Just venting

October 3, 2004

,

I totally understand! I went through a similar thing with my in laws!! Why don't you let your Mom read about Breann, Olivia and Moriah. Shellie said they may be calling Moriah's Infantile now. (hope I got that right Shellie)

It is infuriating, I know but who cares what your Mom thinks anyways. Can't you politely tell her to butt out? I would. She may be mad for a week but she's your mom and she will get over it. Try to hang in there. I too, thought I was crazy with MBP. This is not our imagination. Family seems to be the worst when it comes to this I think.

Good Luck

Crista

October 3, 2004

Hi ,

This is Bert and Bridge from the UK. I'm so sorry you had to swallow that rubbish from your Mum. I too have had to put up with accusations of being cruel and barbaric and over reacting though I have also been shown wonderful support as well.

Show your Mum the pictures and let her read the stories. I believe not researching and educating yorself on treatment options is more like neglect. Also the doctors do not all know what they are doing otherwise why are they all doing different things.

You're the one who has to feel that you have offered your children the best chance to improve not your mum so keep going so that you can make an informed decision.

You go girl.

Love Bert

<doll_face95@...> wrote:

Hi all!I just wanted to vent about a conversation that has been ongoing with my mother. I have recently talked with her about both of my children and the options I am looking into. (casting, bracing, etc.) She has always shown concern in the amount of time I spend researching and such about scoliosis. (Which by the way is obviously not an every day thing considering its been almost two months since Ive even looked at the group site!) Anyway, last week she said that she feels I "should just calm down and do whatever the doctor says is best for my children. Im not the doctor he is and he has been through years of education and training to gain the knowledge that he has. Besides your children are sooo young and theyre curves are so small, why deal with it now?" When I mentioned casting or bracing now verses when they are

teens she says that "these are the formitable years (my kids are 9 and 2) and it would be better to wait until they are 15 or so when they can decide on their own whether or not to cast or brace." I just about lost it.... She has a neighbor with scoliosis who is SEVERE and didnt get any brace or treatment until he was seriously disfigured and had to have a rod in his back that has broke several times. When I brought that up and how I didnt want that for my children and if I act now I can prevent that from ever happening, she just said "well... I just think you are a little too paranoid and you just need to let the doctors deal with it. They know what they are doing." I hung up the phone. That was last week. Today I talked to her and she asked what I was doing. When I said I was fixing photos for my group she said "dont take this the wrong way, I always try to be very honest with you, but I think your spending WAY too much time

over this. You need to get of the computer and spend some time with your children while they are with you." (my son is spendinga day out with his daddy and my daughter is helping me fold clothes) She went on to say that she is afraid that this may turn into Munchausen By Proxy. When I asked her what it was she suggested I spend a little time researching it. Heres a breif summary of what it is for those like me: FACTITIOUS DISORDER, (of which MUNCHAUSEN SYNDROME is a sub-type), (also called "Adult Munchausen", and "Adult Factitious Disorder") is a formal, DSM-IV mental health diagnosis in which people deliberately exaggerate and/or fabricate and/or induce physical and/or psychological-behavioral-mental health problems in themselves. The primary purpose of this behavior is to gain some form of internal gratification, such as attention, for themselves.MUNCHAUSEN BY PROXY (MBP) (also called Munchausen Syndrome by Proxy,

Munchausen by Proxy Syndrome, and Factitious Disorder by Proxy) is a label for a pattern of behavior in which caretakers deliberately exaggerate and/or fabricate and/or induce physical and/or psychological-behavioral-mental health problems in others.This pattern of behavior constitutes a separate kind of maltreatment (abuse/neglect) that manifests as physical abuse, sexual abuse, emotional abuse, neglect, or a combination. The primary purpose of this behavior is to gain some form of internal gratification, such as attention, for the perpetrator.*@#!!!!!!! WHAT THE HELL IS THAT!!!! Like Im just imagining that my children have this condition and Im just going from doctor to doctor until they will see how serious it truly is and treat it the way I want them to. It makes me SICK!! I DO realize that my children have VERY mild cases. I know that there is a STRONG chance that they will NEVER have to go through surgery or

serious treatment for it. I am VERY optomistic that Nate wont ever have to wear a brace or a cast. I am also fairly certain that my daughter WILL have to wear a brace and has a seriously positive outlook. SO FAR! What I am not willing to do is sit back and watch my children become seriously deformed and disfigured and ignorantly do NOTHING!!! What is soo wrong about learning and preparing for EVERY SENARIO??? Just because I know what to do and have a plan for worst case does not me that I am anticipating it or that I am in ANY WAY WISHING IT UPON MY CHILDREN!!!! I have seen the photos of the beautiful little people we have on this site! I have heard first hand what some of you strong mothers and fathers have had to endure with your angels!! If there is anyway that I can prevent that NOW before it gets to that point then WHY SHOULDNT I?? Why should I be labeled in such an horrible way just because I wish to be knowledgable and

prepared for any obsticle that my prevent my children from growing into beautiful, happy, and HEALTHY adults??????? Okay Im done. I think I just need to not talk to my mother about this. Thanks for letting me vent! I feel better now! __________________________________________________

October 3, 2004

BERT!

How are things going???? Been thinking and praying about/for you.

Gail

Re: Just venting

Hi ,

This is Bert and Bridge from the UK. I'm so sorry you had to swallow that rubbish from your Mum. I too have had to put up with accusations of being cruel and barbaric and over reacting though I have also been shown wonderful support as well.

Show your Mum the pictures and let her read the stories. I believe not researching and educating yorself on treatment options is more like neglect. Also the doctors do not all know what they are doing otherwise why are they all doing different things.

You're the one who has to feel that you have offered your children the best chance to improve not your mum so keep going so that you can make an informed decision.

You go girl.

Love Bert

<doll_face95@...> wrote:

Hi all!I just wanted to vent about a conversation that has been ongoing with my mother. I have recently talked with her about both of my children and the options I am looking into. (casting, bracing, etc.) She has always shown concern in the amount of time I spend researching and such about scoliosis. (Which by the way is obviously not an every day thing considering its been almost two months since Ive even looked at the group site!) Anyway, last week she said that she feels I "should just calm down and do whatever the doctor says is best for my children. Im not the doctor he is and he has been through years of education and training to gain the knowledge that he has. Besides your children are sooo young and theyre curves are so small, why deal with it now?" When I mentioned casting or bracing now verses when they are teens she says that "these are the formitable years (my kids are 9 and 2) and it would be better to wait until they are 15 or so when they can decide on their own whether or not to cast or brace." I just about lost it.... She has a neighbor with scoliosis who is SEVERE and didnt get any brace or treatment until he was seriously disfigured and had to have a rod in his back that has broke several times. When I brought that up and how I didnt want that for my children and if I act now I can prevent that from ever happening, she just said "well... I just think you are a little too paranoid and you just need to let the doctors deal with it. They know what they are doing." I hung up the phone. That was last week. Today I talked to her and she asked what I was doing. When I said I was fixing photos for my group she said "dont take this the wrong way, I always try to be very honest with you, but I think your spending WAY too much time over this. You need to get of the computer and spend some time with your children while they are with you." (my son is spendinga day out with his daddy and my daughter is helping me fold clothes) She went on to say that she is afraid that this may turn into Munchausen By Proxy. When I asked her what it was she suggested I spend a little time researching it. Heres a breif summary of what it is for those like me: FACTITIOUS DISORDER, (of which MUNCHAUSEN SYNDROME is a sub-type), (also called "Adult Munchausen", and "Adult Factitious Disorder") is a formal, DSM-IV mental health diagnosis in which people deliberately exaggerate and/or fabricate and/or induce physical and/or psychological-behavioral-mental health problems in themselves. The primary purpose of this behavior is to gain some form of internal gratification, such as attention, for themselves.MUNCHAUSEN BY PROXY (MBP) (also called Munchausen Syndrome by Proxy, Munchausen by Proxy Syndrome, and Factitious Disorder by Proxy) is a label for a pattern of behavior in which caretakers deliberately exaggerate and/or fabricate and/or induce physical and/or psychological-behavioral-mental health problems in others.This pattern of behavior constitutes a separate kind of maltreatment (abuse/neglect) that manifests as physical abuse, sexual abuse, emotional abuse, neglect, or a combination. The primary purpose of this behavior is to gain some form of internal gratification, such as attention, for the perpetrator.*@#!!!!!!! WHAT THE HELL IS THAT!!!! Like Im just imagining that my children have this condition and Im just going from doctor to doctor until they will see how serious it truly is and treat it the way I want them to. It makes me SICK!! I DO realize that my children have VERY mild cases. I know that there is a STRONG chance that they will NEVER have to go through surgery or serious treatment for it. I am VERY optomistic that Nate wont ever have to wear a brace or a cast. I am also fairly certain that my daughter WILL have to wear a brace and has a seriously positive outlook. SO FAR! What I am not willing to do is sit back and watch my children become seriously deformed and disfigured and ignorantly do NOTHING!!! What is soo wrong about learning and preparing for EVERY SENARIO??? Just because I know what to do and have a plan for worst case does not me that I am anticipating it or that I am in ANY WAY WISHING IT UPON MY CHILDREN!!!! I have seen the photos of the beautiful little people we have on this site! I have heard first hand what some of you strong mothers and fathers have had to endure with your angels!! If there is anyway that I can prevent that NOW before it gets to that point then WHY SHOULDNT I?? Why should I be labeled in such an horrible way just because I wish to be knowledgable and prepared for any obsticle that my prevent my children from growing into beautiful, happy, and HEALTHY adults??????? Okay Im done. I think I just need to not talk to my mother about this. Thanks for letting me vent! I feel better now!

