I am always happy when the holidays are over, but I have to say that I had a great Christmas Day with the family, and I can't believe how my nephew and two nieces are growing up before my eyes. I think everybody learned to be calm when I cough, and it doesn't mean I am going to collapse and die in front of everyone. On the whole, my family and good friends seem to be more tolerant and accepting of the little idiosyncracies of this annoying disease. New Year's Eve, I went to Nancy's party with the Access-a-Ride connection at Long Island Jewish Hospital to Nassau Able-Ride. Both rides were perfectly on time and in sync with each other. Then Louise came to pick us up to take us home. The worst part is having to take the manual push chair, which is a hardship on the aide, and extremely uncomfortable for me. I can't recline, tilt, or otherwise make myself comfortable and take the pressure off my butt. And by the middle of the evening, my braces were killing me. But next time I know to bring along my medication so I won't get so stiff.
I am sick of talking about "the book" and anxious to continue writing it and also socially promote it on the internet via Twitter and Facebook, but I haven't decided if I am going to create a whole new Twitter and/or Facebook alter-ego, or if I am going to do it with my present identity. And I don't now whether to bring back my other blog "Of Jews and Chinese Food" to garner interest and/or to get feedback. As usual, my mind is going in different directions, and I'm all over the place.
I have to make a lot of appointments for the new year, and my ALS clinic is right behind me following up. First, they want to do an oxygen saturation test on me overnight. My respiratory therapist and I decided to do it after the new year, and this is after the new year, so I have to call her and schedule it. I also have to go to my primary care doctor because I need a blood pressure followup, and my neurologist from Cornell called and spoke to her about changing my medication to remove the calcium-channel-blocker in the Azor with Benicar because I discovered that this was causing edema. So I have to take the fasting blood test to give my cholesterol numbers to the dietician at the clnic and also see my doctor about the medication. I have to replace the seat belt on my wheelchair, because it doesn't close anymore due to the thicker cushion it now has to wind around. I prefer to make these calls by Sprint Relay because my friends are all at work and not at a phone all the time, so they end up playing a frustrating game of phone tag, which delays everything for days sometimes. And sometimes when I sit here and talk through the aides, something gets lost in the translation. I also hear that CVS is giving the H1N1 vaccine again, so I have to make sure I do that too. I finally got my replacement cards for my medical insurance since my lost wallet debacle in November. In fact, by now I have replaced everything, so I am back to "normal". It just seems that the days fly by and I get very little done. The other issue of course is my napping during the day, which is an issue of spasticity medication, which has to be addressed with an appointment with the spasticity specialist I was referred to at the Hospital for Special Surgery, to see about alternative treatments. Also, my settings on the bi-pap will probably have to be adjusted after the results of my overnight oxidation test. And, I still haven't picked up my new braces and order a new pair of my $150 [not covered by insurance] Frankenstein shoes to go with the new AFOs.
Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Tuesday, January 5, 2010
A New Year and a New Decade
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