Staying in the Strugglle

I just finished watching 65_redroses, a documentary about Eva Markvoort, a Cystic Fibrosis patient. The movie documents Eva's life before and after transplant.  I could relate to her fears and her hopes. I could relate to her sense of isolation in the hospital. Eva received her transplant at age 23.  She died two years later.  I wish the movie had a different ending. I wish she was still alive.

I am home after spending 10 days in the hospital.  I'm finishing my IV  antibiotics at home. I'm grateful to be home yet recognize the strain that it puts on me and my family.  I have round the clock antibiotics so I am so tired,  I do not feel fully present. The medicine makes me nauseous. My sleep schedule is off. I feel off balance. I am tired of struggling to maintain my health. It's a fight that is never over. I feel weary.

At this moment I am aware of an 8 year old CFer who is being admitted tonight to the hospital, a 16 year old CFer who is scheduled for surgery next week, a 25 year old CFer who has been waiting over 6 months for new lungs and a 38 year old CF transplant patient that died last week from rejection.  They struggle.  I struggle.  The struggle continues.

Homesick.....

As I am longing for home tonight this song brings me comfort:

There's more that rises in the morning
Than the sun
And more that shines in the night
Than just the moon
It's more than just this fire here
That keeps me warm
In a shelter that is larger
Than this room

There's more that dances on the prairies
Than the wind
More that pulses in the ocean
Than the tide
There's a love that is fiercer
Than the love between friends
More gentle than a mother's
When her baby's at her side

And there's a loyalty that's deeper
Than mere sentiments
And a music higher than the songs
That I can sing
The stuff of Earth competes
For the allegiance
I owe only to the giver
Of all good things

CHORUS:
So if I stand let me stand on the promise
That you will pull me through
And if I can't, let me fall on the grace
That first brought me to You
And if I sing let me sing for the joy
That has born in me these songs
And if I weep let it be as a man
Who is longing for his home

Step By Step by Rich Mullins

I'm hoping this is my last night in ICU. Finding comfort in this song-

Sometimes the night was beautiful
Sometimes the sky was so far away
Sometimes it seemed to steep so close
You could touch it but your heart would break
Sometimes the morning came too soon
Sometimes the day could be so hot
There was so worth much left to do
But so much you'd already done

Oh God, You are my God
And I will ever praise you
Oh God, You are my God
And I will ever praise you
And I will seek You in the morning
And I will learn to walk in Your ways
And step by step You'll lead me
And I will follow You all of my days

Sometimes I think of Abraham
How one star he saw had been lit for me
He was a stranger in this land
And I am that no less than he
And on this road to righteousness
Sometimes the climb can be so steep
I may falter in my steps
But never beyond Your reach

Life Today.

New beginnings are exciting and frightening. I am now a business owner.  I founded a tutoring service called Fusion Learning Center.  Our  mission is to unite life and learning by providing a positive educational experience through creative teaching methods, a supportive environment, and character development. Our goal is to prepare students for future success by engaging them in a dynamic academic program integrated with effective life skills.

We are scheduled to open in two weeks.  I have 5 students signed up, 2 of them are mine.  I don't think I'll be getting rich any time soon and that's not the point.  The point is to provide for my children's educational needs.  The point is to pour my energy into something substantial that will impact others, the point is to live well.

I am putting together a team of like minded people who want to change the world through education.  This feels good, purposeful, energizing and exhausting.  I hope I have the skills to be an entrepreneur. I hope I have the energy to sustain the vision when it's hard to see it coming together.  I hope, I hope, I hope.....

The State of Things Today

Last year at this time I had already been in the hospital twice and was beginning a major decline in my health that would eventually land me back at Duke hospital in North Carolina being evaluated for a double lung transplant.  To say it was a hard year is like saying the ocean is a little wet.  I have been stretched to my limit then stretched some more.  Seems like the stretching is still not finished and I wonder if it ever will be.

