Re: friends understanding

[Guest guest]

I agree- the disrespect is hard to take. One of my friends stopped talking to me

about it-

thinking she would be egging on my " imaginary illness " . I really really try to

focus on other

positive things, and succeed much of the time. But it hard to ignore it when

your body

slam dunks you into bed! It takes so much time and energy to take care of

myself, and

dealing with skeptics can be draining. Generally, I try to just say I feel good,

or everything

is fine. But I have a hard time with that when it just isn't true. I don't have

too many friends

left- I guess they are just busy with their busy healthy lives.

I really appreciate this site, too.

> Barb1283

> hey, all I do is have my house cleaned (if I stay while its cleaned I am sick

all week), and

talk about mycotoxins- some of my best friends think I should see a

hypnotherapist . The

worst part of this illness is the ridicule you have to put up with. I for one am

tired of

explaining myself to unbelieving people. This site is the only place I feel safe

and learn

stuff too. Feel better

>

>

> From: " barb1283 " <barb1283@y...>

>

> ,

> I think my cancer is mycotoxin associated for many reason and that

> is why I am working so hard on this! All this came about after

> taking a medicine that suppressed my immune system. I got sick and

> felt worse when I was at home, not when I was out. Then I realized

> I had mold in house and I tried so many ways and times to be tested

> for fungal infection in 2004 or even just Candidas to no avail. Now

> my Candidas is obvious but I had to wait about a year for a doctor

> to see that and test me.

> Friends don't understand why all I can talk about is mold and

> cleaning my house and never talk about my cancer surgery just last

> October! So, I only make sense to people here or at least I *hope I

> make sense here anyway!!!

>

>

>

[Guest guest]

....or just believe you because you said so...those are rare and

valuable. I have a couple of people like that but I lost alot of

friends also when I wasn't fun to be with anymore. Some hung in

longer than others but basically the statement, smile and the world

smiles with you has a lot more meaning to me than it first did, cry

and you cry alone goes too. It used to mean don't be a whiner or

complainer or crybaby but now it means when you aren't fun anymore,

you will find not too many people care, they just go on to another

more fun person to be with. Those people who do are your 'real'

friends. No other way to find out. The only upside but better than

no upside, right?

> I've just about given up on bothering to explain, too. Most people

only see me on my very best days, and simply will not believe that

the rest of my days are spent in bed or sitting in a chair. I'll say

one thing for this mess - you find out right quick who your real

friends are. I try to treat that as the very valuable information it

is. I have far too little " up time " to be wasting it on people who

neither deserve or appreciate it.

>

> OTOH - the few people who do 'get it' are very, very valued by me.

>

>

> Serena

> www.freeboards.net/index.php?mforum=sickgovernmentb

>

>

[Guest guest]

My family didn't get it either. Neither did they help me at all.

My biggest problem was maintaining sleep. My sleep studies said I

fell asleep and woke up 52 times in the night. When I told an aunt I

was very close to she said, " I've never heard of that " and let it

drop at that. My Dad said try some warm milk at night and that was

that. Now that I had cancer this fall different story I guess

because everyone has heard of that. I think your friends and family

should believe you. I work in a job I have to help people out of

jams when I last worked for ten years. I believed whatever they

told me and did what I could within my ability to help. If they

were lying, I figure that is 'on them'.

> MY FAMILY DOESN'T " GET IT " EITHER, JANET-- & I'VE ALSO LOST

FRIENDS. BUT, WHEN THE PEOPLE WHO ARE SUPPOSED TO BE YOUR " FAMILY "

DOESN'T SUPPORT YOU, THAT HURTS.... & I THINK ITS UNFORGIVEABLE.

>

> TAKE CARE,

> V.

>

[Guest guest]

, we've all lost friends through our ordeal. For one thing, I

don't have the energy or will to socialize anymore. Loss of job

presented me with lack of entertainment funds, so friends stopped

asking me to go places. Then, as you say, you lose friends who just

don't believe you or can't comprehend the severity of it all. I wish

people wouldn't ask the generic " how are you's " , because they probably

get tired of hearing me say " tired " .

