Embellishments of Life

They are embellishments: signs of life. They're the reminder of another day, our journey, and reflect the gift of living. They are marks that cannot be erased.  They are not battle scars, but the signs of truly living. 

The Lasting Impact

All that remains is a small pink dot about the size of a pencil eraser. It subtly adorns the underside of my arm and gives little outward suggestion to the devastation it has witnessed and the battle it has helped to fight these past months. However, it isn't alone. It is accompanied by numerous identical marks that have faded over time but still remain to tell of their own past battles.  Scars? No, they are merely beautiful embellishments left from my PICC lines that remind me of how lucky I am to breathe.

Even though my PICC line has finally been pulled, I have been free of IV antibiotics now for 2+ weeks, and the outward signs of my CF have dissipated, the effects of these past months can still be felt within.  The outer scars will heal, leaving minimal evidence of this last brutal battle, but the scars within leave a resounding reminder of CF's ruthless progression, the physical and emotional pain, the loss of the life I so dearly loved, and the shear desperation I feel to squeeze life from every moment. But these embellishments within also remind me of how grateful I am just to breathe, and how beautiful life can be wherever the path may be leading.  They are merely reminders both outwardly and inwardly of the impact CF has made on my life: some visible, some not.

Leaving Your Mark

What are the most beautiful embellishments?  The most meaningful and impactful embellishments of my life cannot be seen just by looking at me, but their marks are only visible from deep within.  These marks?  Left by the generosity, kindness, and selflessness shown by the extraordinary people that fill my life.  Those marks are deeply set and their impact is felt in every breath I take. I look back on the last several months and think of how greatly my life has changed, and I am filled with more love and gratitude than I ever thought possible.  I am still plagued by the fresh scars of my reality: the reality that I was forced to truly face these past months and continue to face. But those scars are nothing compared to the embellishments that dwell deep within me that were imprinted by the people I love: giving me renewed life, direction, and the strength to withstand whatever my journey has in store.  

The heartache brought on by CF is transformed into humble gratitude and an ever growing appreciation for life by the goodness and grace I have been gifted. I find myself today overcome with tears and emotion at the very thought of how so many people have touched and impacted my life.  There simply are no words, no actions... nothing that I can do to convey how deeply each one of you has touched my life. Every day I am reminded and humbled by the incredible people I am so lucky to know.  I hope to be a mere reflection of every embellishment that flourishes within me: the selflessness and pure goodness I have been shown by each of you. The world is filled with such beautiful embellishments that impact each and every one of us, we just have to open ourselves to seeing and feeling them.  

Signs

The signs of truly living are the embellishments in which inhabit each of us.  They are not battle scars, but mere marks of beauty that tell our story: reflecting the events and people who have shaped our lives so.  They may not be easily visible just by looking on from the outside, but beneath the surface their impact runs the depths of our being.  Love to you all. 

Take a moment to appreciate all the embellishments that have shaped your life.

Tenacity & Strength

The true strength and tenacity within ourselves are the sole make up of the people who hold us up, believe in us, and forbid to give up the fight when we are in need of saving.

As I sit across from one of my doctors at my appointment this last week, I was overcome with the emotional realization that I am not in this alone.  As I made light-hearted jokes about the future and talked about the tentative plans ahead, I knew the only reason I got to where I am today wasn't from me fighting CF alone, but from the multitude of doctors, nurses, pharmacists, friends, family members, and complete strangers holding me up, believing in every step of my journey, and always passionately fighting with me for another breath.   What an incredibly humbling thing to realize.  I wouldn't be here if it weren't for their relentless encouragement, steadfast support, and their commitment to doing everything possible to give me another tomorrow.

To Breathe
The last few months have been filled with endless IV antibiotics, countless pills, doctor visits, hospital stays, tests, blood draws, and the need for unyielding tenacity.  The last few months have held some of the most beautiful of moments and some of the most difficult.  At times, I thought I'd never feel like me again.  That with every setback came the panic and desperation to breathe, just for another day, month, or year: to merely live one more day in the life I love with the people I love.

I still feel that desperation to live, but today it is coupled with celebration.  At my appointment last week I had a FEV1(lung function) of 50%: almost double since this past November.  I have never worked harder and desperately wished more for that number.  To be able to breathe is simply amazing.  This is most likely where things will level off, but I will never stop fighting for more.