Break down the word disease and you get dis ease, this literally translates to the state of not being at ease.  In other words- struggling.  Add Chronic to the disease and you get continuous struggling. 

I live in the tension of accepting that life is a struggle and life is a privilege.  As I type this I am not wearing my oxygen mask.  I can breathe fairly easy and maintain my oxygen saturation level when not exercising.  Breathing is a privilege not afforded to all.  I am thankful, I am grateful and I am struggling.  Life is not compartmentalized into nice boxes with clear labels marked ease and struggle.  Life is a continual  mixture of both pleasure and pain for all of us,  even those with out dis-ease.

A Modern Day Parable.

 There was once a young woman who liked to play Candy Crush.  She spent much of her time and energy trying to calculate the right combination of the sweet confections so that she could move up to the next level.  Surely this time will be different she'd say as she started each new round.  On and on she would work trying different strategies, calculating her turns that slowly ran out until she heard the familiar music and was defeated.  This game intended to bring relaxation now became a stressor unto its' own accord.  Yet onwards, she would play, the familiar sound of the divine crunch bringing her another wave of optimism that perhaps this time would be different;  This time if she worked hard enough and did exactly the right moves then she would conquer and be good enough to move to the next level, only to struggle again.

Yay I say unto you, such is life without Christ and His Mercy.  Let Him who have ears hear.

Calmness in Confusion

As a mental health professional I am in a trusted position. By the time people come to see me they are often feeling a mixture of desperation, anger, sadness and hurt.  Let's face it, no one seeks out help when life is working for them.

My job is to reassure people when they are unsure. Feeling unsure is very uncomfortable. All of us, young and old,  like to feel competent and confident.  Confusion feels like the antithesis to security. However I have found that confusion can be the catalyst for great growth. 

Each one of us can think back to a time when we think we have life figured out and then an event happens that does not fit into our framework of how life is supposed to work. Perhaps it was an event that caught us by surprise, an action that  throws us off balance.  One of those events for me was the birth of my second child.  My firstborn, Ashley, was the epitome of a happy, quiet, easy- going child.  If I told her no about touching something she would smile, gently step away from the object of her desire and go about her business.  I naively thought her demeanor and pleasant attitude was a result of our exceptional parenting skills, after all, I had put much energy into parenting "the right way".  Fast forward four years and my son, Austin, is born.  It didn't take long to notice this sweet child was not as easily moldable, nor as easy going as his sister. 

Austin had a bad habit of escaping.  Like a little Alcatraz prisoner the kid would take off  running and not look back. We put locks on the fence, he learned to climb over.  We put a leash on him and he would play Harry Houdini and break free. Being the competent parent I was I pulled out my bag of tricks.  Consistent discipline with love was what this kid needed or so I thought. I pulled out my arsenal of tools:  I spanked, gave him time outs,scolded, chided and lectured. I took away privileges and handed out punishments.  Nothing seemed to work. There is nothing more humbling then having a three year old out maneuver you.

So out of desperation, I took a parenting class. I learned a few more techniques of discipline but mostly I learned to relax.  I learned that I was acting on fear and false beliefs.  I feared my son was going to become a juvenile delinquent because I could not control him. I believed I was completely incompetent as a parent because he refused to do as I asked him to do.  I felt afraid (and rightfully so) that he would get hurt if he kept running in the street.  I felt shame because I had run out of answers and I felt confused.  How could I have gone from being such a good parent to being such an incompetent parent.

The parenting class was a sweet mixture of good and bad news.  The good news was that I was not alone.  There were others, mature-competent-functions-well-in-society adults that were brought to their knees by their own little ones.  Just knowing I was not alone in my struggle was wonderfully refreshing news to me.  The bad news was they were as lost as I was.  Fortunately we had a good teacher who offered us great hope.  She reassured us that lots of out of control children become well adjusted adults, testing boundaries is a normal part of childhood.  Ten years later I am happy to report that my son no longer runs out the door and into the street.  He is able to delay gratification and responds well to authority.  I am pleased and proud of the person he is and the man he is becoming.

