Unspoken

"Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do.  So throw off the bowlines.  Sail away from the safe harbor. Catch the trade winds in your sails.  Explore.  Dream.  Discover." - Mark Twain

When you look ahead 2O years what do you see?  What about 1O years from now? 5 years? What dreams live inside of you waiting to be unleashed?

To be completely honest, there's no question I dislike more than when someone asks me about the future and my dreams.  What do I say? If they only really knew the pain and fear the answer held.  If you know me, you know it's so important to me be accountable for what I say and aspire to do.   If I set my mind to it, I will accomplish it.  I do not give up.  

The Truth

Of course I have dreams, ambitions, and the hope of a life filled with no regrets, but CF often reminds me of a future of altered dreams.  A future whose seas are uncertain, riddled with looming storms, and tumultuous waters.  If you know me, you know I rarely take life seriously. I am always making a joke about the serious matters of life: humor coated in sarcasm is my specialty.  Underneath the cynicism?  Fear and uncertainty of the future.  Most recently people ask what I hope to do after I am done with my graduate degree. What dreams I have. What do I think silently to myself?  "I hope to still be breathing."  It seems any thought of the future and dreams begin with that simple thought. What if CF didn't hold me back?  It didn't infiltrate my mind with the worries and fear of the future?  What if when I thought about the future I didn't think about what will happen to the people I love and all the life I will miss? For the most part I can separate myself and hide the worry and fear and just focus on living for today.  I think back to the last year and wonder some days how the heck I survived it: physically, mentally, and emotionally.  Then I think ahead and know I don't have any other choice than to live each moment to its fullest: to set sail with no regrets.  What kind of life do I dream of living?  One that leaves a legacy of goodness, kindness, strength, passion, and love.

Growing Old
It's become hard for Mark and I to talk of the future.  By the future I mean 1O years from now, 5 years from now, even 1 year from now.  Very rarely do we talk about growing old together.  When we do, it's plagued by a deep unspoken pain within our hearts, for we both know the cold truth and reality that lies ahead of us.  You who are close to my life probably have heard me often joke about Mark's life after me.  Call it a coping method?  A way to ease the blow of the future?  I think about Mark's life without me, the future that could have been, the dreams that may never come to fruition.  I think about him waking up in the morning and me not being there, seeing traces of me everywhere he looks, seeing friends and family that won't know what to say.  I worry that he won't be ok.

 We must intentionally live day by day, being grateful for whatever we get, and making the most of each moment.  No one's future is set in stone, so make the most of each breath you are given. 

Regardless if the dreams that live within me need to be altered, or new dreams need to be created, I am grateful for each day, each opportunity, each relationship, and each breath.  Whether it's 2O, 1O, or 5 years, I will look back on my life and know I lived it with no regrets.  Love to you all. 

Don't let there be any regrets today.   Sail boldly out into the open sea. 

Rise & Shine

Listen.  Do you hear it? It's the sound of a beautiful new day beginning.

Everyone has their normal routine they live by, whether it be consciously set or not.  Think of your morning.  Do you drink coffee first and then shower? Or do you check your email, shower, eat breakfast?

Your routine doesn't stop there though! It continues on throughout your day until the fresh beginning of tomorrow morning's sunrise.

Have you thought through your daily routine? Now try adding this into your usual routine of work, school, and family: set your alarm for 45 minutes earlier, set aside 45 minutes in your late afternoon, and carve out 45 minutes before you go to bed.  How would that impact your day?

My day begins in my little black chair doing a VEST treatment and Nebs.  Most mornings I would love to stay in bed for that extra 45 minutes, but I know CF doesn't take a day off, so either can I.

What is the VEST?

The VEST is an airway clearance device that uses High-Frequency Chest Wall Oscillation [mini-coughs] to dislodge mucus from the bronchial walls in hopes that the mucus will be easier to clear.  Mucus settled deep in the airways is a breeding ground for infection, thus making the mobilization of mucus so important to maintaining the progression of CF.

Say What? I know, it's hard to explain.

Imagine wearing a life jacket that fills with air and shakes up to 25 times per second for 3O minutes straight.  One might think, "that would be a great time to read, write, or do homework." Sadly, I have not mastered the art of reading and writing while being shaken so vigorously.

Nebs

Inhaled nebs are another crucial part of my CF regimen.  Four different inhaled nebs accompany each VEST treatment, taking about 45 minutes for completion each time.

   -Bronchodilator: Opens up airways

   -2 types of Mucolytics: Thins mucus

   -Antibiotics: Fights CF bacteria and infection

A date with my little black chair.

Full days mean neb treatments in the car

As Cystic Fibrosis progresses so does the need for more treatments during the day.   Currently I do 3 treatments a day for a total of 2 + hours a day spent in my little black chair.   During times of exacerbation and infection, more VEST and neb treatments are necessary. As time rolls around for my next treatment, my lungs are usually craving a good shaking.  I am not going to lie, sometimes I feel like I am chained to that chair, but I know it's helping to keep me alive.

Today is going to be a very full, but beautiful day, so I must rise and shine!  Today is another day I get to breath.

What do you rise and shine for in the morning?