Thursday, March 15, 2007

January 4, 2007

What would the New Year be without a nasty cold! Right now the stinkin' virus is multiplying in the respiratory passages of our entire household. Now, THAT'S fun, (as Larry the Cable Guy says) "I don't care who ya are!". We are keeping the Kleenex corporation in business single-handedly. So, don't ya' want to come over for a nice visit !? (HaHaHaHaHa).
Besides the current ailment, things are going fine here. We had a wonderful Christmas. So many of you remembered us Christopher was able to awaken Christmas morning to gifts left from SANTA! He was mesmerized. Thank you, Santa(s)! I had all three kids here midday on Christmas and it was awesome! We shared an early evening feast with a friend who also has very little family nearby and we all felt extremely blessed to have such bounty, a warm place to live and such loving friends!
On December 28th, I flew to Dallas to meet my sister (who had flown in from the west coast). We left Dallas on the 29th and drove 4 hours to see my mother, whom I hadn't seen since she had bypass surgery last February in Houston. Mom looks great, and although she struggles with severe hearing loss and having to wear oxygen, she still gets around very well for an octogenarian. My sister and I drove back to Dallas the evening of the 30th and we all flew home on the 31st. It was a very quick trip, but it was awesome to see my mom and sister, and I think they needed to see me and understand exactly where I'm "at" in the progression of my ALS.
I am possibly enrolling in an ALS clinical trial of the antibiotic ceftriaxone (Rocephin). The study is very involved, requiring a Hickman and very, very high-dose daily infusions of the drug, but the animal model looks promising. I was scheduled to go for an intake appointment today, but because I am sick, I've had to re-schedule.
I'm still constantly amazed at the inefficiency and lack of communication in our government. Social Security has already started sending Christopher SSI checks, yet the Disability Determination Bureau (of the SSA) is "evaluating" him for a "possible disablilty" and knew nothing of the fact that he is already receiving checks. Then there is the fact that the SSA has insisted on yet another "interview" regarding Christopher "to determine his eligibility for benefits" since I am now "disabled". It seems clear to me that the mice in the maze have no idea where any of the other mice are...and have no clue about the way out!
In my dreams, I still fly and take care of patients, and when I awake I find the sense of loss hard to shake. My goal now is to find a replace the CFRN and my other flight-related goals. Any ideas are welcome!
May your New Year be blessed! Love, Claudia

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