Testing the Waters
The direction and nature CF takes isn't clearly understood, nor can its future be clearly articulated.  What we do know is that with every ruthless infection and hit my body takes, it is harder to put the broken and shattered pieces of my health back together.  This shell of a body may have been left weaker and its resilience taking a brutal beating, but my determination and will are stronger than ever.  For the last 22 weeks (and counting), my body has been inundated continually with powerful cocktails of IV and oral medications in hopes of beating down the relentless drug resistant bacteria and fungus that are trying to steal my vitality, my strength, and my very future.  With that said, the time is coming in which the boundaries and limitations of my body without all these drugs needs to be tested.  I am filled with such a cacophony of emotions:
Gratefulness, for getting to this point in which I almost feel like me again.
Anxiety, for knowing the future is bound by the destruction of CF and the pain it will cause so many.
Infinite joy, for the relationships that have fed me and brought so much beauty to my life.
Nervousness, in wondering how long it will be before my body will betray me again.
Love, for the endless grace and kindness I have been shown.  
Hope, for the possibility of tomorrow.

I am so very grateful for those who have held me up through the hardest of moments, those who have celebrated each victory, those who continue to believe in my journey, and for those that have fought with me for every breath.

I am learning not to allow the past events to fill me with fear, or the unknown of the future to fill me with trepidation, but to live for the beauty that is present in this very moment.  CF may be progressively present in my life, but it will not rule by fear.  I will breathe bravely: continually renewed by the strength and tenacity that live within, knowing I am never alone in this fight.  Love to you all.

Each of our lives is filled with people who pour themselves into us, giving us strength and tenacity to endure whatever our journey may have in store.  

Thank them today.

Stormy Skies

A crack of lightning streams across the sky while the strong roar of thunder reverberates through the earth like the deep bass of a pipe organ.   A chorus of voices sing out with each drop of rain that resounds against the window pane.  The sounds and sights of summer have returned.

Perfect Night

This past week has been filled with the most beautiful and gentle of rains.  It has also been filled with some harsh summer storms that seemed relentless and uncompromising, leaving a path of destruction behind.  What also filled this past week? Some of the most beautiful and still evenings I can remember.  The sun was beginning to set and everything seemed to glow of a beautiful pink and gold hue.  For a moment it seemed as if life was standing still, that I was holding it lightly in the palm of my hand.  I could almost hear the shifting of the sky as the stars began to replace the sun bathed sky.   For a moment, everything seemed absolutely right in the world.    

Afternoon Storm

The next morning I awoke to an intense rain only to be followed by beautiful beams of sunlight that poured out over everything.  How very quickly things changed.  One moment the trees were soaking in the warm rays of the sun, and the next, tornado sirens were proclaiming their heed of warning.  In a matter of what seemed like just moments the sky opened up and let out a great fanfare: hail, rain, thunder, lightning.  The chorus grew louder as the drops of rain and hail poured out from the sky with more power.  We watched helplessly from inside as mother nature seemed to quickly devastate the world outside the stucco walls of our home.  

Eventually the clouds lightened and began to break apart, the rain ceased, and the sound of thunder was only a subtle rumble in the distance.  Soon, the radiance of the sun painted everything it could reach.  The evening turned into another one of pure beauty and perfection. 

The Storm & CF

What does any of this have to do with CF?  The raging storms of CF have been quite merciless lately.  It seems the atmosphere is just right for the makings of harsh storm.  My PICC line is still adorning my arm and a new course of treatment is underway.  In just 3 weeks my lung function went from 5O% to 37%, all while on IV and oral antibiotic therapy.  We've changed courses and plans in hopes that something will alter the direction of this storm.  

Hail

Like the weather, the conditions of CF can change so quickly.  In just one day CF can turn the sun kissed skies into an unforgiving storm.  

Renewal

Life comes with many storms and days filled with rain, but each one of them is simply beautiful.  As the warm rains of summer pour out from the sky, the earth is renewed and replenished.  Without those storms, the sun filled days would seem less bright, and we wouldn't appreciate the true beauty in those still and beautiful nights.  We can never be sure when a storm may come, foresee how strong it will be, or how much rain will fall, but we can be certain that the sun will shine again. We can be certain there will be days of endless sunshine and beautiful still nights.  The more rain that falls just means bigger puddles to splash in, and if the stormy days seem to never end, we can always dance in the rain.  

Another Beautiful Evening

This CF storm in my life shall too pass.  The destruction caused by this storm may have lasting effects, but that doesn't mean I won't fight to rebuild what has been lost or destroyed.  There will be days with light rain, days of sunshine, and days with fierce storms, but for each day I am truly grateful.  The beauty of life is impossible without the renewing rains from a storm.  I leave you with these words from a dear friend: "Anyone who says sunshine brings happiness has never danced in the rain." Love to you all.  

What storm are you weathering?

