Re: out of body, or out of mind-kim

[Guest guest]

it just doesnt seem real to be honest, i always feel like i am

telling a story about someone else when i talk about it.

does anyone else feel that way?

Kim, This breaks my heart. I can so relate, and I wouldn't wish this part on anyone.

This disease makes us come so very face to face with our vulnerability. It's like being abandoned by your own body and mind. For me, I can think that I'm having, or have had a long conversation with my family about what's going on-- and I did-- in my head.

I was talking with friends the other day, and the scout group 's a part of, is having a huge party this weekend. I'm sitting at a table with 20 kids and parents, and I'm talking about how we need to get ready for Easter. They're all looking at me like I'm from outer space--and I don't know why. ( shared with me later what I had said.)

was talking about how she'd come up with her own secret language, when she was so very, very sick, and I find that that is what I am doing. I'm also finding that my dreams have me running and kicking my way thru the night. was so furious with me the other night, and I couldn't break out of the dream to awakeness. I honestly didn't want to, I needed the exercise.--Actually, what I needed was to finish the dream, so that the need to be running away would stop. The crazy part was and I had watched the movie where New York reenters the Ice Age, and there was a kid that had to put himself into jeopardy to save those around him. For some reason that really set me off.

I've been part of the Remicade clinical trial since February of this year. So much of what I see all of us doing is putting ourselves--our very life, out as guinea pigs in the medical world so that somewhere in the future-- modern medicine will have a way to heal those with this frigging disease. I pray it'll be in our lifetime.

Kim, I wish this was a dream for you. Just get yourself in competent hands, and as so eloquently stated-- (and I know you already do this)-- value yourself enough to know that healing can and will somehow happen.

With love,

Tracie

[Guest guest]

I

had the same strange thing happen with my doc. I’ve spent years fighting being “sick”, Docs saying well you “look

great” (of course that’s my Kay, really). And saying you seem to be dealing with

it “OK”. So just keep

on doing what you’re doing.

Then I go in for my physical which I put off due to seeing too many docs,

and my doc tells me I’m doing to much, if I want this disease to go into

remission I need to slow down??? Where did that come from?

Then I start to think, well maybe there is

something to this, I want remission, I’m taking the “right”

drugs, but………

But I am still pushing, working, running

around for kids and family, etc… you knows?? We have all been there, and maybe

we do need to slow down and let the drugs work??? What a concept???

Love to all,

Marla

Re:

Re: out of body, or out of mind-kim

In a message dated

10/29/04 7:06:39 PM Pacific Standard Time, kalostad@... writes:

Sorry i have been away from messages

for a few days. Thank you for

your words and sharing your experiences/thoughts. :-) I just wrote

another post saying how odd it is for the tables to be flipped and

the drs trying to tell me how serious things are and that i have to

stop minimilizing my health condition, symptoms, etc.... big change

from the beginning and trying to tell drs " hey there is something

wrong its not stress or overwork!!! " ..I truly understand..... very very strange because in a way i feel the drs teach you to

minimilize your symptoms. by

not paying attention to them or looking at you like " yes yes deary

we understand " sometimes. besides living with so many odd neuro

things and after being so so so sickly things just become normal.

its

normal to be confused, its normal to be so weak, normal to have

shocks shooting up your spine, normal to have loud buzzing in your

head, and so on and so on

, if you were to report it all you would

be in the phone with daily reports! then they dont take you

seriously. Kim,

do you realize how far we've come! what we've come to accept as

" normal " and that we do minimalize what's happening. We need to

embrace ourselves, and honor this strength-- and know that it's ok to fall

apart too. (((((((( hugs )))))))

i feel i went through many different stages of dealing with being so

ill and chronically when first diagnosed and well, then i settled to

it all, I

so remember, and JOAN-- know we're there for you, primarily because we've done

this journey too. then i was doing so

well LET ME POINT OUT DOING SOOOO WELL AFTER STOPPING ALL THESE MEDS FOR

WEEKS. then wham out of no where (though i knew it was all creeping

up on me the past weeks, more like attacking me viciously) i collapse with TIA

attacks and am terribly sickly again unable to do anythign. in january it

will be

four years ago that i was diagnosed.

i will stop because i have so much else to say, i am so angry with

myself for not being able to overcome this, for family and friends

for not getting it and not trying to, with the fact that there is

nothing that can knock it out and stop it, with the fact that many

parts of my life and many dreams for the future keep being brought

to a screeching halt..Kim-- be kind to yourself, you did not ask for this disease, you did

nothing wrong--and are not being punished, you are not weak because you are

sick. Hon, it takes more courage, more faith, more inner strength to live

with chronic illness, than any healthy person will ever know--so don't beat KIM

up. .....and on and on

and on...i thought i was

finished with it all.

As far as the people, family and friends -

who " don't get it " -- and might not ever " get it " May

the great gray elephant shit upon their heads. But until that happens,

pick up a copy of BEYOND CHAOS, ONE MAN'S JOURNEY ALONGSIDE HIS

CHRONICALLY ILL WIFE, by Gregg Piburn, and go to The Invisible

Disabilities Advocate and get the booklet http://www.myida.org/

These

two books (let) have helped and I thru some tough times. I still

keep them both on the stand directly next to the couch, and refer to them

often. They're both lifesavers.

