NYC trip continued....

Kristi, me, Dondi, Traci

NYC trip continued...

We finally got in bed around 0245 am New York time. I think we were asleep before our head hit the pillow. But, before that, we stripped the beds and sprayed everything with Lysol. Of coarse, there is a huge breakout of bedbugs right now in NYC. WTH? Luckily, we did not have bed bugs, that we know of.... But our phone, remote, tables, etc where cleaned with Lysol. Dondi and I are two peas in a pod in more ways than one. Then the next morning, we wake up, sit up, look at one another and just giggle. We both have very stiff backs and necks. It was like looking in a flippin mirror. "You girls don't mind if I drive today" Justin says kind of quietly and timidly. Dondi and I just find that the funniest thing in the world. Did he accidentally spill water on me and I multiplied in the middle of the night, like the Gremlins? See, I talk to Dondi a lot on the phone but I have not seen her but once or twice in two years. It did not take me long to realize that I FOR SURE HAD THE SAME THING AS SHE DOES. We have the same protective mannerisms. For example, we both hold our heads near our ears in an upward position to relieve pressure. That helps with the cerebral spinal fluid flow in the back of the skull. We both hold our heads above our eyes. And many other things that we do the same. Frankly, I think it scared the hell out of Justin from the first few minutes that we were around Dondi. He also realized quickly that I had the same thing. He did not need all the fancy tests to tell us that. Now, keep in mind that my sister suffered for a much longer time in silence without help before she finally got to the Chiari Institute. She was much sicker than I am. Although, at times, it does not feel like it. I have some other weird, rare, symptoms that the doctor's are not sure about. They think that maybe I may have had a fungal meningitis or have an autoimmune illness along with Chiari and Tethered cord. OK. So back to Day one of testing. We are in the waiting room. Dondi and I are waiting room and we are so similar looking and in mannerisms that a man asked us if we are twins! She was very happy. She is 10 years older but we do look a lot alike. One time I was asleep on her couch and I awoke to her kids arguing if I was their mom or aunt Kelli. So, we must really look alike for her kids to think that.

I had to have tons and tons of testing. I had MRI's after MRI's, CSF fluid flow checks, 3d checks, x-rays that cross referenced to MRI's. It was about 3 hours of testing. This equipment blows any equipment in AZ out of the water. And, thank goodness, the medical facility was clean and open, unlike the prison looking airport. As many of you know, my body has tremors that I can not control. Much of the testing was flat on my back. A lot of the testing has to be re-done due to the uncontrolled body movement. The medical staff was really nice about it though.

The next day was the day I had been waiting for! When people finally get to the Chiari Institute, they are usually on their death bed. Luckily, I am not. I am in bed 24/7 though. That is because of my sister and my pure pushiness and nursing background. When I looked around at the other patients, they looked so bad. It is really sad. They have to wait on dr referrals or someone to help them. The sad part is that the dr's that are supposed to help them, know nothing about this illness. I have to do something about this! Anyway, as sick as I am, I am not as sick as them. Both the senior neurologist and senior neurosurgeon recommended surgery. They diagnosed me with Arnold Chiari 1 and tethered cord both. Just as I suspected 4 months ago. It is the same thing my sister has and it is genetic! I also have Ehlers-Danlos Syndrome. It is a inherited disorders that weaken connective tissues. Connective tissues are proteins that support skin, bones, blood vessels and other organs. It is makes your chances of having tethered cord, much higher. Finally, an explanation of why I have been a "circus freak" my whole life. :) I am hyperflexible. The doctors were really getting a kick out of this and I really did not know this was weird! ha ha ha. It also explains why my knees hurt. The ligaments are loose so the joints hurt, all the time! Wow, now I understand why I have not felt good my whole stinkin life!!!!! I know it is weird that I am happy they found something but it is just justification that it is not in my head.

So the medical board will be reviewing my case in two weeks. The neurosurgeon believes I will have a very good outcome. He said a positive outlook increases the outcome. Here comes the queen of positive!!!!!! Although, I do owe my husband and my sister a huge apology. I was so stressed out and upset. The whole trip I was a mess and grumpy. Hopefully they will forgive me and find it in their hearts to understand that. I have had a huge weight lifted. Now I am excited, I know that is weird, but I am excited for surgery! I can't wait!!

Have a wonderful and safe weekend. See some of you Saturday night at the Wyndham! I just got a signed Cardinal football and 4 really good D-backs tickets (with a choice of home games) for the silent auction to go along with the other really good stuff I already have!!!! Thanks everyone!!!!!