__________________________________________________

October 4, 2004

well Gail,

we're here in England and today is the day we were meant to see Min Mehta but she has hurt her knee so I don't know if the visit will go ahead. Tomorrow afternoon we stay over night closer to the hospital so that we can see Mr Ben and have the cast put on on Wednesday so keep the prayers coming. They must be working as the flight over was not too bad.

Thanks Love Bert & Bridge"Gail M. Kimball" <gmkimball@...> wrote:

BERT!

How are things going???? Been thinking and praying about/for you.

Gail

Re: Just venting

Hi ,

This is Bert and Bridge from the UK. I'm so sorry you had to swallow that rubbish from your Mum. I too have had to put up with accusations of being cruel and barbaric and over reacting though I have also been shown wonderful support as well.

Show your Mum the pictures and let her read the stories. I believe not researching and educating yorself on treatment options is more like neglect. Also the doctors do not all know what they are doing otherwise why are they all doing different things.

You're the one who has to feel that you have offered your children the best chance to improve not your mum so keep going so that you can make an informed decision.

You go girl.

Love Bert

<doll_face95@...> wrote:

Hi all!I just wanted to vent about a conversation that has been ongoing with my mother. I have recently talked with her about both of my children and the options I am looking into. (casting, bracing, etc.) She has always shown concern in the amount of time I spend researching and such about scoliosis. (Which by the way is obviously not an every day thing considering its been almost two months since Ive even looked at the group site!) Anyway, last week she said that she feels I "should just calm down and do whatever the doctor says is best for my children. Im not the doctor he is and he has been through years of education and training to gain the knowledge that he has. Besides your children are sooo young and theyre curves are so small, why deal with it now?" When I mentioned casting or bracing now verses when they are

teens she says that "these are the formitable years (my kids are 9 and 2) and it would be better to wait until they are 15 or so when they can decide on their own whether or not to cast or brace." I just about lost it.... She has a neighbor with scoliosis who is SEVERE and didnt get any brace or treatment until he was seriously disfigured and had to have a rod in his back that has broke several times. When I brought that up and how I didnt want that for my children and if I act now I can prevent that from ever happening, she just said "well... I just think you are a little too paranoid and you just need to let the doctors deal with it. They know what they are doing." I hung up the phone. That was last week. Today I talked to her and she asked what I was doing. When I said I was fixing photos for my group she said "dont take this the wrong way, I always try to be very honest with you, but I think your spending WAY too much time

over this. You need to get of the computer and spend some time with your children while they are with you." (my son is spendinga day out with his daddy and my daughter is helping me fold clothes) She went on to say that she is afraid that this may turn into Munchausen By Proxy. When I asked her what it was she suggested I spend a little time researching it. Heres a breif summary of what it is for those like me: FACTITIOUS DISORDER, (of which MUNCHAUSEN SYNDROME is a sub-type), (also called "Adult Munchausen", and "Adult Factitious Disorder") is a formal, DSM-IV mental health diagnosis in which people deliberately exaggerate and/or fabricate and/or induce physical and/or psychological-behavioral-mental health problems in themselves. The primary purpose of this behavior is to gain some form of internal gratification, such as attention, for themselves.MUNCHAUSEN BY PROXY (MBP) (also called Munchausen Syndrome by Proxy,

Munchausen by Proxy Syndrome, and Factitious Disorder by Proxy) is a label for a pattern of behavior in which caretakers deliberately exaggerate and/or fabricate and/or induce physical and/or psychological-behavioral-mental health problems in others.This pattern of behavior constitutes a separate kind of maltreatment (abuse/neglect) that manifests as physical abuse, sexual abuse, emotional abuse, neglect, or a combination. The primary purpose of this behavior is to gain some form of internal gratification, such as attention, for the perpetrator.*@#!!!!!!! WHAT THE HELL IS THAT!!!! Like Im just imagining that my children have this condition and Im just going from doctor to doctor until they will see how serious it truly is and treat it the way I want them to. It makes me SICK!! I DO realize that my children have VERY mild cases. I know that there is a STRONG chance that they will NEVER have to go through surgery or

serious treatment for it. I am VERY optomistic that Nate wont ever have to wear a brace or a cast. I am also fairly certain that my daughter WILL have to wear a brace and has a seriously positive outlook. SO FAR! What I am not willing to do is sit back and watch my children become seriously deformed and disfigured and ignorantly do NOTHING!!! What is soo wrong about learning and preparing for EVERY SENARIO??? Just because I know what to do and have a plan for worst case does not me that I am anticipating it or that I am in ANY WAY WISHING IT UPON MY CHILDREN!!!! I have seen the photos of the beautiful little people we have on this site! I have heard first hand what some of you strong mothers and fathers have had to endure with your angels!! If there is anyway that I can prevent that NOW before it gets to that point then WHY SHOULDNT I?? Why should I be labeled in such an horrible way just because I wish to be knowledgable and

prepared for any obsticle that my prevent my children from growing into beautiful, happy, and HEALTHY adults??????? Okay Im done. I think I just need to not talk to my mother about this. Thanks for letting me vent! I feel better now!

__________________________________________________

October 4, 2004

,

I am so sorry! I have dealt with so much from my in-laws- and it has

been very painful. I couldn't imagine how much it must hurt coming

from you own mother. Lacie's turning fifteen months old and her

curve is 59 degrees. I constantly have to hear from my father in-law

that his doctor told him years ago that everyone has " scoliosis " to

some degree from bad posture and so forth. And he has yet to show

any real concern or interest in Lacie's condition. And he can't

understand why we're so concerned.

The hurtful part is that if my nephew gets a sniffle he's calling my

sister in-law five times a day to find out how he is. He doesn't

call and neither him or my mother in-law come to see her when she's

in the hospital either. I get really frustrated because my mom & dad

live 15 hours away and get be there to help me or support Lacie. So

I understand hom it feels to feel alone in your endeavors. I know

its been said before but its true. God blessed us with these angles

beacuese he felt like we could love, nuture, and protect them. And

so you just continue to follow your heart and your little ones will

be just fine! And I know its not easy and it will still hurt. But I

respectively told my father in-law that he was intitled to his

opionin and if he respected me at all though that he would kindly

keep it to himself. It helped a little-it atleast cleared the air.

And he hasn't made as been rude remarks since then. Hang in there

and god bless you and your family.

>

> Hi all!