I am thankful for the parenting class I attended.  Thankful there was a safe place for me to share my struggles.  I am reminded of the healing power that comes when we are able to share freely, the encouragement that can come when we have the courage to speak the truth.

Calmness in confusion takes practice.  I have learned and am still learning how to relax in the unknowing.  God continues to give me many opportunities to learn the art of acceptance. Part of acceptance is realizing that it is unrealistic to think we can have perfect peace this side of heaven.  We have glimpses, fleeting moments when all in our world is right but then the moment passes and it is clearly evident that we are far from our true home.  Someday we will have eternal peace but not today. 

I will close with these encouraging words from one of my favorite songs that paints the picture of what I hope my future will look like some day- 

"In open fields of wild flowers,
she breathes the air and flies away
She thanks her Jesus for the daises and the roses
in no simple language
Someday she'll understand the meaning of it all
He's more than the laughter or the stars in the heavens
As close a heartbeat or a song on her lips
Someday she'll trust Him and learn how to see Him
Someday He'll call her and she will come running
and fall in His arms and the tears will fall down and she'll pray,
I want to fall in love with you."

Summer fun

Dreaming, planning, lounging, staying up late, sleeping in, reading, watermelon, sunshine, flip flops, maxi dresses and fireflies.  These are the things that summer is made of.  Love this season of  "Ah".

This season.

Summer is for relaxed schedules, sleeping in, long evenings filled with fire flies, gorgeous sunsets and mosquitos.  I love summer time minus the mosquitos.

Today

I hear my son's laughter trickle up the stairs as he banters with his friends while he plays video games.  I hear my daughter humming as she folds laundry.  The cats sit nearby watching the birds outside.  The sun will soon set on another day.  I take a deep breath.  I am blessed.

Today's bad poetry.

Resting-

I dream of a better place

when I am done with my race

not because I cross the finish line

but I've come to know that all is fine.

I need not hurry or compete,

For today, I have all I  need.......I am complete.







 

Transformation Time

Today I worked out at the gym for the first time since I've been home from Durham.   One small step to maintaining my health and transforming my life.

Tonight's Sunset

Tonight's sunset was glorious; a huge, orange ball slowly floating down to the silhouetted tree line creating the beautiful hue of brilliance that I like to call the golden hour.  Slowly it sank, lower and lower, little by little and then it was gone.

That intersection of time when the earth's energy ball  finally disappears always holds a nanosecond of sadness for me.  Strange, I know it's going to happen, it simply must, yet it still leaves me in a moment of stunned awe - it's over.  This day is done, never to return.

This week I watched from afar as two friends died. Knowing they were in the hospital and not doing well I wondered if this was the beginning of their sunsets or just a clouded shadow over their life.  As time passed it become clearer, as they struggled for breath and were placed on  ventilators I knew their sun was setting.

Her life ended due to rejection from her double lung transplant.  The new lungs she received sustained her for 18 months longer then her native organs.  He died from Cystic Fibrosis, too sick, too many complications to receive a double lung transplant.  Their final sunset has come, their days on earth are done.  Both of them were younger then I.

Tonight I wanted to honor their lives.  As the sun began its' downward dissension I remembered them. While speaking their names I stopped and was mindful of the gift of today.  I enjoyed another golden hour, the sun dipping ever so languidly, turning trees into dark profiles before it's final descent and then, in a moment, the day was done, never to return. 

Yoga

In the midst of trying to find life, figuring out how to live, getting my groove on, finding my bliss, et cetera et cetera ad nauseum - I am trying new things.  Today was yoga.

