About Me

I am a 37 yr. old mom of twin boys who turn 13 Feb. of this year. Back in Feb. of "09" I was dx with a rare brain disorder called Chiari Malformation type 1. Basically my brain is too big for my skull and it protrudes down into my spinal canal and causes pressure on my spinal cord. This disorder can progress to irreversible paralysis. There is currently no cure as of yet and not many people as well as doctors are famaliar with this brain disorder. It doesn't get the amount of awareness that it needs. It has forever changed my life. The sx's are very very dibilatating and life changing. I had a decompression brain surgery Dec. 20, 2011. I was told to keep in mind that the brain surgery is NOT a cure but a way to alleviate SOME of my sx's. I had always had sx's as a child but left undiagnosed until 2009. Before my sx's became too dibilitating I was leading an active life, had just graduated with an Associates degree in Medical Assisting and was working in a Peds office at a job I loved! Now I have been unable to work for over a year, been denied SSI and can no longer do any of the things I love to do. I am basically housebound. My hubby is the only one who works and he just doesn't make enough to support all of us. On Dec. 12, 2011 (my birthday) we were evicted from our house. 8 dys before my brain surgery! We have since found another home to rent but I still worry and stress everyday about coming up with money for the bills, about not being able to play sports with my boys much less get out of the house. We only have one car and we live 40-45 minutes away from where my hubby works. Stress is the worst thing possible for my brain disorder. It only increases my sx's and makes my quality of life much worse. My wish is to one day take my boys to Disney World before I am no longer able to go with them. Thank you and God Bless you for taking the time to read my profile.