The Cost

I have a challenge for you today.  In the course of your day pick one of the following to thoughtfully experience or think about:  pouring yourself a cup of coffee, putting your seat belt on, writing your name, playing the piano, holding a spoon, brushing your teeth, typing on a keyboard, holding a camera, or climbing out/into bed.

Do you think about the act of doing or experiencing any of these activities, ever? Is there ever really a need to do so?  For the most part, no, our bodies just respond to the will of our mind and we never think about such things as how our hands feel gripping a coffee cup, how the pen feels between your fingers, or how the soles of our feet meet the ground.

But what happens when you wake up and your body doesn't work the same as you have always known it to work? When there is trepidation in every simple action? What happens when your hands constantly feel like they're asleep: numb and tingling as if being pricked by dull hot needles?  What about when your coordination and balance are skewed and unsettled?  Suddenly, the steady and stable person you have always known has vanished, leaving you uncertain and hyper sensitive to the world around you.  

Cost

Some days I wake up and I feel like my body doesn't belong to me: it's not my own.  The very life saving medicines working to fight CF also come with a cost. My body. Every addition of a life prolonging measure and medicine comes at a price.  Some days my body feels like my own:  the body that I used to know and trust so willingly. I am the coordinated and sure footed me.  I am so grateful for days like this.  They seem utterly amazing.  Then there are days when I feel like a complete stranger in my own body: like I am meeting it for the first time.  I have to consciously think about how tightly I am gripping my toothbrush, how I must use two hands to take a drink out of a glass, how to hold a pen and write my name, and how one foot goes in front of the other.  My body is pretty tough, but some of the drugs to treat CF can brutally make my body feel beaten.  My hands, feet, and tongue feel numb.  My legs feel like jello.  My fingers tingle.  My body uncontrollably gets the "shakes." So badly, that I had a student ask why I was shaking yesterday.  The most frustrating part of it all?  My same mind feels it no longer has control over its own body.  

What do I do on these days?  Try my best to hide it from the world, grip the glass tighter, and do everything with extreme focus.  These days make me really live in each moment: I am aware of all my surroundings and how my body is working in that environment.  These days make me so grateful for the days I feel like "me." No one ever said this journey was going to be easy, and I am strong enough to live the life I have so graciously been given.  I am still loving, I am still passionate, and most of all, I am still breathing.  Every extra beautiful breath experienced with the people I love is worth the cost. Love to you all. 

Do you feel like a stranger in your own body?

  

The Cover of Your Book

We have all heard the age old saying, "Don't judge a book by its cover."  The cover of the book never tells the entire story or what beautiful adventure lies within its binding.


What lies beneath the cover of my book?

What's hidden beneath my "cover."

My pages are illustrated by the scars of past PICC lines . Since last year, It seems I have had a PICC line more often than not.  To be more exact, roughly 28 out of 65 weeks, or 2OO days out of the last 465.  My arms look like a children's connect-the-dot picture.


What is a PICC line?
A peripherally inserted central catheter [PICC or PIC line] is a type of intravenous access that can be used for a prolonged period of time to deliver IV antibiotics.  In terms that are more understandable, it's an IV that can stay in long term.

Intermate.

I usually have a PICC line for 4 to 6 weeks or so at a time and do a regimen of different antibiotics, either continuously or every 8 hours.  Antibiotics come pre-measured in a small pressurized bottle called an intermate. I slip the intermates in my shirt and no one knows or can even see it.  When I am on continuous IV therapy I wear my "European satchel"all the time [a.k.a. my cross body bag/purse, but "European satchel" sounds more exciting].  Some of my favorite questions I hear when I have to wear it are:  "Do you know you're still wearing your purse?" "Do you have a weird attachment to your bag?"  They always make me smile.

Last PICC line - I bruise like peach.

During the last couple of PICC lines my Team has discussed putting in a more longterm IV option: a port.  For someone with CF, a port is discussed as an option because of the frequency of PICC lines and need for antibiotics, and running out of viable veins to keep using for PICC lines.  A port would be inserted beneath the skin in my arm near my elbow.  This connects a vein to a catheter through which antibiotics can be administered.  

 My PICC line is always hidden beneath a
 sock on my arm 
and under my clothes so no one will know.

My Team 
The wonderful people at Home Health and my CF team make it possible for me to do home IV therapy. Don't let me forget about the wonderful 2 nurses who always put my PICC lines in: I so appreciate their warm sure hands.  I am so thankful that my Team supports me and the full life I want to live: I couldn't do any of this without them.  


There are so many pages to be written in the book that is my life, and CF is not going to limit the beautiful content that is written within its pages: PICC line scars and all.  
Love to you all.



What do your pages say beneath the cover of your book?