i should've known my neurological problems were going to be acting up again...the precursor being 9 numb fingers for almost a week. Been a bit hard to blog when i couldn't feel the keyboard... today when i woke up, i had probably one of the worst days i've had in over a year..not pain wise; as horrible as the pain is, it's nothing like being totally messed up in the brain. I spent four hours after waking lying motionless, terrified, praying to God to just give me back my brain. Flashing pictures, almost like memories of things that have never happened, unfamiliar faces staring at me, premonitions of me in a wheelchair, dying before my time. so hard to even begin to put into words; pretty intense; i need a tape recorder. not that any doctor will do anything about it anyway; they'll give me some prozac or something which I'll just add to the the piles of unfilled prescriptions while they chalk it up as a mental disorder when it really is these creatures crawling around in my brain. sometimes i feel them. sometimes, i feel like somebody has their hand inside my brain and is moving it, touching it. and then, my brain feels like its rolling around in my skull freely; talk about vertigo!....to the point of vomiting....sometimes it lasts for days. the most grotesque is the feeling of bugs crawling out of my eyes and in my ears; Every time this happens it is so much worse; I can't do it anymore, not once more. I need help! All I remember is the absolute terror and me begging and begging for God to make it stop. Four hours of begging. Finally, God answered and finally, back to my usual flu like symptoms, hot and cold, hot and cold, on and off, back and forth, covers on, covers off, barely having the strength to lift them off of me. nausea, no appetite (i usually can get down a yogurt a day; about 100 calories) and eventually came the pain. So so so bad, I wanted to amputate my legs...both of them. I don't care anymore. not about anything. I truly will not survive another day like today....not one more. If that makes me a wimp then that's what I am; I have fought hard for three years and I see no end in sight. I have given my cat away, am having somebody take my beloved dog because I can no longer afford to feed him and it is not fair to him to have to give up his walks. The only responsibility will be my son. He hates me now anyway...i am no longer the person i used to be. I don't blame him. I used to laugh and do fun things with him. He should not be with me right now. He should not see my like this. Oh, how I wanted to share his senior year with him and had the white picket fence version of sending him off to college....what a joke....I spent all my savings and don't have a dime for his college now; can't even afford the application fees. I got bit by a tick and now none of that will happen. We are one step up from a shopping cart. And we could be without a roof again next month. I'm sorry but I'm angry! We have had a lot of tough spots in life, and i never complained; Never! but now I am mad! I'm mad and so very very alone.
I say I don't care about anything anymore but that is of course a lie. I care about my family and friends. I care about anybody reading this blog and taking the time out in an effort to understand how unbelievably lonely this disease is. I care that I can get treated and better and help others get better. I have goals, all of them to help others suffer less. And most of all, I care about my son and his last year with me, keeping a roof on our heads and trying to find my way back to the person he once called his mom and who he loved very much. I pray he will someday forgive me for dragging him through this hellish place with me.
FYI: Dr. Brian Fallon, Columbia University has and is currently studying the effects of Lyme on the brain; I passed all of the criteria and was scheduled for a study but had to cancel due to the cost
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