i need help from my chiarian family

[Sexybare]

I am still having a hard time dealing with the fact that i have chiari. And in pain daily. I need some words of wisdom. I need to hear some encouragement. I am depressed today with headache. Ugh how do we keep goin?

[irislita]

Dana.i think we all understand u.i am not sure i can give u some wise words,but i feel on the same road with u.it takes a lot to accept and i didnt accept yet. Sometimes and i am honest with u i think and hope that all my symptoms are a non chiari issue and its not a nervous system disorder...but thats a lie...i just dont want to have this forever and adopting is really hard for me.this morning i saw people walking to work and then this beautiful woman was passing my window...she was beautiful for me as she was smiling,shiny,taking her mp3 and smiling to the music...just like i did 1year ago.but hell do i know what life she is living or what she will have to face in life.i have to give up comparing me and thinking of what i was...things for no one will never be the same. I can only tell u that i every day i wake up i feel blessed with my amazing family,the few really good friends that are left and a boyfriend that with his love is making me go through all of this.he tells me so often that i am the most important thing in his life and that i am special.i just see a 28 year old woman,sleepy,hurting....but from all this ****.i noticed i became a better person and see different angles and enjoy little things so much more....i know that nobody has chosen this journey and it is challenging every single day...but i think we forget our values thru the pain and forget what we are still keeping up with all this things going on.i send u a big hug...and sorry if i might couldnt give u advice...just wrote down my thoughts.

[cash242]

Hey there I am so sorry you are hurting so bad but glad you have this amazing family! The great news is you have dr oro on your side and you have answers to your pain. It will get better it just may take a bit but we are all here!

[jiggle93]

Well Sexybare, I thought I post something here but everyone beat me to it. What I was going to say has already been said!  I also live by the one day at a time rule...sometimes its one hour at a time!  
And I too have decided that I was born with this so there must be something God intened me to do with it.  So, I try to live my best life that I can for each day. Without even realizing it my attitude touched a friend of mine. She couldnt believe how positive I was even on a day that I was physically having a hard time. She said how can you be so strong while your body is in so much pain? I told her I hadnt realized I was being strong. I told her I cant control what it does to my body, but I try to control my mind set about what its doing to me. So for me, this is how I fight back! If I must be sick, I'm doing it my way!!  
And for those days that are really bad, I lay in bed and repeat- tomorrow will be better!  It may or may not be better, but it keeps me hopeful for the next day!
Plus having support on here keeps me sane! Sending you a HUG today!
Jiggle

[selmaS]

  Hi, there are stages to all of this...the dx side and the post op side and they r pretty much the same....

  We go thru denial....

   then depression.....then anger.....then acceptance........

  We can not skip a step as it helps us prepare for what is to come.....

  But knowing u r not alone, and u have many friends that know just how u feel...can help.

  Music is a great healer....as Mel mentioned above....take a look at this link at how music can heal-

http://www.youtube.com/watch?feature=player_embedded&v=NKDXuCE7LeQ#!

[linnielou232]

My heart comes to you with your pain.  It is a journey most of us chairian have to deal with sad to say.  I can say though I'm coming up to my 2yr anniversary of my 4 surgeries so I'm further down the road of recovery than you, but can tell you it does get better.  Every day is a different day for us. Just try to look at a good thing.  I had a really bad day yesterday due to it was my DH birthday and we had plans to go out to dinner with family.  When he got home from work I was laying down as normal but I was trying to get rid of a horrible HA.  Sad to say we didin't go out to dinnner just ordered out, but the good thing was is that my family understood.  It all works out for the good.  Hope your day is going better.   Don't let it get you down.  

Linda :)

[STL5]

Take it one day at a time.  Sometimes you need to take a step back and look at the whole picture.  Even though you are in pain and dealing with a life altering condition there are others dealing with more.  My mother is a two time breast cancer survivor.  I pray every day that I never have to go through what she did.  My mother in law died from breast cancer.  Her last few weeks of struggle will haunt me forever.  We have a place to live, food to eat, and people who love us (although they may not always understand).  When I was in Asia I saw homeless people digging through trash for food or standing outside restaurants asking for your left over food.  Children were constantly begging for anything that you would give them.  It broke my heart seeing the way they lived.  Try to find something each day that will bring a smile or laugh:  a beautiful sunrise, your child’s stupid joke, poke fun at your sister in law who word flip flops with her beautiful white wedding dress (not to her face).  Most of all vent when you need to.
I pray that you make it through today and tomorrow will be a much better day for you.

[Rylanesmom]

:) also knowing that you are a Christian resurrection comes after cruxifiction and even Jesus said take this cup from me.  Even Jesus had moments that were too much for him.

[Rahe28]

I am still dealing with the fact that I have CHiari as well, and I have known for 3 years, well my 3 year anniversary of finding out just passed. IT is so hard to accept that this is never going away. It is exhausting and at times so consuming that you just wish it would all end.

In those times, I think of my children, and just thank GOD that it is me and not one of them. I freak out everytime one of them says they have a headache or a body part hurts thinking oh no, what if it s  Chiari.

Someone once told me to choose my battles wisely.... ~ and this battle, I choose to fight and to be strong. Not only for my children and my hubby but for me. I may not be super woman anymore, but I can still be a woman, and I can still be a wife and a mother as  long as I choose to fight !!

My words of wisdom to you is~ choose your battles wisely!!
Choose to fight this battle, and not to let it fight you.

I know this is easier said than done, and I know how hard it is to accept. Living is misery is hard, and can be so depressing and so exhausting. Remember that your children dont want super mom !!! They dont care if their sandwiches are  cut like hearts, or if you make them....as long as they get one....alll they want is YOU !!!
I am just trying to accept that I was BORN this way....and that is okay with me. Nobody is perfect and for some reason, GOD chose to make me the way that I am. which means that  HE must know that I can handle it.

Gosh,I hate it when people preach to me, I hope you dont take it that way....this is jsut the way that I am trying to accept that I have Chiari, and I wanted to share it with you to let you know that you are not alone !! Both of the songs that Rylanesmom suggested are aweesome and I have listened to them both countless times !

You are in my thoughts ....not just today but everyday, as we both try to acccept this Crazy thing called Chiari ! Best wishes and love to you my Chiarian friend.

[Rylanesmom]

This one helps me too

http://m.youtube.com/watch?v=QSIVjjY8Ou8

[Rylanesmom]

Praying for you...we all feel that way at times.  Listen to the song.

http://m.youtube.com/watch?v=qEz2PsLJ-RI