A Chinese Proverb

'If we don't change the direction we're going, we're likely to end up where we're headed."

Adjusting

As Dolly Parton, the great Tennessee philosopher states "We can not control the wind but we can adjust our sails."

I have been adjusting our sails all week. Insurance companies are maddening. Enough said.

Life happens......

Thanksgiving was wonderfully relaxing. Just being out of the hospital was a reason to celebrate. My family went to Jacoba's house. She had a delicious dinner prepared for us, all we had to do was show up. What an incredible gift of hospitality! We ate, napped, played games then ate some more.

Since the previous Tuesday was Tom's birthday he decided he wanted to "get away from it all". Friday morning we traveled to Pigeon Forge, a touristy town about an hour and a half from our house. Our family needed to regroup and going away together helps us to do that.

That evening we were on our way to dinner when...... life happened.

It's amazing how quickly our agenda can change. One moment you feel happy, carefree anticipating a fun evening, the next moment you are jolted to a new reality. Crash - Everything transforms- your plans, your priorities, your pain.

Later in the evening as I lay in bed I was overwhelmed with gratefulness. My family was still intact. No one was seriously hurt.

I could lament the loss of our van, it will be costly, inconvenient, another struggle in life to contend with but in the scheme of things it's going to be alright.

Home Sweet Home

I AM HOME!!!!!

I hope that will be my last hospital stay for this year. It feels so good to be outside. I'm so thankful to be spending Thanksgiving out of the hospital.

Existentialism and Poker

For the first few days at the hospital I do nothing but eat and sleep. Usually by day four or five I am well enough to appreciate visitors and watch TV. By the sixth day I am bored of TV so I
have developed other past times. I read, I clear out my old emails, I talk on the phone, I journal, I listen to music, I talk with God. Sometimes His presence feels very close, sometimes I feel very alone.

Lately I have a new activity to pass the time away. I play poker. Like most card games there are different levels to play. Some players just willy-nilly take chances and throw out their cards without much thought. Some players try to bluff their way through a hand acting like they have something of significance when they actually have nothing. Some of the more serious players know the odds , count the cards and calculate their every move and counter move.

Regardless of what level you play at there is one dominating factor that rules the game - luck.
Luck of the draw, meaning you can only play the cards that have been dealt to you. You do your best, sometimes you win, sometimes you lose, regardless, the game goes on.

Now the hard part

I have been in the hospital for a week. I feel much better. My body is responding to the medication. I have not had a fever in several days. I am not struggling to breathe anymore. I have more energy. I am on the road to wellness.

Now the hard part begins. Waiting....

I want to be home. I want a normal life. This year has been especially hard. It seems I am getting sicker, the disease continues to stomp through my life like an enemy army on the attack. In the previous eleven months I have had five hospital stays, weeks of home IV's, and a month living away from my family going through pulmonary rehab. All this accompanied by the continual thought of "when will it be time for a lung transplant?"

I am so tired of sickness overshadowing my life. I have lost perspective and it seems like there is no end in sight.

I wait to hear from the doctor about when I can be discharged from the hospital. An insurance company will dictate whether or not I will be home for Thanksgiving.

I feel so helpless.

Being Here

I was hoping to make it through the rest of this year without another hospital stay. I am sad to say that is not so. It's been 7 weeks since my last hospital visit and here I am again. The usual brought me to my demise- fever, extra congestion, shortness of breath or (SOB) as they refer to it in medical jargon.

I've been here since monday. I am beginning to feel better, which makes being here harder. The weather is supposed to be beautiful in East Tennessee this weekend. One of the last tastes of Fall before winter comes. I want to be outside enjoying the sunshine and the final days of warmth.

I am trying to embrace what is, not what I would like it to be. I know if I focus too much on my desire for this hospital stay to be over with then I will become very frustrated and I will miss the goodness of what is happening now. At this moment I am resting in a comfortable bed. I am enjoying the quite hum of the IV machine. I am watching the sun come through the window casting ever changing shadows on the wall. I am eating a blue berry muffin that is quite tasty. I am breathing. I may not have all that I want but I have all that I need for this moment.

OOPS!

