Coming To Terms

It's almost midnight and I am exhausted. I arrived home from the hospital last Wednesday. I am so grateful to be free of the confines of four walls. I will be on IV antibiotics for another month along with a nebulized antibiotic and two oral antibiotics. Although the the strain of pseudomonas that I carry is resistant to each of these medicines, they seem to be having a synergistic effect and I am getting better.

I am continually coming to terms with how sick I am. I'm not sure if it's denial. I am aware of the facts: My lung capacity (FEV1) is at 31%. My lungs have lost much of their elasticity due to scar tissue caused by so many infections. I have had 3 lung collapses and statistically will have more. Pneumothoraxes (holes in the lung) can lead to respiratory distress and heart failure. Lung transplantation is not merely a life extending operation, it is life saving. I know the facts yet I still struggle to accept that I am this sick.

I am a survivor, a fighter. I don't know when or how to give up. This has served me well at times. But now I feel tired. The trials of life are wearing me down. I am coming to a place of giving up, letting go.... surrender?!? Didn't I do that already?

Waiting

Please indulge me while I put aside my usual sunny demeanor and gripe for a moment - I'm tired of being in the hospital. I'm tired of being sick. I'm tired of the future being unknown. I'm tired of waiting. I'm tired of needing others, of being dependent.

When I get in a funky mood, like the one I am in at the moment, I have learned to sit in it. I used to try to get rid of it through the quickest pleasure seeking, pain numbing method available, this usually involved food of some kind. My weight has fluctuated 100 pounds over the last couple of decades. Now that I am committed to being healthier I look and feel better. The down side is I hurt more, or at least I feel the hurt more. The price of being real.

I have found that music can comfort me. Rich Mullins is one of my favorite song writers. I love this song-

Well, sometimes my life just don't make sense at all
When the mountains look so big And my faith just seems so small
So hold me Jesus, 'cause I'm shaking like a leaf
You have been King of my glory Won't You be my Prince of Peace

And I wake up in the night and feel the dark
It's so hot inside my soul I swear there must be blisters on my heart
So hold me Jesus, 'cause I'm shaking like a leaf
You have been King of my glory Won't You be my Prince of Peace

Surrender don't come natural to me
I'd rather fight You for something I don't really want
Than to take what You give that I need
And I've beat my head against so many walls
Now I'm falling down, I'm falling on my knees
And this Salvation Army band is playing this hymn
And Your grace rings out so deep It makes my resistance seem so thin

I'm singing hold me Jesus, 'cause I'm shaking like a leaf
You have been King of my glory Won't You be my Prince of Peace
You have been King of my glory Won't You be my Prince of Peace

hospital update

I want to walk outside before the sun sets. After 5 days in the hospital I am feeling the need to commune with Mother Nature before retiring to room 921 for another night of luxury here at UT hospital, but first, an update.

The doctors took out my chest tube on Friday and my right lung is staying expanded. However, I developed a fever that evening and my oxygen saturation level dropped low. No matter how deep I inhaled I simply could not catch my breath. As panic set in and erased rational thought my nurses (notice they are now, MY nurses, not just the nurses) came to the rescue with calming words and an oxygen catheter. They quickly reassured me that I was not some mad, mutated mermaid slowly drowning while attempting to live underwater. I was safe on dry land.

**Disclaimer- this blog was written while I was under the influence of mild narcotics so read it with a grain of pepper.

Back to the hospital

Tomorrow morning I'll head back to my home away from home, University of Tennessee hospital. The pneumothorax in my right lung has not healed itself like the doctors had hoped it would. Ironically, the scar tissue is probably helping my lung to not further collapse. I'm hoping to not be in for too long, time will tell.

Riding the Roller Coaster

Having a chronic disease does have its' benefits. With my handicap pass I usually don't have to hunt for a parking space for very long. Then there is the luxury of being pushed in a wheelchair when everyone else is walking, especially in 90 degree heat, the chair is not so bad. I particularly enjoy being escorted to the front of the line at amusement parks, it's a wonderful perk. Now on most days I do not look sick so when I step out of my van and prance into the store or pop up out of the chair after skipping everyone who has been standing there for an hour I get some mean looks. I don't blame people for their ugliness. They are ignorant of my situation, only aware of their own sense of injustice. It's not fair that I skipped them or that they had to search high and low for a parking place.

My family and I went to Six Flags over Georgia yesterday. We had some free tickets and thought it would be a fun way to end the summer before school starts. While we were there I observed the crazy crowd flying overhead, doing loop-da-loops on the roller coasters. I affectionately refer to them as the screaming idiots. I used to be one of those people. I love a good roller coaster, the bigger, faster, scarier, the better. I loved the feeling of being so excited you scream with delight. Unfortunately now I lose my breath on the rides and have a hard time getting it back until the ride finally ends, by then I am a light shade of blue; still amusing but not so enjoyable.

Amusement park rides help us have controlled adrenaline rushes. Unlike real life we have the thrill of danger while safely buckled into our own little seat. We sit back, secure and comfortable (or as comfortable as you can be flying in the air at 80 miles per hour ) watching the world rush by. I think we all long for the excitement of adventure and the safety of control at the same time. There are times when we all desire that life was like a ride that we could get on and off of, knowing in just a moment the intensity of the unknown will pass and we'll be back safely on the ground. We want life to be predictable and come at us at a steady pace but instead we often feel strapped in and we cannot get off. Sometimes holding on tight and screaming is the best we can do.

An acceptable place to scream...I think this is part of the lure of amusement parks. This is one of the reasons people stand in the hot, miserable heat melting like candle wax for an hour or more to jump on a ride that will last for under 2 minutes. I eagerly anticipate the day when I take on the big rides again, although I will miss going to the front of the line in my wheelchair.

Heading home

My vacation is ending. Soon I will be returning home to my little house in the woods. The past two weeks have been glorious. I have been surrounded by family and friends. I have reconnected with people that I haven't seen for years. I have been reminded how God has been faithful to me. I am still absorbing all that the past two weeks have meant. I think it may take awhile to feel the full impact. I walk away with a feeling of being incredibly blessed. My friends have once again, done for me what I can not do for myself. The birthday celebration raised over $2000 with another $5000 in pledges. However, what means more to me then the money is the sense of support that I experienced. I am not alone. I do not have to walk alone. God has provided for me through people. He has reminded me of His goodness through the love of my brothers and sisters. I am amazed at the healing power of being loved well.