>

> I just wanted to vent about a conversation that has been ongoing

with

> my mother. I have recently talked with her about both of my

children

> and the options I am looking into. (casting, bracing, etc.) She

has

> always shown concern in the amount of time I spend researching and

> such about scoliosis. (Which by the way is obviously not an every

day

> thing considering its been almost two months since Ive even looked

at

> the group site!) Anyway, last week she said that she feels

I " should

> just calm down and do whatever the doctor says is best for my

> children. Im not the doctor he is and he has been through years of

> education and training to gain the knowledge that he has. Besides

> your children are sooo young and theyre curves are so small, why

deal

> with it now? " When I mentioned casting or bracing now verses when

> they are teens she says that " these are the formitable years (my

kids

> are 9 and 2) and it would be better to wait until they are 15 or

so

> when they can decide on their own whether or not to cast or

brace. " I

> just about lost it.... She has a neighbor with scoliosis who is

> SEVERE and didnt get any brace or treatment until he was seriously

> disfigured and had to have a rod in his back that has broke

several

> times. When I brought that up and how I didnt want that for my

> children and if I act now I can prevent that from ever happening,

she

> just said " well... I just think you are a little too paranoid and

you

> just need to let the doctors deal with it. They know what they are

> doing. " I hung up the phone. That was last week. Today I talked to

> her and she asked what I was doing. When I said I was fixing

photos

> for my group she said " dont take this the wrong way, I always try

to

> be very honest with you, but I think your spending WAY too much

time

> over this. You need to get of the computer and spend some time

with

> your children while they are with you. " (my son is spendinga day

out

> with his daddy and my daughter is helping me fold clothes) She

went

> on to say that she is afraid that this may turn into Munchausen By

> Proxy. When I asked her what it was she suggested I spend a little

> time researching it. Heres a breif summary of what it is for those

> like me: FACTITIOUS DISORDER, (of which MUNCHAUSEN SYNDROME is a

sub-

> type), (also called " Adult Munchausen " , and " Adult Factitious

> Disorder " ) is a formal, DSM-IV mental health diagnosis in which

> people deliberately exaggerate and/or fabricate and/or induce

> physical and/or psychological-behavioral-mental health problems in

> themselves. The primary purpose of this behavior is to gain some

form

> of internal gratification, such as attention, for themselves.

>

> MUNCHAUSEN BY PROXY (MBP) (also called Munchausen Syndrome by

Proxy,

> Munchausen by Proxy Syndrome, and Factitious Disorder by Proxy) is

a

> label for a pattern of behavior in which caretakers deliberately

> exaggerate and/or fabricate and/or induce physical and/or

> psychological-behavioral-mental health problems in others.

>

> This pattern of behavior constitutes a separate kind of

maltreatment

> (abuse/neglect) that manifests as physical abuse, sexual abuse,

> emotional abuse, neglect, or a combination. The primary purpose of

> this behavior is to gain some form of internal gratification, such

as

> attention, for the perpetrator.

>

> *@#!!!!!!! WHAT THE HELL IS THAT!!!! Like Im just imagining that

my

> children have this condition and Im just going from doctor to

doctor

> until they will see how serious it truly is and treat it the way I

> want them to. It makes me SICK!! I DO realize that my children

have

> VERY mild cases. I know that there is a STRONG chance that they

will

> NEVER have to go through surgery or serious treatment for it. I am

> VERY optomistic that Nate wont ever have to wear a brace or a

cast. I

> am also fairly certain that my daughter WILL have to wear a brace

and

> has a seriously positive outlook. SO FAR! What I am not willing to

do

> is sit back and watch my children become seriously deformed and

> disfigured and ignorantly do NOTHING!!! What is soo wrong about

> learning and preparing for EVERY SENARIO??? Just because I know

what

> to do and have a plan for worst case does not me that I am

> anticipating it or that I am in ANY WAY WISHING IT UPON MY

> CHILDREN!!!! I have seen the photos of the beautiful little people

we

> have on this site! I have heard first hand what some of you strong

> mothers and fathers have had to endure with your angels!! If there

is

> anyway that I can prevent that NOW before it gets to that point

then

> WHY SHOULDNT I?? Why should I be labeled in such an horrible way

just

> because I wish to be knowledgable and prepared for any obsticle

that

> my prevent my children from growing into beautiful, happy, and

> HEALTHY adults???????

>

> Okay Im done. I think I just need to not talk to my mother about

> this.

>

> Thanks for letting me vent! I feel better now!

>

October 4, 2004

,

I had been wondering where you and the kids were.

I am so sorry that your mom is pulling this number on you. For her to even SUGGEST that you have Munchausen by Proxy Syndrome is absurd! I have seen tv shows (including ER - just fessing up here) about this syndrome and there is no way you or any parent that I have "met" on this board has it. It is obvious to me that she doesn't understand what is going on with the kids or what you are doing for them.

Wish I could come up there and sit her down to explain it! Has she seen the kids' x-rays? You are not making this up - I am really angry for you!

If you need a shoulder, you know where to find me!

Gail

Just venting

Hi all!I just wanted to vent about a conversation that has been ongoing with my mother. I have recently talked with her about both of my children and the options I am looking into. (casting, bracing, etc.) She has always shown concern in the amount of time I spend researching and such about scoliosis. (Which by the way is obviously not an every day thing considering its been almost two months since Ive even looked at the group site!) Anyway, last week she said that she feels I "should just calm down and do whatever the doctor says is best for my children. Im not the doctor he is and he has been through years of education and training to gain the knowledge that he has. Besides your children are sooo young and theyre curves are so small, why deal with it now?" When I mentioned casting or bracing now verses when they are teens she says that "these are the formitable years (my kids are 9 and 2) and it would be better to wait until they are 15 or so when they can decide on their own whether or not to cast or brace." I just about lost it.... She has a neighbor with scoliosis who is SEVERE and didnt get any brace or treatment until he was seriously disfigured and had to have a rod in his back that has broke several times. When I brought that up and how I didnt want that for my children and if I act now I can prevent that from ever happening, she just said "well... I just think you are a little too paranoid and you just need to let the doctors deal with it. They know what they are doing." I hung up the phone. That was last week. Today I talked to her and she asked what I was doing. When I said I was fixing photos for my group she said "dont take this the wrong way, I always try to be very honest with you, but I think your spending WAY too much time over this. You need to get of the computer and spend some time with your children while they are with you." (my son is spendinga day out with his daddy and my daughter is helping me fold clothes) She went on to say that she is afraid that this may turn into Munchausen By Proxy. When I asked her what it was she suggested I spend a little time researching it. Heres a breif summary of what it is for those like me: FACTITIOUS DISORDER, (of which MUNCHAUSEN SYNDROME is a sub-type), (also called "Adult Munchausen", and "Adult Factitious Disorder") is a formal, DSM-IV mental health diagnosis in which people deliberately exaggerate and/or fabricate and/or induce physical and/or psychological-behavioral-mental health problems in themselves. The primary purpose of this behavior is to gain some form of internal gratification, such as attention, for themselves.MUNCHAUSEN BY PROXY (MBP) (also called Munchausen Syndrome by Proxy, Munchausen by Proxy Syndrome, and Factitious Disorder by Proxy) is a label for a pattern of behavior in which caretakers deliberately exaggerate and/or fabricate and/or induce physical and/or psychological-behavioral-mental health problems in others.This pattern of behavior constitutes a separate kind of maltreatment (abuse/neglect) that manifests as physical abuse, sexual abuse, emotional abuse, neglect, or a combination. The primary purpose of this behavior is to gain some form of internal gratification, such as attention, for the perpetrator.*@#!!!!!!! WHAT THE HELL IS THAT!!!! Like Im just imagining that my children have this condition and Im just going from doctor to doctor until they will see how serious it truly is and treat it the way I want them to. It makes me SICK!! I DO realize that my children have VERY mild cases. I know that there is a STRONG chance that they will NEVER have to go through surgery or serious treatment for it. I am VERY optomistic that Nate wont ever have to wear a brace or a cast. I am also fairly certain that my daughter WILL have to wear a brace and has a seriously positive outlook. SO FAR! What I am not willing to do is sit back and watch my children become seriously deformed and disfigured and ignorantly do NOTHING!!! What is soo wrong about learning and preparing for EVERY SENARIO??? Just because I know what to do and have a plan for worst case does not me that I am anticipating it or that I am in ANY WAY WISHING IT UPON MY CHILDREN!!!! I have seen the photos of the beautiful little people we have on this site! I have heard first hand what some of you strong mothers and fathers have had to endure with your angels!! If there is anyway that I can prevent that NOW before it gets to that point then WHY SHOULDNT I?? Why should I be labeled in such an horrible way just because I wish to be knowledgable and prepared for any obsticle that my prevent my children from growing into beautiful, happy, and HEALTHY adults??????? Okay Im done. I think I just need to not talk to my mother about this. Thanks for letting me vent! I feel better now!

