachment: vcard [not shown]

[Guest guest]

Kim,

I am so glad to know you are home. I will pray for you and just know that I always have you and your family are in my thoughts. I will write more later when I feel like talking.

Terri G. >> I've been home from the hospital the past three days, was in for 12 days > before insisting to come home. As I listen to all the stories of Drs trying to > decide if there is active sarc going on or indeed sarc at all I am > dumbfounded at how so much progress can have been made over the past five years in the > diagnosis and understanding of this disease and yet so little progress be > made in actual patient care. I do not understand. I am deeply saddened and > disheartened for each and everyone of us. > > Drs hold so much power in their hands and words, in thier demeanor and > bedside manner, it is a shame that so many misuse it. When they take an oath to > help patients and agree to take on a new patient, they should do so, if htey > do not want to take the time to learn about the disease a particular patient > has or do all they can to help a given patient they should just come clean and > say so, give them a chance to move on and find a dr willing to do all they > can for them. or to at least treat them with dignity and kindness, or answer > their questions. patients are people right? we are capable of > understanding that not all patient - drs are good fits, not every dr wants to take on a > challenging case, we understand. but its kinder to say so, hey my load is > really full, im kind of in a comfortable spot with all my regular easy going > MS patients and i dont want to rock the boat right now. wouldnt that be fine > with most of you? > > they hold power in their ability to look up the newest research and > treatments and information and pass that on to their patients or not.... that is > POWER...if i have ever heard of it... and to misuse it the way some do, is no > less than withholding treatment from a dying patient. just because you didnt > know the treatment was there, is no excuse. you killed the patient if you > didnt keep up on your education and you were a dr. .... continuaing education > was part of your job and responsibility to your patients. > > and to those who become upset when their patients bring research to them or > question them about reports and results, or soemthing that they have read, > we know you are only upset because you are feeling your inadequacies as a > physician , your guilt at not doing your job fully and completely. you can hide > behind comments to your coleagues that patients think they know everything. > but thats not true, we are simply asking you to explain something most the > time, things that you cant explain because you are not up on the research, > which is okay, we dont expect you to be up on everything all the time, but when > you dont have the answers, that pertain to one of your patients directly, > dont you think you owe it to them to go find them?? or point them in the > direction of someone who does?? insteead of sticking your heads in antiquated > answers and refusing to acknowledge that the information your patient has might, > just might have came from some legitimate source? > > my heart goes out to each of you everyday as you gather your strength at teh > beginning of each day to fight this fight, as you muster the courage to face > yet another dr or go back to the same ones over and over again. > > and for the ones wishing their illness would get worse and they would be > stricken with seizures and tias and whatever else they are hoping would strike > them down, i simply have no words. for those in this group woh struggle with > such horrible health issues on a dialy basis such comments are a slap in the > face and an insult. so very disrespectful. imagine that i have been and > others in this group struggling and suffering many seizures daily and trying to > fight my way through that, have suffered tias and been laying in a hospital > bed very alone, to come back here and read someone writing how they wish > tehse very horrid things would happen to them. its like looking down at > someone having a stroke and saying oh damn it why isnt that happening to me > instead..... then i could collect disability!! why do you have all the luck!!!! > START COUNTING YOUR FREAKING BLESSINGS!!!! I wont say anymore than that, > except this> > by the way, after all the things that i have done for a particular person, > calling half way around the world to make arrangements for help with a local > church that was never taken up on, sending medications, etc, that person > hasnt even said hey how are you and i hope you are okay through all > this..... just i wish what is happening to you would happen to me so i can collect > disability!> > good grief! i promise you if you start thinking of others and showing > kindness your problems will disappear..............> > sorry to go off a bit.....ive just had it.....from every direction , im so > very tired, > > god bless you all, > Kim> NS Moderator>

[Guest guest]

Kim

Thanks for putting everything into words. You're in my prayers.

grannylunatic@...

__________________________________________________

[Guest guest]

Kim

Thanks for putting everything into words. You're in my prayers.

grannylunatic@...

__________________________________________________

[Guest guest]

Kim

Thanks for putting everything into words. You're in my prayers.

grannylunatic@...

__________________________________________________

[Guest guest]

Kim, I was thinking of you again this morning and praying that one or another of your doctors would have an epiphany about your treatment and just 'know' what to do. You are very right about doctor's pride. Too bad they can't think more of the patient than their own fragile ego. I pray you are resting and de-stressing. Please don't worry about those who are upsetting you. They will get by. Just take care of yourself for now. Let other people handle the stressing things. I am sending healing thoughts your way and praying for good news to come soon. hugs S.NeuroSarcoid66@... wrote: I've been home from the hospital the past three days, was in for 12 days before insisting to come home. As I listen to all the stories of Drs trying to decide if there is active sarc going on or indeed sarc at all I am dumbfounded at how so much progress can have been made over the past five years in the diagnosis and understanding of this disease and yet so little progress be made in actual patient care. I do not understand. I am deeply saddened and disheartened for each and everyone of us. Drs hold so much power in their hands and words, in thier demeanor and bedside manner, it is a shame that so many misuse it. When they take an oath to help patients and agree to take on a new patient, they should do so, if htey do not want to take the time to learn about the disease a particular patient has or do all they can to help a given patient they should just come clean and

