Re: Invisible Disabilities.org

January 29, 2009

I didn't mean to post information on donation requests at the end. I

didn't notice it there, so please ignore, as it is against group

rules. Thanks

>

> I met someone online that started this group because of his wife's

> disabilities. Maybe some helpful information there:

>

> http://www.invisibledisabilities.org/

>

January 29, 2009

That is a great name. I used to call it " non-apparent " disability. It

is hard to be " un-energetic " when you once were or not carry on

activities you once did, vigorously. Bravo.

When people would challenge whether I was " really " sick and I " looked "

so well, I would say " Thank you, Estée Lauder " because I refused to

ignore " how " I looked when " how I felt " was horrible and

weak.

That is one of the hardest things of being sick without a cast, a cane

or a crutch. The way you " appear " visually to people, including

doctors who note " well-appearing " when it is not " how " you feel.

Maybe docs will be " enlightened " by your efforts.

Good for you!

> >

> > I met someone online that started this group because of his wife's

> > disabilities. Maybe some helpful information there:

> >

> > http://www.invisibledisabilities.org/

> >

>

January 29, 2009

Where I used to teach the elevator stayed out of order and I was in so much

pain. My body was filled with so much inflammation. I used to hate when the

stairs were working Ha!!

________________________________

From: ginloi <ginloi@...>

Sent: Thursday, January 29, 2009 9:02:52 PM

Subject: [] Re: Invisible Disabilities.org

That is a great name. I used to call it " non-apparent " disability. It

is hard to be " un-energetic " when you once were or not carry on

activities you once did, vigorously. Bravo.

January 29, 2009

I can relate to that. People have said how well I look. One said

because I wasn't overweight, felt I must be exercising alot. Well,

when I had cancer, I became VERY skinny. Cancer utilizes your food,

but you get too skinny but on the way there, you look just slim, but

you cannot see pain on the outside or anything else. Doctors need to

come to their patients with an attitude of acceptance that what you say

is the truth. I have a job where I need to help people with problems,

but if I don't believe them, I could make things difficult for them,

but I chose to ALWAYS believe them unless there is no doubt, because I

just think you can't stand in judgement on whether a person is truthful

or not. Doctors shouldn't ever decide you aren't telling the truth

unless there is absolutely no doubt because **they stand between you

and treatment that only the doctor can get for you. You can't arrange

for tests yourself. You can't get the medicine yourself, so how cruel

for someone to listen to your story of suffering and then not test or

treat, because they don't believe you. It's the worst kind of

inhumanity.

>

> That is a great name. I used to call it " non-apparent " disability. It

> is hard to be " un-energetic " when you once were or not carry on

> activities you once did, vigorously. Bravo.

>

January 29, 2009

I know everyone. That's one way this board is so validating. We all

know what each other is going through.

Some of you have probably had this happen to you also, but just the

other day I managed to crawl out of bed and drag myself to my

daughter's orthodontist appointment. Obviously, not a party for me,

and I parked in the handicap parking spot near the door. Don't you

know, when I came out of the building there was a " hate note " on my

window stating, " You both look pretty healthy to me! Who's the

handicapped one? " (Despite my placard hanging in the window)

That's it. No name. No phone number or email address that I could

respond to. I took a moment to look around the lot to see if I could

spot the culprit that left it, but I didn't see anyone. You know, I

thought, I wasn't in there that long. If they weren't cowards, they

could have followed me in to ask me, or waited for me to ask me when I

came out. That would have been a very pleasurable opportunity for me

to lay into them with my sob story, but no! They were too cowardly to

allow me the opportunity to respond. Obviously they didn't want to

know the answer. I wanted to ask them why they cared? Were they

really trying to help disabled people, or lash out at those that park

illegally in our spots? Because if so, I can understand that, but

they went about it all wrong. Instead, they basically discriminated

against the vary group of people they are supposedly trying to

protect. But I don't think that was even the case. They are probably

just an angry bitter person. No matter what I would have said, they

probably would have argued against it.

I got in my car and drove home determined to not let this idiot get to

me, but I couldn't help but have the same thing keep going through my

mind all the way home. ...What does a disabled person look like? How

do you describe or define a disabled person's appearance? Really.

Can you see a heart problem in someone's eyes? Can you see nerve

damage or cancer in their smile?

The fact was, that no matter how I told myself not to give that guy

the benefit of upsetting me, it did upset me. I get tired of trying

to defend myself....to doctors, total strangers that mean nothing to

me, ...even family. Tired of always wondering if people are looking at

me funny when I get out of my car, after parking in a handicap space.

Why is it that when people can't see something, or do not have proof

of something, their first instinct is to not believe it? Yet millions

of people believe in a higher power called God (amoung other names.)

Millions believe in ghosts or an after life when there's no actual

proof they exist. Why do we hesitate to believe our fellow man when

we know that diseases exist that cannot be seen on the outside of the

body?

I just know that I am so grateful for all of you on this board and the

many other victims out there that refuse to play the victim, and ban

together for strength and encouragement. Whether we like to admit it

or not, we need each other to understand. It's good to know that

others are out there that do. I only pray that 1 day we will all have

a cure and be able to share happy news from then on.

Angie

>

> >

> > That is a great name. I used to call it " non-apparent " disability. It

> > is hard to be " un-energetic " when you once were or not carry on

> > activities you once did, vigorously. Bravo.

> >

>

January 30, 2009

I agree, just last month my doctors removed me and my children from his

practice. He gave us a 30 days notice. Now we have to find a new doctor.

________________________________

From: barb1283 <barb1283@...>

Sent: Thursday, January 29, 2009 10:20:18 PM