I don't speak the language of yoga so I'm not sure of everything that was going on.  At the beginning of class the instructor, a/k/a the yogi, said the intention of today's class was strength.  She said our goal is to listen to our body and stretch - going  to the place between easy and too hard.  That sounds like a good place.  I would like to visit there someday.  Today was not the day. 

Today I was a broken pretzel -  the big, hard kind from Pennsylvania Dutch land  that crumble when you bite into them.  All of the yoga poses were difficult and reminded me of how weak I am.  My body shakes with the effort of stretching.  My hamstrings are so tight they should be called pork cables.  My inner balance needs an alignment.   Perhaps pilates is the way to go....

A Dry Season.

"I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows."  -Jesus

"It's a bloody mess and that's all there is to it." -C.S. Lewis - Shadowlands

“I'm sorry to say so but, sadly it's true that bang-ups and hang-ups can happen to you” - Dr. Seuss

"Sometimes life just sucks."  -Tina

The State of Things.

I am home.  I've been home for a week.  I completed the IV antibiotic therapy two days ago.  The picc line has been pulled out of my arm. 

I am:
          grateful & lost & let down & relieved & tired & lonely & overwhelmed & well & restless.

Winter lingers, spring is coming. 

Homeostasis is desired but can not be demanded.  We simply must adapt to what is.  I must adapt.

Day # 4

Day #4 in the hospital.  My room is my cocoon, here it is dark, cool and comforting.  Outside I hear the muffled hustle and bustle of the staff.  Every once in a while I hear a bed alarm going off from down the hall.  "She'll be coming round the mountain" bursts out.  Seems odd that they play that song for a patient who is not allowed out of bed.

There is a bowl of grapes beside me.  The antibiotics gives me a metallic taste in my mouth.  I eat out of necessity not out of want.  Soon I will get out of bed and do my exercise routine.  I use coke cans as weights for my upper body strength.  I use resistant bands for lower body.  Then I will walk, round and round and round the floor.

I am reminded that walking is really all I need to do in life.  I don't have to run.  Life is not a race to be won. I can set my own pace,  one foot in front of the other, one step at a time.

The Quest for Balance

I am back in Tennessee, back in the hospital.  This past week has been extremely stressful.

Last Thursday I traveled  to Nashville to Vanderbilt hospital.  I wanted to compare another transplant center to Duke and I wanted a second opinion.  The were in agreement with Duke's assessment.  The window is not open, it's too early for transplant.

That's the good news, the more challenging news is I must stay committed to the exercise/wellness routine that has been presented to me.   I don't know how to do this.  In Durham at the Center for Living it was easy.  The routine was established,  there were many people struggling with health problems so a natural comaraderie existed which was very encouraging.  I was one of many on oxygen so I didn't stand out, I felt normal.

Now I am returning to a world where I feel alone in the struggle.  Yes, I am fortunate to have many supportive people around me.  I am grateful to my friends and family who are encouraging to me but unless you have struggled with a chronic disease then it's hard to understand the weariness, the burden, the loss, the sense of isolation that goes with declining health.

I feel uncertain that I can predict how my life will be lived out. There are too many balls juggling in the air right now to think about the big picture.  The quest for balance continues.

For Today-

The world breaks everyone, and afterward, some are strong at the broken places

- Ernest Hemingway

 “My grace is sufficient for you, for my power is made perfect in weakness.”  2 Corinthians 12:9

Hmmmm......

“If you can dream it, you can do it. Always remember that this whole thing was started with a dream and a mouse.” 
― Walt Disney Company

Stumbling along

Yesterday I sat in the surgical waiting room at Duke hospital.  Stressed out families were littered about like salt spilled on an icy sidewalk.  Each filled with nervous tension, awaiting for word from the doctor.  I was keeping Cindy company until her family arrived.  Her son, my friend from pulmonary rehab, Travis was receiving his new lungs

Travis is breathing on a respirator this morning in ICU.  The recovery process has begun.  Three of my friends from pulmonary rehab were given new lungs in the last week.  I am so happy for all of them.

