Coping

[Guest guest]

Sorry, that's 18/day MAX EPA fish oil gels. Rita

RE: [ ] coping

i am trying to hold on, i just had a bout with back spasms that were pretty

severe, didn't know what to do. thank you for writing it feels so good to know

somebody out there understands what i am going through...eve

Michele Townsend <mtownsend29@...> wrote:Dear Eve,

One day at a time, one hour at a time, one minute at a time, even one

second at a time, whatever it takes and some day it will be worth it.

Hugs, Michele

-----Original Message-----

From: eve Sent: Tuesday, July 22, 2003 10:24 PM

I am looking for anyone who can help me to deal with this disease. I

get so frusterated with the pain. Can anyone help??

[Guest guest]

> I cope by knowing

> that my kids have enough things on their plate and don't need an

> unhappy mother on top of it. I cope by looking back at the years

I've

> survived and seeing how far we've come and focusing on the moment

and

> not worrying about the future - while at the same time doing

> everything I can now to see that the future is good for my sons

>

> ~~ Dear Kathy:

>

> This is a little late, but I got a lot out of your letter on coping

with

> your childrens' AS. It's a very therapeutic read. Do you mind if

I pass

> it along to another list (a local support group) with your name?

>

> Theresa

Theresa,

Please feel free to pass it along. I'm glad you found it helpful.

Kathy

[Guest guest]

" Vitality shows in not only the ability to persist but the ability to

start over. "

- F. Fitzgerald

>> As for the issue of me not being able to work any longer at any

gainful employment, I have more trouble with that than Lennie does.

It was such a heartbreak for me to have to resign from teaching. I

wasn't ready even though I physically had no choice, and went through

a grieving process (which I still sometimes silently grapple with a

bit). Anytime I've ever mentioned going back to work, Lennie always

says, " That is just not possible. You cannot. You will not survive

it. I don't want you to even consider it. The effort would kill

you, and I cannot face losing you when you don't have to do that

anymore. I know it hurts you and you miss teaching...but you have

turned our home into your classroom, our children into your best

students, our walls into your bulletin boards....in fact, I've never

in my life seen anyone with a flair for elegance and decorating like

you have...and I've never seen any woman fix a hot breakfast for 3

children every morning without fail while using a walker to get

around in the kitchen. " I was so touched when one of my Christmas

gifts this year from Lennie was a tiny lead crystal apple and etched

quotation that says " A Teacher takes a hand, opens a mind, and

touches a heart. " It sits above my computer monitor to remind me

that I really did do God's will, and that for a season, I really did

do a good and useful thing...and gives me hope and determination to

be used of God in some other way now, some other mission, some other

higher purpose....even if He sees fit for it to be from a walker or

wheelchair...or upright as I'd prefer.

>

[Guest guest]

" BIG HUGS LINDA"

YOU KEEP

RIGHT ON

TALKING!

LOVE HELEN

One wordfrees us of all the weight and pain of life: That word is,Love!

Sophocles

[Guest guest]

You and Lennie are truly an inspiration to me....and if my husband

will read it...maybe him too. lol

Hugs,

[Guest guest]

Hi Baysfit, When you said, " Personally, I have tried to view my illness as a

great opportunity

to learn and grow. I can honestly say that because of that my family and I

have gained Massively in many ways (ie nutrition, business self happiness

etc etc) "

Yes. I agree. And in many ways I feel " better " for having had these candida

problems now (and not later!) I've made some big changes to my way of

thinking. Also, I used to feel I had to have cocktails and fast action to

celebrate life and now, even though I'm somewhat " depressed " , I oddly feel

happier and more peaceful. I know the second part of my life will be richer

and certainly more healthful as a result of this darned fungus.

I can't believe I said that,

~Robin

________________________________

From: baysfit [mailto:baysfit@...]

Sent: Saturday, June 12, 2004 4:50 PM

Subject: [ ] Coping

Great tip's about coping. I have a few to add.

Throughout my 5 year rollercoaster ride (hell and back more than

once!)I have kept positive by doing the following.

I always have a stack of personal development books/audio on hand.

(most ordered through my Library). Here are a few I liked..

Unlimited Power by Robbins

Awaken the Giant within by Robbins

Plus the study of Neuro Lingistic Programming (NLP) - It sounds

complicated but is

simply a study of what works in life.(some call it the study of

excellence and achievement). I've gained so many useful tools from

it and it's changed my attitude to life. There are loads of free

articles on the internet.(if anyone's interested, I'll find some

good links to pass on).

Also, anyone who like me, has become interested in personal

development or business development. wealthcreatorradio.com.au has

many interesting free audio's to listen to online.

's stuff is good.When I am really exhausted I just lay and

listen to the shows online. I feel good becasue I am still doing

something productive.

