Kathy Miller, an RN at the VA, won the X-box Arcade game. She has grand kids that are going to love it! Yay! We made just under $1000 on the raffle. Thanks to everyone that bought tickets and to David for donating it. That will make a huge dent in our medical bills.
I passed the psychological exam this morning. And, no matter what you say....I did not cheat! I really passed. I am prepared for surgery. We did discuss my ups and downs in emotion and discussed that they are "normal" for what I am going through. I actually feel pretty darn good emotionally. Amazing, I know, but I do. I am somewhat relieved to have these diagnosis. That is weird too but it gives me answers to why I feel the way I do.
My neurologist called me today. Yep---that is what I said. We are becoming quite the phone pals. He called me to discuss the strange test they want for surgical clearance. The last think I need now is a spinal tap. They will be testing the cerebral spinal fluid for aspergillosis and any other CSF infection. The good thing is that will be soon. Bad thing is, he thinks that test takes a few weeks to run in a lab. Darn it. He is a little worried about doing the spinal tap. I am too! It seems like that is what send me in this downward spiral in the first place. Anyway, we are going to be put back a few weeks. I am also going to call my primary care physician to have blood tests done too to make sure WBC and RCB are back in normal range. I think I will have them run a blood test for aspergilosis too. Might as well to be on the safe side. Hopefully That will all be negative and we will be on our way.
The reason the dr's from The Chiari institute want the aspergillosis rule out is due to some of the strange symptoms I have. They are visual and can be scientifically proven, they just don't know what the hell is causing them. There are so many things in this world that there are not answers for. The scary thing is that usually, you do not get aspergillosis (a fungus) unless you are otherwise immunocompromised. The doctors also believe that I also have some other kind of autoimmune process which would explain that. So, that will be another step in this long process. I will have to try to figure out what the heck is going on there. Lupus? maybe---that always seems to come up. Every darn year. And, when I came back from my cruise, I had a strange rash on my face. I chalked it up to sun exposure and over use of sun screen. Lime disease? That seemed to come up a lot too? Who the heck knows. I have high auto-immune markers.
Maybe someday we will know what the heck is going on. Until then, we are on track to get one problem under control. NOTICE: I said "under control" I want all my friends and family to know that the tethered cord will be released and there will be some relief but there is no "CURE" for Chiari. There will be good and bad days for the rest of my life. Please be patient with me. The new diagnosis of Ehlers-Danlos Syndrome, is just setting in. Not sure what to think of that yet. It will never go away. There is no "CURE" for it either. Once it gets bad enough, surgery can be done to tighten the ligaments in affected joints. Also braces can be warn. That is something I think will help me a lot. The Ehlers-Danlos is a connective tissue disorder and is probably the reason I have tethered cord (a disorder of the connective tissue of the base of the spinal cord). The Chiari Institute is doing the research on the link between the two. Yippee. I get to help by participating in that! I will have DNA testing done. They will hopefully be able to isolate the gene that causes this syndrome.
Anyway---we are well on our way to setting a date for surgery. One more hurdle for this slow moving turtle!
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