October 7, 2004

I am so glad to hear that someone else is going through this too. I

ahve tried to use this site for researching but also glad to able to

vent this stuff too.

My mother is a nurse practioner and also thinks that I am making too

much out of this. Colton is 9 mths old with a 30 degree idiopathic

curve and we are heading to Erie Shriner's next month to get a second

opinion from Dr. . Our first opinion here said " wait and see;

do nothing. " I just want another opinion to agree. I also know that

his curve is not THAT bad but who knows what will come of it later.

My mother thinks that EVERYONE HAS IT AND IT IS NOT A LIFE TREATENING

THING, SO LEAVE HIM BE. Even with her medical background (although

not her specialty) she should know that is not true. I did let her

read Olivia and Moriah's story and she watched the video with me.

She was polite and said nothing which only reinforces her opinion to

me...........

It's hard when we are normally so close to have her disagree and not

support this decision we've made. I've kind of stopped saying

anything to her about it unless she asks. It is disheartening

though..... Please know you are not alone and I would be willing to

be a listening ear if you need one. I have just told myself and my

husband that we are doing what WE think is the best for our child and

we haven't hurt him a bit. (I do have to KEEP telling my self though)

Good luck to you. Be strong.

>

> Hi all!

>

> I just wanted to vent about a conversation that has been ongoing

with

> my mother. I have recently talked with her about both of my

children

> and the options I am looking into. (casting, bracing, etc.) She has

> always shown concern in the amount of time I spend researching and

> such about scoliosis. (Which by the way is obviously not an every

day

> thing considering its been almost two months since Ive even looked

at

> the group site!) Anyway, last week she said that she feels

I " should

> just calm down and do whatever the doctor says is best for my

> children. Im not the doctor he is and he has been through years of

> education and training to gain the knowledge that he has. Besides

> your children are sooo young and theyre curves are so small, why

deal

> with it now? " When I mentioned casting or bracing now verses when

> they are teens she says that " these are the formitable years (my

kids

> are 9 and 2) and it would be better to wait until they are 15 or so

> when they can decide on their own whether or not to cast or brace. "

I

> just about lost it.... She has a neighbor with scoliosis who is

> SEVERE and didnt get any brace or treatment until he was seriously

> disfigured and had to have a rod in his back that has broke several

> times. When I brought that up and how I didnt want that for my

> children and if I act now I can prevent that from ever happening,

she

> just said " well... I just think you are a little too paranoid and

you

> just need to let the doctors deal with it. They know what they are

> doing. " I hung up the phone. That was last week. Today I talked to

> her and she asked what I was doing. When I said I was fixing photos

> for my group she said " dont take this the wrong way, I always try

to

> be very honest with you, but I think your spending WAY too much

time

> over this. You need to get of the computer and spend some time with

> your children while they are with you. " (my son is spendinga day

out

> with his daddy and my daughter is helping me fold clothes) She went

> on to say that she is afraid that this may turn into Munchausen By

> Proxy. When I asked her what it was she suggested I spend a little

> time researching it. Heres a breif summary of what it is for those

> like me: FACTITIOUS DISORDER, (of which MUNCHAUSEN SYNDROME is a

sub-

> type), (also called " Adult Munchausen " , and " Adult Factitious

> Disorder " ) is a formal, DSM-IV mental health diagnosis in which

> people deliberately exaggerate and/or fabricate and/or induce

> physical and/or psychological-behavioral-mental health problems in

> themselves. The primary purpose of this behavior is to gain some

form

> of internal gratification, such as attention, for themselves.

>

> MUNCHAUSEN BY PROXY (MBP) (also called Munchausen Syndrome by

Proxy,

> Munchausen by Proxy Syndrome, and Factitious Disorder by Proxy) is

a

> label for a pattern of behavior in which caretakers deliberately

> exaggerate and/or fabricate and/or induce physical and/or

> psychological-behavioral-mental health problems in others.

>

> This pattern of behavior constitutes a separate kind of

maltreatment

> (abuse/neglect) that manifests as physical abuse, sexual abuse,

> emotional abuse, neglect, or a combination. The primary purpose of

> this behavior is to gain some form of internal gratification, such

as

> attention, for the perpetrator.

>

> *@#!!!!!!! WHAT THE HELL IS THAT!!!! Like Im just imagining that my

> children have this condition and Im just going from doctor to

doctor

> until they will see how serious it truly is and treat it the way I

> want them to. It makes me SICK!! I DO realize that my children have

> VERY mild cases. I know that there is a STRONG chance that they

will

> NEVER have to go through surgery or serious treatment for it. I am

> VERY optomistic that Nate wont ever have to wear a brace or a cast.

I

> am also fairly certain that my daughter WILL have to wear a brace

and

> has a seriously positive outlook. SO FAR! What I am not willing to

do

> is sit back and watch my children become seriously deformed and

> disfigured and ignorantly do NOTHING!!! What is soo wrong about

> learning and preparing for EVERY SENARIO??? Just because I know

what

> to do and have a plan for worst case does not me that I am

> anticipating it or that I am in ANY WAY WISHING IT UPON MY

> CHILDREN!!!! I have seen the photos of the beautiful little people

we

> have on this site! I have heard first hand what some of you strong

> mothers and fathers have had to endure with your angels!! If there

is

> anyway that I can prevent that NOW before it gets to that point

then

> WHY SHOULDNT I?? Why should I be labeled in such an horrible way

just

> because I wish to be knowledgable and prepared for any obsticle

that

> my prevent my children from growing into beautiful, happy, and

> HEALTHY adults???????

>

> Okay Im done. I think I just need to not talk to my mother about

> this.

>

> Thanks for letting me vent! I feel better now!

>

September 6, 2005

I know this is a problem here too in the Seattle area. There are brochures in

the rheumy offices, through word of mouth etc and there are very few who attend.

It is getting better every year but the numbers are still really low considering

how many people are afflicted with the disease. I don't have any advice, just a

same here. My son is in the band and I am one of 4 volunteers out of about 100

kids who run the programs and are trying to get the band to Disneyworld next

spring. It is frustrating.

e,

PS How is your health? Are things doing better for you?

ajaoky@... wrote:

I know some of you on the list have experienced the feeling of not having a

support system behind you or an Arthritis Foundation that seems

unresponsive....well, my problem is the opposite I have the support system

AJAO-KY (formerly

FACES) and we have a wonderful AF Chapter (Ohio River Valley) backing us up.

My dilemma is getting young adults or families to attend these meetings and

events and getting a committee together to help. Please, any advice????

hugs and smiles!

Donna

September 6, 2005

Hi e! yes, things are getting better and with my docs advise I am

trying to not sweat the small stuuf and focus on myself and my family...I tend

to

worry a bit too much about things I have lil or no control over. Imagine that!

LOL Thanks for asking and hope you guys are well.

Smiles!

Donna

September 13, 2005

Donna,

Glad to hear that you are doing better. That is awesome news! I can totally

understand your worries, just glad to hear this time it was not something major!

Best wishes for healthy pain free days!

e

ajaoky@... wrote:

Hi e! yes, things are getting better and with my docs advise I am

trying to not sweat the small stuuf and focus on myself and my family...I tend

to

worry a bit too much about things I have lil or no control over. Imagine that!

LOL Thanks for asking and hope you guys are well.

Smiles!

