Wednesday, May 2, 2012

California Study - Completed

I haven't posted in a while. I guess it's time for an update. I participated in the imaging study held by the famous Dr. Peter Goadsby in San Francisco. The most nerving part about the whole ordeal was the flight there and back. I don't like flying and was totally out of my element. My mother in-law went with me and I am VERY thankful for that! Dr. Goadsby is a very brilliant man as well as the researcher he has in charge of the VS study, Dr. Christoph Schankin. I personally got to speak with both of them and I must say Dr. Goadsby seems very intrigued by the whole VS thing and seem confident in finding something, or at the least making a lot of noise so that other Dr's will study it as well. I don't have any other news to put forth to this, other than that Dr. Schankin recently spoke about VS at a Neurology Board meeting in Louisiana recently. I am not sure what came about it at this point. I recently fell ill with a stomach virus and have since been plagued by daily headaches/migraines. ( I hadn't had a migraine or a headache really in over a month.) I am hoping my medication doesn't need to be adjusted, but will do what is needed. I think it's been causing me to gain some weight lately and I DO NOT like that at all, especially since it's bikini season!!!!! :) I liked being able to eat what I wanted there for a while.... maybe it's because I am approaching 30.. could that be it? Oh hey!!!! I have 1 follower now, and that is enough to make me want to celebrate! Hi Follower!!!!! :) Enough of my senseless migraine induced rambling.... time to get back to work.

Thursday, February 23, 2012

California

I have been selected to go to California and participate in a brain imaging study for Visual Snow. A world renown neurologist is leading the study. I will be heading out next month and have not been looking forward to the flight. I really dislike flights. Hate may be a better word to use. I am not sure if I am more afraid of the flight or the tests.... either way I am scared crapless. Yes, I said crapless!! My mother in law is going with me, which is awesome! She is a great woman and I am lucky to have her in my life. She is flying all the way from Michigan just to fly with me to California for a few days. :)

Hopefully the brain imaging will give the Dr. an idea of what part of the brain is affected and also a next step in a line of possible recognition and one day treatment. I have always had an inkling that I was meant to do something big in this world, and getting Visual snow was not my idea of that something. Maybe doing the brain imaging for an illness that isn't widely known was it. At any cost it sucks..., my life that is. I try to rationalize why this happened to me and how things could be worse. And it's true, lots of things could be worse. But I can not justify why this happened to me. Why did the events surrounding the time line of when this happened to me, have to have happened.

Every area of my life has suffered a blow. I am a mother, yet I feel like I am not fit to raise a puppy, let alone a child. I go to work, but spend loads of time in la la land remembering better days in my past before VS. My own relationship is failing because A.) We have no family here who can watch our son long enough to give us a break, and B.) I have a hard time with expression of feeling and my husband thinks I don't appreciate him. He says I worry too much about my disorder and that 3 years is long enough to get over it. Boy, isn't he lucky I wasn't diagnosed with a rare disorder that has no cure? Oh wait.... I was.... Oh well, I should be able to get over it in no time.

You know, I don't think anyone owes me anything. But the least they can do is let me get on the way I know best. If I am up and walking around.... then hallelujah. My world has been full of knock me downs for 3 years now. I am making the best of it and if YOU are taking it personal....don't flatter yourself. I would trade places ANY DAY!!!