positive attitude

[Guest guest]

Mark,

I try to keep positive but CMT has greatly changed my life. I was not diagnosed

untill age 44 but had been seeing Drs. for 10 yrs trying to find out what was

happening to me.

Friends and family have no idea how much this effects me. Because I look normal

people believe it is all in my head. When I loose my balance around them I get

been walking long or been drinking. When I fall they laugh and say, old age is a

b---h also most of your problems are all those pills you take, so I am nearly a

hermit so people will not say, you just want me to feel sorry for you.

Hope you get better attitudes,

Mike 52

[Guest guest]

Hello Mike,

People can be cruel I know some people use to say to me " walk much. " It is hard

to take, yet I have become determined to be the best person I know how. This is

all about educating others. You are 100 percent correct about people not seeing

the whole picture as if you are not confined to a wheel chair then they look at

you like you have 5 heads when you mention you have a physical challenge.

People just can not understand what it is like. However, I can not say that

every day in the life of a CMT person is better roses. However, most days are

great and I can live in life instead of sitting aside and watching life past me

by. I become more determined to be out there doing my thing in society when all

else is telling me NO don't go out.

So perservere go forth be who you need to be and the heck with what others

think. Smile and carry on.

Thanks

Heidi

[Guest guest]

Someone please tell me how to have a postivie attitude when I am in constant

pain and some days death would be a relief. I've thought about suicide many

times during the past 2 winters because death would be better than what I am

suffering now. The one thing that keeps me hanging on is that I am a Christian

and do believe in God, even though I don't understand why this is happening to

me. I'm afraid that I would go to hell if I killed myself and if it's worse than

what I am experiencing now, I definitiely don't want to go there. I do fairly

well during the spring and summer, but when the weather changes like now, I'm in

constant pain. Today has been horrible. I've cried and prayed and begged God to

give me some relief or just let me die. I don't want to die; I just can't stand

this much longer. I am a type A personality. I want to work. I want to do things

with family and friends. I want to travel. I want to pursure photography. I

would settle now for just being able to clean out my

flower bed.

When I occassionally feel well I do things with my husband and family. My

grandson't birthday is Wednesday and I'm afraid I won't feel like going to the

party. Not many friends call me much anymore because I can't make any plans. I

took a photography class last fall and did really well, but haven't been able to

take the next class. I used to be active in my church, but can't even go most of

the time now. I've had severe digestive problems and now diagnosed with osteitis

in my ethmoid sinuses and even Lortabs don't always help. I was exposed to

Fusarium probably for a long period of time then had an acute exposure when

having to clean up the mess from a supposed remediation at my school. It

produces T-2 toxin and I'm almost certain I was exposed to it. I had elevated

IgG antibodies to both Fusarium and T-2 toxin. T-2 toxin is a trichothecene

listed as a possible bioterrorism agent. My arms would even start bleeding for

no reason and turn black. Fusarium is still growing in algae that

grows in water on the flat roof of the school. It falls on the ground and goes

through the HVAC units in my former room and others as well, and is growing on

the outside wall. I wrote letters to the superintendent and board members. I

spoke at a board meeting. Nobody listens.

I saw Dr. Shoemaker last month and had my phone meeting with him Friday. I have

the " dreaded " genotype. My MSH is too low to measure, VIP extremely low, VGEF

low, leptin slightly high, C3a moderately high and C4a extremely high. He won't

even consider treating me further until I take a month of CSM or Welchol. I

can't take them because they upset my digestive system so bad that I'm even in

more pain. I don't know what to do. I'm not even sure that I fit into his theory

because I made the antibodies to this toxin.

So am I mad? You bet. Whenever I'm even fairly functional I am doing research so

if I ever recover, I can wirte a book or do something to help others with this

nightmare. I try to answer emails with what little knowledge that I have so

others won't get to this point. I'm concerned about the students and teachers at

this school being exposed to this. If I don't stay angry then I would be

depressed and give up. I'm sorry about all the rambling, but I'm just having a

terrible day. I want to be positive, but I just don't think at this point I am

ever going to get well. So how do I deal with pain day in and day out? How do I

keep hope. Either God has given up on me or I'm suffering for a reason. I try to

focus on the later. I'm open for suggestions.

Kathyw

---------------------------------

FareChase - Search multiple travel sites in one click.