I was caught off guard by the tidal wave of despair that hit me when I came home last night; so much disappointment.  In the quiet seclusion of my room I was flooded with tears of desperation.   My journey here is almost done.  I am to go home with instructions of keeping up the regime I've been adhering to here- nearly 3 hours of exercise a day.  How anticlimactic.  I feel set up to fail.

My life has been turned upside down, being sick will do that to you. There is no end in sight so I am blindly stumbling along, having lost my equilibrium a long time ago.  One foot in front of the other, not sure where I am going just trying to keep going.

What's Next?

“You are never too old to set another goal or to dream a new dream.” 
― C.S. Lewis

Staying in the Struggle.

Last Sunday I was pondering the benefits and risks of receiving a double lung transplant.  The up side - if things went well -  was the ability to breath, with out thinking about it.  Swimming, biking, hiking, the possibilities were endless, who knew what all I would do with a new set of organs.  I had BIG plans- Walking AND talking AT the same time; Washing my hair while STANDING in the shower; I was to become a diva of domestic duties- I would clean AND cook, surprising all around me with my amazing new stamina.  Maybe, just maybe I would eventually return to my career,  a job that I dearly loved and missed. I had so many plans mixed with a few dreams of my life to come.  I had hoped.....

Hope is what gets us through the hard things of life,  Hope that tomorrow will be different.  Hope that life will change.  Hope is what makes the risks of transplant manageable.  The many side effects of steroids, - chipmunk cheeks, acne, swinging emotions, extreme hunger to name a few;   The dangers of the immunosuppressant drugs- infection and rejection; the high mortality rate - 50% of double lung transplant patients die within 5 years.  HOPE is what give you courage to face the trials of life.

I have spent a tremendous amount of energy psyching up for the incredible possibilities of transplant then came the news that it was not to be; Transplant is to be postponed.  I find myself unsure of what to hope for now.  I am physically better then I was a month ago when I started pulmonary rehab.  After weeks of intense exercise I am healthier.  But I am not healthy enough to do what I would like to do.  There will be no swimming, biking or hiking for me any time soon.  I am not healthy enough to become a domestic diva.  (I was ambivalent about that dream anyway).   I am not healthy enough to return to work.  I am not healthy enough to live without oxygen.

I am healthy enough to stay in the struggle; the struggle to manage my time so I can do all my nebulizers, receive chest physiotherapy, exercise on a daily basis and have time and energy left over for relationships.  I am needed by my family.  I want to richly and  freely contribute to their  lives and others.  I know the purpose of postponing transplant  is to keep me alive for as long as possible.   I trust and agree with the doctors' decision.  I want to live for as long as possible.

 I am in the process of  adjusting to a new life style;  progress does not come easily. I have to figure out how to do all that I can while being satisfied with not being able to do all that I had  hoped to do.  I have to revise my dreams and  learn to hope again. The temptation to avoid disappointment by avoiding my dreams is strong.  However, without the hope for more then the day to day struggles then life becomes overwhelming. 

For now I am lost in the muddle of the middle, finding my way, committed to staying in the struggle.  For today, that's the best I can hope for, and for today, it is enough.  There's always tomorrow.

Emotional Whiplash

I had hoped.........
      someday soon I would  breath easy,  I would walk without being winded, I would laugh without coughing.  I had hoped to ride bikes with my children, to sleep without being tangled in an oxygen line.  I had hoped for more then what I have.  Hope is dangerous, it lays open the heart to deep disappointment.

I had a meeting with Dr. Reynolds this morning.  This was the first time that I have seen him since he told me that I had reached the transplant window, that was nearly 3 months ago. Since then I have been working to accept that my fate had been sealed, it was time.  I have listened to every request the transplant team has presented to me.  I have relocated my whole family; completed every test, jumped through every hoop and now this....