Thank you to all of my dear friends who graciously informed me that we turn our clocks back tonight, not last week. Perhaps I got it wrong because I don't pay attention to details, or perhaps my memory lapsed due to stress. I would like to think that I'm just ahead of my time.

Falling Back in Time

We all adjusted our clocks this past weekend. Now the darkness comes earlier at the end of the day. Or does it? The sun did not change when it rose and when it sets. We adjusted our perception of time to better utilize the sun's light for our purposes.

Where am I going with this? I don't know, just thinking again about how our perceptions create our realities, how our perceptions are affected by our perspective. This all sound so heady. Let me try to explain where I am going with all of this. (hang on, it could be a wild ride.)

I grew up in South Florida, near the tropics, closer to the equator then most of the United States where there is lots of sunshine lots of the time thus Florida is nicknamed the sunshine state. Day light savings time doesn't mean a whole lot there because the closer you are to the equator the more constant 12 hours of sunlight you will receive regardless of what season it is.

However in other parts of our country, the tilt of the earth creates more sun shine in the summer and less in the winter as the earth rotates. Therefore, day light savings time impacts people up north more then the south because sunshine is a precious commodity in the cold winter months and daylight savings time allows for people to enjoy the sun more in their awake hours.

All of that to say that the sun never really changes when and for how long it shines. It is constant. Yet our perspective (where we see it from) of the sun changes as the earth rotates so much that we adjust our perception (how we see it) and this creates our reality. (what time of day is it?)

Whew, I'm tired and I'm not even sure this makes sense to anyone else. I think somewhere in this analogy is a lesson about changing and adjusting and letting the sun shine in your life but I'm much too tired now to connect all the dots. Perhaps I will ponder this more later.

The Trial of Trust

As much as I would love to take credit for this writing I can not, it was sent to me from a dear friend. I wept as I read the words as I can relate to the continual desire to trust in spite of feeling naked in the middle of winter. Spring will one day come, until then I stand in the cold and wait....

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"I worry too much. Autumn trees ask me not to worry. They, like Jesus, suggest trust rather than worry.So often in autumn I want to go lean my head against a tree and ask what it feels like to lose so much, to be so empty, so detached, to take off one's shoes that well, and then simply to stand and wait for God's refilling. It sounds so simple, so easy. It isn't easy. But it's possible

Slowly
she celebrated the sacrament of letting go
first she surrendered her green
then the orange, yellow, and red
finally she let go of her brown
shedding her last leaf
she stood empty and silent, stripped bare
Leaning against the winter sky
she began her vigil of trust.

And Jesus said:

Why do you worry about clothes? Remember the flowers growing in the fields: they do not fret about what to wear: yet I assure you not even Solomon in all his royal robes was dressed like one of these.

Shedding her last leaf
she watched its journey to the ground
She stood in silence
wearing the color of emptiness
her branches wondering
How do you give shade with so much gone?

And Jesus said;

Do not be troubled or needlessly concerned.

And then,
the sacrament of waiting began.
The sunrise and sunset watched with tenderness
Clothing her with silhouettes
they kept her hope alive.
They helped her understand that
her vulnerability
her dependence and need
her emptiness
her readiness to receive
were giving her a new kind of beauty.
Every morning and every evening
they stood in silence
and celebrated together
the sacrament of waiting!

And Jesus said;

Now if that is how God cares for the wild flowers in the fields which are here today and gone tomorrow, will He not all the more care for you...?"

Back To Normal

Tomorrow I will have been home from the hospital for one week. The world seems like such a big, beautiful place after being cooped up in a tiny room for 19 days. After 3 weeks our whole family is together again. The kids have been staying at our friend's house because Tom was sick at home while I was in the hospital. He is still in recovery mode and will hopefully return to work next week.

This experience has hit us much harder then the "normal" hospital time. Perhaps because both Tom and I were out of commission at the same time. Perhaps because it was the swine flu causing more uncertainty then usual. Perhaps because this is the fourth hospital stay this year and we have had less time in between stays to recover. I'm not sure of all the factors but I'm ready to get back to "normal".

Over the weekend I told my daughter it is going to take us a little while to get back in our groove. With the raw honesty of a teenager she said, "Mom, we don't' have a groove." Hmmmm...


Hmmmm....here's a thought - what is the difference between being in a groove verses being stuck in a rut.

