Wednesday, June 29, 2011

Not what I was hoping for....

So I had my appointment with the Neurosurgeon. I guess I set myself up for disappoint. Somehow I had it in my head that this doctor would have all of the answers. Guess what; he told me NOTHING new. I was so devastated that I started to cry in the appointment and then immediately following the appointment. I don't know why but I feel like I am following the yellow brick road, but mine is filled with potholes and deadends.
The up side of my trip was the time I got to spend with my dad!! He is the leveled head one- knew I was setting myself up for a world of hurt, but try and tell me that! I like how honest my dad is and how he allows me to be honest- even if he does not always like what I have to say.
I think through all of this what scares me most is the unknown. Will I ever be Beast free?! Will my life ever begin again? Who am I now? One of my biggest fears is that those I love and hold dear will not be around for me to get my life back together. I don't want to be this person for the rest of my life!!!
I have a follow-up appointment with my neurologist coming up to discuss the outcome of my trip to Jacksonville. Until then I will just try to breathe....

Tuesday, June 7, 2011

Fear of the unknown

I have always been the type of preson who is not big on surprises!!!!  I like to know what life has to offer and make the decision on how to proceed.  In my new life, I am learning that I have very little control over anything.  I spend my day at the will of the Clusters.  I can't workout when I want, go where I want, see people that I want.  I would have never thought that something so small as a "headache" could take over my entire existence. 
Last week I was supposed to go see a new doctor.  I was SO excited, maybe after a year and a half I would finally get someone to help me.  I was anxious also.  There is a double edge sword in this whole process.  I want to find something that will make me better, but all of the things I have tried have not worked to date.  So I am anxious, am I walking into another medicine or procedure that will not work?  I am also anxious about if I do find something that works!!!  There are so many unanswered questions about my future.  If I get better will I stay better?  Will I be able to make a life for myself again?  The unknown is very scary.  BUT I don't have to worry about that at this moment!  Why you ask; well my new doctor appointment was rescheduled for over 3 weeks away.  Now I know many say that 3 weeks is not that bad when I have been waiting so long; to me it is a lifetime!  I cried like a baby- I mean ugly crying so loud that I think my neighbors heard.  That time table, 3 more weeks, is 3 more weeks that I am at the mercy of the Cluster.  I am trying to put things into perspective and understand that I am just not in control!!!  For now I am just trying to breathe.....