Wait.  It's not time yet.  I'm better, not as good as I had hoped for but better then I was.  Can I be satisfied with this - tied to an oxygen machine, waiting to get sicker, the threat and promise of transplant continuously looming on the horizon?  Can I wait in peace knowing my time will come, that time on this side of transplant is a familiar battle, a fight that I can keep up for a while longer, a gift to be cherished?

Time will tell.

An Intense Week (and I'm not talking about camping).

I usually don't blog when I'm in a bad mood.  I tend to hold my darker feelings closer preferring not to spew to a world that is already full of negativity and downers.  But tonight it's different, I feel like venting, so let the ranting begin-

This week has been intense,  it began with a bone density test that showed I have lost some bone mass.  This is a nasty side effect from the massive amounts of steroids I've been on over the years.  Unfortunately the future immunosuppresent drugs will cause further deterioration of my bones but I'll be fortunate if I live long enough for this to be any major problem.

Next was a  CT scan  of my sinuses.  If infection is shown then I get the pleasure of having a sinus cavity debridement .  Any residual infection will potentially  negatively impact the new lungs and while I don't want that the thought of having a rotor rooter in my nose is not a pleasant one.

During the consult with the nutritionist she advised that I may need to lose another 10 pounds.  The thinner you are, the easier it is for the surgeons.  She advised not to go too low on the BMI scale as I will lose weight immediately after transplant.  Apparently  it takes your body time to learn to swallow again.  Of course, that is if you are allowed to eat which sometimes you are not allowed to for weeks.  Not to worry a convenient feeding tube will be shoved down your nose and inserted in your stomach.

The pharmacist went over the high cost of post transplant medication which can range from hundreds to thousands of dollars per month.  These meds also contain a wide myriad of side effects including but not limited to- acne, hair loss, extreme agitation, depression, anxiety, fatigue, insatiable hunger, and the occasional loss of digits.

Then there was my annual pap smear.  Enough said.

Tomorrow,  I  am getting a virtual colonoscopy.  This procedure will involve pumping air into me while a CT scan looks inside, all without the joy of sedation, I might add.  Today is prep day which involves not eating anything and drinking horrible, gross stuff-   barium sulfate, magnesium carbonate and citric acid.  The grumbling is building and soon the desired cleanse will begin.  My very own gastric Mt. St. Helen complete with nauseous gases will erupt.

 I have a head ache.  I am hungry and grumpy. I am tired of being poked and prodded.  The worst part is knowing there is no end in sight; it's going to get worse, much worse, before it gets better. 

Endoscopy complete.

Yesterday, As part of my pre-transplant exam  I had an endoscopy.  It's like a colonoscopy but from the opposite end.  A tube with a camera was threaded through my mouth, down my throat, into my stomach and intestines.  Thanks to the wonders of sedation I did not feel a thing.  Pictures of my insides were taken and a clip was placed on my esophagus.  For 48 hours this tiny tool measures stomach acid and communicates to a little computer clipped to my belt. Eventually the clip will dislodge and pass through my body.

The information the doctors are looking for is vital in assisting with the transplant.  New lungs are fragile and if a patient has too much acid reflux then the acid can "spill"  over into the lungs and cause damage that could result in rejection of the new organs.

This is one of the possible complications of transplant, to combat this problem the patient receives a stomach wrap and is not allowed to eat for weeks, some time months, while the body adjusts to the new lungs.  I am hoping for good results and will not have to endure a stomach wrap.

Pulmonary Rehab

What is pulmonary rehab like?  The words that come to mind are intense and exhausting.  I come home tired, so tired that  I have not been able to blog as much as I would like, nor read or play scrabble on-line or a myriad of other things I like to do when I have the energy.  Such a finite world full of choices that we live in.