Time to dance

I am so grateful for life. After weeks of recovering in my hospital sanctuary I am ready to face the world again.One of my favorite songs expresses how I feel today. http://www.youtube.com/watch?v=wRayKxgePQI&feature=fvw

Walking again.

After 17 days in the hospital I am getting stronger. I took a walk this afternoon. I pulled my IV pole with me down to the gift shop to get some much needed chocolate. As I plowed through the crowd wearing my mask on my face I felt like a leper of ancient days. I wondered if I ought to be calling out "clear the way, unclean, unclean."

I have been infected by the swine flu. This pandemic has hit our part of the country with a mighty punch. Attempts at not spreading the virus has shut down whole school systems for days at a time. The hospital has been overflowing, an auxillary wing was opened in the emergency room to accomadate the sick coming in with flu symptoms. There have been several "healthy" people that have died from acute respiratory distress caused by the deadly H1N1 virus.

"But by the grace of God there go I" is an incredibly true statement for me. I am blessed

Ups and Downs

Ups and Downs When I look out my window I can see the big, gold globe that Knoxville built to host the 1982 world's fair. The sky is gray as it has been raining for the last couple of days and it looks like it will be raining through the weekend. Dreary weather makes it easier to be in the hospital, the outside world is not quite as enticing when the rain is pouring down. I am in recovery mode but still feel very weak, taking a shower is a major endeavor that leaves my energy depleted. I feel old, worn out.

I am doing the dance of ambivalence again. I'm glad to be in the hospital and have all my needs taken care of; it's wonderful not to have to think about preparing food, when to take meds or taking care of anyone else. I'm sad to be in the hospital because I feel disconnected from my family and friends. Up and down the seesaw of emotions go.

The Doughnut

I don't want to wish my life away but I wish this hospital stay was over. I want to be home already. I've been here for 9 days and at least another 9 days to go. I can not go home with home health care because of the dreaded doughnut hole.

Let me try to explain to the best of my ability the bureaucratic bull crap that dictates my life. Medicare part D will help pay for prescriptions until you reach about $2400. Then the patient pays the next $3000, then medicare will kick into gear again and will pay for prescriptions. The middle section where the patient pays for all the medication is called the doughnut hole and that is where I am stuck. I cannot afford to pay for my medicine, so now the system will wind up paying a bunch more money for me to stay in the hospital. Does this make sense?

Love Flowing

LOVE FLOWING

God's love flowing 'round me
soothing as water
molding creation
softening sharp contours.
My heart rises upward
as bird toward sunrise
yearning to meet You
in blazing delight.
Your eyes gaze upon me
piercing my armour
humbling my spirit
searching for faith.
I bow to Your radiance
in homage and worship
surrounded by mercy
clothed in white garments.

For Tina from Mary L.Pries

hospital update

Today marks my 8th day in the hospital. This week has been a blur of IV's, blood work and
x-rays. I am getting better but still feel very weak. I hope to go home this week.

In The Middle

I am writing this entry from the ICU. I am being desensitized from an atibiotic that I am allergic to. Today before coming to the ICU I was able to go outside, it was wonderful to sit and let the breeze blow over me. I am anxious to go home but I know that will not be for awhile so I am trying to be content. To my right is a window where I am watching the sun set, to my left my IV pole, the annoying machine is beeping. I look back and forth between these two scenes that are the backdrop of my life.

The End of A Season

The summer ended abruptly, much sooner then we wanted, perhaps all of life goes that way. We had tentatively planned for a camping trip, a final farewell to our warmest season. Instead of communing with nature in the Great Smokies, I am communing with doctor's in the hospital. My fever was at 103.8 by the time I got to my hospital bed. So far it's been 3 days of antibiotics, vomiting, bed rest and still the fever is here. I've tested positive for influenza type A a/k/a the Swine flu. With my pre-existing condition it is really wiping me out.I came in dehydrated. The nurses had to stick me 14 times before they got a good vein in my finger. Needless to say, all the poking really got on my nerves. (pun intended).

Still holding my own

Today I went for a routine check up at Duke hospital. The good news is I am still "clinically stable". The doctor said I am standing in the doorway of transplant but he would advise not walking through yet. More time on this side usually means more time overall....the risks are high with no money back guarantees. As long as I am able to function fairly well, my oxygen levels stay high and I can continue to ward off infections then I need to continue waiting.

