The past four days I have felt comparably normal. The dizziness and nausea has been kept at bay thanks to Zofran, CBD oil, and Coke One. I’ve showered without fear of slipping in the tub, put on make up, and cooked huge family meals. Most of all I spent time with my kids, soaking them in and realizing how fast time has passed. That being said I do not miss those years. Parenting while still tough is nothing compared to five young children in stair step succession.
I’ve been gathering my medical records from the last three years. I am trying to figure out if should be angry, frustrated or what after reading them. First, they are grossly incomplete when it comes to the reasons I sought medical help. It is like I wasn’t sitting there at all. In one report it actually sounds like I’m a hypochondriac.
And what I find comical is that two different doctors clearly recognize that I have a 1cm tumor in the middle of my brain yet both say it is asymptomatic based on what? Very little research? Extensive experience? It is like they ignored every symptom I had and assigned it to something else. Even the excess cerebral spinal fluid and inflammation around my brain.
Fuck them. Even they have Google. And back in September my neurologist even said to me before I left the country – “don’t Google any of this or you will think you are dying.”
The whole reason I went to him was because I was having trouble with my speech, becoming more clumsy, forgetful, and besides the pain and horrible headaches I was getting LOST. Getting lost in familiar places. Getting confused. Having to call people in a panic because I couldn’t remember where I was supposed to go to pick up my kids.
I’m not crazy. I’m not on drugs. I’m not making this shit up for attention.
I don’t want a brain tumor to define my life. I hate that I have to put my life on hold because I can’t walk upright because the room is spinning. I don’t like feeling nauseated or having blurry vision or being off balance. And I certainly don’t like laying in the dark as days pass by when I have such horrible headaches that even whispers are painful. Most of all I don’t like feeling stupid and that I’ve lost some of my cognitive functions. Hoping and praying I will qualify for brain surgery was definitely not in my master plan.
And it’s these last four days that have been my new normal that I hope for more of. I am grateful that I can still find my words and write and homeschool my children. Though at times I feel I am their ultimate science experiment! I really hope that these days and my strength and positivity is what my friends and family see that will end up defining me.