Confusion
Loneliness
Fear 
Anger
Darkness........................................................................................................................................................

The bible says when I sit in darkness the Lord will be a light unto me... Micah 7 :8 a..... Oh Lord, please shine your face on me today.... It is dark here and I am afraid.... 

No sleep tonight......none 

Yesterday was overwhelming to me, I went to see the psychologist and talk a bit about seeing my Dr. and if that would be good for me..The meeting started out with her telling me that she was in a awkward spot because she works for Dr. *(*)(??"_) So, it was C.Y.A. (cover your ass) the whole time. ( don't get me wrong she was teary eyed and at the end of the meeting gave me a hug but I was not really welcomed there.)She never brought my file in, never wrote one thing on a piece of paper. I guess I wasn't really there. I expressed what I wanted from a meeting and she agreed as long as I realized that if I got to speak my mind than Dr. would have to be able to also, because he would be in a defensive position....I thought about that for the moment and then said excuse me no that won`t work for me because I don't want excuses or explanations all I wanted was to share my heart and tell him what he has taken from me and I don't have to listen to his side at all. I got up and left and thought well that answered that. I will not a have a meeting, there is no remorse on his part and I will not be heard. The Dr is offended that I haven't kept him in the loop and have had paper work stop gong to him.. go figure.. so that's how my day started. I felt defeated from the beginning and it actually took a lot out of me emotionally to do that. I was proud for saying no! I don't have to listen to anyone defend themselves against me I was there I know what went on. I think that was the first time ever I really stood up for me and said No I don't have to do what you say! so case closed!!!

Next, went to the meeting for The Three Oaks foundation and presented a check for over 7000 to the 2nd stage housing project they are breaking round for it soon. It was a nice way to give back. I was well received by the ladies and all have said if I need phone calls or picketing or anything to call them they know how to lobby the government. I felt loved and blessed to have such an amazing group of woman be willing to get behind me and hold me up if needed.

Next, a small bite out for lunch and then home, the exhaustion is starting to take a toll on me,,,I'm so tired but there is no sleep, I vibrate all the time from the steroids but I breathe, trade off.. I'm really hoping after this week that the swelling in my throat and airways goes down from the radiation and I can get off the damn things. but for now an evil necessity.
So some seen the post I updated yesterday about the miracle drug that could give a me quality of life for a while all with the small price tag of $9000,00 a month. How does one put a value on ones life am I worth 9 or 18 thousand dollars for a few more months. Do we fund raise, beg, borrow steel for a few more months ..this is not a cure but just helps the expiration date get a little longer....Now there is still a chance that this will get covered by my insurance company and I will find out later. That would be the cry of my heart...but there is still also the part where they will let me have it or not. Don't understand that part.. They want me to try other things first and use this as a secondary thing my question is why if this is the drug for my mutation why do I have to play with other stuff when you have it right there. I don't know everything yet and today should be an information day for me. I had several calls back and forth from the doctors office, drug company etc.. My wonderful Dr Rothenstein, I`m sure only had my file opened yesterday. He was working every angle he could find. He found a clinical test group that I met all the criteria for and he applied and I am already approved to be included, if we need to go that route also ( he even has me booked in for pre testing in-case I need to go into the trial ASAP nothing to hold it up he said), he figured he could use that as a first line so that maybe the drug could be the second line. He is smart and he is working very very hard to expand my expiration date. Again he uses words ASAP, expedite, rush, time sensitive, immediately and it makes me sacred and makes it more real. Is it that time sensitive is this as ASAP I think, maybe I don't fully realize how ASAP I am. The drug company wanted 4 days to process the from he said he wanted it tomorrow. So I am in great hands unlike the fumbling ones I have been in for the last 18 months of my life....Its nice to feel like he actually cares and he doesn't even know how wonderful I am yet....lol SIDE NOTE: My poor mother might have shocked him a week ago when she fell apart a little by asking him if it is possible to get the mother a scrip for medical marijuana...( His answer....he looked at her with his big brown compassionate eyes and said we can look into that possibility down the road dear....lol) I still chuckle.....

So there will be lots of information flying hopefully all good news but be prepared for some rants and raves.. Thank you so much for all the people who jumped on board for the fundraising.. If we need it we all ready have bands, clowns and silent actions etc.. you guys are freaking amazing,,, Hope you don't ever get tired of hearing this

YELLING FROM THE ROOF TOP..........................
.............................. YOU GUYS ARE FREAKING AMAZING.......
THANK YOU! THANK YOU ! THANK YOU...
NOW GO SHARE YOUR FREAKING AMAZING SELVES WITH OTHER PEOPLE TODAY!!!!!!!

`BTW I DON'T FEEL SO DARK AND LONELY NOW...DAM YOU R GOOD!