Up and Down...My Emotional Rollercoaster Ride

The first couple days after my diagnosis I was doing just fine, but then it started to sink in. As the days, weeks, and now months are sinking in I am starting to realize that I can't do things I used to be able to do. I used to just joke around and say it was because I was getting old or I just needed to sleep more, but now I know that really isn't the case. I am losing my memory and some of my motor functions. I often find it hard to say what it is that I need to say. I have had this headache forever, I am used to the annoying mind blowing headache, but I can not handle not being able to do the simple things that I have always been able to do. I hope that someday I will get over myself and learn to live with this.

I called Dr. Oro's office today to see what the status on everything was and wouldn't you know it...my info still hasn't been sent there yet. So I had to deal with the rudest receptionist on the planet for no reason only to start over again. Sometimes I wish I could just inject a little bit of this crap into all of these doctors who think I am a nut job just so they can understand how I feel for a few days, maybe then there would be less suffering by all of the Chiarians out there that have to go through all of this crap just to get somebody to listen,

Well I suppose I should stop rambling and go to bed, I have a sick little one that needs a doctor's appointment in the morning. Hope everybody else is doing well! :) Thanks for listening to me vent! :)

Hopefully once your info arrives Dr. Oro can see you ASAP. It's so hard to when you feel terrible and keep getting the run around! Sadly a lot of us have been in your shoes. I hope your little one feels better asap!


I hope that you are feeling better...everyday in pain is no joke..and for you to have to deal with a nasty receptionist is the straw that broke the camels back, I bet...

All the wiating you are going through in order to have a game plan for your treatment has to been nerve racking..but , once you get to see the NS and things fall into place for treatment, I think you will feel better.

Most of us here can 100% relate to your feelings, I know I do....we are here for one another and NEVER HESITATE to share what is going on...the gang here is great !!!

Take CAre and keep us updated.