Pockets

What do you find in your pockets at the end of the day?  Change? Chapstick? Keys?  Gum?

My pockets are usually filled with cough drops, tissues, and Tylenol.  They're the staples to my daily life: I don't leave home without them.  Let's just say, however, that they aren't such a great combo when going through the wash machine and dryer.  

Frequently, I am asked if I have a cold. I smile to myself and just say yes, as we talk about "that cold that is going around." But really, it's just me. I cough a lot and I have a chronic stuffy nose: all caused by CF.  Most often, especially when I have to be in public, my cheeks are packed like a chipmunk with cough drops.  Every pocket in my life is stashed with either a fresh cough drop or its old wrapper.  The cough drops [without menthol] also help with having a dry mouth due to the side effects of some of the medications I am taking.  

A Hot Mess

Sinusitis is a common complication associated with CF.  What are some of the symptoms associated with Sinusitis? Headaches, congestion, needing to frequently clear your throat, and a gravelly voice. Check. Check. Check. And check.  This meaning, I take decongestants like they're candy and irrigate my sinuses like a swimming pool.  Because the sinuses are part of the respiratory system, they are plagued by chronic infection and inflammation.  Infection in the sinuses can contribute to the level of infection and inflammation in the lungs: making the entire respiratory system a hot mess.

My CF team aggressively treats both the lungs and sinuses, trying to prevent one from fueling the flames of the other's infection.  

Chipmunk Cheeks 

Need a tissue? A cough drop? I am your girl. No, I don't have a cold: it's just the way I am.  And you know what? That's ok.  I am so thankful for the lotion tissues and lemon honey cough drops that help get me through the day.  I am even more grateful for those days when my head isn't pounding and the world seems so much clearer.  I am grateful for each breath that fills my nose and gives air to my lungs.  Honestly, I am just grateful for every breath.  Love to you all.

Reach into your pockets.  
What did you find?

Enjoy the View

Le Tour Eiffel

71O. That's how many steps I climbed not once, but twice, to view the spectacular city of Paris from the second deck of the Eiffel Tower.  Oh, how I took each one of those moments and steps for granted.  I wish I would have held on to those moments for a bit longer, and would have savored every step a bit more.

Are you one of those people who takes the stairs instead of waiting for an elevator?  I used to look at the stairs and think of them as a challenge, but now the sight of them fills me with unease.  The internal monologue that used to play in my head would go something like this:
"Show those lungs that you can conquer those stairs!"
"CF isn't going to tell you that you can't climb those stairs!"
"Make those lungs work: feel each breath!"

I would do the stairs just to prove to myself I could do them.   I still do, but not as quickly or as easily. 

View from Sacre Coeur in Paris

Today, I look at the stairs, how many there are, and how much my lungs are going to hate me while trying to scale them.  Even as few as 15 steps makes my lungs stressed and screaming for oxygen.  As CF progresses, it becomes more and more difficult for people affected by the disease to do physical activity due to decreased O2 levels and lung deterioration.

O2
Oxygen, we all need it to live.  Oxygenation happens when Oxygen molecules enter the tissues of the body: keeping them healthy, vibrant, and alive. Normal blood oxygen levels range from 95-1OO.  When I am resting my O2 level is usually a stable 94-96%, but when I go for a good walk or climb stairs it begins to drop: making me light headed and my lungs desperately searching for air.

View from the Eiffel Tower 

Will I still take the stairs? Yes. Well, maybe not 71O of them, but if the view is spectacular I will scale those stairs one step at a time.  I am so grateful for all the stairs I have been able to climb and the spectacular views I have beheld.  Here's to the beautiful new sights I have yet to see and the stairs I have yet to climb!  Love to you all.


Today, take the stairs for me, and enjoy the view.

How Can I Keep From Singing

Palais Garnier Opera House, 2O11

"My life flows on in endless song above Earth's lamentations

I hear the real, though far off song, that hails a new creation.

Through all the tumult and the strife I hear the music ringing.

It finds and echo in my soul, How can I keep from singing?"

How can I possibly keep from singing?  Singing is who I am.  With every breath I take to sing, I know I am alive.  Every note I sing is a proclamation to my lungs and to CF that they have not won, and they are not going to win without a fight. 