Personally, I have tried to view my illness as a great opportunity

tolearn and grow. I can honestly say that because of that my family

and I have gained Massively in many ways (ie nutrition, business

self happiness etc etc)

Hope my experiences help,

Baysfit

[Guest guest]

Hi Robin,

When you said..

Also, I used to feel I had to have cocktails and fast action to

celebrate life and now, even though I'm somewhat " depressed " , I

oddly feelhappier and more peaceful.

I couldn't agree with you more. I did exactly the same thing. " My

motto was go hard or go home! " . Now I find i'm quite happy writing

poetry, learning and thinking. Life is funny isn't it. I now belive

that some of us need to be hit repeatedly with a baseball bat to

learn lifes lessons!

Hope you feel better soon. I find the herb St 's wort is great

for keeping Depression at bay (But don't take with other Anti-

depressants!). It has the added bonus of being mildly antifungal

too. I have taken it for ages without any problems.

For a long time (about a year) I also used to spend 20 minutes

listening to Mckenna's hypnosis tape " Motivation power " I

initailly tried it for fun and relaxation but I was amazed at the

impact it had on my life. (i have met others who say the same thing)

His website is www.mckennabreen.com if you are interested. There are

some interesting articles and NLP excercises there too.

Keep smiling

Baysfit

[Guest guest]

Thanks Baysfit, When I was sick in the old days my motto was " kick it in the

ass! " As in, you know, just keep working and/or playing through it. It seems

embarrassing to me now -- horribly mean and crude!

I'm going to put in my current picture from the party in Seattle night

before last because I look like such a lady now and not a crazy person with

a stupid motto. I even wore white kid gloves!!) I thought think I'd be

noticeably skinnier than I look: I'm twenty pounds lighter than the " before "

picture. But it's hard to tell in the Seattle photo. (I won't keep it in the

" gallery " long because I don't want to be the only one with photos of myself

~Robin

_____

From: baysfit [mailto:baysfit@...]

Sent: Monday, June 14, 2004 6:21 PM

Subject: [ ] Re: Coping

Hi Robin,

When you said..

Also, I used to feel I had to have cocktails and fast action to

celebrate life and now, even though I'm somewhat " depressed " , I

oddly feelhappier and more peaceful.

I couldn't agree with you more. I did exactly the same thing. " My

motto was go hard or go home! " . Now I find i'm quite happy writing

poetry, learning and thinking. Life is funny isn't it. I now belive

that some of us need to be hit repeatedly with a baseball bat to

learn lifes lessons!

Hope you feel better soon. I find the herb St 's wort is great

for keeping Depression at bay (But don't take with other Anti-

depressants!). It has the added bonus of being mildly antifungal

too. I have taken it for ages without any problems.

For a long time (about a year) I also used to spend 20 minutes

listening to Mckenna's hypnosis tape " Motivation power " I

initailly tried it for fun and relaxation but I was amazed at the

impact it had on my life. (i have met others who say the same thing)

His website is www.mckennabreen.com if you are interested. There are

some interesting articles and NLP excercises there too.

Keep smiling

Baysfit

[Guest guest]

Hi Robin and all

Robin you look lovely! and so fit too. I think you should keep your

picture there. I have added one too so your are not alone. I think

it makes the group more personal and it's nice to know who we are

writing to.

So come on everyone photo's please! Anyone who want's to remain anon

perhapse you could put up your favourite picture (i.e mine is a

photo of Byron Bay lighthouse by photographer Lik, it's my

symbol of hope), or your pet or something to show your personality.

Thanks everyone for all the great advice I have found here. I am

already feeling loads better. The extra support (phew i'm not

alone),plus an increased protien and fat intake are certainly

helping matters.

Bee your excellent advice has really helped me and I am getting over

my fat phobia too. I have even been out today, walked up a huge hill

and bought some organic coconut oil (YUM!) and some organic

tahini.Plus some Kangaroo! (never done that before)

I have a question too. Despite my small frame (slim build, hight 5ft

6inch)I have a huge appetite. I find that I need to eat about 490

grams of meat protien each day to feel satisfied and keep carb

cravings at bay. What do you think Bee (or anyone) is this too much

meat??

Thanks everyone

Baysfit

[Guest guest]

Good Morning Baysfit, I love your photo: it's hard to believe

someone so young as you are sick. You're almost as young as my

granddaughter. You need to get back on your feet extra quick! By the

way, we have yet another thing in common: I'm also 5'6 " with a slim

build and eat so much! I always have and now I seem to eat even

more. On this last trip to Seattle my husband couldn't believe how

many meals I ate and how much. Maybe it's all the protein and fat?

And speaking of fat, I noticed you said that you had increased them.

I hope you'll be careful to increase the amount of fat quite slowly.