say so, give them a chance to move on and find a dr willing to do all they can for them. or to at least treat them with dignity and kindness, or answer their questions. patients are people right? we are capable of understanding that not all patient - drs are good fits, not every dr wants to take on a challenging case, we understand. but its kinder to say so, hey my load is really full, im kind of in a comfortable spot with all my regular easy going MS patients and i dont want to rock the boat right now. wouldnt that be fine with most of you? they hold power in their ability to look up the newest research and treatments and information and pass that on to their patients or not.... that is POWER...if i have ever heard of it... and to misuse it the way some do, is no less than withholding treatment from a dying patient. just because you didnt know the treatment was

there, is no excuse. you killed the patient if you didnt keep up on your education and you were a dr. .... continuaing education was part of your job and responsibility to your patients. and to those who become upset when their patients bring research to them or question them about reports and results, or soemthing that they have read, we know you are only upset because you are feeling your inadequacies as a physician , your guilt at not doing your job fully and completely. you can hide behind comments to your coleagues that patients think they know everything. but thats not true, we are simply asking you to explain something most the time, things that you cant explain because you are not up on the research, which is okay, we dont expect you to be up on everything all the time, but when you dont have the answers, that pertain to one of your patients

directly, dont you think you owe it to them to go find them?? or point them in the direction of someone who does?? insteead of sticking your heads in antiquated answers and refusing to acknowledge that the information your patient has might, just might have came from some legitimate source? my heart goes out to each of you everyday as you gather your strength at teh beginning of each day to fight this fight, as you muster the courage to face yet another dr or go back to the same ones over and over again. and for the ones wishing their illness would get worse and they would be stricken with seizures and tias and whatever else they are hoping would strike them down, i simply have no words. for those in this group woh struggle with such horrible health issues on a dialy basis such comments are a slap in the face and an insult. so very disrespectful. imagine that i have been and

others in this group struggling and suffering many seizures daily and trying to fight my way through that, have suffered tias and been laying in a hospital bed very alone, to come back here and read someone writing how they wish tehse very horrid things would happen to them. its like looking down at someone having a stroke and saying oh damn it why isnt that happening to me instead..... then i could collect disability!! why do you have all the luck!!!! START COUNTING YOUR FREAKING BLESSINGS!!!! I wont say anymore than that, except this by the way, after all the things that i have done for a particular person, calling half way around the world to make arrangements for help with a local church that was never taken up on, sending medications, etc, that person hasnt even said hey how are you and i hope you are okay through all this..... just i wish what is

happening to you would happen to me so i can collect disability! good grief! i promise you if you start thinking of others and showing kindness your problems will disappear.............. sorry to go off a bit.....ive just had it.....from every direction , im so very tired, god bless you all, Kim NS Moderator

Yahoo! Mail Use Photomail to share photos without annoying attachments.

[Guest guest]

Darlene

Thanks for writing, i hoipe you are well and wish I was able to write more. God willing one of these days I am goign to wake up and have this really good day with a perfectly clear head, be able to sit up straight and well I can visualize the entire day. It will happen I can picture it.

You are so right about the post coming from my heart, not just for me, but for all of us. I wont rewrite all I am feeling here, the feelings are so deep seated. I just dont understand, sometimes I spend all day thinking about how much I dont understand it all. How it doesnt make sense at all. How educated drs are and why they would take the actions and/or lack of actions they do when the information is there in front of them if htey just look for it. Being unable to change the situation makes me fel so helpless and suppressed , so hopeless, not for myself...that is bad eough..but what of everyone else, wtih not only this disease but there are so many others im sure that the same thing is oging on. who are suffering and so ill, and being treated the same way.

when i am well enough i will tell you what exactly all has happened here ovr the past weeks and somehow it just is surreal.

im just so exhausted. to all of you here ive not gone off to selfish land all these months now, i think of you always.

darlene i do hope you are alright and your husband as well, yoiu too are in my thoughts daily

take care

kim

[Guest guest]

Dear S - thank you for your prayers and kindness, hope you are doing well and know you too are in my thoughts. im fighting hard here and not so hot, but hanging in.... what else to do?

love to you, take care

kim

ns moderator

[Guest guest]

dear terri, i m not up on all the psots, but from this one i think things are maybe upside down a little for you. i hope not too bad. i will do my best to follow up the posts, you are in my thoughts and prayers, hang in there. thanks for writing me and giving support...it means a lot.

im wearing out and going to sleep now will write again later, take care

kim

ns moderator

[Guest guest]

dear marla, ive missed talking with you as well, thanks for taking time to write. i do hope that youare still feeling better and doing well. im so behind on the posts. your prayers and thoughts mean more than you know, keep them coming, believe me i can feel them here and most times they are all that hold me up, i know they are helping and are making a difference and god willing things will start to move in the right direction soon. all we have is faith right, and not giving up... persistance i guess....? i just dont know what else to do.

how am i? im not so hot marla. the seizure meds have made a difference for sure, that i am greatful for, but they are not controlled and they are not treating the disease itself as of yet. there seems to be some confusion. patience and persistance and faith is all thats left. all the tests have been done the resutls are in..... someone just needs to figure out how to make sense of them and understand neurosarc. im just a patient and only rudimentary understanding of things, and who knows maybe i udnerstand test results wrong. i hope so. mostly i understand whats going on in body and capabilities and on a dialy and nightly basis, and can compare it to what ive been through before. in the end its all going to work out the way its intended to i guess. that i do beleive.

tell me now how ar eyou?

love to you dear freind

kim