Donna

February 8, 2006

Hi Tina, I know living in a upstairs apartment has to be bad for you and the person below you. Those floors and ceiling are thin and sometimes noise does sound louder then they should. I have been in both situtions myself. The fact that you have a gym handy is great though but it would be nice to be able to use your home treadmill also. Maybe you can try and catch her sometime and try and strike up a conversation as you are passing in the hall. Tell her you understand the floors are thin and noise travels badly. That you heard them banging on something at 2:00 in the morning (with a smile on your face)just so she knows it works both ways.LOL And ask her when her baby usually takes it nap. Maybe you both can schedule your noisy activities in the middle of the afternoon when no one is sleeping. Hopefully she will be neigborly and agree. I wonder if putting a throw rug or maybe a large cardboard box under the treadmill might help muffle the sound? There surley can be some time though out the day that neither your landlord or your neighbor should object to. I hope it works out for you some way. Where I can understand having a lot of noise coming from a neighbor is aggravation whether it is intentional or not but I believe you should be able to walk on a treadmill at a decent hour. If your neighbor is totally unreasonable you may have no other choice but to get your exercise outside of the home. I know you don't want to risk being evicted because of it. Good luck!

~:~The Personal Touch~:~Tags, Stats, or anything else personalized with your name.Everything here is personalized!http://free.hostdepartment.com/t/thepersonaltouchMy Personal Web Site

Just Venting

I know I told you all that my granny got me a treadmill for Christmas, well I live in an upstairs apartment. And up until tonight nothing has been said. Well anyway I got home tonight and some girl was walking up on my porch so I opened up my car door and asked her if she needed something. She was like I just put my baby down to sleep down stairs and it sounds like someone is stomping up there. I said yeah someone is probably on the treadmill. She was like could you have them stop or something. Well for 1 thing she doesn't live down there someone else does. And if this girl is down there then she's up to no good cuz shes always in trouble. She used to live behind my mom. But anyway. So needless to say I'm not going to be able to use the treadmill anymore here. Cuz if she's going to say something at 9:00pm (when the noise ordinance isn't til 10:00pm) then what's going to stop her from saying anything during the day. So I'm just going to have to try to go back to the gym so at least there I can walk on the treadmill. My landlord probably doesn't like me now anyway cuz I turned him in for not fixing a problem with my tub cuz Im on HUD so I dont need the people down stairs to tell him about the noise. So Im just going to have to stop for right now. Sorry for going on and on. But Im just really mad cuz I was sitten here about to fall asleep one night about 2:00am and they were down there banging on something for about an hour. But I didn't say anything. But someone tries to workout and they complain. But anyway. I guess this will continue til Im on the first floor some where...LOL

Tina

February 8, 2006

Oh Tina that is a bummer. I am sorry that he treadmill isn't working out for you and that your neighbors have sensitive ears LOL I hope you find another way to get int he exercise!

Suzy )

Just Venting

I know I told you all that my granny got me a treadmill for Christmas, well I live in an upstairs apartment. And up until tonight nothing has been said. Well anyway I got home tonight and some girl was walking up on my porch so I opened up my car door and asked her if she needed something. She was like I just put my baby down to sleep down stairs and it sounds like someone is stomping up there. I said yeah someone is probably on the treadmill. She was like could you have them stop or something. Well for 1 thing she doesn't live down there someone else does. And if this girl is down there then she's up to no good cuz shes always in trouble. She used to live behind my mom. But anyway. So needless to say I'm not going to be able to use the treadmill anymore here. Cuz if she's going to say something at 9:00pm (when the noise ordinance isn't til 10:00pm) then what's going to stop her from saying anything during the day. So I'm just going to have to try to go back to the gym so at least there I can walk on the treadmill. My landlord probably doesn't like me now anyway cuz I turned him in for not fixing a problem with my tub cuz Im on HUD so I dont need the people down stairs to tell him about the noise. So Im just going to have to stop for right now. Sorry for going on and on. But Im just really mad cuz I was sitten here about to fall asleep one night about 2:00am and they were down there banging on something for about an hour. But I didn't say anything. But someone tries to workout and they complain. But anyway. I guess this will continue til Im on the first floor some where...LOL

Tina

February 8, 2006

Tina, Why don't you talk to your neighbor and see when she puts the baby down to sleep. Then perhaps work around that. Don't let anger and stupid people get in the way of you using the treadmill. WVSouthernAngel@... wrote: I know I told you all that my granny got me a treadmill for Christmas, well I live in an upstairs apartment. And up until tonight nothing has been said. Well anyway I got home tonight and some girl was walking up on my porch so I opened up my car door and asked her if she needed something. She was like I just put my baby down to sleep down stairs and it sounds like someone is stomping up there. I said yeah someone is

probably on the treadmill. She was like could you have them stop or something. Well for 1 thing she doesn't live down there someone else does. And if this girl is down there then she's up to no good cuz shes always in trouble. She used to live behind my mom. But anyway. So needless to say I'm not going to be able to use the treadmill anymore here. Cuz if she's going to say something at 9:00pm (when the noise ordinance isn't til 10:00pm) then what's going to stop her from saying anything during the day. So I'm just going to have to try to go back to the gym so at least there I can walk on the treadmill. My landlord probably doesn't like me now anyway cuz I turned him in for not fixing a problem with my tub cuz Im on HUD so I dont need the people down stairs to tell him about the noise. So Im just going to have to stop for right now. Sorry for going on and on. But Im just really mad cuz I was sitten here

about to fall asleep one night about 2:00am and they were down there banging on something for about an hour. But I didn't say anything. But someone tries to workout and they complain. But anyway. I guess this will continue til Im on the first floor some where...LOL Tina

Relax. virus scanning helps detect nasty viruses!

February 8, 2006

Tina, There are a lot of pros and cons living in an apt. But you need to make compromises, and SOOO do your neighbors. There is no reason that you cant do your treadmill during the day. I would even talk to them and ask if they ahve set time they put the baby down. If they do dont do it at that time but any other time should be fair game. dont let them ruin your time or spirit.

April 22, 2006

Hi Tami,

You say ‘does anyone ever get sick of trying to find a cause to their

symptoms’? I’ve lost track of the number of times I’ve

thought to myself ‘what’s the point’ and more so about going

to the doctor. I hesitate each time before phoning the doctor for an

appointment because I’m sure the receptionist there thinks I’m

imagining it all so now I tend to split my problems between two other doctors

as well. Yes I realize it’s probably silly and should keep things

with my original doctor (who by the way is excellent) but I feel uncomfortable

phoning him basically because the receptionist isn’t really all that

friendly towards me.

Last year when I had my sinus surgery I was

supposed to see my GP a week later so he could do a post op check. Well

problem was he was away and his receptionist who was obviously having a bad

time of things when I phoned (I’d probably pushed the point saying I

needed to see him quickly) said I couldn’t get in for six weeks which I had

to take. I live in a regional area where there’s only four doctors

out of town (town being half an hour drive away).

The surgeon later phoned me and asked why

he hadn’t received the post op report after two weeks and I explained

that the doctor had been away for a few days and I wasn’t able to get in

for six at which point he apparently phoned that receptionist and took a piece

out of her. So now if I phone for an appointment I’m pushed to the very

end of the list and made to feel like a badly behaved school child.

I’d like to keep this doctor but

as you can see, getting past the ‘front desk’ isn’t

easy.

I’ve tried allergists, ENT’s

and the final surgeon who did the operation lives two hours away and takes at

least two months to get in to see so if there’s a problem it’s not

an option to see him.

Yes I’m getting to a stage where I’m

sick of trying to find answers, and I’m sure at times it’s to the

point where I’m suffering depression. I have stress in my life and

tend to push myself to the end of the list. I know stress affects my

sinus and asthma but try to explain that to a doctor. What I should be doing is

to stop feeling sorry for myself and seek out those answers BUT …

Sorry for ranting on so long but Tami I can

fully understand what you’re going through.

From: samters [mailto:samters ] On Behalf Of Tami Klumpyan

Sent: Sunday, 23 April 2006 2:19

AM

samters

Subject: just venting

Hello all,

I'm sorry to be such a complainer, but I am having an awful

time here. I feel like there is nothing that will fix me.

As you know I had a frontal sinusotomy 7 weeks ago.

Four weeks later I developed an infection where the incision was (below my

eyebrow), so I went on an anti biotic. The first three days were great, I

had energy, no headaches and basically felt good. After 3 days I started

to go downhill. Ran a lowgrade fever and my doc put me on Avalox.