The bad news is my lung function is down by 14%. This is hopefully just the beginning of a flair-up and not indicative of a permanent downward trend. Time will tell. This also means another hospital stay is needed soon. It's been almost 11 weeks since my last hospital visit.

Resting

This season is good. I have spent lots of time laying in the hammock, soaking up the sun, listening to my children's laughter. I am reading good books, watching the clouds drift by, waiting for the lightning bugs to burst on the scene in the cool of the evening. Ah, the long, lazy days of summer.

I am resting and recovering from the last 12 months: 6 hospitalizations, 4 out patient surgeries, 5 weeks of pulmonary rehab. It has been an extremely challenging year; Too much sickness, back to back with no recovery time, too much stress, too, too much.

There were times I did not think I would survive (literally). It feels good to be alive.

Where are we going?

The endless cycle of idea and actions, endless invention, endless experiment,
brings knowledge of motion, but none of stillness, knowledge of speech, but not of silence,
knowledge of words, and ignorance of The Word.

All our knowledge brings us nearer to our ignorance,
all our ignorance brings us nearer to death.

Where is the life we have lost in living?
Where is the wisdom we have lost in knowledge?
Where is the knowledge we have lost in information?

-T.S. Eliot, 1934

The Cost

"Yeah, life goes on, long after the thrill of living is gone." -J.C. Mellancamp, 1982 "Happy are those that dream dreams and are willing to pay the price. "-Author Unknown "Same old song, just a drop of water in an endless sea, all we do crumbles to the ground though we refuse to see. All we are is dust in the wind." -Kansas, 1977 "Carry on my wayward Son, they'll be peace when you are done. Lay your weary head to rest don't you cry no more. Carry on, You will always remember, carry on, nothing equals the splendor, now your life's no longer empty, surely heaven waits for you." -Kansas, 1976

Time Marches On.....

Two weeks ago I laid in a hospital bed.

One week ago I laid in the sun listening to the familiar rhythm of the waves of the ocean.

Tonight I lay in my bed, safe, sound and secure.

I am grateful that I am not where I was.

I am grateful that I don't know what lies ahead.

I will rest in this moment.

Saying goodbye

Tomorrow we will be at Sunny Shores Sea Camp in Vero Beach. This is a family vacation that we partake of every year. It's a time to come together with others like me who have Cystic Fibrosis. There will be a familiar face missing this year. My dear Doctor Mckey passed away a few months ago. He was my pulmonologist in Miami. He was my doctor for over 30 years, watching me grow from a weak toddler misdiagnosed with a "failure to thrive" to being a Mother of two children. I was blessed to have him be part of my life. I will miss him.

For more info go to http://www.sunnyshoresseacamp.org/

Acceptance

When it comes to hospital stays, I am a frequent flier with lots of mileage points. This is my third stay this year, my 6th stay in the last 12 months. I used to go crazy when I had to go in the hospital. I hated it, I felt like life was passing me by and I was stuck within the confines of four sterile walls.

As the years have gone by I have learned to accept, relax and even enjoy aspects of my hospital stays. By the time I usually land here I am sick enough that I am grateful for the reprieve. Where else can you spend time just sleeping, reading, writing, watching TV and playing video games while others bring you your food and clean your room. I am grateful to have a soft place to lay my tired head. I am able to rest without the burden of daily life chores (cooking, cleaning, taking care of others.) I've come to embrace the fact that life is not passing me by, this is my life.

Home Away From Home

I've been feeling extra tired and congested for the past few weeks. I went to the doctor last week. They told me I wasn't sick enough to meet medicare criteria to be admitted to the hospital. So I spent a week getting sicker which will now take me longer to get better. This is an example of the inefficiency of Medicare; Save a penny, lose a dollar.

I will not go into complaint mode about our health care system. I can hop on that soap box and cry out to all who will hear for quite a while. I don't have the energy for that right now. Give me a few days on IVs then I can rant and rave again.

Right now it's time for rest, relaxation and Jeopardy

Deep Thoughts

Today I pondered the phrase, "you want to have your cake and eat it too"

What good is a cake you can't eat?

