About Me and the Purpose of this Blog

I was diagnosed with a rare genetic condition called Von Hippel Lindau when I was 11 years old. It has changed everything about my life. I started this blog partially because I needed an outlet for my thoughts and feelings and partially because I know what it is like to feel alone in the world. This disease has killed everyone in my paternal family and I have to navigate these uncharted waters on my own now...and that's an extremely lonely feeling (to which very few people can relate) so if this blog can help even one person feel as though someone else knows what they are going through, then I think it's worthwhile.

I am currently recovering from brain surgery but I still have many more tumors that will eventually need operating so if you take this web-journey with me, I promise to make it as entertaining and informative as possible.

Thursday, March 19, 2015

Eye Doctor Update

I got some bad news at the eye doctor today. The tumor is sitting between the gel of my eye and my retina, the more it grows, the more my retina detaches. Within the last few weeks the tumor grew significantly so there was a lot of separation and there is blood obscuring my vision (especially the right periphery of my right eye). So I have to go back to the eye doctor in 13 days and he's gonna assess whether or not the injections I got today helped the situation at all and if not then it's emergency surgery time. 'Til then, since my retina is out of place, everything looks horribly distorted and cloudy and there are big holes in my vision that are from pools of blood floating around in my vitreous gel....*sigh.
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