Just One of Those Days

Hi Everyone,

I am still around, sorry to have not been on lately. I just have been in a funk and am really torn about my impending surgery. I just don't know what to do and I am at a point where I feel lost. I hate the way I feel...the anger, sadness, frustration, being in denial, being at odds with myself and taking it out on everyone in my path. I want to find the old me again, but the more I read, study and converse about this horrid Monster we call "Chiari"...the more I realize the old me is forever gone . She is now replaced with this frail, tattered copy of what used to be and fiber by fiber is slowly fading to nothing. Please tell me that I'm not losing it, because I have so many that depend on my stay cool and collected attitude that my fear is I can no longer hide behind this mask. So for now I hide in my room waiting for the sun to set and hope for sleep to take the place of my insanity. Praying that tomorrow won't be another one of those days...

Thank you. I just needed to get out my feelings and have someone to KNOWS hear them. I am so glad to have found you. I WILL call when I can do so without interruptions of my 3 wild boys. It's hard for me on the phone as I have told you before. I even just usuallt text message on my cell 95% of the time.

Thank againg for your understanding.

Much Love,


Dear Crystal:

Welcome, 1st off....Sorry I haven't introduced myself sooner..my name is Lori..I am 3 hrs from you on the NY Thruway!! Exit 41!!!

You are feeling the most of us around here have and still do at times!!! Lost, frustrated, waiting til bedtime to come..You are not losing it..nor are you crazy,lazy or any other such negative thing we seem to put in our heads!! being a mom as well, I know how down I get on myself for not being 100% perfect....

You have a lot on your plate right now...surgery may be an option ...I had decompression 2 yrs ago and did farily well...meaning some of my symptoms have gotten better and some have not....over all i would do it again...

My balance is still off some days and I struggle with visual problems and head pressure..I was on Diamox and unfortunately went into a MAJOR DEPRESSION..so had to go off it...

I am glad you found this place..everyone here is very honest and caring , I have found...

please know you are NOT ALONE..that alone feeling is the worst pain..i think.

God Bless,


Thank you all for the support…Lord knows I NEED it. I just started therapy today and my therapist says I am going through the “grieving process”. Just as if someone had died. I am grieving the loss of the “old me” and I totally feel that. I just wish that there was a 100%, no if’s, and’s, or but’s that when I got surgery I could go back to the way things were or even better. The Dr. says 80%, but that is just not good enough for me…for my family. We deserve 100 and 10%!!! Surgery is just so hard for me to justify if I am only going to get some of my symptoms elivated and have to still live my life with the same precautions as before. Having the neckbrace for car rides, crowds and long walks. No being able to be active or being able to pick up my boys to hug them or dance with them or to comfort them. I understand there are ways to have them come to me and crawl onto my lap for hugs, but that just won’t cut it if the fall and scrape their knee. I just want to be their Mom and do the things Moms should do. I feel so guilty for cheating them out of this. Then again I would feel worse if I had the surgery and God forbid the unmentionable happened and they are left without a Mom at all. I just couldn’t do that to them. So here I am being tugged in two directions and I feel that it would be so much easier if the choice wasn’t mine to make. I have already caused enough financial and emotional damage to my family as it is and just can’t bear to add any more. Well now that I have blabbered and blubbered…I just really wanted to say thank you for making me feel “normal” here.