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My Chiari Life: Update

So after last week's update I think some people think I may be dying. I am not dying, although some days I feel like I am. Today is no exception. 

To say I have gone through a it in the last week would be an understatement, and my brain knows what's up. 

Thursday night I said goodbye to my G-Dawg and headed to Salt Lake. I typically sleep until 11 am, but on Friday, I woke up at 5 am and wasn't able to fall back to sleep. My mom called around 5:30 to tell me that Grandma had passed, and after that sleep was out of the question. 

My MRI was at 8, and was different than the one I had here in Pocatello. I had to change out of my street clothes, into a hospital gown and scrub bottoms. Also, in Salt Lake, I got to listen to Carole King Radio on Pandora through the whole HOUR of scans. 



My neurologist called on Monday to let me know that there was some flow to my brain but she called it borderline. She wanted to refer me to a neurosurgeon just so that we all felt at ease with our choice of treatment when he confirms that medication will treat the symptoms. I was under the impression that I wouldn't have an appointment unless the surgeon thought he could help with his skills. I am trying to remain optimistic and surgery free, although we do have an appointment set up to meet the surgeon on Monday the 27. He probably just wants me to drive out there to tell me I don't need surgery. Right?

A new symptom that has occurred since my last walk ( it was like 2 hours long and up and down hills- probably not the best choice) is that I can't sleep laying down. This is a fairly common symptom and is said to come and go, and can be explained due to me tapering off one medication. I have had to prop myself up into an almost sitting position with pillows every night which has been interesting. Almost every morning this week has been an early morning with an exception of this morning where I got to sleep in until 11, while sitting in my "headache chair". 

Another new event happened when we went to Bancroft for my Grandma's burial. I was told that elevation change may mess with me and it did. Not only did my brain feel like it would EXPLODE- but also my left leg went completely numb. Again, I am not sure if this is directly linked (but we are pretty sure), but let's just say after that long ride and the true small town shock and standing up for a full 35 mins just made my leg go numb. Yeah, let's go with that. 



That being said, again, I am not dying. I am actually feeling pretty good. Feeling good and remaining optimistic.

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