It's hard to embrace yourself when you're

chronically ill. We're taught that our jobs, or careers are what

" we " are about. We're taught that we should have dinner on the

table, the house clean, laundry folded, and kids to the soccer game, and we're

too tired to get off the couch today.

So how do you " embrace " yourself. Take your right arm and grab

the outside of your left arm, and then take your left arm and grab your right

arm and shoulder, and hug yourself. Practice each day, and tell yourself

that you're okay-- even in this flawed body-- YOU ARE OKAY. Now, go get

that partner, or child, or mirror, and do the same with them. Keep

practicing, it's important we master this new way of accepting who we

are.

Putting my right arm on your left shoulder, and repeating with my left arm, I

send you hugs,

Tracie

take care tracie, i hope you get to finish some of those

dreams so

that you can stop running from it all.

Kim

~~~~

*** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- Has been cancelled for now.

Message Archives:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers, and instant messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

I

had the same strange thing happen with my doc. I’ve spent years fighting being “sick”, Docs saying well you “look

great” (of course that’s my Kay, really). And saying you seem to be dealing with

it “OK”. So just keep

on doing what you’re doing.

Then I go in for my physical which I put off due to seeing too many docs,

and my doc tells me I’m doing to much, if I want this disease to go into

remission I need to slow down??? Where did that come from?

Then I start to think, well maybe there is

something to this, I want remission, I’m taking the “right”

drugs, but………

But I am still pushing, working, running

around for kids and family, etc… you knows?? We have all been there, and maybe

we do need to slow down and let the drugs work??? What a concept???

Love to all,

Marla

Re:

Re: out of body, or out of mind-kim

In a message dated

10/29/04 7:06:39 PM Pacific Standard Time, kalostad@... writes:

Sorry i have been away from messages

for a few days. Thank you for

your words and sharing your experiences/thoughts. :-) I just wrote

another post saying how odd it is for the tables to be flipped and

the drs trying to tell me how serious things are and that i have to

stop minimilizing my health condition, symptoms, etc.... big change

from the beginning and trying to tell drs " hey there is something

wrong its not stress or overwork!!! " ..I truly understand..... very very strange because in a way i feel the drs teach you to

minimilize your symptoms. by

not paying attention to them or looking at you like " yes yes deary

we understand " sometimes. besides living with so many odd neuro

things and after being so so so sickly things just become normal.

its

normal to be confused, its normal to be so weak, normal to have

shocks shooting up your spine, normal to have loud buzzing in your

head, and so on and so on

, if you were to report it all you would

be in the phone with daily reports! then they dont take you

seriously. Kim,

do you realize how far we've come! what we've come to accept as

" normal " and that we do minimalize what's happening. We need to

embrace ourselves, and honor this strength-- and know that it's ok to fall

apart too. (((((((( hugs )))))))

i feel i went through many different stages of dealing with being so

ill and chronically when first diagnosed and well, then i settled to

it all, I

so remember, and JOAN-- know we're there for you, primarily because we've done

this journey too. then i was doing so

well LET ME POINT OUT DOING SOOOO WELL AFTER STOPPING ALL THESE MEDS FOR

WEEKS. then wham out of no where (though i knew it was all creeping

up on me the past weeks, more like attacking me viciously) i collapse with TIA

attacks and am terribly sickly again unable to do anythign. in january it

will be

four years ago that i was diagnosed.

i will stop because i have so much else to say, i am so angry with

myself for not being able to overcome this, for family and friends

for not getting it and not trying to, with the fact that there is

nothing that can knock it out and stop it, with the fact that many

parts of my life and many dreams for the future keep being brought

to a screeching halt..Kim-- be kind to yourself, you did not ask for this disease, you did

nothing wrong--and are not being punished, you are not weak because you are

sick. Hon, it takes more courage, more faith, more inner strength to live

with chronic illness, than any healthy person will ever know--so don't beat KIM

up. .....and on and on

and on...i thought i was

finished with it all.

As far as the people, family and friends -

who " don't get it " -- and might not ever " get it " May

the great gray elephant shit upon their heads. But until that happens,

pick up a copy of BEYOND CHAOS, ONE MAN'S JOURNEY ALONGSIDE HIS

CHRONICALLY ILL WIFE, by Gregg Piburn, and go to The Invisible

Disabilities Advocate and get the booklet http://www.myida.org/

These

two books (let) have helped and I thru some tough times. I still

keep them both on the stand directly next to the couch, and refer to them

often. They're both lifesavers.

It's hard to embrace yourself when you're

chronically ill. We're taught that our jobs, or careers are what

" we " are about. We're taught that we should have dinner on the

table, the house clean, laundry folded, and kids to the soccer game, and we're

too tired to get off the couch today.

So how do you " embrace " yourself. Take your right arm and grab

the outside of your left arm, and then take your left arm and grab your right

arm and shoulder, and hug yourself. Practice each day, and tell yourself

that you're okay-- even in this flawed body-- YOU ARE OKAY. Now, go get

that partner, or child, or mirror, and do the same with them. Keep

practicing, it's important we master this new way of accepting who we

are.

Putting my right arm on your left shoulder, and repeating with my left arm, I

send you hugs,

Tracie

take care tracie, i hope you get to finish some of those

dreams so

that you can stop running from it all.

Kim

~~~~

*** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- Has been cancelled for now.

Message Archives:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers, and instant messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database