Morning surprises

It was early this morning when I heard my son's blood curdling screams. My heart raced as I pictured him covered in blood with his hand or some other limb cut off. When I got to him in the living room I was relieved to find no blood but looking at him I could tell he was scared out of his wits.

The object of his fear was a two foot snake that had made his way onto our back deck. My dear boy had almost stepped on the slithery serpent when he went out to do his morning chore How this vile creature got there I do not know. Our deck is 15 feet off the ground. Did it drop from the trees? A kamikaze snake on a mission to scare the bejeebers out of us.

My son has adamantly stated he will never go outside alone again. Never is a long time. I hope he changes his mind.

The Simple Life

With the economy in a downward spiral along with our personal finances I find myself returning to my Mennonite roots. The simple lifestyle of learning to be content with what you have. "The Power of Enough" is a great, little reading. The author stresses being a wise steward with our finances and being free. Free to say no, free to do without, free to embrace what you have, free to dream about what you want. I long for a more simple life, maybe someday I'll get there.

Summarizing Mennonite simplicity- Use it up, wear it out, make it do or do without.

Rejuvinating

I am looking over my beloved ocean. We have been vacationing with old friends (the Hess's for those who know) for the last few days. The familiarity of being near the Florida surf and sun warms my body accompanied by the familiarity of being near those who know me and love me warming my heart. I am blessed.

In lieu of Mother's day

"The Mother who gives up her life for her children does them no kindness but rather burdens them with the legacy of a life unlived." -Janet Fallaron

"The phrase 'working Mother' is redundant." -Jane Sellman

"If evolution really works, how come Mothers have only two hands?" -Milton Burle

"Every beetle is a gazelle in the eyes of its Mother. -Moorish proverb

Remember

We do not remember days, we remember moments.

Words

I am a logophile, a lover of words. I love new words, long words, short words and if there is not a word for what I am trying to say then I will make up one.

I love a good story, a funny joke, rhymes, songs and most any kind of word play. Puns are my favorite. I have been told that I am quite funny in an off beat, quick-wit kind of way. I often entertain myself with a running commentary in my head.

In an effort to keep my blog going on a limited schedule I have decided I will commit to writing short quotes. The words of others inspire and comfort me. So without further delay-

"Life is an adventure or nothing at all." -Helen Keller

Where has the time gone?

Writing is a luxury that has not been afforded to me as of late. Seems like life is so busy with details and duties-cooking and cleaning, ad nauseam, laundry up the wazoo, bills to juggle, children to feed, doctor appointments, exercise, nebulizers...blah,blah,blah.

I used to be a firm believer in the saying that goes something like "we all have time for what we really want." Now I am not so sure. I feel swamped all of the time with too much to do and not enough time to do it. Or maybe I just don't know what I really want. Time will tell.

Seasons of life

The weather is getting cold. Again. Snow flurries in April, so much for global warming, this seems like the winter that will never end. We recently had a small reprieve from the cold season doldrums. The air finally warming enough for the dogwoods to blossom. The azaleas, which are the northern version of bougainvillea with their crepe paper texture, are also showing their bright faces.

I took a motorcycle ride yesterday. My first one in many years. The countryside was glorious, every curve bringing colors more vibrant then the curve before. The colors of Spring bursting forth with promise of a new season. With the wind in my face and the sunset at my back I was confident, ready to face the challenges of life.

Today the cold winds blow, the sky is a dull gray, soon the temps will drop to below freezing. I wonder if the delicate blooms will survive.

Stability feels good

"Clinically Stable". That's what the doctor's report said about me. It's been a while since anyone has described me as stable, for that matter, it's been a while since I've felt stable. Usually, when the lungs deteriorate to the point when spontaneous pneumothoraxes (holes in the lungs that cause the lungs to collapse) occur there is a downward spiral.

I've been home a week. I do not have to return to the transplant clinic until May. I only have five more days of IV antibiotics. I feel like I have turned a corner. For the past nine months my life has centered around the possibility of transplant. The fundraising, pulmonary rehab, doctor appointments, four hospital stays since last July...my life was consumed. It's time to focus on other things, time to broaden my view, search the horizon for other possibilities for my immediate future, time to move on...to what? I don't know but I'm going to have a good time figuring it out.

I'm free!