Although I've improved, I still feel like sh-t. Fever is gone. I

still have tenderness by my left incision and most headaches seem to radiate

from that site. I also get sharp streaks of pain in my forehead and

across my eyebrows. I had a ct scan done last week and frontals are

completely blocked and full of a thick mucosal thickening.

The good news is that since my surgery I can irrigate without sneezing attacks

and I can use nasal sprays. I'm also taking allegra for allergies.

I think the frontals are blocked due to an allergy to something in my house,

but who knows. Does anyone ever get sick of trying to find a cause to

their symptoms. I'm about at my limit. I had a problem with black

mold in my attic last year but have stopped water problem and sprayed mold with

kilz all. I'm heading right into my busy work season with my strawberry

farm and am starting to wonder if I will be capable of taking care of it.

I know I sound a bit depressed today, but I think I'm more fed up than

depressed. Is there a possibility that I could have an infection in the

bone? Does anyone know the symptoms? The reason I ask, is because

the headaches I get now, are different than the ones I get with plugged up

frontals. Somethings just not right, and I can't put my finger on

it. Any thoughts? I can't wait till I get this under control and

just be a bystander on this site. Have a great day.

Tami in Wis.

April 22, 2006

Thank you so much for answering and understanding. It seems that so many have this disease under control that post here, which in turn makes me feel like I'm doing something wrong.

I totally understand the doctor receptionist thing. If I try to go to someone other than my specialist, no one wants me. They don't want to get mixed up in this stupid disease. My ent is an hour away and sometimes I really don't feel up to the drive, but am very fortunate that he will always see me. I've been wondering if he would just like me not to come back, or if he finds "me" a challenge. I've been using nasal sprays recently and notice that I have some trouble breathing, but don't want to tell the doctor because it seems no matter what I try, there's always a problem. Don't worry, you're not feeling sorry for yourself, you've probably tried so many things that failed, and you just don't want to set yourself up for anymore failure. I know with each new hope that fails, I end up sinking farther down. Hope you have a good night.

Tami

RE: just venting

Hi Tami,

You say ‘does anyone ever get sick of trying to find a cause to their symptoms’? I’ve lost track of the number of times I’ve thought to myself ‘what’s the point’ and more so about going to the doctor. I hesitate each time before phoning the doctor for an appointment because I’m sure the receptionist there thinks I’m imagining it all so now I tend to split my problems between two other doctors as well. Yes I realize it’s probably silly and should keep things with my original doctor (who by the way is excellent) but I feel uncomfortable phoning him basically because the receptionist isn’t really all that friendly towards me.

Last year when I had my sinus surgery I was supposed to see my GP a week later so he could do a post op check. Well problem was he was away and his receptionist who was obviously having a bad time of things when I phoned (I’d probably pushed the point saying I needed to see him quickly) said I couldn’t get in for six weeks which I had to take. I live in a regional area where there’s only four doctors out of town (town being half an hour drive away).

The surgeon later phoned me and asked why he hadn’t received the post op report after two weeks and I explained that the doctor had been away for a few days and I wasn’t able to get in for six at which point he apparently phoned that receptionist and took a piece out of her. So now if I phone for an appointment I’m pushed to the very end of the list and made to feel like a badly behaved school child.

I’d like to keep this doctor but as you can see, getting past the ‘front desk’ isn’t easy.

I’ve tried allergists, ENT’s and the final surgeon who did the operation lives two hours away and takes at least two months to get in to see so if there’s a problem it’s not an option to see him.

Yes I’m getting to a stage where I’m sick of trying to find answers, and I’m sure at times it’s to the point where I’m suffering depression. I have stress in my life and tend to push myself to the end of the list. I know stress affects my sinus and asthma but try to explain that to a doctor. What I should be doing is to stop feeling sorry for myself and seek out those answers BUT …

Sorry for ranting on so long but Tami I can fully understand what you’re going through.

From: samters [mailto:samters ] On Behalf Of Tami KlumpyanSent: Sunday, 23 April 2006 2:19 AMsamters Subject: just venting

Hello all,

I'm sorry to be such a complainer, but I am having an awful time here. I feel like there is nothing that will fix me.

As you know I had a frontal sinusotomy 7 weeks ago. Four weeks later I developed an infection where the incision was (below my eyebrow), so I went on an anti biotic. The first three days were great, I had energy, no headaches and basically felt good. After 3 days I started to go downhill. Ran a lowgrade fever and my doc put me on Avalox. Although I've improved, I still feel like sh-t. Fever is gone. I still have tenderness by my left incision and most headaches seem to radiate from that site. I also get sharp streaks of pain in my forehead and across my eyebrows. I had a ct scan done last week and frontals are completely blocked and full of a thick mucosal thickening. The good news is that since my surgery I can irrigate without sneezing attacks and I can use nasal sprays. I'm also taking allegra for allergies. I think the frontals are blocked due to an allergy to something in my house, but who knows. Does anyone ever get sick of trying to find a cause to their symptoms. I'm about at my limit. I had a problem with black mold in my attic last year but have stopped water problem and sprayed mold with kilz all. I'm heading right into my busy work season with my strawberry farm and am starting to wonder if I will be capable of taking care of it. I know I sound a bit depressed today, but I think I'm more fed up than depressed. Is there a possibility that I could have an infection in the bone? Does anyone know the symptoms? The reason I ask, is because the headaches I get now, are different than the ones I get with plugged up frontals. Somethings just not right, and I can't put my finger on it. Any thoughts? I can't wait till I get this under control and just be a bystander on this site. Have a great day.

Tami in Wis.

April 22, 2006

I have been where you are. I have had the same problems. I actually changed ENTs. They are with the same group but this time I have someone who really understands Samters Triad. I had the second surgery on the 11th. I went for my first post op on the 18th. He is doing a lot of scrapings on each visit to keep the polyps from having somewhere to grow. I am seeing him every week for now to get the scrapings. They are quite painful but anything to keep from having the asthma attacks. I have not used my nebulizer since the surgery. I was on it several times a day. I read somewhere that Samters maybe related to Melatonin. I was taking the supplement for a few years back in the late 90's and have since stopped taking it. I hope that was not the cause. I know what you are going through. You may also want to tell the doctor how the receptionist makes you feel. They are not working for free. Also, I get a lot of help by taking the Xoliar shots. They are very expensive but they work.

Ask your lung specialist about Xolair. <soniarobins@...> wrote: Hi Tami, You say ‘does anyone ever get sick of trying to find a cause to their symptoms’? I’ve lost track of the number of times I’ve thought to myself ‘what’s the point’ and more so about going to the doctor. I hesitate each time before phoning

the doctor for an appointment because I’m sure the receptionist there thinks I’m imagining it all so now I tend to split my problems between two other doctors as well. Yes I realize it’s probably silly and should keep things with my original doctor (who by the way is excellent) but I feel uncomfortable phoning him basically because the receptionist isn’t really all that friendly towards me. Last year when I had my sinus surgery I was supposed to see my GP a week later so he could do a post op check. Well problem was he was away and his receptionist who was obviously having a bad time of things when I phoned (I’d probably pushed the point saying I

needed to see him quickly) said I couldn’t get in for six weeks which I had to take. I live in a regional area where there’s only four doctors out of town (town being half an hour drive away). The surgeon later phoned me and asked why he hadn’t received the post op report after two weeks and I explained that the doctor had been away for a few days and I wasn’t able to get in for six at which point he apparently phoned that receptionist and took a piece out of her. So now if I phone for an appointment I’m pushed to the very end of the list and made to feel like a badly behaved school child. I’d like to keep this doctor but as you can see, getting past the ‘front desk’ isn’t easy. I’ve tried allergists, ENT’s and the final surgeon who did the operation lives two hours away and takes at least two months to get in to see so if there’s a problem it’s not an option to see him. Yes I’m getting to a stage where I’m sick of trying to find answers, and I’m sure at times it’s to the point where I’m suffering depression. I have stress in my life and tend to push myself to the end of the list. I know stress affects my sinus and asthma but try to explain that to a doctor. What I should be doing is to stop feeling sorry for myself and seek out those answers BUT … Sorry for ranting on so long but Tami I can fully understand what you’re going