You'll know you're starting to get too much (I think) if you notice

your bowel movement starts to float. If that happens maybe you might

want to back off a bit? I had a problem when I increased too quickly

and that was my signal. It's happened once since then when I'd upped

the fat and this time I just backed off again and had no problems..

Hope your day is good. Later, I'm going to check out the web sites

you mentioned. ~Robin

> Hi Robin and all

> Robin you look lovely! and so fit too. I think you should keep

your

> picture there. I have added one too so your are not alone. I think

> it makes the group more personal and it's nice to know who we are

> writing to.

>

> So come on everyone photo's please! Anyone who want's to remain

anon

> perhapse you could put up your favourite picture (i.e mine is a

> photo of Byron Bay lighthouse by photographer Lik, it's my

> symbol of hope), or your pet or something to show your

personality.

>

> Thanks everyone for all the great advice I have found here. I am

> already feeling loads better. The extra support (phew i'm not

> alone),plus an increased protien and fat intake are certainly

> helping matters.

>

> Bee your excellent advice has really helped me and I am getting

over

> my fat phobia too. I have even been out today, walked up a huge

hill

> and bought some organic coconut oil (YUM!) and some organic

> tahini.Plus some Kangaroo! (never done that before)

>

> I have a question too. Despite my small frame (slim build, hight

5ft

> 6inch)I have a huge appetite. I find that I need to eat about 490

> grams of meat protien each day to feel satisfied and keep carb

> cravings at bay. What do you think Bee (or anyone) is this too

much

> meat??

>

> Thanks everyone

> Baysfit

[Guest guest]

> I am new to ES and am grabbing at straws. I can't

> believe this is happening to me! How do you suggest coping?

If you are lucky, you'll find some combination of stuff that

will enable you to live a normal life. It may require dietary

changes, supplements, removal of metal dental work, using

EMF devices, replacing wireless technologies (internet, phone)

with wired equivalents, etc. So it may not be easy, and it

will most certainly require some trial & error!

Marc

[Guest guest]

Hi Ellen

Thankyou for the advise, Made a bowl of Jelly(o) and guess what he was able to

eat the lot so I then made a milk pudding and was able to eat that also. Such

simple things but I just didnt think. Also took him to the docs and he has just

said to up his folic acid to 3 a week instead of 1. We will see if it works.

Myself and boys are bearing up. It is hard though being on the outside of the

disease having to watch the daily rollercoaster. I actually said to my parents

the other day that if I could give a day of each week by having the disease

myself I would even if just for a day. That way at least he would have a break

from the emotion and pain that he and I am sure all of you go through.

But then like I said to him when he apologises for being emotional I would

wonder what sort of person I had married if he didnt get upset.

I am going to ask a question now that you will probably think silly and I

havn't dared ask docs I think mainly cos I'm scared of the answer, but what does

the future hold. I understand that the disease is unpredictable but HOW

unpredictable.

Sorry for rambling I think I ought to go to bed and try and get some sleep,

its been a bit of a tough week and think I will see things more positvely again

in the morning. Goodnight, Hope all is well with you.

Zovtic wrote:

Goodmorning :

How's Phil feeling today? I understand he doesn't want to eat and the

pain in the mouth but food is a necessity even if it's apple sauce,

jello, pudding of somesort, soup, even patte'. Call the doctor and

get him in there again. I don't remember having a problem with my

mouth but I was so drugged up I don't remember much at all from when I

first became ill.

Now, I'm curious, . How are you holding up?

Take care and be well.

Ellen

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

Yahoo! Answers - Get better answers from someone who knows. Tryit now.

[Guest guest]

Hi Ellen

Thankyou for the advise, Made a bowl of Jelly(o) and guess what he was able to

eat the lot so I then made a milk pudding and was able to eat that also. Such

simple things but I just didnt think. Also took him to the docs and he has just

said to up his folic acid to 3 a week instead of 1. We will see if it works.

Myself and boys are bearing up. It is hard though being on the outside of the

disease having to watch the daily rollercoaster. I actually said to my parents

the other day that if I could give a day of each week by having the disease

myself I would even if just for a day. That way at least he would have a break

from the emotion and pain that he and I am sure all of you go through.

But then like I said to him when he apologises for being emotional I would

wonder what sort of person I had married if he didnt get upset.

I am going to ask a question now that you will probably think silly and I

havn't dared ask docs I think mainly cos I'm scared of the answer, but what does

the future hold. I understand that the disease is unpredictable but HOW

unpredictable.

Sorry for rambling I think I ought to go to bed and try and get some sleep,

its been a bit of a tough week and think I will see things more positvely again

in the morning. Goodnight, Hope all is well with you.