The ducks, oops, I mean doctors have made their morning rounds and their verdict is in. I've been given my walking papers. Let freedom ring. Around noon I will roll out of this hospital, pay my huge parking garage fee and be on my way. The sun is shining, the birds are chirping and all is right in the the world. (I can dream ok.)

Being in Durham for nearly 6 weeks has stretched me, at times I thought it would never end. But it has passed. I am reminded of a wise saying I picked up some where along the way-
Nothing very, very good or very, very bad, lasts very, very long. My time here is finished for now. I am going to relax and enjoy the long ride home.

IV treatment

I'm in the hospital. The oral antibiotics I've been on for the last 10 days were not strong enough to clear up my lung infection so I am starting on IV antibiotics. I'm at Duke hospital. The rooms are small but modern. The staff has been kind. Duke is a teaching hospital so when I see one doctor I see his entourage of medical students following after him, they look like baby ducks following their Mama duck. I must be getting old because these medical students look like they are right out of high school. I've got clothes older then they are. I hope to only be here for a few days. I'm ready to go home to Tennessee.

The Challenge

Rest and relaxation is good for the soul. Tom and I met up in Hickory, NC for the weekend. We hung out with my adopted family, the Hartzler's. Rich conversation, competitive rook games, playful banter that comes with people you know and love well. What more could I ask for. I feel refreshed and ready to finish my last week of pulmonary rehab in Durham.
I am overwhelmed at the thought of going home and trying to incorporate the exercise regimen I've been on. I know it is vital for my health to continue yet I struggle with feeling inadequate to get everything (cooking, cleaning, homeschooling, nebulizers, chest therapy and exercising) done.

The challenge
The needs are great
the resources are few
I am wondering how I'm going to get done
all that I have to do.

I've come this far
I will not turn back
God has provided
I have not lacked.

What's ahead I do not know
the future is hard to see
I know I'll get by
if I stay on my knees.

One step at a time
I say with labored breath
knowing I long for life
I will not give into death.

Not Yet....

I met with the doctor today. He said we are going to put off transplant a while longer. His reasons were I'm not on oxygen (some people never go on oxygen before transplant). I am relatively healthy compared to other Cystic Fibrosis patients (I always have been). Bottom line is He thinks ultimately I will live a longer life by putting it off as long as we can. His exact words were "Tina, If we did the surgery and you die then I'm going to feel really bad knowing you could have had more time with your family." OK. Reality check. More time is a good thing.

It's just that I have to adjust. Again. Transplant is still looming out there, in front of me. I was ready to get it behind me and be well or at least better then I am now. I long to breathe and not think about it. I want to make plans that don't have to be cancelled at the last minute because I'm in the hospital. I want to work again. I want to have more energy. I want it all. Right Now! Ugh, I am an impatient patient.

Bygone birthdays

Today is Austin's birthday. He is now 9 years old. I have been moody all day, wanting to be there, having to be here. This is not the way it is supposed to be. Although I can't be with him today, I hope my being here will insure that I will have many more birthdays to celebrate with him. My son is a blessing.

Monday, monday, can't trust that day.

Mondays are the hardest day for me. I have to say goodbye to my family. I have to return to pulmonary rehab. I have to adjust. Again. Sometimes it seems like life is one big chiropractic appointment, full of adjustments.

TGIF

The end of the week is better for me then the beginning of the week. Thank God It's Friday means I get to take a break from exercising and my family comes to visit. My dear husband has been driving seven hours (one way) across the mountains to come every weekend, sometimes he brings the kids. This weekend the whole family is going to the beach. Fortunately it is suppose to be sunny and in the mid 70's. We are celebrating Austin's birthday. My youngest is turning nine, last of the single digits. I cherish these moments together, they seem so fleeting.
I am not feeling at the top of my game. I am fighting a lung infection. I went to the doctor today and have begun a round of oral antibiotics. I will try them out over the weekend; Time will tell if the bug I carry will respond. Cultures take a few days to grow out so we begin treatment by guessing what germ I have based on previous experience. I have taken so many antibiotics over the years that the germs I carry have adapted and grown resistant to many common drugs. If the oral medications do not clear up the infection then I will go in the hospital to start IV treatment.
The doctors here know me and recognize that spending time this weekend with my family is important. I appreciate that they treat the whole patient and not just the disease.

