Monday, October 26, 2009

Knowledge Is Power!

I have a very important announcement to make regarding ACM education. I received a letter in the mail from the Cleveland Clinic inviting me to an awareness program designed to educate and inspire physicians and healthcare providers, patients, their friends and family, and the public. The letter is from Mark Luciano, MD, PhD. He was not my doctor but I think he is Dr. Di's boss. Anyway, his topic is "Are Children Just Little Adults". It doesn't mention any other speakers but it should be an interesting lecture. I would love to go but cannot drive myself thanks to ACM. My brain cannot process heavy traffic :( I really wish I could be there. This is fantastic because it not only brings about Chiari awareness, but also about the endoscopic decompression option so few Chiarians and doctors know about. Let's all send positive thoughts, well wishes, and prayers to Dr. Luciano and the awareness program. Let it be a phenomenal success!

Monday, October 12, 2009

Update On Health and Makeover

Tomorrow will be six weeks since my Extreme-Lori-Makeover and I am so very happy with the results. The Anesthesiologist decided not to turn me over during the procedure due to my neck and hyper-extension. I argued that I hyper-extend all the time and really the only thing I have not done purposely yet is ride the Tilt-A-Whirl (my all time fav ride!) even though Dr. Di said that after a year nothing was off limits. Dr. Youn, my plastic surgeon, convinced me he could do what he needed to without flipping me so I hesitantly backed down -- like I had a choice. The first three days I cursed my doctor and my decision. After they took out the drainage tubes, I felt instantly better! After that, I turned a corner in recovery. I look fabulous, if I do say so myself!

My health is good. I still have occasional peripheral neuropathy in my left foot that can span my entire leg. My Chiari headaches are all most non-existent. I still have bathroom issues. Just a reminder for those who don't know, I have gastroparesis, GERD, swallowing problems with choking and pain, and slow motility as well as all the complications that come along with it (trying to keep this family friendly here). Folks take their bodily functions for granted! I wish I never had to talk about it or think about it again. I wish my body just did what it was designed to do.

OK, I'm done whining. My new gastro doc did a test where I swallow 25 of these little radioactive rings and then periodic x-rays are taken during the following week until I have passed all the rings. Lovely, I know, but extremely important! Why did no one do this test before? I liked him the instant he suggested it. After 5 days, I had 5 left but they were at the "finish line". The moral of this icky story is that my motility isn't that bad!! It is all in the "finish line"!! Hallelujah! That is fantastic news! I went out an bought new clothes to celebrate! Girl thing. Anyway, I am taking Miralax everyday. My doc said no caffeine because it is a diuretic and it takes the water out of your colon which is bad for someone like me. The morning is when I have my one cup before dealing with my children, one of which is a teenager, before they go to school. He didn't care it was only one lousy cup of coffee and told me to stop. I did it one day, almost killed my children, and now I drink my coffee with Miralax in it. Compromise :) But I'm not admitting it to him. What is that old saying, "what you don't know..." I know, I know -- good patients shouldn't withhold information but sometimes quality of life trumps comfort and the quality of my life would go way down if I was sitting in prison for killing my children in a haze of caffeine-free sleep deprivation. I am waiting to hear from his office about what I do next.
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