through. From: samters [mailto:samters ] On Behalf Of Tami KlumpyanSent: Sunday, 23 April 2006 2:19 AMsamters Subject: just venting Hello all, I'm sorry to be such

a complainer, but I am having an awful time here. I feel like there is nothing that will fix me. As you know I had a frontal sinusotomy 7 weeks ago. Four weeks later I developed an infection where the incision was (below my eyebrow), so I went on an anti biotic. The first three days were great, I had energy, no headaches and basically felt good. After 3 days I started to go downhill. Ran a lowgrade fever and my doc put me on Avalox. Although I've improved, I still feel like sh-t. Fever is gone. I still have tenderness by my left incision and most headaches seem to radiate from that site. I also get sharp streaks of pain in my forehead and across my eyebrows. I had a ct scan done last week and frontals are completely blocked and full of a thick mucosal

thickening. The good news is that since my surgery I can irrigate without sneezing attacks and I can use nasal sprays. I'm also taking allegra for allergies. I think the frontals are blocked due to an allergy to something in my house, but who knows. Does anyone ever get sick of trying to find a cause to their symptoms. I'm about at my limit. I had a problem with black mold in my attic last year but have stopped water problem and sprayed mold with kilz all. I'm heading right into my busy work season with my strawberry farm and am starting to wonder if I will be capable of taking care of it. I know I sound a bit depressed today, but I think I'm more fed up than depressed. Is there a possibility that I could have an infection in the bone? Does anyone know the symptoms? The reason I ask, is because the headaches I get now, are different than the ones I get with plugged up frontals. Somethings

just not right, and I can't put my finger on it. Any thoughts? I can't wait till I get this under control and just be a bystander on this site. Have a great day. Tami in Wis.

Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2¢/min with Messenger with Voice.

April 23, 2006

Tami: I hate to make these comments and I hate to play doc long distance via computer but I have two thoughts. There is a nerve that runs above the eyebrow that might have been tweaked that is giving you pain and a different kind of pain that you have described before from your surgery. Sometimes it needs to be blocked if it keeps up. You will probably need a pain doc to do it. Secondly and speaking as one who has had mother of all sinus disease-since your frontals re opacified so quickly your doc and you ( and I hate to even speak the words) might needs to consider the old procedure of an osteoplastic flap with fat grafts. This is only if you have enough pain and problems from the frontals. You might also want to go to Mayo or to Pennsylvannia and get a second opinion but it might be something to consider. Just make sure you don't have allergic fungal sinusitits along with Samter's if you are considering a flap.Okay- I said it - now don't jump down my throat. Carol

just venting

Hello all,

I'm sorry to be such a complainer, but I am having an awful time here. I feel like there is nothing that will fix me.

As you know I had a frontal sinusotomy 7 weeks ago. Four weeks later I developed an infection where the incision was (below my eyebrow), so I went on an anti biotic. The first three days were great, I had energy, no headaches and basically felt good. After 3 days I started to go downhill. Ran a lowgrade fever and my doc put me on Avalox. Although I've improved, I still feel like sh-t. Fever is gone. I still have tenderness by my left incision and most headaches seem to radiate from that site. I also get sharp streaks of pain in my forehead and across my eyebrows. I had a ct scan done last week and frontals are completely blocked and full of a thick mucosal thickening. The good news is that since my surgery I can irrigate without sneezing attacks and I can use nasal sprays. I'm also taking allegra for allergies. I think the frontals are blocked due to an allergy to something in my house, but who knows. Does anyone ever get sick of trying to find a cause to their symptoms. I'm about at my limit. I had a problem with black mold in my attic last year but have stopped water problem and sprayed mold with kilz all. I'm heading right into my busy work season with my strawberry farm and am starting to wonder if I will be capable of taking care of it. I know I sound a bit depressed today, but I think I'm more fed up than depressed. Is there a possibility that I could have an infection in the bone? Does anyone know the symptoms? The reason I ask, is because the headaches I get now, are different than the ones I get with plugged up frontals. Somethings just not right, and I can't put my finger on it. Any thoughts? I can't wait till I get this under control and just be a bystander on this site. Have a great day.

Tami in Wis.

April 25, 2006

Tami: Yes it sounds like the supra trochlear nerve got tweaked a bit/ Carol.

just venting

Hello all,

I'm sorry to be such a complainer, but I am having an awful time here. I feel like there is nothing that will fix me.

As you know I had a frontal sinusotomy 7 weeks ago. Four weeks later I developed an infection where the incision was (below my eyebrow), so I went on an anti biotic. The first three days were great, I had energy, no headaches and basically felt good. After 3 days I started to go downhill. Ran a lowgrade fever and my doc put me on Avalox. Although I've improved, I still feel like sh-t. Fever is gone. I still have tenderness by my left incision and most headaches seem to radiate from that site. I also get sharp streaks of pain in my forehead and across my eyebrows. I had a ct scan done last week and frontals are completely blocked and full of a thick mucosal thickening. The good news is that since my surgery I can irrigate without sneezing attacks and I can use nasal sprays. I'm also taking allegra for allergies. I think the frontals are blocked due to an allergy to something in my house, but who knows. Does anyone ever get sick of trying to find a cause to their symptoms. I'm about at my limit. I had a problem with black mold in my attic last year but have stopped water problem and sprayed mold with kilz all. I'm heading right into my busy work season with my strawberry farm and am starting to wonder if I will be capable of taking care of it. I know I sound a bit depressed today, but I think I'm more fed up than depressed. Is there a possibility that I could have an infection in the bone? Does anyone know the symptoms? The reason I ask, is because the headaches I get now, are different than the ones I get with plugged up frontals. Somethings just not right, and I can't put my finger on it. Any thoughts? I can't wait till I get this under control and just be a bystander on this site. Have a great day.

Tami in Wis.

April 25, 2006

Carol: I would never jump down your throat, I value all opinions for my problems. The doc said he didn't hit the nerves below the eyebrows where the incision was made, but I had complete numbness from the bridge of my nose up to 1 inch above my hairline, radiating out about 1 inch on both sides from the center line. Although about 70% of feeling is back, this is where the headaches are located, and they are pounders. Whats wierd is that if I'm very active one day, the headaches are worse the next, and any activity throughout the day causes pain to become more severe. I did mention this to my doc and he doesn't know why that would be. Is the nerve you're talking about the same one as he said he missed?

I have been to mayo clinic about 8 years ago and they tested for fungus in the sinuses and that came up negative. They put me on the amphateracin B rinse and that nearly killed me. My Ent is going to be out for his own surgery for a few weeks but I will discuss this with him. He's not one to jump into surgery, after all it took him 7 years to do the open frontal one, but the flap surgery has crossed my mind for a long time now. I will get a second opinion before I do this. We are going to get an air exchanger in the house to see if this helps. I also believe I have a severe allergy to black mold or something that's growing in this house. I work outside all summer long and generally have less severe headaches than in the winter. Last summer I actually had about 3 weeks with no headaches ( we had a dry spring) and I can't tell you how on top of the world I felt. Thank you for replying.

Tami

just venting

Hello all,

I'm sorry to be such a complainer, but I am having an awful time here. I feel like there is nothing that will fix me.

As you know I had a frontal sinusotomy 7 weeks ago. Four weeks later I developed an infection where the incision was (below my eyebrow), so I went on an anti biotic. The first three days were great, I had energy, no headaches and basically felt good. After 3 days I started to go downhill. Ran a lowgrade fever and my doc put me on Avalox. Although I've improved, I still feel like sh-t. Fever is gone. I still have tenderness by my left incision and most headaches seem to radiate from that site. I also get sharp streaks of pain in my forehead and across my eyebrows. I had a ct scan done last week and frontals are completely blocked and full of a thick mucosal thickening. The good news is that since my surgery I can irrigate without sneezing attacks and I can use nasal sprays. I'm also taking allegra for allergies. I think the frontals are blocked due to an allergy to something in my house, but who knows. Does anyone ever get sick of trying to find a cause to their symptoms. I'm about at my limit. I had a problem with black mold in my attic last year but have stopped water problem and sprayed mold with kilz all. I'm heading right into my busy work season with my strawberry farm and am starting to wonder if I will be capable of taking care of it. I know I sound a bit depressed today, but I think I'm more fed up than depressed. Is there a possibility that I could have an infection in the bone? Does anyone know the symptoms? The reason I ask, is because the headaches I get now, are different than the ones I get with plugged up frontals. Somethings just not right, and I can't put my finger on it. Any thoughts? I can't wait till I get this under control and just be a bystander on this site. Have a great day.

