An advocate

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.

It's all okay

It's all okay

There is a saying (sorry, don’t know who said it) that goes like this: If things are not okay, maybe it’s time to redefine okay.

I was driving across town today and it occurred to me how silly I must look. I'm carrying an oxygen tank full-time now, with a hose pushing oxygen into my nostrils. No, that's not actually the funny part. I happened to be driving Greg's (my husband) car, which is an old minivan loaded down with a canoe rack on top and a bicycle rack on the back. Anyone looking at the vehicle itself would assume the driver was an athletic, outdoorsy type. Instead, here I am, a 50 year-old woman who drives around for 10 minutes in a parking lot looking for the closest spot I can find, and then, walking slowly and deliberately, heads straight for the door (no extra footsteps for me, I'm all rationed out. If I encounter stairs, I usually have to stop on the 5th step to catch my breath). I imagine that people look at me when I'm in that car and scratch their heads trying to piece it together.

I've decided to think of this oxygen tank as a new and different accessory. It even gave me an excuse to go shopping for a new handbag, which as it turned out, is a small backpack with enough space for the tank AND my usual purse contents. It is actually a Camelbak hydration system for cyclists, but after removing the bladder, my small O2 tank fits inside perfectly, with a little room left over for my necessities in external pockets. A shopper questioned me about it at the grocery store, because her mother is still lugging around the uncomfortable and cumbersome bag that comes with the tank. I referred her to REI and recommended that she bring the tank (and her mother) along to test it out.

The hose and canula are the parts of the thing that really make me feel old. I mentioned to a coworker that I was thinking of threading some beads on the tubing to make a fashion statement. With a perfectly straight face, he replied (yes, 'HE!') that what I need to do is to Bedazzle it.

I'm considering it.

Life Itself is Grace

Life Itself is Grace

"There is no event so commonplace but that God is present in it, always hidden, always leaving you room to recognize him or not to recognize him. Listen to your life. See it for the fathomless mystery it is. In the boredom and pain of it no less than in the excitement and gladness: touch, taste, smell your way to the heavenly and hidden heart of it because, in the last analysis, all moments are key moments, and life itself is grace."

-Buechner, (Carl) Frederick

I'm finding a way to make the most of the time I have. But the reality of it is, it would never have been long enough anyway.