[Guest guest]

Kathy, it will get better - very slowly, but it will. Most of us are

in the same boat to where we were very active and able to interact

with our friends and family. Then - BOOM! *It* hit us and knocked us

for a loop. Most of us are physically or financially or both unable to

get decent help. I know that I'm still too sapped to travel.

If you're unable to do Dr. Shoemaker's regimen, why not try milk

thistle? I'm also taking vitamin C now.

I understand not being able to even go to church. I stopped going

because sick people don't know enough to stay home and then they hug

and kiss you to boot!

Barth

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

---

KW> Someone please tell me how to have a postivie attitude when I am in constant

pain and some days death would be a relief. I've thought about suicide many

times during the past 2 winters because

KW> death would be better than what I am suffering now. The one thing that keeps

me hanging on is that I am a Christian and do believe in God, even though I

don't understand why this is happening to

KW> me. I'm afraid that I would go to hell if I killed myself and if it's worse

than what I am experiencing now, I definitiely don't want to go there. I do

fairly well during the spring and summer,

KW> but when the weather changes like now, I'm in constant pain. Today has been

horrible. I've cried and prayed and begged God to give me some relief or just

let me die. I don't want to die; I just

KW> can't stand this much longer. I am a type A personality. I want to work. I

want to do things with family and friends. I want to travel. I want to pursure

photography. I would settle now for just

KW> being able to clean out my

KW> flower bed.

KW> When I occassionally feel well I do things with my husband and family. My

grandson't birthday is Wednesday and I'm afraid I won't feel like going to the

party. Not many friends call me much

KW> anymore because I can't make any plans. I took a photography class last fall

and did really well, but haven't been able to take the next class. I used to be

active in my church, but can't even go

KW> most of the time now. I've had severe digestive problems and now diagnosed

with osteitis in my ethmoid sinuses and even Lortabs don't always help. I was

exposed to Fusarium probably for a long

KW> period of time then had an acute exposure when having to clean up the mess

from a supposed remediation at my school. It produces T-2 toxin and I'm almost

certain I was exposed to it. I had

KW> elevated IgG antibodies to both Fusarium and T-2 toxin. T-2 toxin is a

trichothecene listed as a possible bioterrorism agent. My arms would even start

bleeding for no reason and turn black.

KW> Fusarium is still growing in algae that

KW> grows in water on the flat roof of the school. It falls on the ground and

goes through the HVAC units in my former room and others as well, and is growing

on the outside wall. I wrote letters to

KW> the superintendent and board members. I spoke at a board meeting. Nobody

listens.

KW> I saw Dr. Shoemaker last month and had my phone meeting with him Friday. I

have the " dreaded " genotype. My MSH is too low to measure, VIP extremely low,

VGEF low, leptin slightly high, C3a

KW> moderately high and C4a extremely high. He won't even consider treating me

further until I take a month of CSM or Welchol. I can't take them because they

upset my digestive system so bad that I'm

KW> even in more pain. I don't know what to do. I'm not even sure that I fit

into his theory because I made the antibodies to this toxin.

KW> So am I mad? You bet. Whenever I'm even fairly functional I am doing

research so if I ever recover, I can wirte a book or do something to help others

with this nightmare. I try to answer emails

KW> with what little knowledge that I have so others won't get to this point.

I'm concerned about the students and teachers at this school being exposed to

this. If I don't stay angry then I would be

KW> depressed and give up. I'm sorry about all the rambling, but I'm just having

a terrible day. I want to be positive, but I just don't think at this point I am

ever going to get well. So how do I

KW> deal with pain day in and day out? How do I keep hope. Either God has given

up on me or I'm suffering for a reason. I try to focus on the later. I'm open

for suggestions.

KW> Kathyw

KW> ---------------------------------

KW> FareChase - Search multiple travel sites in one click.

KW>

[Guest guest]

>

Sorry to hear about both of you girls. God it sounds familiar. Don't

worry about weining, this is a support group. Aren't you suppose to do

that. Hang in there, sometimes exercise helps the pain. I know it is

hard. I had RSD and had 10 spinal injections. Thank goodness for our

support here.

