Re: Positive attitude

[Guest guest]

THANK YOU CYD FOR YOUR POST.....VERY POSITIVE AND UPLIFTING....GOD

BLESS YOU. LOVE AND PRAYERS, SALLY

> Hi all; This a great message board! It is very uplifting to have

> positive attitudes, and to share our thoughts with each other.

Yes, God

> should be first, then family, and our extended MS family. We do

need to

> all stick together. Maybe we will beat this demon disease. I like

> Larry's poem he sent to all by Edgar A Guest, " THEY SAID IT

COULDN'T BE

> DONE " . I retyped it and put above my desk and look at it everyday.

> I also believe good food, good food supplements, lots of rest,

minimal

> mental and physical stress, is helpful for this MS " stuff " . Always

look

> for the half full glass, not half empty glass! Share a smile

always with

> some one every day. I have had so many positive things happen in

the

> last 2 yrs., more importantly, in the last 1 yr., since we moved to

> Oregon.

> I am no longer working out in the " job " market. We have met nice

people

> here in Oregon, and thru internet LDN board. I met my new Dr., who

told

> me about the LDN. So many things to be thankful for. I am going to

stay

> on LDN forever!

> I also was always very active; square dancing, and clog dancing.

This

> may be one of the reasons I kept MS at bay. It is hard sometimes

not to

> be as active as I used to. I too was DX'd after the " average age "

and

> could NOT believe it. A Nurse broke a needle in my R hip 30 years

ago. I

> thought I had severe nerve damage. 2 years ago I got nerve up to

go to

> Neuro. I was really devastated to learn of MS. I was in denial for

1 yr.

> I also turned more to God. But, we must realize, there are lots we

can

> all do with our own limitations. We must keep on keeping on! Let

us live

> our lives to the fullest, every day. Yesterday is gone, and

tomorrow is

> not yet here.

> Oh, BTW, I now have a dynamite home based business I would love to

share

> with anyone who is interested in making extra money, or saving

money.

> You can get in touch with me 24/7/365. My toll free number for all

of

> US, and Canada: 888-729-3218.

> Share a smile, and make someone happy! :)

> Warmest regards, Cyd Avery

[Guest guest]

I only know you're in the right place here. I can offer some suggestions,

though. I'm having a relatively good day, for me. But I've been where you are

now, and probably will be again before I'm done. Sounds like you're a member of

the lousy genes club like me. No fun. No fun, atall!

First off, you have to call Shoemaker and tell him you can't tolerate the

medication. He can help, but he doesn't have to walk in your shoes, so you do

have to tell him what's up. I recently made the mistake of delaying in doing

that, and paid a heavy price for it. So, don't do the dumb thing like I did.

Before I knew it, the fog had settled in hard and I couldn't think my way to the

telephone. Total cost? 7 weeks of my life shot. And why? Because I assumed he

knows all, sees all, can read my mind, and probably didn't want to be bothered.

Doh! By the time I finally reacted, it was too late and I was in for the hard

ride. Still recovering, slowly.

Second of all, don't take any bull about it. Even other moldies who don't have

the low MSH problem aren't gonna quite get that part of it. People will tell you

you're depressed, that you're still being exposed, that you're a slacker - all

kinds of silly stuff. Not understanding, they sometimes try to make it your

fault. Don't let it throw you. Your only job is to continue doing what you know

to do, and become as well as you can given that additional problem. As I

understand it, this is also something we were born with. The mold only made it

that much worse, and here we are today. A trip out for groceries or taking the

trash out can be a pretty good day, for us.

Next, yeah. Stay mad! And also stay in service to others any way you can think

of to do it. It'll keep you going until you catch the next little breather. I

know it looks sometimes like there won't be one. But there will. It just seems

to take about a zillion times longer than we can stand sometimes.

No, they don't listen. Sometimes, you have to just do the job and say the words.

I try to just think of it as messages in a bottle. You never know when somebody,

at some point down the line, will realize you were telling them something they

need to know.

As frustrating as this thing can be, some of us have talked from time to time

about the feeling of knowing we are in this for a reason. We're born fighters.

I've known I was one all my life. I don't know why it's that way, but it is. I'm

not sure if I believe in fate, but I know I don't believe in accidents. We don't

know why this particular fight was handed to us. But it walks like a duck and it

quacks. And waddya know? here we are - duckslayers if there ever were any!

Now, if what I just said is true (and I know in my guts that it is), then you

are supposed to be here same as me. Look who was picked for the job: People who

have a clear ability to spot manure from long distances and call it what it is.

People who can and will figure out ways to fight back, even when they are so

weak and sick that regular-issue mortals really would roll over and die. People

who can cowboy (or cowgirl) up, commit to a job and see it through to its

natural conclusion, despite the long hours and obscenely low pay <G>. People who

might not do it for themselves, but they'd do it for some sick kid they don't

even know. That is, people who are going to do the right thing because that's

just the way they're built. Yup. That's a hero. And we might not get into any

history books this way, but it does require a heroic effort to keep getting out

of bed every day and dealing with it. Hats off, medals all around.

I knew all this some ways back. And that was before I even knew Doc Shoemaker

titled his book " Mold Warriors " , of all things. That is to say, I knew I was a

fighter, and I knew I was in for the fight of my life. And I had already noticed

that I kept running into these same types of people around here. So when I

learned the title of his book, I laughed so hard I nearly fell off my chair.

