This statement has always puzzled me. I mean I know I feel better when I feel good about myself. I feel great when the people that I'm surrounded by are happy go lucky. I don't like this complainer person that I've become lately.....
The last couple of days have been a huge eye opener for me. I had a seizure (maybe not according to my Neurologist), had an emotional breakdown, and had an EEG. Now, with the three comes one good, I got accepted into the clinical study that I wanted to. They are going to fly me to Bethesda, MD twice a year starting in January. They will run all kinds of tests at their cost. I will in turn get to take copies to my NS and he can use those. If they find another study that will benefit me they will give me the opportunity to join. This is going to save us tons of money and give me access to worlds of information that I could only dream about obtaining. These doctors are the best of the best, as my NS put it. He actually trained with the head NS in charge at the NINDS. I'm pretty excited about this.
So, things are starting to look up. My meds are upped. I'm sleeping a little more. My mood is getting better my life is going to turn around. Communication is going to be my goal from hear on out. I will voice myself more to my doctors and to my family. They all deserve to know exactly how I feel when I'm feeling it. There's no reason I need to be going through this alone and there's no reason for me to be strong all the time. I have feelings too and I need to talk about them too.
So, many of you know this is my new normal. I will have my symptoms for the rest of my life. They will not get better only funnier (worse). I need to adapt my life to them.
New symptoms since surgery:
*slurred speech (occasionally)
*blank stares/lost in thought with no thoughts
*short term memory loss
*burning sensation across forehead
*loss of balance occasionally
*tired(not the same as the fatigue)
I know there's more but I just can't think of it right now. I have been battling a bit of depression too.
I am giving myself the goal to adapt to my new normal and try to enjoy the comedy in it. It's all I can do. I will continue to wake up every morning and tell myself that I love and respect myself just the way I am. I will start my days with morning hugs and kisses from my boys. I will find beauty in every moment.
May 22, 2009
9 years ago