[Guest guest]

amen, linda, thank you.

victoria

[] Re: positive attitude

>

>>

> Sorry to hear about both of you girls. God it sounds familiar. Don't

> worry about weining, this is a support group. Aren't you suppose to do

> that. Hang in there, sometimes exercise helps the pain. I know it is

> hard. I had RSD and had 10 spinal injections. Thank goodness for our

> support here.

>

>

>

>

>

>

>

> FAIR USE NOTICE:

>

>

>

[Guest guest]

Kathy, I am so sorry to here your story. How awful that these people are still

in this school. Why would they use such a substance as that? Please hang in

there & I'll pray for you.

I feel the same way you do sometimes. I want to enjoy my kids but don't have any

energy. I want them to remember me as the fun mom. Not the couch potatoe mom of

which I am.

Loni in Arizona

Kathy <kathywnb@...> wrote:

Someone please tell me how to have a postivie attitude when I am in constant

pain and some days death would be a relief. I've thought about suicide many

times during the past 2 winters because death would be better than what I am

suffering now. The one thing that keeps me hanging on is that I am a Christian

and do believe in God, even though I don't understand why this is happening to

me. I'm afraid that I would go to hell if I killed myself and if it's worse than

what I am experiencing now, I definitiely don't want to go there. I do fairly

well during the spring and summer, but when the weather changes like now, I'm in

constant pain. Today has been horrible. I've cried and prayed and begged God to

give me some relief or just let me die. I don't want to die; I just can't stand

this much longer. I am a type A personality. I want to work. I want to do things

with family and friends. I want to travel. I want to pursure photography. I

would settle now for just being able to clean out my

flower bed.

When I occassionally feel well I do things with my husband and family. My

grandson't birthday is Wednesday and I'm afraid I won't feel like going to the

party. Not many friends call me much anymore because I can't make any plans. I

took a photography class last fall and did really well, but haven't been able to

take the next class. I used to be active in my church, but can't even go most of

the time now. I've had severe digestive problems and now diagnosed with osteitis

in my ethmoid sinuses and even Lortabs don't always help. I was exposed to

Fusarium probably for a long period of time then had an acute exposure when

having to clean up the mess from a supposed remediation at my school. It

produces T-2 toxin and I'm almost certain I was exposed to it. I had elevated

IgG antibodies to both Fusarium and T-2 toxin. T-2 toxin is a trichothecene

listed as a possible bioterrorism agent. My arms would even start bleeding for

no reason and turn black. Fusarium is still growing in algae that

grows in water on the flat roof of the school. It falls on the ground and goes

through the HVAC units in my former room and others as well, and is growing on

the outside wall. I wrote letters to the superintendent and board members. I

spoke at a board meeting. Nobody listens.

I saw Dr. Shoemaker last month and had my phone meeting with him Friday. I have

the " dreaded " genotype. My MSH is too low to measure, VIP extremely low, VGEF

low, leptin slightly high, C3a moderately high and C4a extremely high. He won't

even consider treating me further until I take a month of CSM or Welchol. I

can't take them because they upset my digestive system so bad that I'm even in

more pain. I don't know what to do. I'm not even sure that I fit into his theory

because I made the antibodies to this toxin.

So am I mad? You bet. Whenever I'm even fairly functional I am doing research so

if I ever recover, I can wirte a book or do something to help others with this

nightmare. I try to answer emails with what little knowledge that I have so

others won't get to this point. I'm concerned about the students and teachers at

this school being exposed to this. If I don't stay angry then I would be

depressed and give up. I'm sorry about all the rambling, but I'm just having a

terrible day. I want to be positive, but I just don't think at this point I am

ever going to get well. So how do I deal with pain day in and day out? How do I

keep hope. Either God has given up on me or I'm suffering for a reason. I try to

focus on the later. I'm open for suggestions.

Kathyw

---------------------------------

FareChase - Search multiple travel sites in one click.

[Guest guest]

You guys are right on! It's amazing to see the realistic, honest

support available here compared to even a year ago.

Yes, respond as aggressively as necessary to get the help you need so

as to not become a victim or to stay a victim! The positive attitude

we need isn't the hokey " power of positive thinking that will make

you well " kind of BS. But the kind of positive thinking that " there

is always something I can do to make my life at least a little better

and I'm going to find it! "

But it isn't magical and is rarely immediate. Some of you can only

slightly decrease the pain rather than be healed. Others like

are incredibly active. It took me 2 years of constant trial-and-error

effort to recover enough to occasionally work again and another 10

years before I could work full time, and then it was only on " my

time. " I couldn't work on demand, but only when I was able. Now I can

work more than full time but still have to completely stop

occasionally to recover. I've been incredibly lucky.