(And it's a pretty good thing I didn't because at that point I doubt I had the

strength to get up again.) And then, of all things, comes Katrina and Rita and

the mold plague. I never even counted on any of that. But we were already here.

And we already knew. So you can frame it any way you like and apply whatever

affiliations and values systems seem to make sense to you, but we are tasked. Of

that, there is no question.

So I don't exactly see the message here as being " Why me? " , so much as, " Why us?

And why now? " . Maybe we don't get to answer that part. But every one of us is

someone who had achieved vital, meaningful goals in our past lives. We had

accomplished things. (Which is, I suppose, another way of saying we are very

accomplished people.: ) And of all the things that seem to have been taken away

from us, this seemed the very worst! It's very hard for people who are " doers "

to settle for just sending off messages in bottles, not knowing what might ever

really be accomplished that way. So I jumped off into being a strategist - which

any or all of us can do to suit our own conditions. WHERE can I best put this

message? WHO is most likely to listen to it? WHAT is the best message to be

sending? HOW do I gauge whether what I am doing is having any benefit? WHEN can

I do this? (Because, heaven knows, we can't possibly do everything for everybody

all the time in this rotten condition. We have to

become a sort of ninja mold warriors about it and use our very limited energy

to its very best advantage.)

Very long story short, I'm sorry you're in this shape. I'm sorry I'm in this

shape. But we're gonna make it, even if we don't know how at every turn. And

we're going to accomplish more things, even if we don't know precisely what just

yet. The deal is that I remind you of that when you're low, and you remind me

when I'm low. At least, I think that's what slacker ninja mold warrior heroine

cowgirls are supposed to do when the chips are down and they have us surrounded.

: )

Serena

(Drywall Casserole with Gummint Cheese. It's what's for dinner!)

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

FareChase - Search multiple travel sites in one click.

[Guest guest]

>I'm not sure if I believe in fate, but I know I don't believe in

accidents. We don't know why this particular fight was handed to us.

But it walks like a duck and it quacks. And waddya know? here we

are - duckslayers if there ever were any!<

Funny. In the old posts I talk about flying into a spore plume in my

hang glider over Mt Hull in 1984 in " Sick Thermal Syndrome " and

getting so sick that I was laying my head on the control bar all the

way (seven miles) to the landing area - wondering if I was going to

recover enough to land and worried that I might fall asleep and

impact the ground before waking up.

So I never went through the " sickbuilding " concept and knew

that " Where it is, is where it is " inside or out, high or low.

But the funny part is that Wills Wing decided to build the highest

performing competition glider with all the latest technology and

give it the dumbest name possible.

It was called " The Attack Duck " and the logo was an inverted duck.

I used the ribs and spars in the construction of my camper and it

is a small bit of comfort to look at a small piece that supported me

in my former life is now helping me get along with this one.

-

[Guest guest]

i can relate to this as well, kathy-- & it DOES get better. when i was

initially SOOOO very sick i spent a month in the hospital, returning home in

a wheelchair. went to physical therapy 3 times a week (in a wheelchair

accessible van), & came home & SLEPT. i slept like 16 hrs a day, from the

severe fatigue, the stress i'm sure, the sheer exhaustion of the physical

therapy (it took me about 9 mos. or so to walk again), the pain,....etc.

the pain never ends for me, but i don't know if our pain is similar. i have

what i call " freeze/burn " from my butt down. my butt, my legs & my feet are

pretty numb to this day--years after onset.

but like i said, it does get better. these days i sleep more normal hrs

(like 8-10 hrs a nite), i even babysit my young grandson, i do my own

housework (most of the time), i cook on occasion, and i'm able to do other

things i enjoy, like sewing, etc. my life is far from what it was before my

illness, but i'm still here....and i have NO intention of going anyplace

anytime soon.

i feel, kathy, that my mission in this life isn't over. i try, as the rest

of us on here do, to educate the public about sick building syndrome, & the

horrid things toxic molds can do to the human body. i may not be able to do

the things i once did, but you know what? there's an old saying: " where

God closes one door, He always opens a window. " i think that's very true,

and very accurate. life is what we make it....despite our limitations at

times.

stand strong, kathy, keep the faith, & one day we'll be successful in

proving this mold illness thing IS real!

take care, & God bless,

victoria

[] positive attitude

>

> 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 clea!

> n 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 al!

> gae 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]

great post, carl, thank you!

victoria

[] Re: Re: positive attitude

> 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

>

>

>

>

>

> FAIR USE NOTICE:

>

>

>

[Guest guest]

Thanks Carl. I needed that. Sometimes the pain is unbearable, but I

somehow manage to get through it. Then I pick myself up and fight it some

more. When one doctor fails, I find another. Some consider that " doctor

shopping " but each one that I've seen adds a little to the over all

picture. I don't just depend upon what the doctors say anymore; I get

records and put the significant ones together and am slowly getting to

at least an answer. I hope that some day, every day won't be a

struggle, and I can enjoy life again. I do try to have a positive attitude and

right now that attitude mainly involves trying to stay alive and find someone to

get

me at least somewhat better so that I can be semifunctional again and

enjoy life.

Kathy

" Carl E. Grimes " <grimes@...> wrote: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

FAIR USE NOTICE: