Wednesday, November 11, 2015

Brain On Fire

(I want to apologize for this post. This poor girl went thru enough without me coming down on her. I was tired - I am emotional - I was a brat. Every story is meaningful and every story is personal, because hers is different from mine gives me no right to come out in the tone that I did.)


I ordered the book. Every time they mention the disease they tell me about this dayum book and the dayum girl.  Finally I got it. I feel for her, and her ordeal because I am living it. I get it. But I just couldn't "get it". Her story is so different from my son that the reassurance I hoped to gain just didn't come. I found out the IVIG he just had is over $20K a bag and confirmed that with pharmacy here - but other than that... she is the Day to the Night of my son's case.
Jason is incoherent. Jason is bedridden. Jason is catatonic.
I just can't relate.


I started the GoFundMe in panic. When all is said and done they are going to come looking for their money. I don't think pretending not to be "me" on the phone will work for too long. If I can get to cover half of one of those IVIG bags maybe I won't have to sell my little kids into slavery.
or sell Icees on the street when I am a little old lady.





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