Re:digest number 5930

[Guest guest]

My name is Kayci, 28, and I live in the Chicago suburbs. I know exactly

the feelings of frustration and loneliness, even when with family and

friends. With my major diseases (especially chiari- a malformation in which

the

skull is too small for the brain and therefore the brain herniates into the

spinal column, causing severe pressure headaches and brain stem infringement.

The only treatment -which often helps minimally- is decompression

surgery, during this procedure they enter the brain through the back of the

skull, which is covered by hair once it grows back. so we " chiarians " often go

through the " well you don't LOOK sick! " Comments. It is very emotionally

painful to not have your physical pain recognized.

Before I was finally diagnosed, I went through 9 years of medical

personnel ignoring my repeated claims of pain,. I am lucky enough to have 3 best

friends and a large family whom all support me, but they don't know what I'm

going through, they can't. They may witness, and empathize... but the only

comfort I truly can receive is from others that are going through similar lives

of chronic pain, and dealing daily with how hard our lives truly are.

Feeling alone and lonely is in no way silly.

if you ever need to chat, please feel free to e-mail me privately.

Kayci Carson

(Zabreen@...)

Liza wrote:

It seems when you have health issues that people either ignore you

or they pretend they dont know what your going through.I have

found out who are my friends since I haven't been very well

and that is not many at all. I do have my family, but sometimes

I feel alone and lonely, sounds silly I know.