Singing & CF
I am frequently asked if CF makes singing difficult.  My response?  I don't know anything different. Breathing is the foundation for singing, and since my lung function is about half the amount of what it should be for a person my age, it can make singing challenging some days.  I do wonder what it would be like to take a deep breath: I mean really deep.  Some days I wake up and the last thing my lungs want to do are breathe, let alone sing, but I cannot let them win.  The medications I take can also make singing a bit challenging: affecting my voice itself, my hearing, and my coordination.  It terrifies me that someday I may have no other choice than to take a medication that could save my life but completely end my singing. That sounds so dumb, doesn't it, but singing is what I do every day of my life.



I honestly think singing has helped slow the damage to my lungs and has helped keep them as "healthy" as they are.  I can tell how my lungs are doing based upon the number of measures I can sing in a song and how clear my voice is.  Because of this I can clue into an infection or something "brewing" in my lungs relatively quickly.  Let's just say I am very "in-tune" [ba du chick] with what is happening when I breathe.  Singing is also good for the mind and soul.

Singing in Germany, 2OO9

Making Music
I am so very privileged to share my passion for music with so many.  I am so grateful for the students I teach, the choirs I sing in, and the professors and mentors who guide me to be better and who believe in me.  This past Fall I started a graduate program for my Masters in Voice Performance.  I am not going to lie, it's been the most difficult 8 months of my life thus far, but I love every chaotic minute.  The harder CF pushes, the harder I push back.  My life is filled with so much music, and I am so grateful for each moment and opportunity.


Thank you to everyone who has helped me to make music: my professors past and present, mentors, conductors, colleagues, and students.  Every note is rooted in a breath of beautiful gratitude. Love to you all.


What song is your life singing?


Need some beautiful music to start your day? Check out the South Dakota Chorale, an amazing professional choir I am so lucky to sing with:
South Dakota Chorale "I am the Rose of Sharon"
or www.southdakotachorale.com

Definition of Family

Kalvin & Cooper

Meet Cooper and Kalvin, my boys.  There is no greater joy I get than coming home to them.  Sure, they drive me crazy at times, but they also can be the sweetest part to my day. 

My "family" doesn't look like the usual definition, but it is the one I know and love.  Take a moment and think about your family.   What is your definition of family? A dog? 3 kids? 5 cats? Your spouse or life partner?

The Question

I am at the prime age when people ask: "Do you have children?" or "When are you and Mark having a baby?"  I honestly don't mind being asked these questions, but in my mind the answers are so much more complex than the simple response they are expecting.  The answers are deeply buried in guilt, remorse, and heartache. 

"Family" Photo

The thick mucus caused by Cystic Fibrosis also affects the reproductive system: making it difficult for women with CF to become pregnant, and nearly impossible for men with CF to father a child.  Even if a woman with CF does become pregnant, the pregnancy itself, and the high risks involved with CF for both mom and baby are always of great concern. Infection, lung function, and nutrition for mom and baby are serious matters.  The exhaustion that also comes along with having a baby and caring for its constant needs can put the health of the person with CF at great risk as well.  

Heartache

Have I thought about having a baby? Giving Mark a family? Leaving a part of me behind for when I am gone? Yes, lots.  Especially in the last year and half when the realities of CF have hit me so hard and made me face the future.  I am stubborn and driven as they come when I am challenged, but I know deep inside that I can't have a baby. I know physically these lungs will not let me and the extreme toll it would take on my body.  Also, I think about the future and the reality of leaving Mark as a single parent and a child without a mother.  My heart breaks when I am checking myself in at the hospital and I see a couple checking in to have their baby.  I often think, "they're going to leave the hospital as a new family; how excited they must be for the future" My heart also breaks when I am laying in a hospital bed having a PICC line inserted and the "lullaby" song plays over the PA system to announce a baby has been born. I lay there and think about how different life could be, I think of Mark, I think of never experiencing that joy with him, and how he would be a great dad.

I am surrounded by the most beautiful of friends and their growing families.  I am so lucky to be a part of their lives and to experience having a baby and raising children through them: from the excitement of being pregnant, to their first soccer game.  Being a part of their lives means more than they'll ever know.  Thank you for making Mark and I a part of each of your families.

My "family" may not look like the usual definition, but that's what makes it so beautiful: each of you.  I will live gratefully for the "family" I have been given.   Love to you all. 

What is your definition of "family?"

Defining Moments

We all have them.  Those moments in our life that change us forever.  They have shaped us into who we are at this very given moment.  They make us see the world differently.

