Kristi, one of my caring, loving, funny, beautiful, sisters, came to visit me this weekend. We laughed, cried, visited, slept, got pedicures, went to the doctor, and much much more. When I was able we were going...When I was not, I slept...She has a really good friend with advanced Chiari that she helps. She understands how it affects people. She understands the good days along with the bad.

On Friday, I visited my regular doctor. I understand that I do not "fit" into the usual patients that they see and that I do scare the hell out of them. They truly do not know what to do with me. However, he takes the most time out of any Doctor that I have seen. That being said, it was still complete HELL! I imagine when they see my name on patient list, they cringe. They probably thing, "Oh goodness, what does she want?" At least I am pleasant when I forcefully push my way through getting what I need. When I first got there, they are basically asking "What do you need now? or Why are you here this time?" I let them know that I am not improving and in fact, am declining in some ways. I let him know that I am unable to walk unassisted for more than 20 feet. He stood me up, had me close my eyes, and pushed me from side to side to check my balance. My sister did say that he had his arms around me to protect me. So there are glimpses of human behavior in this doctor. That kind of movement jars my back and neck. I immediately had one of the worst headaches and nausea and began to tear up. The doctor realized that he had hurt me and that I was not faking and turned into a robot staring into the computer screen. "I can not give you pain pills. I can not give you zofran. I can not give you....I can not give you..." in the perfect robot voice. He pulled up the awful neurologist record and said the neurologist did not think there is anything to this. We talked and I was examined for a good 45 minutes. I had made my list of things that I needed and that I was going to get prior to leaving. Before the doctor left, I told him very tearfully, "I am a mother of five and a wife. This is not how I want to get attention. I want to get my life back. The only place that recognizes this condition is in NY. It is called Occult Tethered Cord." I went on to show him the one MRI that showed "low-lying cerebellar tonsils" and my diagnosis of neurogenic bladder with dysenergia(?) from the urologist. Those are true scientific readings that no doctor can deny. He turned back into a human for a brief moment again and googled the Chiari Institute. He then said he would call them on Monday, patted me on the arm and left the room. The medical assistant then came back in the room after several minutes with only a prescription for something for nausea. There was not order for a walker and no pain meds or consult for pain management as we had discussed. This was Friday afternoon at 4:45. If I would have left, I would have been out in the cold all weekend. So, I stood my ground (nicely). That poor medical assistant did not know what to do but I was not leaving and neither were they until they gave me what I needed! We finally got everything we needed even though the doctor was kicking and screaming about the pain meds. I don't care though. If it were him, his daughter or mother, he would make dang sure they had pain meds---that is for sure! After that whole ordeal, all I could do is lay down and sleep. The doctor does not understand that my brain is being pulled down into my spinal column and when he jerked me around, he was causing my brain to be slammed up against my skull. FLAT OUT EXHAUSTED AND IN PAIN!!!

Yesterday, Justin and I had the adventure of purchasing my new wheels. It is a pretty purple 4 wheel Lumex walker. Weston's aunt from Oregon is going to send me some bling to make it even more of a fashion statement. When I used it to walk out of the store, it immediately relieved the pain in my lower back. It is somewhat embarrassing but at least I can get out of the house and I wont die of vitamin D deficiency. It has a seat so when I get tired, I can sit and rest. NICE!

Last night I got to see part of Karra's Soft ball game. I saw her up to bat and score so that is sooooo cool. Kyler's allstars start next week. I hope to see some of those games too!

Kristi took me Wal-Mart the other day. I was able to buy a Baby Alive with a stethoscope, medicine spoon, thermometer, and bandaids. We also bought more bandaids to go with her. We got off of this for the little three year old girl that I talked about in my last post. She will be having surgery for the same condition I have. It will be good for her to feel comfortable with all of the things she will see when she goes into the hospital. And, it also makes me feel good. We will mail it tomorrow with a cute little note. She has "orange" hair like our Joshy (my nephew). She doesn't call it red, she says that it is "orange" like Joshy used to. Funny. I looked for a baby with red hair but there weren't any but I found one that is blond like me (ha ha, well paid for anyway).

I hope everyone had a wonderful weekend. I look forward to hearing from everyone. Feel free to send emails or comment. I read all of them!

KNitschke@Hotmail.com