Zovtic wrote:

Goodmorning :

How's Phil feeling today? I understand he doesn't want to eat and the

pain in the mouth but food is a necessity even if it's apple sauce,

jello, pudding of somesort, soup, even patte'. Call the doctor and

get him in there again. I don't remember having a problem with my

mouth but I was so drugged up I don't remember much at all from when I

first became ill.

Now, I'm curious, . How are you holding up?

Take care and be well.

Ellen

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

Yahoo! Answers - Get better answers from someone who knows. Tryit now.

[Guest guest]

Hi Ellen

Thankyou for the advise, Made a bowl of Jelly(o) and guess what he was able to

eat the lot so I then made a milk pudding and was able to eat that also. Such

simple things but I just didnt think. Also took him to the docs and he has just

said to up his folic acid to 3 a week instead of 1. We will see if it works.

Myself and boys are bearing up. It is hard though being on the outside of the

disease having to watch the daily rollercoaster. I actually said to my parents

the other day that if I could give a day of each week by having the disease

myself I would even if just for a day. That way at least he would have a break

from the emotion and pain that he and I am sure all of you go through.

But then like I said to him when he apologises for being emotional I would

wonder what sort of person I had married if he didnt get upset.

I am going to ask a question now that you will probably think silly and I

havn't dared ask docs I think mainly cos I'm scared of the answer, but what does

the future hold. I understand that the disease is unpredictable but HOW

unpredictable.

Sorry for rambling I think I ought to go to bed and try and get some sleep,

its been a bit of a tough week and think I will see things more positvely again

in the morning. Goodnight, Hope all is well with you.

Zovtic wrote:

Goodmorning :

How's Phil feeling today? I understand he doesn't want to eat and the

pain in the mouth but food is a necessity even if it's apple sauce,

jello, pudding of somesort, soup, even patte'. Call the doctor and

get him in there again. I don't remember having a problem with my

mouth but I was so drugged up I don't remember much at all from when I

first became ill.

Now, I'm curious, . How are you holding up?

Take care and be well.

Ellen

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

Yahoo! Answers - Get better answers from someone who knows. Tryit now.

[Guest guest]

Hi :

I'm glad I was able to help. The doctor sounds like a good person

with good advise too. Now, I'm going to try to answer your question.

It is, as you said, a very unpredictable illness but I promise you in

the coming months, will get a little easier to handle. We are all

subject to weather changes as a general statement and that, my dear,

might be tough to deal with. His pain won't necessarily subside but

it will become part of his being and in that he'll be able to handle

it a little better. The pain threshold will be higher as time goes on.

There will be bumps in the " road " . There will be days he won't be

able to get out of bed or perhaps he'll be angry at the world in

general. There's always the " why me " stage that will come up from

time to time and that includes you and the boys (believe it or not)

but as the days pass this will become less of an involvement and more

part of everyday life.

I truly believe that half the battle is attitude. Though it's

difficult right now, a positive attitude can actually help in the

coping and healing process. I had 5 years of depression until I was

fed up with myself and decided to change it both for my marriage and

for our son. The greatest part of all is you have this message and

all the support you could ever need. Use it!

Now, please excuse me, we're in a terrible storm and our lights are

blinking, it's time to turn off the computer (just in case). You

could always email me personally if you wish, and I mean it!

Take care and be well.

Ellen

[Guest guest]

Hi :

I'm glad I was able to help. The doctor sounds like a good person

with good advise too. Now, I'm going to try to answer your question.

It is, as you said, a very unpredictable illness but I promise you in

the coming months, will get a little easier to handle. We are all

subject to weather changes as a general statement and that, my dear,

might be tough to deal with. His pain won't necessarily subside but

it will become part of his being and in that he'll be able to handle

it a little better. The pain threshold will be higher as time goes on.

There will be bumps in the " road " . There will be days he won't be

able to get out of bed or perhaps he'll be angry at the world in

general. There's always the " why me " stage that will come up from

time to time and that includes you and the boys (believe it or not)

but as the days pass this will become less of an involvement and more

part of everyday life.

I truly believe that half the battle is attitude. Though it's

difficult right now, a positive attitude can actually help in the

coping and healing process. I had 5 years of depression until I was

fed up with myself and decided to change it both for my marriage and

for our son. The greatest part of all is you have this message and

all the support you could ever need. Use it!

Now, please excuse me, we're in a terrible storm and our lights are

blinking, it's time to turn off the computer (just in case). You

could always email me personally if you wish, and I mean it!

Take care and be well.

Ellen

[Guest guest]

, I empathize with you completely. That's just keeping it brief. I also

wanted to add that it's hard to even deal with the physical issues when you have

to worry about finances also. Sometimes I think though that if I talk about

those things too much though they will get worse, (sometimes since I've been

taken advantage of, working extremely hard at my jobs, for example) so, I handle

the finances on a day to day basis. I make it, and support my son, but barely.

Dawn