Re: For Married /coupled women in the group

[Guest guest]

Hi All,

I know not to many are going to step up to bat with this question, but I

will. I to feel more like a patient than a wife, it's not to good for ones

ego either. I have no doubt my husband is faithful, he never goes any where

without me. Unless something is happening on his job, which would be hard

since he works with a couple of my family members.

I do agree with the fact that our spouses are a little intimidated by our

disease, my husband has told me that. When I think about it, I think I turn

away just as much as he does, because something hurts.

That just proves how many other problems, mental and physical, play a big

role in this thing known as CHIARI!!!!!!!!!!!

Hugs,

Sharon Benedict

Baltimore, MD.

chiari ll

[Guest guest]

I know us married men aren't supposed to respond to this but it applies to

us too. My wife has been very hesitant during this whole mess. I know she's

partially afraid of hurting me and all but there has to be more to it. I

don't have any advice to offer but I can tell you that you're not alone.

Sometimes I feel more like a patient than a husband.

Read my daily " Blahthings " at:

www.100megsfree4.com/blahthings/

[Guest guest]

Your hubby is probably just concerned about you.

My first child was by c-section; so we didn't have to wait long; but, I had

bleeding problems and had to be hospitalized when she was a month old. My

second child was a " normal delivery " ; but, after all that had happened with

the first, my hubby was afraid to touch me for quite awhile. (I went out to

a bar with a friend one night and came home and practically attacked him --

lol)

Remember that no matter how gentle he could be, your head would move around

during intimate moments. So, you may not really want that right now.

Talk to him about it. I'm sure he has dome fear of his own right about now;

especially since you have 2 young kids.

On the hair issue: I had the decompression Now off 2000, a shunt put in Jan.

of 2001 and another shunt put in Feb. of 2001. The weekend following the 2nd

shunt we went to my cousin's for a B-day party. My cousin's kids were only 1

and 3 years of age. I was abit worried about them being scared about how I

looked; but, the kids had no reaction at all.

You could take an old baby doll and shave part of it's hair before you have

surgery. And then they will be able to see what you will sort of look like

afterwards.

Peace and grace

Tina in Pgh.

[Guest guest]

I just wanted to say thank you to everyone that emailed me on this topic .

the response was wonderful! I also want you all to know that i did talk with

my hubby and I was just reading him all wrong. I didnt see the little hints

and signals .he was showing me.

things are wonderful

thanks again

Sheila in PA

[Guest guest]

I am sorry...but although this one was addressed to the ladies in the group I

feel I need to chime in. I believe that it is very difficult for a significant

other to find a happy medium on the issue of intimacy when Chiari is involved.

I have read with interest the posts on this thread and I must say that it seems

that many people go to either one extreme or the other in this situation.

While most of you have experienced a spouse that would not touch you my problem

was just the opposite. My wife would not respect my right to say no when I was

suffering from headaches...extreme fatigue...dizziness...etc... Men are not

" supposed " to ever turn sex down, we all have one track minds right? Add to

this the problem created when Chiari causes ED and sex becomes fertile ground

for abuse. This abuse continued up to and including the night before surgery

and throughout my recovery. I only got two hours sleep the night before

surgery.

Never being touched or never being able to say no to being touched are both

abusive situations...I am not sure which is worse. I think in a healthy

relationship it should be possible to discuss this issue and help your

significant other come to understand how you feel while at the same time coming

to understand how he or she feels. I tried to do this in my situation but

unfortunately mine was not a healthy relationship.

Don McNeil

Pain free in Tucson AZ

For Married /coupled women in the group

Hello ladies,

I am just wondering if any of you have had inimate issues with your spouse

/significant other. I started needing to use a wheelchair about the 2 week in

December and have noticed that my husband hasnt touched me since. I dont know

if it is related or not.However i feel lower than lower and i feel more like

his child than his wife.

I also got my hair cut due to my upcoming surgury ..as to not frighten the

dickens out of our children(2 & 4). I have never had short hair (not that it is

short ,but for me it is ..mine use to be past my bra strap) now it sits at

the nape of my necklace line. Anyway the point I a trying to make is I feel

Very unattractive ..my surgury is in three weeks and i am scared to death!

And my hubby has stopped inimate relations with me. I feeel like i just want

to crawl into a whole! Sorry ladies but I am hurting so. I HATE this chiari

monster..it has ruined my life!

thanks for listening. Was just wondering if any of you are going thru this or

have gone thru any of this. I feel so alone!

Sheila In PA

[Guest guest]

Thanks for you point of view Don ...I think most men just don't talk about

it so I appreciate your words.