Below is an extensive account of a fellow patients' lung transplant experience describing pulmonary rehab.  She paints with minute detail the picture of a typical day of pulmonary rehab, doing a much better job then I have the time and energy for at this juncture:

"I recently began actively making preparations for double lung transplant surgery by starting the intensive physical therapy program at Duke's Center for Living. All lung transplant candidates are required to attend 23 full sessions of Duke’s  specialized and personalized exercise program, which prepares patients for the actual surgery and recovery. These sessions are from Monday through Friday, 12:30 to 3:30,  and then 2-3 times a week we stay an additional hour for lectures. Many of the exercises are designed to strengthen the body in preparation for specific physical tasks and activities encountered during the time patients are in the ICU and Step Down  “In-patient recovery stages” of post-transplant hospitalization. For example...making us do squats will enable us to go to the bathroom by ourselves. Bet you never really thought about how strong your legs need to be in order to lower and raise your body from a toilet seat. Actually, by the time patients find themselves in end-stage lung disease, even the simplest of tasks become enormous mountains to climb over. Things we previously took for granted such as washing our hair in the shower, now take monumental effort and we are exhausted after bathing, brushing hair and re-dressing.

After checking in to the center by scanning my ID card, I grab a couple towels, head to the women's dressing room to weigh myself, stop by the counter and get a pair of medical gloves (required to help keep us free from passing or getting germs from equipment).  Once all that is done I take a seat alongside the other patients and wait for the staff to begin their routines. They come by with our medical charts in hand and start drilling us with questions.  "Do you have a clipboard yet? Are you in pain related to this program? Where? On a scale from 1 - 10 how would you rate the pain? Do you have to take your blood sugar?  What were your readings? How much did you weigh today? What level oxygen are you on right now? Give me your finger." (How much is my oxygen? I wonder.) "It's 96 percent. That's pretty good." (I think: 96%? Well, you shoulda took it when I stumbled through the door a little while ago!!!!)  "Okay,  let's get your blood pressure now." And so it goes...until all 35ish of us are done.

We all strap on leg weights…I am pretty strong so I started with 2 lb leg weights instead of one pound and I just got moved up to 3 pound this week.  They are NOT designed for walking…they (and therapy bands) are designed to provide resistance during leg lifts and ankle rotations. We also use the dumb bells to increase our arm strength. We have trainers who guide us through a solid non-stop one hour workout.

Duke Center for Living staff are the most awesome people I have ever met. They are helpful, knowledgeable, and determined to help you have a successful operation and recovery. They KNOW their stuff.  I like the fact that each day a different person leads the floor exercise instruction because each has their own specific style and area of the body they like to work out on.  The routines are all fairly similar, but the trainers add their own twists. We have days that seem tougher than others….because some trainers are “grueling and unmerciful” (again, thanks David) while others use a slower pace with more breathing opportunities built in. But you know the saying, no pain…no gain.  That goes for sweat too!  I finally found out what that is!  I have noticed how attentive the staff is to our needs: always checking the level of oxygen in our tanks, asking how we are doing, providing smiles of encouragement, assisting with equipment.  They just  represent customer service at its highest levels.  I have NEVER seen anyone grumpy or upset.  They all seem to really enjoy their work and it shows.

After floor exercise, we (or rather everyone else) must wipe down their equipment and mats and return them to the storage locations. It is not easy to pull an oxygen tank AND juggle a couple of mats, two leg weights and two hand weights and stop and clean them before hoisting them up on the storage rack.

 While we were on the floor, a white board has been set up with three groups identified: Walk, Weights and Bike. Each category has 15 or so names listed. The group has been split up into exercise stations that we will rotate through in a clockwise manner. Each day we are rotated to start at a different station. So, if I started at the weights today, then tomorrow I’ll start at bikes and the next day my starting activity will be walking. It breaks up the monotony that way. Another help in breaking up the routine is by alternately walking counter-clockwise around the track one day and switching to clockwise the next. If the group I am assigned to is walking, then first we must report in to the trainer desk. 

