My third opinion's second opinion...and I still refuse to listen :)

Procrastination has always been a skill I excel at...  I knew what I wanted to post about and even had a great image to put in this post but honestly I have felt crappy lately and a little sorry for myself. We are all entitled to a pity party now and then and my party is over :)...so back to my story!

Where was I? ...

I returned home from Denver after hearing I was going to have to wait for Dr. Oro to get a second opinion.   I'd like to say I will never forget the week after the visit while waiting for the results but honestly I did.   I'm not sure if it was shock of the whole Denver trip or just another pity party but I don't remember a thing.   I do remember however getting a call from Dr. Oro that I missed....UGH!!

I hate that.   You wait for a call...THE call and you sit by your cell phone non stop, constantly checking to see if your ringer is on or if it rang but you just didn't hear it.   The ONE time you are away from your phone for 2 minutes you miss the call you have been waiting on...it NEVER fails! 

So he left a message saying that he recommended cervical cranial fusion and brain decompression...the news I was most afraid to hear.   He would follow up the call with a letter...

So,  there it is.   The guy in Wilmington suggested it....the guy at Duke suggested it....the guy in CO suggested it. 

Have I gotten this surgery yet you ask?  Nope!

1. Because I am terrified of it.  
2. Because I am not THAT bad off.  Why would I want to go through this invasive surgery that would decrease my quality of life if I am NOT suffering?   
3. Because I don't want to! 
4. Because I have lived this way for 30something years :)  and I am still alive and kicking. 
5. Because no matter how many times people have told me I need this surgery, no one has been able to tell me what will happen if I don't have it.  
6. Because I don't want to!!! 

Will I eventually have to get the surgery?   Probably.   But I'd like to think I will know when I have no choice.  There will come a day when I see the signs that I am getting worse and I will have to face this fear....
But today is not that day.

So...I am all caught up! You know my journey that has brought me here...

I learn more about these conditions and myself everyday and am finding ways to live with it....live through it.

So my journey continues and so does my blog :)   I have learned a lot over the past year through my research and have a lot more to share.

My goal....add every bit of info I have found on a million web sites to this blog...if one person is diagnosed with these awful conditions comes to this blog and feels a little less a lone....or knows a little bit more than they did before... I will have succeeded.   :)