I have to believe that either is hurtful ....if the spouse withdraws it

hurts, if the spouse keeps acting normal it hurts.......you are right when

you say both are bad situations .......

This is just another of the many faces Chiari wears and that we have to

learn to live with ....I am glad we all have each other to lean on and

understand we are not alone ...we are normal in our own Chiari way

Alba

Re: For Married /coupled women in the group

I am sorry...but although this one was addressed to the ladies in the group

I feel I need to chime in. I believe that it is very difficult for a

significant other to find a happy medium on the issue of intimacy when

Chiari is involved. I have read with interest the posts on this thread and

I must say that it seems that many people go to either one extreme or the

other in this situation. While most of you have experienced a spouse that

would not touch you my problem was just the opposite. My wife would not

respect my right to say no when I was suffering from headaches...extreme

fatigue...dizziness...etc... Men are not " supposed " to ever turn sex down,

we all have one track minds right? Add to this the problem created when

Chiari causes ED and sex becomes fertile ground for abuse. This abuse

continued up to and including the night before surgery and throughout my

recovery. I only got two hours sleep the night before surgery.

Never being touched or never being able to say no to being touched are both

abusive situations...I am not sure which is worse. I think in a healthy

relationship it should be possible to discuss this issue and help your

significant other come to understand how you feel while at the same time

coming to understand how he or she feels. I tried to do this in my

situation but unfortunately mine was not a healthy relationship.

Don McNeil

Pain free in Tucson AZ

For Married /coupled women in the group

Hello ladies,

I am just wondering if any of you have had inimate issues with your spouse

/significant other. I started needing to use a wheelchair about the 2 week

in

December and have noticed that my husband hasnt touched me since. I dont

know

if it is related or not.However i feel lower than lower and i feel more like

his child than his wife.

I also got my hair cut due to my upcoming surgury ..as to not frighten the

dickens out of our children(2 & 4). I have never had short hair (not that it

is

short ,but for me it is ..mine use to be past my bra strap) now it sits at

the nape of my necklace line. Anyway the point I a trying to make is I feel

Very unattractive ..my surgury is in three weeks and i am scared to death!

And my hubby has stopped inimate relations with me. I feeel like i just want

to crawl into a whole! Sorry ladies but I am hurting so. I HATE this chiari

monster..it has ruined my life!

thanks for listening. Was just wondering if any of you are going thru this

or

have gone thru any of this. I feel so alone!

Sheila In PA

[Guest guest]

I had responded to the original post privately, being as I am the

wife of an ACMer, so have a different perspective. I feel that I

need to offer a little insight tho...

Please be patient with your spouses. You may be fighting the

condition, but we are fighting something that we cannot see or feel.

We feel completely helpless.

I remind Rick on a regular basis....WE have Chiari. He may know what

it feels like, but I sure do understand how frustrating it is! We

are a team, and we will fight it together, and muddle through

together. But communication is the key.

Wendi -- New Mexico

> Thanks for you point of view Don ...I think most men just don't

talk about

> it so I appreciate your words.

>

> I have to believe that either is hurtful ....if the spouse

withdraws it

> hurts, if the spouse keeps acting normal it hurts.......you are

right when

> you say both are bad situations .......

>

> This is just another of the many faces Chiari wears and that we

have to

> learn to live with ....I am glad we all have each other to lean on

and

> understand we are not alone ...we are normal in our own Chiari way

>

> Alba

>

> Re: For Married /coupled women in the group

>

>

> I am sorry...but although this one was addressed to the ladies in

the group

> I feel I need to chime in. I believe that it is very difficult

for a

> significant other to find a happy medium on the issue of intimacy

when

> Chiari is involved. I have read with interest the posts on this

thread and

> I must say that it seems that many people go to either one extreme

or the

> other in this situation. While most of you have experienced a

spouse that

> would not touch you my problem was just the opposite. My wife

would not

> respect my right to say no when I was suffering from

headaches...extreme

> fatigue...dizziness...etc... Men are not " supposed " to ever turn

sex down,

> we all have one track minds right? Add to this the problem created

when

> Chiari causes ED and sex becomes fertile ground for abuse. This

abuse

> continued up to and including the night before surgery and

throughout my

> recovery. I only got two hours sleep the night before surgery.

>

> Never being touched or never being able to say no to being touched

are both

> abusive situations...I am not sure which is worse. I think in a

healthy

> relationship it should be possible to discuss this issue and help

your

> significant other come to understand how you feel while at the same

time

> coming to understand how he or she feels. I tried to do this in my

> situation but unfortunately mine was not a healthy relationship.

