What's Next

The decision has been made, my fate decided. The transplant team called earlier this week and their verdict is that now is not the time for transplant. They would like to get more mileage out of my current lungs. When they told me a huge sigh of relief came at the same time of more frustration due to waiting. (Have I mentioned that I hate waiting?)

The team would like me to come to the Durham area for four weeks. They want to see how my body will handle extensive pulmonary therapy i.e. torture in the name of exercise. There are also more tests to run, more educational groups to attend, more extensive evaluation to be done.

My goal is to move over by the beginning of February. It seems like my life goes on hold because of this disease once again. I have to drop out of the play, a disappointment and a relief. I wasn't sure if the joy of acting was going to compensate for the drudgery of breathing. In the past I handled the challenge by making sure my character didn't walk and talk at the same time, it made for some difficult blocking but I don't think the audience picked up on the struggle, that is why they call it acting.

I am overwhelmed with the details that must fall into place in the next week....child care, insurance matters, finding a place to stay over there, packing etc, etc, ad nauseam. To survive I must revert to my mantra- One step at a time.

Waiting For an Answer

Last week I traveled to Duke hospital to meet with the transplant team again. It went as it usually does...my pulmonary function test, chest x-ray and disease process all indicate it is time for transplant. However I look good, not like a person needing a new set of lungs so... I wait, they will have their team meeting to determine my fate.

More waiting. I hate waiting.

Here is a little diddy I wrote a while back-

Am I sick enough
for them to crack open my chest
fish out my gills
add replacement parts - new and improved
sew me up
pump me full of drugs
and wait to see if I'll live or die
No, not yet, wait until you're sicker
or
Yes... move ahead or drown.

To Play or Not To Play, That is the Question

In the middle of February the Gem players will perform a funny little murder mystery called Death of A Door Nail. This is the third year and final year it will be presented at the L&N depot. I have played the character of Priscilla for the last two years and am contemplating taking on the task once more. Priscilla is a spoiled, rich girl who is used to getting her way and is slightly obsessed with Scarlett O'Hara. I wear a huge, southern bell type of dress and talk with an accent. She's a very fun character to play.

I enjoy acting because it distracts me from the details of my life. When I am on stage I am absorbed in the moment, it's a wonderful escape. Yet I wrestle with the amount of time and energy the endeavor takes. I wrestle with committing to an event a month away. How will I feel in a month? Will I be well enough to perform? What if I have an episode of hemoptosis (bleeding from the lungs) when it is time to go on stage? What if my lung unexpectedly collapses?

Too many possibilities for failure. Too many limitations to deal with.... and yet....what fun it is to make people laugh, what a sense of satisfaction to be part of a team working together towards a goal. And if there ever was a need for a distraction from the details of my life it would be now. Hmmmm.....perhaps the show must go on.

Chew on this....

"Joy is not an absence of struggle or sorrow but the taste of the presence of God as He surprises us with his gracious love, whatever the circumstances." -Dan Allander

Facing the challenges

I awoke Monday with a sharp pain on my left side, the middle of my back. I struggle to get to the bathroom noticing that I am having a much harder time then normal catching my breath. I call my primary physician. One of the perks of being chronically ill is that they are well acquainted with me. (Hey, we all like to have a place where everyone knows your name) . They agree to see me right away and I get an appointment before noon. By the time I get to the office my lips are blue and I am having a hard time walking any distance.

Then comes the bad news is..... another hospital stay, more antibiotics, life goes on hold. The good news is it is not a collapsed lung like I feared; He thinks it's pneumonia but he is not certain because there is so much scar tissue on my lungs it is hard to know what is old and what is new. Clinically it is obvious that I am sick so bring on the IV's.

I am now on the road to recovery, feeling much better with the first hospitalization of '09 under my belt. As I write I breathe in deep and am thankful for the privilege of another day.

Happy New Year!

A few years ago, when I was in the middle of one of my worst lung infections, I remember opening the Christmas trunk and wondering if that would be the last time I opened it, the last time to pull out decorations, my last Christmas. Obviously it was not my last Christmas, but that type of thinking changes one's approach to life.

This year I purposefully unplugged from my blog, email and all things electronic over the holidays. I did this in an effort to be more fully present to my God, my self and those around me. It was a time to reflect, ponder and live in the now. It was good. Christmas was simple and relaxing. I was blessed with good health and went nearly a month without seeing a Doctor of one type or another.

Now it's time for a new year. I am attempting to live in expectancy without expectations. What does this mean? I wait and wonder what this year will bring. I know very well the things that matter the most are also the things we have the least control over. When struggles come it is often easier to give up hope then to wrestle with dreams that may never come true. Desire is a dangerous emotion opening our heart to all sorts of glorious adventures or possible pit falls. I am waiting and wondering, dreaming without demanding, going without goals. I fluctuate between feeling relaxed and terrified. Time will tell where this takes me.