Barth

TOXIC MOLD SURVEY: www.presenting.net/sbs/sbssurvey.html

---

KD> Barb1283

KD> hey, all I do is have my house cleaned (if I stay while its cleaned I am

sick all week), and talk about mycotoxins- some of my best friends think I

should see a hypnotherapist . The worst part of

KD> this illness is the ridicule you have to put up with. I for one am tired of

explaining myself to unbelieving people. This site is the only place I feel safe

and learn stuff too. Feel better

KD>

KD> From: " barb1283 " <barb1283@...>

KD> ,

KD> I think my cancer is mycotoxin associated for many reason and that

KD> is why I am working so hard on this! All this came about after

KD> taking a medicine that suppressed my immune system. I got sick and

KD> felt worse when I was at home, not when I was out. Then I realized

KD> I had mold in house and I tried so many ways and times to be tested

KD> for fungal infection in 2004 or even just Candidas to no avail. Now

KD> my Candidas is obvious but I had to wait about a year for a doctor

KD> to see that and test me.

KD> Friends don't understand why all I can talk about is mold and

KD> cleaning my house and never talk about my cancer surgery just last

KD> October! So, I only make sense to people here or at least I *hope I

KD> make sense here anyway!!!

KD>

[Guest guest]

& Everyone,

You're right, we've all lost friends and family is only there when

they want to be and they say they understand when they really don't.

Simple answer when you are asked how you are feeling: You really

don't want the truth, so I'm FINE.

KC

--- In , Patilla DaHun <glypella@p...>

wrote:

> , we've all lost friends through our ordeal. For one thing, I

> don't have the energy or will to socialize anymore. Loss of job

> presented me with lack of entertainment funds, so friends stopped

> asking me to go places. Then, as you say, you lose friends who just

> don't believe you or can't comprehend the severity of it all. I

wish

> people wouldn't ask the generic " how are you's " , because they

probably

> get tired of hearing me say " tired " .

>

> Barth

>

> TOXIC MOLD SURVEY: www.presenting.net/sbs/sbssurvey.html

>

> ---

>

> KD> Barb1283

> KD> hey, all I do is have my house cleaned (if I stay while its

cleaned I am sick all week), and talk about mycotoxins- some of my

best friends think I should see a hypnotherapist . The worst part of

> KD> this illness is the ridicule you have to put up with. I for

one am tired of explaining myself to unbelieving people. This site

is the only place I feel safe and learn stuff too. Feel better

> KD>

>

> KD> From: " barb1283 " <barb1283@y...>

>

> KD> ,

> KD> I think my cancer is mycotoxin associated for many reason and

that

> KD> is why I am working so hard on this! All this came about

after

> KD> taking a medicine that suppressed my immune system. I got

sick and

> KD> felt worse when I was at home, not when I was out. Then I

realized

> KD> I had mold in house and I tried so many ways and times to be

tested

> KD> for fungal infection in 2004 or even just Candidas to no

avail. Now

> KD> my Candidas is obvious but I had to wait about a year for a

doctor

> KD> to see that and test me.

> KD> Friends don't understand why all I can talk about is mold and

> KD> cleaning my house and never talk about my cancer surgery just

last

> KD> October! So, I only make sense to people here or at least I

*hope I

> KD> make sense here anyway!!!

>

>

> KD>

[Guest guest]

Well Hey!

Then you oughtta like THIS story!

Thanksgiving dinner of 1997 I told my family that I would no longer

accept any of their BS about my " crazy mold theory " and that mold

was affecting me in exactly the way I described and anyone who said

differently was low life lying no-good vermin scumbag from Hell.

That was good enough to shut most of 'em up but my sister decided to

be the " scumbag from Hell " and said " So you are saying that all the

doctors are wrong and YOU are right! "

To which I responded " Yes. That is exactly what I am saying " .

And she said " Well, You're an arrogant bastard " .

What could I possibly say to that except F**K Y*U!

Which I did.

And we haven't really spoken much since.

You see, I had been refusing to go to her house since it was

knocking me flat, and that's what got the conversation turned

to " 's little obsession " .

And in 2000 my Mom called to tell me that my sister had been getting

really sick and had her house tested for mold and found that " What

do you call it? Stich, Stick, Stocky - something? " and had to have

it remediated.

Of course, my dear sister never called me to grovel and beg

forgiveness for being such a B from H while I was fighting for my

life. Not one word. Never an acknowledgement of " 's Crazy Mold

Nonsense " being reality. Not even an indication that she had ever

heard the word before and certainly couldn't remember it though I

had made STACHYBOTRYS quite clear.

So despite the despicable behaviors of " friends " and family who are

perfectly willing to watch you die and call you a liar the whole

time, at least you find out who your true friends are and

occasionally even a little bit of justice will be visited upon them.

I didn't put the mold there - I swear.

But I should have!