They verify that our tanks have sufficient oxygen in them to get us around track for our duration, if it is set to the proper oxygen level, and if we have our counting beads with us. On our first day we were presented with a cord of approximately 30 little plastic colored beads strung on. I tried using them a day or two. But I found them too small and easy to miscount with. I bought me some larger wooden beads with substance of varying textures, sizes and color tones and made my own counting beads. The trainers set a timer for 20 minutes, unless it is Tues or Thurs, and then we have to walk for 30 minutes. 
Next stop is the weight section and I don’t mean Biggest Loser weigh-in. It’s power lift time!  There we will alternate days between working on our upper body and lower body. The physical therapist has evaluated our abilities and developed a weights plan to gradually build our strength up.  We have about 4-5 different machines for upper body and 4 more challenges such as lifting hand weights, a cane, squats, etc. The next day involves much of the same designed for our specific lower body needs.

.  We call them bikes, but they are actually something called Nu-Step. We are seated in a recumbent position. Just like sitting in a car. Our feet are extended onto foot pads. Instead of rotating our feet in circular motion like a bicycle does, we use stepping motions to apply pressure on the mechanism that measures our distance, level of resistance, time, watts produces, steps taken, etc. There are also two handles that some people use to help strengthen the arms and assist with the force requirements.  We do this for 20 minutes."

This is my new routine.  

 For Susan Traxel Marvin's full account go to - www.dukelungs.org/Pulmonary_Rehab.html

CF Poem

Cystic Fibrosis Poem

This is my life, Every morning to every night, Everyday there is a constant fight.

But not everyone can see, this fight is between my body and me.

I hurt, I cough, I cry, I breathe, I just want a break is it hard to see?

They say I'm a hero, they say I'm strong, but sometimes I think they are all wrong,

I smile, I laugh and pretend I'm okay, Truthfully, that’s how I make it, day by day.

I constantly hear healthy people complain. Seriously? How many times have you had a needle shoved in your veins?

I sit, I cough, I gasp for air, and at the same time, it feels my lungs are starting to tear.

Doctors, treatments, needles and pills, Just the sound of them, gives people the chills.

Im fighting, I'm breathing, but at times I'm simply deceiving.

It might seem simple, maybe easily done, but I've been fighting my whole life. And this battle I still haven’t won.

You know I'm greatly jealous of you, because you have lungs that for me, would be considered brand new.

But really what else should I say? I shouldn’t just sit here and complain.

I have my friends, my family, and I have myself. That’s really all I need, even if I'm not in great health.

I'm going to fight and im going to win, I'm going to use all the strength I have within.

I've came this far along, and I promise you, im going to stay strong.

Thousands of people, fighting to breath every day, Thousands of people, just waiting to be okay.

This isn’t something you can just simply ignore. I think it’s time for a cure Need I say more?

-Unknown writer.

Love Remembers You

by Same State

 You’ve got a tear in your heart
Seems like it’s been there for years
You’ve never known love without scars
Or hope without fear

You blame all your trouble on God
You think he forgot about you
Cause life wouldn’t have to be hard
If He’d just come through
But He’s gonna come through

Cause tears don’t last forever
You ain’t always gonna lose
So if you’re frozen like December
The summer’s commin soon
Love remembers you
Love remembers you

So lift up your eyes oh weary soul
Quit makin friends with your pain
Cause you’ve got a heart made of gold
He won’t let it go to waste
You’re going to be okay

So hold on tight
You’re surrounded by
Saints and angels
And there’s a light
Shinen all the time
For all the faithful

Cause tears don’t last forever
You ain’t always gonna lose
So if you’re frozen like December
The summer’s commin
Oh summer’s commin
Cause tears don’t last forever
You ain’t always gonna lose
So if you’re frozen like December
Summer’s commin soon
Love remembers you
Love remembers you
Oh love remembers you
http://www.youtube.com/watch?v=zQbE3cYSt10&feature=youtube_gdata_player