The Beach

I am a determined person. In spite of a predicted winter storm that was supposedly heading our way I went to the beach. I sat by the ocean, the comforting sound of the surf was calming. The sand beneath my toes was a familiar feeling that I associate with being young, full of energy, free and frivolous.
I sat there gazing at the ocean for a long time, I prayed, I cried, I pondered, I got cold. I sat under my umbrella, bundled in jackets and blankets, rain pouring down, temperatures hovering in the 30's watching the only other people brave enough or crazy enough to venture out in the weather; The surfers, in their skin tight black wet suits looking like seals having a party. They were having a great time, getting up, riding their wave, crashing down only to rise again seeking their next wave. Near freezing temps were not going to stop them from having a good time. Perhaps when I get my new lungs I'll learn to surf. They look like my kind of people.

TMI

For those of you who don't know TMI stands for Too Much Information. TMI sums up this week for me. In the past 4 days I have learned that after transplant most people go home from the hospital taking insulin because all of the immunosupresant drugs you receive causes you to develop diabetes. I have learned that it is not uncommon after transplant to receive a stomach wrap. This procedure stops the new lungs from being damaged by acid reflux. When you receive a stomach wrap you can not eat or drink for weeks, maybe months at a time. You are fed through a G-tube inserted into your small intestine via a bag of nutrients that you receive similar to an IV. This week I have learned that if the doctor advises you to have a tracheotomy (also not uncommon) then you should happily receive one because they wouldn't recommend it if it wasn't needed. I have learned that the prescription drugs you receive after transplant can make you grow hair where you don't want it, lose the hair you do want, cause irritability and mood swings that can make you feel a tad crazy and, by the way, you will probably be on these drugs the rest of your life.

I am happy to report that in spite of feeling very overwhelmed I have processed all of this information without the numbing help of alcohol or narcotics; not that these substances have ever been a problem for me but I did think if there ever was a time to drink or take drugs now might be a good opportunity.

I am going to the ocean this weekend. I am going to bask in the sun. I am going to come to terms with all of this information.

What are the odds?

I am tired. Physically I feel exhausted and emotionally I feel overwhelmed. Each day brings new information that I try to absorb. Initially I was encouraged when I arrived here. I have met with a few post-transplant people and they assure me that the struggle of the exercise, the operation, the prescription drugs are all well worth it when they think about how easy it is to breathe. Their lives seem far from simple, post transplant life is similar to pre-transplant in that it is full of preoccupation about your health and the uncertainties that go with being sick. Rejection of the new organs can begin at any time. Yet they are grateful for the breath of life.

After a few days it dawned on me that I am talking to the "lucky" ones and I use that term very loosely. For everyone that I meet there are others who I don't meet because they are in the hospital, or too sick to exercise or dead. 15% of patients who go through transplant die the first year, 20% the second, 25% the third year etc. Only 40% make it to 10 years. I think I would walk away from a gambling table with those odds. Yet I can't walk away, this is the best gig in town. It seems the only thing that is 100% true is that there are no easy solutions.

Blue Monday

I don't feel like exercising today. I don't feel like facing the reality of my life. I feel like escaping...fleeing. If I were a drinker I would get drunk. If I were a smoker I would smoke (as if my lungs could endure that for very long.) If I were home in South Florida I would run to the ocean, seeing the endless water, the warm kiss of sunshine on my shoulders bathing me in light. The repetiveness of the waves reminding me there is nothing new under the sun. I am not the first to struggle nor will I be the last.

I have learned to ride the wave, the feeling will pass only to come again.

Fast forward

I've always been conscious of time, not in the way that I need to be on time to everything. (I was raised in laid back South Florida after all.) But in knowing that time is a commodity that will someday be used up. When I was younger one of my favorite songs was called Fast Forward by Prodigal:

Dreams all stop at 6am
the alarm clock rings once again
pump my body full of caffeine
aim my briefcase for the door
one more suburban blast off
hear the count down, 1,2,3,4

I don't want to be a number in a turnstile
another figure in a government file
I don't want to be a byte in the program
seven digits on a telephone dial

Fast forward, fast forward
time keeps slipping away
fast forward, fast forward
tell me where my life has gone
fast forward, fast forward
time keeps slipping away
fast forward

I do my job; I earn my pay
who needs dreams anyway
but now the days all fall in number
leaves on a dying tree
even wide awake I slumber
am I killing time or is it killing me?

