Wednesday, August 26, 2009

An advocate


Today started with a bright-and-early trip to the pulmonologist. My diffusing capacity (the ability to pass oxygen and carbon dioxide across my lung tissue) is continuing to decrease. Greg and my sister, Susie, met me at the doctor's office to go over my results and talk about the future and my upcoming trip to the National Jewish Hospital in Denver. Susie has volunteered to be my advocate in filing for Medicare and disability, so she asked those types of questions to Dr. DeHart. The doc's advice is to go ahead and begin the filing process now. She said that the lung function test numbers (like the diffusing capacity) usually makes the disability decision process fairly straightforward. So at least there's that. It is so wonderful having Susie handling this part of the nightmare. Greg is overloaded and overwhelmed, and I am exhausted most of the time.

We also submitted the form for requesting a disability tag for the car. Doctor mentioned that she was checking the Permanent box, not the Temporary box. Not sure if it was that or any number of other things, but Greg began to choke up a bit, which immediately makes me cry these days. I just can't stand to see him so unhappy and scared. That is the very worst part of all of it. I am scared for him. I love him so much.

After the doc appointment, I went in to work for the afternoon. I am still working, but who knows for how long. My tank didn't last me through the day today, which is bad. I need to be prepared for this and to be able to increase my oxygen when I need to. I sometimes fear that things are progressing much faster than I realize.

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