Re: Re: Dr. Croft's paper--(KC)

[Guest guest]

KC, this is a beautiful rant. Your statements echo what probobly all of us have

been through as far as anyone understanding.

I wanted to say to you personaly that yes Sharen Krammer, Carl, Jeff and many

others have been an endless amount of help and support. I Could never express my

thanks to them. I would send this to you personaly but I think I can speak for

the entire group. You my friend are a special man. You have dealt with so many

hard things, been through a living hell that even most of us cannot understand

and while doing all of that you have been here daily without fail for first,

your wonderful wife but for the rest of us. I don't know what I would do had it

not been for your un dying and selflessness support. I don't know a man alive

that is so there at any given time for any given reason and been as strong and

helpful as you have. I can honestly say you are my best friend. There will never

be a way that I can express my gratitude for simply knowing you.

May I say in the most hetorosexual way I know how to, I love and thank you

from the bottom of my heart.

Chris...

tigerpaw2c <tigerpaw2c@...> wrote:

,

It's nice to hear from you, it's been a while. Sorry to hear that

you are still having problems, but this is one we can definately

relate to. Sharon has been having problems with both her liver and

kidneys. It's horrifying at times just not knowing or even know what

to do any more. She has experienced many times the lower back pain

to the left and right of the spine, which we know is most likely her

kidneys. The milk thistle has helped and most of the time, not all

the time, in releaving the pain. What's causing the pain, who knows.

It's not getting rid of the cause of the problem, but it seems to be

keeping it at bay. But the quick results from the milk thistle seems

to be less at times and taking much longer, with much higher doses.

As far as her liver, who's to say. Many times first thing in the

morning I have seen and finally my daughter has too, the color of

her eyes. The whites of her eyes can either be a dark gray and the

skin tone under her eyes, or a dark yellow. We've noticed this in

her skin coloring also. People say you need to see a doctor, but

they don't realize that it's not that easy, especially when you know

the cause. We're not going to subject ourselves to more abuse and

ignorance that surrounds this issue. Many won't pay attention any

way and if they ask I've come to the point of not mentioning what

caused this infection.

This includes family and friends that just don't seem to get it.

They seem more interested in offering advice that has nothing to do

with the situation or the effects of. Along with a little bit of

attitude and snip to their tone. They ask, but they don't want to

hear it (the truth) and in the end WE have a problem. Which they are

quick to mention. Yet they say they understand, but we know they

really don't.

Over the years I can count on one hand how many relatives or friends

of our members have come onto this board and tried to learn what is

or isn't taking place with this issue or condition. But yet they

will make snide remakes or accusations. Again, you'd think they

would spend a little time to come on here to read what we are

saying! I don't have time, I don't need to read that, we all have to

die from something. I get sick of it, these pat answers. People ask

how you are doing, but they really don't care. They will never

understand because their life is too easy and full of joy. But one

day when their health starts to fail even with recongized

conditions, conditions that were not forced intentionally or

unintentionally upon them and they fail to see how poor are medical

community is in treatment and diagnosis, will they then start to

listen and realize. When their health insurance fails to pay the

claim or disregards their condition or informs them with every

excuse in the book not to cover their cost, THEN they may listen and

start to realize.

These are also the people that will whine until the cows come home

and still will not get involved. They will never experience what you

and I have. It's not just the illness I often tell them, it's many

of our physicians that are not educated and even if they were they

disregard it and say you are crazy. This is an illness that has been

swept under the carpet for many, many years that has caused many to

be in denial. Oh, our medical community wouldn't do that, that's

just your imagination. They seem to forget THE THREE YEARS I did not

know what was causing my wife's condition, two years as she was

being exposed and was suffering some of the worst symptoms and

another year after she left (was terminated) that toxic environment.

Where all of her symptoms at that time my imagination before she was

diagnosed properly? I guess my kids and myself were making these up

in our own minds. Family and friends seem to forget this part of the

story when things were at there worse. We didn't know what was going

to happen the next day or if she was even going to be with us.

Many times I feared when my kids were at home, attending school and

I was at work I was going to get that one phone call I dreaded.

Other than Dad something is wrong with mom, come home. I just found

out recently that my kids hated coming home from school because they

were always afraid she would not be alive. Who considers this

normal?! I hated at that time having to prepare my kids for the

worse. How many have had to do that, not thinking of the members

here per se, but thinking of my immediate family. How many have

attended hospice meetings in order to understand and handle this

type of condition? I have, another real joy.

I had to do this for myself and the members of this board in order

to understand our situation better and continue to try to help

others. The real kicker, they said I'm sorry we really can't help

you because we don't understand and to look on the internet for a

support group. One main question I wanted answered, not by me, but

by one of the other counselors, is why have family and friends

disappeared when you need them the most. I think I knew the answer,

but I needed to hear it from someone else and it's just what I

expected. They don't know what to say or do because they don't

understand and it bothers them so they tend to ignore. I could

accept that, but why couldn't they say just that, what are they

afraid of, our reality?! I think they tell us to get on with our

lives not fully understanding, but this is only so that they can get

on with theirs. I wish it were that easy.

One friend that is in the medical field, one that I thought

understood and I spoke to alot because I thought he was concerned

and wanted to learn more. Boy was I wrong. He finally said to me one

day speaking of Sharon, don't you think this it's about time this

should be over with? I couldn't believe my ears. I wonder how often

he would think of saying that to other patients that have

a " recognized " illness. Has anybody found that secret switch that

might turn this on and off, if you have please send it to me.

It seems to me every industry in this country connected to this

issue, builders, manufacturers, pharmacuticals, HVAC are trying to

make changes to prevent this condition within our living

environment, ALL for except the medical institution. Where the hell

are they and they should have been the first ones on board. They are

supposed to be trying to save lives, not destroy them. What is it

going to take and how many more lives are going to have to be lost?

We all know the science, data is there and has been available. If

it's not, as the CDC claims, then why haven't they received funding

for tracking this condition or the symptoms/illnesses that are

connected? Oh, excuse me, they do have a tracking system and has had

one for years for every condition out there, but they refuse to use

it. Eighty percent of the calls coming into the health department,

from what I understand, are concerns people have about mold. But yet

the majority of these departments don't have any set standard of

information that they can offer. They just past the buck from one

agency to another.

My rant for the day. I know the answers to many of my own questions,

so I really don't need them to be explained to me.

Thanks to Sharon Kramer for doing what she has done to help move

this issue forward for future generations, at least they may have a

chance and many, many others behind the scenes for all their hard

work.

KC

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

wrote:

>

> Hi

>

> I wonder how many others have had their livers affected by

mycotoxins.

__________________________________________________

[Guest guest]

I second this.

Elvira

tigerpaw2c <tigerpaw2c@...> wrote:

Wow. I'm not even sure how to respond. I can't thank you enough for

the kind and very generous statements. None of us knew what we were

getting into and a journey all of us could have done without and I

must say again, could have been prevented.