Re: Kim Article

[Guest guest]

I think the article on Kim is the best I have read so far.

I, too, looked at the picture and thought...she certainly doesn't look sick.

HA!

I recall when I first got this....it took me awhile to catch on that people

couldn't see the battle going on inside of my body because the outside looked

fine.

You can't see aching, waking up feeling like a fully loaded semi-truck has

run you over, feeling like there is a ring around your head or the head doesn't

have enough oxygen going to the brain, ringing in the ears, brain fog, head

pressure, lack of oxygen, muscle weakness, numbness in the hands or feet,

shaking on the inside, blurred vision, light and sound sensitivity.

I tend to try and dress nice on my good days too. I like looking good when I

can.

About the only thing that shows up is when my face gets flushed and my

stomach bloats as if it is 9 months pregnant. And sometimes the strain of what

is

going on inside of my body shows up on my face. And, I also breath heavy a lot

with movement as if I am climbing a mountain in high altitude with an

overloaded backpack.

Keep looking good. WE can only hope that the inside will follow suit. Smile.

[Guest guest]

Hi everyone;

This is a nice site and right up our alley of conversation.

http://www.invisibledisabilities.com/

I found it by chance!

" But You LOOK Good " gets to the heart of why our friends and family members have

difficulty with continuing illness and pain. It helps them to understand that

even though a person with a chronic condition may LOOK good, it does not mean

they FEEL good! Moreover, it gives them simple, pragmatic ways to truly be an

encouragement, " What to say, " " What not to say " and " Why, " along with " How to

help. "

Wayne Connell founded The Invisible Disabilities Advocate, in order to develop

compassion and understanding for those with debilitating illnesses and injuries.

He was inspired by his wife, Sherri's struggles with her disability and support.

Sherri studied music Theatre for 4 years in college where she was very active in

singing and dancing in musicals. She obtained a Bachelor’s Degree in Human

Resource Management and a Bachelor’s degree in Christian Leadership with a minor

in Liberal Arts. However, despite plans of a promising career in HRM and a

Christian Music ministry, just before beginning her Master’s Degree she became

very ill and unable to fulfill her lifelong dreams.

Although Sherri lives with Multiple Sclerosis and Lyme Disease, to most, she

does not look disabled. Even so, she has been disabled since 1991 and struggles

just to wash her hair or go to a doctor’s appointment. As a result, she knows

first hand the pain and frustration that develops from being trapped inside a

body that will no longer cooperate with a person’s aspirations or even simple

daily chores. Therefore, she and Wayne discovered the imperative need to educate

others on how to be a source of support and encouragement to those with

“invisible disabilities.”

In order to develop a greater sense of understanding and awareness, Wayne and

Sherri have dedicated their experiences and trials to informing others about the

needs and hurdles of living with a debilitating condition. Their goal is not to

create a sense of pity, but compassion for their losses, respect for their

courage and belief that their limitations are very real and beyond their

control.

" But You LOOK Good! " is a convenient, informative way to educate loved ones

about what people with debilitating illness and pain struggle with, fight for

and need from their friends and family. It is easy to read, gives practical

ideas on how loved ones can be supportive and is not too long for readers to

lose interest!

This booklet gets to the heart of why our friends and family have difficulty

with illness. Often loved ones are enlightened as to why their well-meaning

advice is not always well-received. It is cherished by both those living with

illness or injury and those who love them!

" But You LOOK Good! " helps others understand that even though a person with a

chronic condition may LOOK good, it does not mean they FEEL good! Moreover, it

gives them simple, pragmatic ways to truly be an encouragement, " What to say, "

" What not to say " and " Why, " along with " How to help. "

kam004@... wrote:

I think the article on Kim is the best I have read so far.

I, too, looked at the picture and thought...she certainly doesn't look sick.

HA!

I recall when I first got this....it took me awhile to catch on that people

couldn't see the battle going on inside of my body because the outside looked

fine.

