68 days

9 weeks and 5 days.

68 days.

1,362 hours. 

What has your life looked like the last 68 days?  Think of all the exciting things you've done, the places you've gone, the people you have seen.  Have you gone swimming?  To the lake? Have you spent time outside working on that tan?  Now, think about what you've been wearing these past few months.  Short sleeved shirts? Tank tops?  Swimsuit?  Now, think about how many showers you have taken in the last 68 days.

I know, you're wondering, "what the heck do those random questions have to do with anything? How many showers, really?" Yes. Really.

The Best of Days

This past Friday was an absolutely glorious day.  After 68 days of IV antibiotics, I got the "ok" from my CF Team to get my PICC line removed.  I honestly felt like a five year old on Christmas morning: so excited and giddy with anticipation for my appointment. I was overcome with joy and the possibilities that lie ahead.  Why was I so excited?

What does life for 68 days with IV antibiotics and a PICC line look like?

1.  No real showers.  I know what you're thinking, "ew." Yes, I still shower daily, don't worry.  I just can't get the 4x3 inch area of my bicep wet where my PICC line lives.  I can see you pondering such a situation.  Most people cover their arm with plastic wrap or a bag, but that means someone has to help wrap and tape it up.  It's a terrible feeling having to rely on people for such basic needs as showering.  I, however, have come very talented in the areas of being able to shower without any covering and managing not to get my PICC line wet.  I know, I am talented.  

Last IV

2.  Cardigans.  Lots of cardigans.  It's summer, and it's hot.  My morning usually consists of planning what cardigan I am going to wear for the day to cover up my PICC line.  It's 92 degrees outside, and what am I wearing? A cardigan.  I am sweating to death, but that cardigan keeps my secret hidden beneath its sleeve.  My pasty white arms yearn to see the sun.  

3.  A strict schedule: calls to Homehealth, deliveries of IVmeds every few days, weekly PICC dressing changes, trips to the clinic for lung function tests, consultations with my CF Team, every 8 hours of administrating antibiotics, and planning my day out to fit all CF's demands. 

4.  Patience.  I have learned that it seems like in an instant an infection can flare. That all the hard work and progress I've made can be so quickly undermined by an exacerbation.  That my lung function can quickly plummet 1O% after working for so long to get it up. That my body can quickly rebel.  I have learned that the fight takes patience. That I am not going to win this battle in a day: it may take 68 days, or more. That things might get worse before they get better.  There's no sense in wishing things to be different because they're not.  This is the life I have been granted and with that I am thankful for each battle and the patience to endure. 

5.  Sleeping.  When I am hooked to continuous IVs, sleeping isn't the most ideal.  My "European Satchel" comes to bed with me, and often times I awake in the middle of the night wrapped in tubing.  I also have to make sure that I don't abuse my PICC line too much with tossing, turning, or sleeping on my arm. 

PICC free

When you pick out your clothes in the morning think about having to cover your arm.  When you hop in the shower to quickly rinse off think about not getting your arm wet.   When you go to sleep think about not sleeping on a certain side.  Think about the first thing you have to do in the morning is "hook up" and how the rest of your day is going to play out.  

Excitement

Friday morning I awoke filled with so much excitement.  Excitement to reach 48% lung function.  Excitement for freedom from a strict 8 hour schedule, no cardigans, a real shower, to go swimming, to sleep untethered.  Excitement for freedom, even if I know it won't last forever.  No matter how many days I get of "freedom," I will be immensely thankful for each of them and grateful for my CF Team that has helped me reach this point.  Love to you all.

What have your last 68 days looked like?

Celebrate

twinfallsfireworks.org

There are few things as miraculous and beautiful as looking up into the night sky and seeing a burst of color dance across the sky: an amazing celebration for every onlooker.  I remember as a child sprawled out on a blanket in the middle of the outfield of the neighboring town's baseball diamond, looking up at the sky and waiting in anticipation for the light show that was going to be painted across the sky.

There is something so special about the moment when the first firework unfolds its glory into the night sky for all to see.  We know we are about to witness an entire fanfare of timeless and awe striking beauty. The sound of each firework being lit, hearing it soar to the sky, and the anticipation that stirs within as we wait to see the magnificent burst of color against the black canvas.   I think we have all whispered to ourselves "that kind is my favorite."

twinfallsfireworks.org

Effortlessly, the miraculous explosions of color dance against the night sky like a choreographed dance before our eyes.  At the beginning, one firework goes up, then another, not impeding on one another's moment.  Then suddenly, there are multiple fireworks awakened at the same moment, creating a mesmerizing and continuous explosion of color in the sky.  A flourish of fireworks continues to build in intensity until suddenly it's over.  All that is left is a sea of smoke and the smell of sulfur.  Once again, the sky is returned to its black canvas: the celebration of endless color has ended.

Celebrate
What makes a celebration so special?  The word alone gives excitement.  We wait in excited anticipation for each celebration in our lives, each event worthy of fireworks.  The day and event finally arrives. We are encompassed in joy, but then the day is over.  The celebration is done.  All that is left of the day are memories and the joys we experienced that will forever live within us.

But why can't every day contain that level of excitement?  Why can't we anxiously and excitedly look to "tomorrow": the day after the celebration?

Each day is a celebration in and of itself. There is always something to celebrate, great and small. This day has been given to you, celebrate it.  Does it require a show stopping fireworks display? No, but each day deserves a celebration all its own.  What am I going to celebrate today? I celebrate the beauty that greeted me as I walked outside this morning. I celebrate the opportunities the day has in store for me. I celebrate that I have the most wonderful people in my life. I celebrate each moment that makes me smile.  I celebrate each breath.  Love to you all.

What are you celebrating today?

Sunshine On My Shoulders

Take a moment to step outside and close your eyes. Quiet your mind listen to the world around you.  What do you hear? Feel?  There is nothing I love more than stepping outside this time of year and feeling the warmth of sunshine upon my face.  This morning I hear the chirp of the cardinal and the coo of a morning dove.


I and a large majority of people who call the midwest home are pretty naturally fair skinned, but our complexion becomes even more "lily white" during the winter months when the sun's rays are less powerful and we are shut up in doors.  It seems my skin becomes so pasty white it is almost reflective when it sees the sun for the first time in the Spring.  One of my very favorite things also in the Spring is to sit beneath our pergola or in the swing Mark made out of an old victorian bed frame.  For a brief moment life seems to stop and all is right in the world.


Photosensitivity 
What if after ten minutes of soaking in the sun's warmth your skin begins to burn or you start to break out in hives from the heat?  Your cheeks begin to get hot, the scalp of your part begins to singe, and the tops of your hands and feet begin to redden and get bumpy.  The sun your skin so loves and craves only inflicts a lasting distress.  My skin for the last decade or so has been more and more sensitive to the sun, but in the last year and a half some of the medications that are now part of my daily life to fight CF make my skin extra sensitive to the sunlight and cause it to easily burn.  How do I fight back? I wear high SPF sunscreen, long sleeves, sunglasses, a big floppy hat Mark bought me, and sit in the shade.  Gone are the days of a golden summer sun kissed glow. Pale and pasty are my new tan, or if I am in the sun too long, the shade of a steamed lobster.

I still crave the sun.  I still love closing my eyes and feeling the warmth on my cheeks. I love being still for a few moments, forcing myself to feel and hear the beauty all around me, to let the world seem like it is all mine for just a moment.  Love to you all.

Step outside today and bask in the beauty of the sun's warmth, but don't forget your floppy hat.