Tami in Wis.

June 14, 2006

Christian:

Most people on this list have been here from the beginning (97-98 era) -

The sad thing is - is that this is not new. There has been hundreds of

instances on media coverage on this (to include nation-wide) - but most didn't

pay attention.

The public (and military) has been warned for years. Most didn't pay attention

(and still aren't).

We've known since '99 there's about 50 biodefense vaccines in the pipeline to

be utilized on the troops - we've been saying it for years. Most didn't pay

attention (and still aren't)

It's been known that that in cases of " emergencies " or " presidential waiver " -

military men and women could legally be medically experimented on.

http://www.law.cornell.edu/uscode/html/uscode10/usc_sec_10_00001107----000-.html

Most didn't pay attention - and still aren't.

We've known that Congress is playing right along with the DoD in allowing

these atrocities to continue:

http://www.nti.org/d_newswire/issues/2003/9/5/9s.html

" ....Furthermore, the Health and Human Services secretary could authorize

delaying the notification of recipients of their potential health risks. The

proposed law says the information would be provided to the drug recipient, or

next-of-kin in case of a death, no later than 30 days after the individual

received the drug. "

Most didn't pay attention - and aren't.

Individuals naively believe that we live in a free country because we have

freedom of speech, we can burn our flag, we can be illegal aliens demonstrating

in the streets - so we must be free. Most aren't paying attention to what's

behind door #2.

Back to anthrax - there was a class action lawsuit from those made ill from

the vaccine, it was however just dismissed about a month ago - because the case

was remanded to Michigan where the manufacturer was at - and Michigan has

'sovereign immunity'. Military members are screwed because they cannot sue the

government for acts that happen while on active duty because of the FERES

doctrine.

It is just my opinion - but no attorney would take this case on again - you're

dealing with people/agencies that have endless pockets.... afterall, they have

all your money. Isn't that a sweet setup? You get screwed - you pay for it to

happen to you (via taxes), get injured, then get nothing in return. (I'm

assuming you didn't even get a dinner).

As what's been the case all along - what's going to stop this is for people to

get off their butts - do a little more than put a cute sticker on their car

stating they support their troops, and start hounding their legislation.

Afterall, you mean to tell me that hundreds of thousands of people that don't

have the right to demand anything from the Government, can do it - and those

with the right - can't? Sure they can - they just don't. So - until people get

pissed off enough to do something about it - don't plan on seeing change - as a

matter of fact - plan on seeing things get worse.

My hypothesis is that most won't do anything until it affects them - and at

that point - the damage will already have been done.

I don't mean to sound like a downer - I'm just being real.

combatmed5139 <combatmed5139@...> wrote:

I just needed somewhere to vent. I have also been diagnosed as being

epeliptic and also have tremors. I had none of this crap before I

took those stupid shots. This is totally not fair. I know my

condition is no worse than any of yours, but I am so miserable. Its

like something new pops out every once and a while. How can anyone

live a normal life like this? All I want is to be normal and healthy

again. I would give anything so I do not have to suffer like this.

Someone needs to pay for what they have done to us. This is not fair!

We need to find a way to legally go after these criminals and find

justice. If its the government or the company that made that stupid

anthrax vaccine, or even the idiot commanders that gave us the order,

someone needs to be held accountable. They may not feel what we do,

and may never suffer like we do, they need to feel our sting!!!! I

have spent 3 years dealing with this bullshit, now its time for us to

do something and for us to get up and fight back. I suggest we gather

together, and find an attorney who will file a class action suit

against someone we want to go after. We have enough research,

doctors, experts that we should be able to seek an award. No money

can give back what they have taken from us, but to punish those

involved would be a start. we must do what we can to prevent this

from happening to future military members. I am not going to sit by,

and allow this crap to happen. its time we bring the fight to THEM!!!

We could do a petition, or even get the media involved. Randi would

be a great one at that.

Our Anthrax information web site: http://www.dallasnw.quik.com/cyberella/

/files/VAERS.pdf

DESTROY QUARANTINED VACCINE:

http://www.PetitionOnline.com/mod_perl/signed.cgi?robi2662 & amp;amp;amp;1

PETITION TO OVERTURN/REPEAL FERES DOCTRINE

http://www.petitiononline.com/fd1950/petition.html

To visit Dr. Meryl Nass's web site, go to: http://www.anthraxvaccine.org

Also visit: Anthrax Vaccine Benefit vs Risk: http://www.avip2001.net AND

http://www.MajorBates.com/

Anthrax Vaccine Network http://www.ngwrc.org/anthrax/default.asp

Sgt. Larson's story: http://www.ngwrc.org/anthrax/heroes/sandralarson.htm

http://www.avip2001.net/CongressionalTestimony.htm

Tom Heemstra's new book - http://www.anthraxadeadlyshotinthedark.com/index.html

Contact list owner: Gretchen at: anna_nim@...

June 14, 2006

It just the truth!

(bigcheese10@...)

Re: Just venting

Christian:

Most people on this list have been here from the beginning (97-98 era) -

The sad thing is - is that this is not new. There has been hundreds of

instances on media coverage on this (to include nation-wide) - but most

didn't pay attention.

The public (and military) has been warned for years. Most didn't pay

attention (and still aren't).

We've known since '99 there's about 50 biodefense vaccines in the

pipeline to be utilized on the troops - we've been saying it for years.

Most didn't pay attention (and still aren't)

It's been known that that in cases of " emergencies " or " presidential

waiver " - military men and women could legally be medically experimented

on. http://www.law.

<http://www.law.cornell.edu/uscode/html/uscode10/usc_sec_10_00001107----

000-.html>

cornell.edu/uscode/html/uscode10/usc_sec_10_00001107----000-.html

Most didn't pay attention - and still aren't.

We've known that Congress is playing right along with the DoD in

allowing these atrocities to continue:

http://www.nti. <http://www.nti.org/d_newswire/issues/2003/9/5/9s.html>

org/d_newswire/issues/2003/9/5/9s.html

" ....Furthermore, the Health and Human Services secretary could

authorize delaying the notification of recipients of their potential

health risks. The proposed law says the information would be provided to

the drug recipient, or next-of-kin in case of a death, no later than 30

days after the individual received the drug. "

Most didn't pay attention - and aren't.

Individuals naively believe that we live in a free country because we

have freedom of speech, we can burn our flag, we can be illegal aliens

demonstrating in the streets - so we must be free. Most aren't paying

attention to what's behind door #2.

Back to anthrax - there was a class action lawsuit from those made ill

from the vaccine, it was however just dismissed about a month ago -

because the case was remanded to Michigan where the manufacturer was at

- and Michigan has 'sovereign immunity'. Military members are screwed

because they cannot sue the government for acts that happen while on

active duty because of the FERES doctrine.

It is just my opinion - but no attorney would take this case on again -

you're dealing with people/agencies that have endless pockets....

afterall, they have all your money. Isn't that a sweet setup? You get

screwed - you pay for it to happen to you (via taxes), get injured, then

get nothing in return. (I'm assuming you didn't even get a dinner).

As what's been the case all along - what's going to stop this is for

people to get off their butts - do a little more than put a cute sticker

on their car stating they support their troops, and start hounding their

legislation. Afterall, you mean to tell me that hundreds of thousands of

people that don't have the right to demand anything from the Government,

can do it - and those with the right - can't? Sure they can - they just

don't. So - until people get pissed off enough to do something about it

- don't plan on seeing change - as a matter of fact - plan on seeing

things get worse.

My hypothesis is that most won't do anything until it affects them - and

at that point - the damage will already have been done.

I don't mean to sound like a downer - I'm just being real.

combatmed5139 <combatmed5139@ <mailto:combatmed5139%40>

> wrote: