MONDAY'S RANT

[selmaS]

"Rainy days and Mondays always get me down".....so lets rant all day Monday- each Monday a different topic-we will poll for next weeks.....so this week lets do a favorite of mine.....doctors!!


post ur rant and get it out of ur system and enjoy the rest of the week!!

[RheaAnn]

I am so glad that I know so much about my own body and how Chiari affects me. I have known about this for 11 years. So when I went to a new NL due to my old one switching specialties, I immediately knew he wasn't the one for me! All I could think about was how a person being referred to him for the first time would be getting information that was out-dated and no longer valid. Those poor people getting nowhere! It reminded me of my first time getting diagnosed! He told me "Let's not even go there. Don't even talk about it! She will end up worse from trying to figure it out"

WHOA! How about giving a person unbiased information and letting them decide their future plans!

[selmaS]

  My rant this week is waiting...I hate to wait for Drs, for answers and for someone to drive me newhere...ugh

[jiggle93]

My Monday Rant...at least so far, its still early ;)....is trying to get friends and family to help donate $ towards the Chiari walk. I am only asking for one dollar donations, and everyone "likes" my awareness photos and info, but wont throw any coin.  I thought asking just $1.00 would be an easier donation than asking for $5, or $10.....guess I was wrong!   I guess it just bugs me because I see so many others giving to other causes, (or people that want others to help pay for their children to join clubs), and no one seems curious about Chiari. Maybe I'm not good at advertising :/  

On a positive note, I actually had a really great day and got so much accomplished- the pain was kept at an uncomfortable distance which allowed me to get busy on chores!  Happy Monday Friends, wishing you a great week!
Jiggle

[selmaS]

  I know what U mean...I can not get them to post a Chiari awareness pic on their FB page...they will post things for Cancer and all these silly things like post this if u love ur mom...etc....but  not one has posted  or shared a pic for Chiari....it peeves me

[selmaS]

  Ok...this week all I can say is ouch....I can not get comfortable still....not sure what this is, but when laying on a hard floor is better then a recliner something is up....

  

[jiggle93]

*warning* about to have my first true rant!!!   I have been using my FB page to share chiari all month. I change out the pics every few days. I found a tattoo from a chiairian that I thought was very beautiful and it was placed just below her neck. She had a zipper scar and it just explained her fight so beautifully. I posted it. It got a few responses as people thought it was mine, which I explained wasnt- but loved her expression of her personal fight.
My DD decided to announce to the family that I am now obsessed  with chiari and everyone is sick of it.  And that if someone used a pic of hers she would be furious, how its just wrong!
Well, that was enough to shut me up for the entire day, and still so hurt this morning. I do not show my pain to them very often, even deny their questions of if I am in pain when they think I am.  I do everything possible to not make every day about me, I avoid the subject as much as possible by keeping the conversation short and even redirecting the conversation to anything else but me.  I am now wondering if maybe she is right, maybe everyone is sick of hearing about it.  But I then ask, why is this different than someone who is fighting cancer. Why is okay for family and friends to be fighting cancer and everyone wants to talk about it, but chiari cant be? She is always such a caring person to everyone, even starting her nursing classes while still be a Sr. in high school.  She is planning on being a nurse in pediatric oncology.

I think I am just so hurt that it came from my DD, and that of all places I feel safe in our own home to be a chiari fighter. To allow the bad days show, even tho I do it with a smile during the worst days.  So now I find myself wondering where I go from here. She has been so short with me as of late, even telling me what I'll do for her instead of asking if I would be able to what she wants. I am a person that builds walls in the blink of an eye, and I am fighting very hard to not put up the walls!  Do I hide chiari even more now, do I not attend the chiari walk on Saturday?  I just feel so alone right now, and this is a new feeling to me.   Why oh why was I not born with thicker skin?  
Sorry for the sob story...just had no one to vent to, had to keep this bottled up since last night...woke up in so much neck pain from not relaxing I guess.  Hope everyone else is having a wonderful Monday!