I started to respond to one of the first e-mails in this thread but

someone else would make even more excellent points. And then another.

And another. So here's my more general and conceptual contribution

that I hope will help add perspective to what we are all

experiencing.

In 1989 Dr Henry Vyner wrote a book that changed my thinking. It is

very technical and is available on Amazon as used, for $8.90. It is

called Invisible Trauma: The Psychosocial Effects of Invisible

Environmental Contaminants.

If you jump to the conclusion that the " psychosocial " part means he

is saying we are crazy, then you must also accept his conclusion that

so are the authorities who deny our experience.

He says that when our individual experience is not validated by the

group authorities, including family - sound familiar with mold? - we

tend to respond at one extreme or the other: Either denial or hyper-

vigilence.

Denial is self explanatory and is what " those that don't get it, "

like family, are experiencing. It is also the state all of us were in

before we woke up and smelled the mold.

Hyper-vigilence means we jump from one action and theory to another

in a near panic mode, never long enough to identify and correct the

cause. We start a new action before we finish the previous.

BOTH denial and hyper-vigilence allow the exposure and the harm to

continue. Neither is better or worse than the other.

Vyner advocates individual action toward a goal of " vigilence. "

Vigilence is that ideal place when we attend aggressively to that

which harms but leave alone that which doesn't - as determined by the

individual. It takes effort, time and luck. And is a very lonely

persuit.

The authorities, the honest ones at least, aren't off the hook

because they respond to their threats IN THE SAME PATTERN.

When their belief system is not supported by those they are trying to

help and the only evidence is self-report, clinical observations,

anecdotal evidence or any other type they don't believe compelling,

they will respond with either hypervigilence or denial, but almost

always with denial. And then they defend their denial out of self-

protection. (He wrote this before the rise of the obvious and blatant

exploitation we see today).

Understanding this doesn't get us well any faster, but maybe it will

help a few of you like it did me. It helped me to understand that I

am not crazy. That even if I am the only person in the whole world

with this hurting experience, I am still reacting normally to an

abnormal situation. It makes no difference whether my family and

authorities believe me or not. It helped me to not not get stuck as

often in my victimization, inaction and loss of hope.

I don't rely on the decisions and opinions of others about me. I

start with public health information and use it if it works. If it

does, I'm done and can go into denial again. But if it doesn't work,

then I'm on my own to find that " something else " I can do to make it

better.

Carl Grimes

Healthy Habitats LLC

[Guest guest]

> But it isn't magical and is rarely immediate. Some of you can

only slightly decrease the pain rather than be healed. Others like

are incredibly active. It took me 2 years of constant trial-

and-error effort to recover enough to occasionally work again and

another 10 years before I could work full time, and then it was only

on " my time. " I couldn't work on demand, but only when I was able.

Now I can work more than full time but still have to completely

stop occasionally to recover. I've been incredibly lucky. -Gil

>

Don't forget that I'm one of the people used to define " Chronic

Fatigue Syndrome " and was kicked around from 1985 til 1997 as a

prototype for CFS in various studies when I finally decided to go

all-out of pursuing mycotoxin avoidance and literally stop at

nothing to refine my avoidance protocols.

And as I described in this group in 2001, it took me out of Dr

s ampligen program " at a point where most people with CFS

commit suicide " to climbing Mt Whitney within six months.

But I put far more refinement and effort into avoidance than people

are willing or interested in doing. And I must maintain a degree of

vigilance that others find unacceptible.

I've always been a little amazed at their rejection of the concept,

because despite the disadvantages of extreme avoidance, I've been

rewarded with a lifestyle that would have been unimaginable

otherwise.

Back in '99, someone in a CFS group committed suicide shortly after

I visited to describe my experience. I could scarcely believe that

he didn't even give mycotoxin avoidance a try, but then, it's always

amazed me that some pretty desperate sounding people in this very

group have no interest in pursuing avoidance at the level I describe

even though they appear to be very dissatisfied with their level of

disability. We all have to make choices, and I'm very glad to have

made the ones I did.

I too, have been incredibly lucky.

-