Re: being crazy and feeling sympathy

May 16, 2007

Terri and ,

I can totally relate to how you feel. I, too, am tired of the dark circles, bags, and how it ages you and makes you look so tired all the time.

And, yes, I get shut down by people so I have started to become quiet and only say I am hanging in there as people ask, but they really do not want to hear what you have to say. Even my daughter does not ask me how I am doing and she tries to ignore the fact that there is something wrong as she says it is too depressing and people do not want to hear it, so I keep to myself. I do have 2 close friends that really do want to hear how I am doing which gives me someone to talk to but it helps so very much to have this group and to be able to share as we all are going through the same thing.

I have learned so much from this group's emails on symptoms I have been having for years and I could never figure out why I have the foot thumping and pain, or why I have the vein pain and thumping and doctors could never tell me other than I am gelling up years ago. So I was always so upset when there was no new research on sarcoidosis.

KathySee what's free at AOL.com.

May 16, 2007

,

I can sympathize with you on this one. My before and after photos are

horrible. Even though my facial paralysis comes and goes you can

definitely see it coming and going. The bags and dark circles are there

all the time though and the prednisone has made my face round.

I also get shut down when I want to talk about how I feel and because

they can't see it they don't want to hear it. I read a book about a

lady with multiple sclerosis and in it there was a chapter that was

called " But You Look So Good " . Just because we still look good in

everyone else's eyes, doesn't mean we don't feel like shit and they we

are not sick.

OK , you are not crazy. If you are, we all are.

Well, take care and try to keep it together. We are here for you.

Terri

>

> I was so touched by the post about feeling crazy because nobody can

> " see " our problems. I was really shocked the other day when I saw a

> recent photo of myself. The bags under my eyes and the sagging skin

> from my facial paralysis was shocking. The change has been gradual so

> many people take it for granted but what I saw was illness. It made me

> very sad. I wanted to throw away every picture of myself. And my

> friends simply don't want to hear about any of it any more. I get

> " shut down " if I start to mention anything. So all the fear, anger

> just gets bottled up. Thank the stars you are all here. I really would

> go crazy if I couldn't read you posts!!!!!

> The illness has definitely made me more aware and sympathetic to those

> with problems. Sometimes I think I would like to be a patient advocate

> or something - to help people who are stuggling with the medical

> system. It can all be so frightening. But I'm afraid of being around

> sick people because of all the drugs I am on. Well, enough rambling

> for today.

>

May 16, 2007

$ and all, I have had the same problem with those dark cricles under the eyes. They were so nasty that I tried some of the new stuff that's out there for them. I have had good luck with Hi-Bright with Haloxyl. My dark cricles are much better and people say I look better...at least on the outside and at

this point I'll take anything I can get. I ordered it from H.S.N. I've also heard that green tea bags are also good for dark circles. The bottle of the stuff isn't that big for about $20-$25 but you only use it where you need it so it lasts a Long time. hugs S. wendy_cidp wrote: I was so touched by the post about feeling crazy because nobody can"see" our problems. I was really shocked the other day when I saw arecent photo of myself. The bags under my eyes and the sagging skinfrom my facial paralysis was shocking. The change has been gradual somany people take it for granted but what I saw was illness. It made mevery sad. I wanted to throw away every picture of myself. And myfriends simply don't want to hear about any of it any more. I get"shut down" if I start to mention anything. So all the fear, angerjust gets bottled

up. Thank the stars you are all here. I really wouldgo crazy if I couldn't read you posts!!!!!The illness has definitely made me more aware and sympathetic to thosewith problems. Sometimes I think I would like to be a patient advocateor something - to help people who are stuggling with the medicalsystem. It can all be so frightening. But I'm afraid of being aroundsick people because of all the drugs I am on. Well, enough ramblingfor today.

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May 18, 2007

Wendi,

The isolation that chronic illness creates is one of the biggest challenges that we face. Our friends and family don't want to hear about it- because they feel so helpless - and they want to stay in their safe place of denial.

If you've not read Piburn's ONE MAN'S JOURNEY ALONGSIDE HIS CHRONICALLY ILL WIFE-- I highly recommend it.

another helpful booklet from the Invisible Disabilities Advocates.

It's called: But You LOOK Good! and is available at http://www.myida.org

I've given copies of this to friends and family, as well as the Caring Ministries at church.

One of the other websites that I enjoy is http://www.butyoudontlooksick.com

Both of these are excellant to share with those who are too caught up in their place (aka denial) so they aren't available to listen to you.

It is so very hard and scary to see those pictures of ourself. Yes, we've changed. This disease makes you grow-- in ways you didn't realize you had to grow. I think that if we can stay open even when they can't that eventually they have face the reality. I know that it's hard-- because friendships do change so drastically. That's when we find that we need a new network of support-- and I'm glad you've found it here.

Hugs,

Tracie

NS Co-owner/moderator************************************** See what's free at http://www.aol.com.

May 25, 2007

OK, you

all this is not a sale, however, I too have those ugly dark circles in the bags

that hang from my eyes, but there is hope,

I have

two products that change the total appearance of my looks, I use a “firming”

cream, it truly does firm the hanging bags and gives me an instant face lift,

and a highlighting pen, that has some light reflecting property that makes my

dark circles history, really. When I “do” my face or “put it

on” as my husband says, my appearance totally changes, I should send you

a before and after picture. So of course all I hear when I’m out, is “You

look great, you must be feeling great, I’m so glad”, I just nod

and leave it at that, like you all said they don’t want to hear it, even

my husband doesn’t. but I have two awesome friends that I can pour my

heart out to, one has Brittle Diabetes, and the other has Graves Disease, so

they totally understand, I think of you all often, just don’t get on the

emails often, my son is graduating this Sunday from High School so life is busy!

Love to all, Marl

a

Marla

Bramer

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of mosaicgirl1

Sent: Wednesday, May 16, 2007 6:33

PM

To: Neurosarcoidosis

Subject: Re:

being crazy and feeling sympathy