>

>

> Don McNeil

> Pain free in Tucson AZ

>

> For Married /coupled women in the group

>

> Hello ladies,

>

> I am just wondering if any of you have had inimate issues with your

spouse

> /significant other. I started needing to use a wheelchair about the

2 week

> in

> December and have noticed that my husband hasnt touched me since. I

dont

> know

> if it is related or not.However i feel lower than lower and i feel

more like

> his child than his wife.

>

> I also got my hair cut due to my upcoming surgury ..as to not

frighten the

> dickens out of our children(2 & 4). I have never had short hair (not

that it

> is

> short ,but for me it is ..mine use to be past my bra strap) now it

sits at

> the nape of my necklace line. Anyway the point I a trying to make

is I feel

> Very unattractive ..my surgury is in three weeks and i am scared to

death!

> And my hubby has stopped inimate relations with me. I feeel like i

just want

> to crawl into a whole! Sorry ladies but I am hurting so. I HATE

this chiari

> monster..it has ruined my life!

> thanks for listening. Was just wondering if any of you are going

thru this

> or

> have gone thru any of this. I feel so alone!

> Sheila In PA

>

>

>

[Guest guest]

On the side of practicality: I used my U-shaped pillow to help

prevent/remind me NOT to arch my neck.

Lillian Santana

JEHOVAH-JIREH FARM

Seguin, Texas

Proud backyard breeder of cockers, chihuahuas,

and Great Pyrenees dogs, and Barbados Sheep

Lotsafur and lotsaluv

ACM 1, 10mm, decompressed 5-2-01

Too good for my own good!

[Guest guest]

Hi Sheila,

My husband and I have had this kind of " tension "

also. I can definitley relate to what you are

saying. In my case he just knew I was always in pain

and discomfort, so the usual activities he thought I

possibly couldn't enjoy. I'm not talking just about

sex, although that is part of it, I'm talking about

other spousal things, like going out with friends to

dinner, going on trips, etc. We also have kids, ages

13, 11, and 9 on New Years day!, and I feel, felt,

the

same way as you and have recently told him that. I

feel like one of his kids, a dependent, a burden, to

him. I explained to him that it is exactly

these " normal " things that make me feel like a wife,

a friend, a woman, and help me forget for a while the

aches and pains. BUT, you know what, I feel in my

heart that he doesn't mean to make me feel that way.

He's just trying his best in his way to not hurt me

any further.

I had my surgery on Nov. 29th and am still

recovering. The dr. said no sex until six weeks, but

I feel like I know my body and know what I am up to

and what I am not up to. I can't speak for you or

your hubby, but I always feel honesty with out

blaming is the best policy. Sheila, you know another

thing I have realized lately, I can't depend on

anyone else to make me feel like a human, a woman,

and a valuable person. Know matter what happens with

my marriage and my children, it is up to me to make

myself happy, through believing I am a wonderful

person just he way I am, just the way you are. Smile

and believe in yourself! ~~Patrice

--- Sd3571@... wrote:

> Hello ladies,

>

> I am just wondering if any of you have had inimate

> issues with your spouse

> /significant other. I started needing to use a

> wheelchair about the 2 week in

> December and have noticed that my husband hasnt

> touched me since. I dont know

> if it is related or not.However i feel lower than

> lower and i feel more like

> his child than his wife.

>

> I also got my hair cut due to my upcoming surgury

> ..as to not frighten the

> dickens out of our children(2 & 4). I have never had

> short hair (not that it is

> short ,but for me it is ..mine use to be past my bra

> strap) now it sits at

> the nape of my necklace line. Anyway the point I a

> trying to make is I feel

> Very unattractive ..my surgury is in three weeks and

> i am scared to death!

> And my hubby has stopped inimate relations with me.

> I feeel like i just want

> to crawl into a whole! Sorry ladies but I am hurting

> so. I HATE this chiari

> monster..it has ruined my life!

> thanks for listening. Was just wondering if any of

> you are going thru this or

> have gone thru any of this. I feel so alone!

> Sheila In PA

>

>

> [Non-text portions of this message have been

> removed]

>

>

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>

>

[Guest guest]

Hi,

The baby doll idea is great.

My kids were 4 and 6 when I had the surgery. I talked about it a lot

beforehand, in a matter-of-fact tone. I told them about others who shave their

hair, like athletes, and pointed out ladies and men with very little hair.

Remember, they are much smaller than you, and unless you are down at their

level, they won't be examining the scar or the shaved part too closely.

Finally, it grows back fast!

Pam J.

tmvr331@... wrote: ...You could take an old baby doll and shave part of

it's hair before you have

surgery. And then they will be able to see what you will sort of look like

afterwards.

Peace and grace

Tina in Pgh.