Chiari Online Support Group

How do you explain Chiari?


#1

I have given out pictures, the Conquer Chiari handouts, printed off material, try to explain what it does to me, and my symptoms, books, etc., and my mother thinks that Chiari is located in my chest! Really!

She is not senile so, you tell me how it went down to my chest?

Why do people not get it? If it was a visible disease, or a heart condition, or if I had a big wart on my nose, then there is no question ask. Do you think it is because some days we may have a decent day once in a blue moon and might look half way presentable. (Now folks, I try to put my face on and brush my hair, and brush my teeth, but I still look pale and look like I am warmed over). So tell me, why is it so hard to believe that Chiari is real. Is there not enough information out there for people to read? I do not drive on the days that I have "one of my days" so folks don't see me walk into walls, fatigued so bad I can't get up, migraine so bad, my eyes are black, my arms and shoulders feeling like a 100 pound weight is on top of them, I get my sentences turned around and my tongue too, that I don't understand what I am saying. Then the dizziness and vertigo, I don't need a amusement part, I have it right here at home. My ears are buzzing and ringing too, and I may need a hearing aide soon. Reaching for my Kool aide and missing it, or missing my mouth. And, sometimes when our girls call home, they do not know it is me on the phone, because of my vocal cords can't get the sound out right. Getting choked on soup and liquids and gagging. Neck and shoulder pain so bad, all you want to do is stay in the lazy boy all day. And the joys of going for weeks without sleep.(Sleep Apnea). Another thing, is my eye sight, it is so bad, I have to get right up on you to see your face, then I step on your toe. I can't work a full time job, because Chiari knocks me back down, so I work at home and in between my symptoms, I might get my work done. Just pray that you don't sneeze, you know what happens then!

Folks think that when you have the surgery, you are normal again, Help me out on that one, the ones that have had it! You should be 100% better once you have it, they say.

Why is it so hard for our family to accept it? We have, we are learning to live with it. We can't deny that we have it. It says so right on the papers we have and we are told by our doctors. We learn and cope. We adjust and make do. We grieve over what we use to be. We try to help others. They think we will eventually get better.

We have to live with it each day, they don't so therefore, their voice don't count.

God Bless you my friends, I couldn't keep my sanity without you all. Love you all. Abby


#2

This seems to be a topic that most other people, don't want to acknowledge.

Do they think; just maybe if we don't talk about it-ever, and go about life as if "nothing" is wrong, - even though working is impossible, than . . . . . nothing is wrong?!?!?

And as you said above, they think all this without doing any research.

Theres has to be a better way to raise awareness, for this invisible disease, and gain better support and understanding especially from those closest to you

There are a few of us that are here for support, whatever the need

The pamphlet idea is wonderful! Even in Genereal Practitioners offices, as its often mis-diagnosed

I support Chiarians 100%