The last surgery that I had on January 22nd didn't work. I felt decent for ten days and then my health began to decrease steadily. On Friday evening I saw my neurosurgeon and he ordered a CT Scan. It came as a shock to both of us to see that all the ventricles in my brain are collapsed. At this point he is out of options and is referring me to a surgeon that specializes in shunts. This is being done STAT as this is a dangerous situation.
This news makes me sad because my surgeon has been a big support system to me for 7 years and well, very angry. I am beyond frustrated that so many of my friends with hydrocephalus are also suffering and going through endless surgeries. I am tired of feeling horrible day in and day out and going through surgeries with little to no relief. I am also tired of having to put my life on hold and watching everyone around me living their lives. I WILL NOT allow hydrocephalus to take things from me anymore! I am going to use this anger as a driving force to restart my life. I have an incredibly wonderful boy to raise and a sweet little girl to take care of during the week (just think she likes to dance just as much as I do). I also need to start my new career path as a consultant for Usborne Books and More. For now on I am just going to do more while being sick. I know some days I won't physically be able to do that but I want to try harder.
So friends and family please continue to be patient with me if I have to rest when we are out or if I become very quiet because I am in excruciating pain. Thank you for all the support you have all given me and for being willing to make the dance videos with me. I have had a blast making them so far. When I am homesick, which honestly is daily, I watch some of the videos that I made during my visit to California over Christmas.
Also I will not stop fundraising and spreading awareness about hydrocephalus. There has been little advancement in treatment since the 50's. This is just not acceptable to me or any of my fellow warriors. Stay tuned for more updates about the health situation and hopefully more positive changes in my personal life. Truthfully I am a bit frightened but I have to stay hopeful that things will change for all of us.
This blog is about living my life with Hydrocephalus. I acquired it shortly after birth so I have many experiences to share. I will be very open about my journey. Feel free to comment, ask questions, suggest a topic for me to write about and share the posts. Please keep in mind that I am just one person out of millions. We may not all share the same symptoms and experiences but we can certainly be there for one another. Thanks for reading!!