I don't want to be a time-clock punch card
another scene on the cutting room floor
I don't want to be a marker in a graveyard
My life has got to count for something more

You can tell I grew up in the 80's. Since when does a telephone have a dial or only seven digits for that matter. As an adolescent I would play this song over and over and dream about all the places I would go and the things I would do. I was not simply going to pass time but make my mark on the world. In typical teenage angst I was chomping at the bit waiting to grow up and get on with my life.

Twenty something years later it seems I am still chomping away waiting to get on with my life. Today as I was exercising I pondered how I am approaching pulmonary rehab as a pause in my life. I was dreaming about how relieved I will be after transplant so I can move on to better things. I look forward to returning to work. I can't wait for my schedule not to be dominated by treatments, doctors appointments and the uncertainty of when the next health crisis will occur.

While looking toward the futures has it's place I realize that the reality is- this is my life. There is no need to wait for it, no need to move on, I am living my life. I do not want to sacrifice being fully present in the moment on the alter of waiting for the future. I do not want to miss out on the now by moving fast forward.

One small step for mankind.....

Today I walked one mile, a whole mile! It took me 24 minutes but I did it! Progress is being made.

Life in rehab

My day starts in the morning with the normal ritual of breathing my nebulized medicines- xopenex, pulmozyne, hypertonic saline and tobramyacine accompanied by constant coughing to clear out my lungs. Only now the routine is not mixed with the challenges of everyday family life. There are no kids to direct in homeschooling, no laundry to catch up on, no dinner to plan, no house to clean. I am responsible for only me, myself and I. What a strange feeling to have the constant pull from the tasks of life suddenly removed. I feel a little lost by myself.

I am off to pulmonary rehab at noon every day. I am there for 3 to 4 hours. I start the time with chest physio therapy, this is where a respiratory therapist beats on my chest and back in an effort to loosen the secretions. Lots of coughing is involved and I feel tired at the end but it is time to move onto stretching and breathing exercises. Then I walk for 20 minutes. Each step, each breath takes the effort of lifting an elephant from my chest and pulling the pachyderm along. After my walk I move along to weight training. The bigger your muscles are the more oxygen they need. I don't think I will be turning into Arnold Schwarzenegger any time soon. Finally I end on the nustep machine which is like a stepper but sitting down.

After rehab I took a nap in my van, eager to lay down, too tired to drive back to the hotel. I rested in the gentle sunlight and felt the warm embrace of nature caressing me, lulling me to sleep as I relaxed in the peace of the moment.

Along with the above described routine tomorrow I will begin transplant school, a series of lectures discussing all aspects of transplant. Do I really want to know more? What's the saying about ignorance being bliss?

Control Freaks and dizzy ducks

Knock, Knock

Who's there?

Control Freak. Now this is where you say, "control freak who?"

(If this joke did not strike you as funny then read it over a couple of times, it's complex humor that can take a while.)

I am a recovering control freak. I like my ducks in a row, in a neat symmetrical row lined up from head to tail with no variation. Sure I can be flexible, I like controlled spontaneity. (I like oxymorons too).

As I have pontificated before, the essence of life is beyond us, that which matters most we have the least amount of control over. The present economic earthquake has shaken many to their core helping them realize money is not at the center of all things. Lots of money amuses us so we don't have to think about what is at the center. It is good we are shaken so we can think about what is really important. However, it doesn't feel good.

When life is unstable we tend to micromanage so as to obtain some sense of control. When I say we, I am referring to all people as the control freak scale is a continuum and everyone falls on it somewhere.

Today I am reminded of the progress I have made in my recovery program. I am moving ahead without a detailed, nailed down, full proof plan. I am driving to Durham to begin the month long adventure of pulmonary rehab and all good pre-transplant proceedings. I don't know what lies ahead. I am not sure what it will be like. I will be by myself without my family for a large part of the time. I am not sure where I am staying. I am not certain of my schedule. As you can see my ducks are running about like renegade, foul fowl. God help us all.

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.