Thin Ice

There's a hesitation within my step.  My body tenses as I suddenly become aware of every cell within  my body: from my fingertips down to the soles of my feet.   I take a deep breath and gasp as I feel the pungent crisp air pass between my lips and fill my lungs.  For a moment I hold my breath and close my eyes, fearing not only to take the first step, but the journey across the uncertain ground.

Do I delicately place each step, aware of every movement I make hoping the fragile thin ice below my feet will support me?  Or do I run, seeing how far I can possibly reach before I feel or hear the ground give way?

It's time to take that first step, to set out upon the frozen sheet of icy glass and see if it will hold me.  The ground below me has been unsteady these past months, but each step I've taken has been coupled with an army of people and a barrage of potent antibiotics and medications hoping to stabilize and firm the ground beneath me.  It has been an emotional, frustrating, and exhausting endeavor to come this far, but I am amazed and so very thankful to have weathered the journey: to be able to breathe. 

Prepared to Swim

The last 161 days have consisted of two PICC lines, a sinus surgery and bronchoscopy, two visits inpatient to the hospital,  a multitude of oral medications and IV antibiotics, Influenza A, endless hours of treatments, a few drug reactions, and countless visits to my doctors.  But I have finally reached a point in which I have shown enough stability to stop IV antibiotics. It is time to see what my body will do on its own.  I'd be lying if I said I am not nervous or terrified.  It feels as if I am stepping out onto a sheet of thin ice: wondering how far I can get before the ice starts to abruptly crack beneath me, plunging me into the depths of the icy water.   How little trust I have in this body after it has betrayed me so vehemently these past months.  It is not "if" my body will betray me again, but "when."

But I must do it.  I must take a deep breath, step out onto the ice and have faith that it will hold me.  And if not, I surely can swim.

Without Fear

Wherever my steps are leading and however uncertain my path ahead may be, the journey is still most amazing. Let the brisk air pass between my lips and touch the depths of my lungs,  reminding me that I am alive . Let me not only walk without fear upon the uncertain ground, but skate across the glistening thin ice, always being a witness to the beautiful life I've been given.

Thank you to my wonderful CF team, the depth of my gratitude for each of you is immeasurable.  Thank you to my amazing friends and family who have steadfastly supported, loved, and shown me grace through this entire journey: it means more than you will ever know.  I only hope to share as much goodness as I have so graciously been shown and given.  Love to you all.

Are you walking on thin ice and prepared to swim?

In Good Company

Think of the number of people you encounter in your day, your week, or lifetime.  Look at the people who surround your life.  What brings you together?  Is it because you're family, went to school together, or because you share similar interests?  Another element that brings people together is often experience:  going through the same heartaches and joys.  

What if you couldn't be around those people?  What if you put their life in jeopardy by being near them, or that they were harmful to your health?  You have experienced similar pains and joys of life, but you can never share yourself wholeheartedly with that person. You cannot show that person empathy or compassion through a hug, a quick visit over coffee, or just the touch on the arm.  You can't even be in the same room, or building. 

This is CF.  

Because the bacteria fostered in the lungs of people with CF is so life threatening, we are a great danger to each other.  I may be growing a bacteria that someone else has not yet been subjected to, and vice versa [MRSA, pseudomonas aeruginosa, NTM]. New and more bacteria means more rampant infections, more scarring in the lungs, worsening lung function, and respiratory failure.  Per guidelines of the CF Foundation "Only one person with CF is allowed at foundation sponsored indoor events, offices, or meetings. If it is an outdoor public event people with CF should maintain at least 6 feet from each other." Great precautionary measures are taken in the CF clinic as well: gown and gloves for all who enter.  Even though the bacteria that wreaks havoc on my lungs won't affect you, you can still be a carrier that leads to cross-infection. 

Until the last year or so, I never realized how isolating CF was.  I think of my last hospitalization, about the floor of the hospital and how many of us had CF. We were locked in our rooms, strategically maneuvered from one location to the next, and shut off from the only people who could truly understand.  I could hear them coughing, or would catch a glimpse of them as they walked the halls, but never could sit on the edge of their bed and talk about life.  Sure, I had my incredible friends and family, but I just wanted someone to really "get it." What do you do when all you want is talk to someone to justify that you aren't utterly crazy?  That someone else feels and think the same things as me?  

Community

For a long time I didn't want to read the stories of people with CF, I didn't want to read blogs, I didn't want to get newsletters about "what's happening." Why? It terrified me.  It was much easier for me to be in denial about the reality appearing before me. Maybe it was a way to shut out the destructive fait I witnessed for 17 years with my brother? Maybe it was me caring too much what everyone would think if they knew?  What changed?  Honestly, I felt alone and terrified.  I stumbled across a blog that so greatly impacted me: it is what gave me the strength to show the world the real me.  The blog's author is Caliegh Haber from CA. She is 23 years old and awaiting the call for a double lung transplant.  Because she is such an incredible individual tomorrow's post will be solely dedicated to her.  

Look at the people around you.  That hug you just gave? Cherish it.  That breath you just took? It's a gift. My gratitude and love for you all overflows.  Thank you so much for being my "community" and making each breath so incredibly beautiful.  Love to you all.

Don't just call a friend today, go have ice cream together. 

Sharing is Caring

I love to share.  What's better than sharing a hug with someone, sharing dessert, or sharing dreams over coffee?

Think of all the things you share with the world during the course of your day.  Now, think of everyone who shares something or themselves with you: laughter, a story, a pencil.  You probably encounter many different people and environments throughout your day. Each one is filled to the brim with "sharing," but have you ever thought about the dangers of sharing?


Danger of Sharing
For those of you who know me, I keep the hand sanitizer companies in business.  Hand sanitizer bottles adorn every room in my house and have a home in every bag I own.  Because my immune system is compromised due to CF, I have to be very attentive to the "sharing" of germs and the potential looming infection that can be caused from coming into contact with them.  The common cold can wreak havoc on the respiratory system of someone with CF, and the flu can be deadly.  Viruses, bacteria, and mold are the main sources of respiratory infection and complications.  Infected respiratory droplets can travel up to 6 ft from just talking, sneezing, or coughing.  Germs can then live for hours on a given surface: a coffee cup, a door handle, piano keys, etc.


All Germs Are Not Created Equal
Germs that do not harm you may still pose a great threat to me.  The thick mucus in my lungs caused by CF is a perfect place for germs to find a home and thrive.  Germs that may not affect you at all may very well put a PICC line in my arm and cause months of IV antibiotics.  5% of lung function lost may not seem like a lot from just a "cold," but when you don't have much to begin with, 5% is enormous. Not to mention, it is incredibly hard to gain back.



Living Life
What do I do? Live in a bubble with my hand sanitizer, soap, and disinfecting wipes?  No! There's too much life to live for that!  I just live very attentively to the presence of harmful germs and the potential for infection.  I have become very aware of the type of room I am in, how many people I am with, if they're sick, the air circulation in the room, and the surfaces that I have touched.  Sometimes it almost makes me crazy, but I know it's to keep me alive.

I care about you all so dearly and love to share my life with each of you, I just don't want to share that cold.  Instead, let's make a date and share our dreams for the future: I would truly love nothing more.  Don't worry, I'll bring the hand sanitizer!  Love to you all.

What will you share with the world today?