I found out about my Hydrocephalus in May of last year. I finally had some answers as to why I had been having so many headaches and unbearable pain.
But in reality, all that finding out about my Hydrocephalus did, was leave me with more questions. Why wasn't this found sooner? Why, even though I would cry when I'd see the Dr, wasn't something done? How am I walking around with this, when most people have had several surgeries, and shunts installed. These are questions I still have today...and even my Neurologist and Neurosurgeon can't answer them.
My Drs tell me that I have had this my entire life...and have "compensated". I guess my larger sized head, isn't just because I have more brains than others. (ha ha ha) ;)
2009 gave me an overload of information, with very little answers, and it frustrates me so much, that there isn't a "fix" for me. But just like having no "fix" for Neurofibromatosis, I have just accepted that sometimes your struggles are set before you, so that you truly learn the value of life...and I have learned that.
I try my best to live everyday, the very best I can. I am trying to leave a legacy behind that is inspiring and positive. I don't want my children to remember their mommy as someone who was in pain and always complaining about what she has to deal with.
My life is a blessing--NF, Hydrocephalus and all that having that means!!