You can't see aching, waking up feeling like a fully loaded semi-truck has

run you over, feeling like there is a ring around your head or the head doesn't

have enough oxygen going to the brain, ringing in the ears, brain fog, head

pressure, lack of oxygen, muscle weakness, numbness in the hands or feet,

shaking on the inside, blurred vision, light and sound sensitivity.

I tend to try and dress nice on my good days too. I like looking good when I

can.

About the only thing that shows up is when my face gets flushed and my

stomach bloats as if it is 9 months pregnant. And sometimes the strain of what

is

going on inside of my body shows up on my face. And, I also breath heavy a lot

with movement as if I am climbing a mountain in high altitude with an

overloaded backpack.

Keep looking good. WE can only hope that the inside will follow suit. Smile.

[Guest guest]

Still smiling,

Oxygen, semi-truck, ringing, pressure, weakness, numbness, shaking, vision, 9

months pregnant, Heavy backpack.

Smiling.

kam004@... wrote:

I think the article on Kim is the best I have read so far.

I, too, looked at the picture and thought...she certainly doesn't look sick.

HA!

I recall when I first got this....it took me awhile to catch on that people

couldn't see the battle going on inside of my body because the outside looked

fine.

You can't see aching, waking up feeling like a fully loaded semi-truck has

run you over, feeling like there is a ring around your head or the head doesn't

have enough oxygen going to the brain, ringing in the ears, brain fog, head

pressure, lack of oxygen, muscle weakness, numbness in the hands or feet,

shaking on the inside, blurred vision, light and sound sensitivity.

I tend to try and dress nice on my good days too. I like looking good when I

can.

About the only thing that shows up is when my face gets flushed and my

stomach bloats as if it is 9 months pregnant. And sometimes the strain of what

is

going on inside of my body shows up on my face. And, I also breath heavy a lot

with movement as if I am climbing a mountain in high altitude with an

overloaded backpack.

Keep looking good. WE can only hope that the inside will follow suit. Smile.

[Guest guest]

I was reading through the articles on the web site, and came across the one

where she talks about disabled parking. I struggle so much just to run

simple errands, and I am mostly homebound because I get so exhausted, and

have such horrible exacerbation of my symptoms when I go out. When I do go

out, I have to practically count my steps to try to limit my activity in

order to cope and complete the errands. It can be terribly grueling if I

can't find parking places near the store entrance. Sometimes I have to quit

before I've been able to finish things. There have been times that I had to

call my husband and ask for help in getting home. So I've looked at

handicapped parking with longing, and thought how nice it would be to be

able to park there.

I looked up the requirements for handicapped parking, and the law in my

state says that you have to be unable to walk more than 200 feet in order to

qualify for handicapped parking. I can walk more than that. I can walk

miles, if necessary. But that does not mean I'll be able to the following

day, and that also does not mean that I'll be able to think clearly while

I'm walking. When I do have to do more than a little walking, I make sure I

have my husband along in case I get to the point where I am no longer aware

of where I am and what I'm supposed to be doing. And he has to drop me off

at the door, and get the car and pick me up at the door afterwards, much of

the time. Sometimes I have to find a place to sit for a while, and let him

finish paying for things and then come and get me. Walking around the store

will cause a crash that takes me nearly the rest of the week to rebound

from. But because I can walk more than 200 feet, I felt I didn't qualify for

handicapped parking. Or if I did, it would not be without a major fight to

get it.

Now in reading the article, I don't think I could cope with people being

rude and harassing me for parking in those places. In fact, I could handle

that even less than having to walk to do the errands. I have almost no

stress tolerance ability, and emotional confrontations would probably cause

me to be unable to return home, without some assistance. In reading about

her experience with the police officer who harassed her, I know that if I

had to go through the same experience, I would have broken down and cried,

and been unable to respond. I would have had a major panic attack, and

started shaking uncontrollably with fear, and become incoherent. Then the

officer would probably assume I was on drugs, or something. So now, that

handicapped parking isn't looking so good to me. I think I'd rather walk,

than risk that kind of emotional trauma.

lindaj@...

Re: [ ] Kim Article

Hi everyone;

This is a nice site and right up our alley of conversation.

http://www.invisibledisabilities.com/

I found it by chance!