-

[Guest guest]

you didn't have to - what goes around comes around- these things

have a way of taking care of themselves-

Val

[Guest guest]

I can relate to all of this, loss of funds to socialize, loss of

energy to socialize, just too tired to go out...that lost alot of

friends. Tell someone you have plans with, you are too tired to go

through with them more than a few times!! ...that will get them

running in the opposite direction. One thing I don't do, I don't

make ANY plans that entail getting tickets. Then I feel doubly bad

so stopped accepting those.

--- In , Patilla DaHun <glypella@p...>

wrote:

> , we've all lost friends through our ordeal. For one thing, I

> don't have the energy or will to socialize anymore. Loss of job

> presented me with lack of entertainment funds, so friends stopped

> asking me to go places. Then, as you say, you lose friends who just

> don't believe you or can't comprehend the severity of it all. I

wish

> people wouldn't ask the generic " how are you's " , because they

probably

> get tired of hearing me say " tired " .

>

> Barth

>

> TOXIC MOLD SURVEY: www.presenting.net/sbs/sbssurvey.html

>

> ---

>

> KD> Barb1283

> KD> hey, all I do is have my house cleaned (if I stay while its

cleaned I am sick all week), and talk about mycotoxins- some of my

best friends think I should see a hypnotherapist . The worst part of

> KD> this illness is the ridicule you have to put up with. I for

one am tired of explaining myself to unbelieving people. This site

is the only place I feel safe and learn stuff too. Feel better

> KD>

>

> KD> From: " barb1283 " <barb1283@y...>

>

> KD> ,

> KD> I think my cancer is mycotoxin associated for many reason and

that

> KD> is why I am working so hard on this! All this came about

after

> KD> taking a medicine that suppressed my immune system. I got

sick and

> KD> felt worse when I was at home, not when I was out. Then I

realized

> KD> I had mold in house and I tried so many ways and times to be

tested

> KD> for fungal infection in 2004 or even just Candidas to no

avail. Now

> KD> my Candidas is obvious but I had to wait about a year for a

doctor

> KD> to see that and test me.

> KD> Friends don't understand why all I can talk about is mold and

> KD> cleaning my house and never talk about my cancer surgery just

last

> KD> October! So, I only make sense to people here or at least I

*hope I

> KD> make sense here anyway!!!

>

>

> KD>

[Guest guest]

Most of family lives out of state, so they don't see me much. My hubby who is

also very ill

from the mold effects, also doesn't believe in it, and has a difficult time

being supportive-

he tries, I suppose, but he just doesn't get it. And this with him being sick

from it. I guess

everyone has their own level of understanding, and level of comfort with being

around sick

people. We all know we should be compassionate and comforting to those who

suffer, but

not everyone is in a place to be able to do that.

I think those who are compassionate are the lucky ones. It is good to be soft

hearted. At

least, I think so. I feel so much better when I can be understanding and

compassionate

with others. It would be nice if it happened all the time, but oh well.

[Guest guest]

> & Everyone,

>

> You're right, we've all lost friends and family is only there when

> they want to be and they say they understand when they really don't.

> Simple answer when you are asked how you are feeling: You really

> don't want the truth, so I'm FINE.

>

> KC

>

LOL- yeap, that's it. I think they want to understand, but it takes one to know

one.

" I'M FINE " too!

[Guest guest]

> differently was low life lying no-good vermin scumbag from Hell.

I love your adjectives.....

> And she said " Well, You're an arrogant bastard " .

The doctors were even more arrogant b*s for not being a good detective and

figuring it

out.

> And in 2000 my Mom called to tell me that my sister had been getting

> really sick and had her house tested for mold and found that " What

> do you call it? Stich, Stick, Stocky - something? " and had to have

> it remediated.

So, you get the moral high ground by not saying I told you so, fifteen million

times, but

would you listen? NOOOO, YOU WOULDN'T LISTEN! And now, you are sick as a dog,

and it

is all your own darn fault, you know that don't you? You could have saved

yourself alot of

suffering and agony, If only you had listened! Believe me, I know what you are

going

through, having been through it myself!!!!! This isn't instant karma, but

somewhat delayed

karma.

I am sorry for her suffering, both from the mold and from her ego......I

wouldn't wish this

on ANYBODY.......

[Guest guest]

caroline denaro wrote:

> are you from nj?

Nope. Incline Village, Nevada.

And if you enjoyed THAT little rant of mine,

You should have heard what I told the doctors during the

CFS epidemic!

This has not been the life I had in mind.

-