Hemoptysis

Hemoptysis is the coughing up of blood or blood stained mucus from the respiratory tract: lungs, bronchi, trachea. Infection is thought to be the main cause of hemoptysis.  Bronchial arteries become swollen and inflamed in response to an infection, causing them to burst and bleed.  Hempotysis can also be caused from damage to tissue and blood vessels in the lungs due to infection and scarring caused by CF.

Changed
A moment that changed my entire world?  November 1, 2O13.  It baffles me that I can remember the date so well when most days I can't remember what I ate for breakfast.  Anyhow, that day will forever be imprinted in my mind and have changed the way I see the world.

I was at a CF clinic visit for a regular check up.  I had been doing fine, living my life as I always had: not thinking about or giving attention to my CF, whatsoever.  I was done with my appointment and waiting in my room for my nurse to return.  I remember having a tickle in my throat and trying to clear it away by coughing.  It didn't go away.  I remember thinking, "hmmm, that's odd" and tried to clear my throat again.  This time I walked to the mirror in the room, opened my mouth to see what I had coughed up, and out came a stream of blood from my mouth.  I continued to cough and the blood just kept coming.  Defining moment? Yes, I have never been more terrified in my life.

Since then, I have continued to have episodes of hemoptysis, ranging from times when the blood seems to just pour from my lips, to just blood streaked mucus.  Coughing up blood and blood sitting in the lungs causes the airways to become inflamed, or as I like to say, "angry," and is a breeding ground for infection.  It seems my lungs have been angry a lot in the last year and a half. Can't we all just get along?




The Good
What do I also remember about that day besides being terrified?  The gentle touch, genuine care, and kindness of my nurse who asked me, "are you scared?" as I tried my best to hold back tears.  My doctors who so urgently came to care for me, evaluate me, and make sure things were stable.  And the other members of my CF team who came to make sure I was ok.  In my mind, I can still see each one of their faces that day. Why this hemoptysis suddenly happened then and there none of us will ever know, but I am so thankful that it did happen there of any place.

That day changed my life forever. [How cliché]. It made me realize I have no control over the future, what a gift today is, and how every relationship in my life is so dear.  I will be grateful for each breath I am given and make the very best of it all.

Thank you to my CF Team.  I am so grateful for each and every one of you.  You each mean the world to me and feel like my family.  Thank you.  Love to you all.


What are your defining moments?

This Is For You

It's Spring, my favorite time of the year.  Vibrant green shoots begin to emerge from the earth as the last of the snow melts away.  The snows of the Winter have given way for new life to spring forth.

Soon, Tulips and Daffodils will embellish the landscape with their beauty.

Many of you have asked what my sudden motivation was for starting the blog, and why now?  I started this blog not for me, but for all the amazing people in my life.


For 27 years I have pretended there's nothing wrong: never wanting to worry anyone or draw attention to myself.  Friends and family would always ask me how I was feeling or how my doctor's appointments went.  I would always reply with the words, "fine" and a big smile, in hopes that it would put them at ease and make them move on from the subject.  I thought it was easier for us both to pretend CF didn't exist.  I never wanted to be someone's pity party or again, draw focus to myself.  I thought I was protecting everyone from those difficult moments when words are lost.  There is no worse feeling than telling your friends and family negative news or information. You see their heart sink as well as yours with every percent of decline in lung function, infection, and IV treatment.   Most of all though, I thought I was protecting myself from the possibility of people seeing me as different, weak, or sick.  I have never wanted CF to define who I am.  I have wanted everyone to see me first and foremost for who I was, not what I had.


What has changed?
I still do not want to be someone's pity party, and I still have a very hard time dealing with the conversation being solely on me, especially when it comes to CF.  I know completely shutting people out of my life isn't the right thing anymore. I am not protecting anyone: I am just being selfish.  As I have had to face some harsh realities with CF in the last year and a half, the amount of love and genuine support is overwhelming.  People truly care: they want to be a part of my life, CF and all.  I have never been more humbled in my life.

The landscape of my life is filled with beautiful flowers: some just budding, some just sprouting from the earth, and others in full bloom.  I am so thankful for each beautiful one.


Immeasurable Gratitude.
What motivated me to do this blog? Some very dear people in my life during these past months came to me wanting to raise money and awareness for CF.  I was shocked and overcome with emotion. I thought I had hidden that part of my life so well, and to have people say through actions, "we know and it's ok, Ashley. We love ALL of you, and we want to fight for your tomorrow."

I wondered how I could ever repay them.  How could I ever show them how much their kindness and support means to me?

By putting that which I have hidden for so long out for the world to see.  To be me.  Love to you all.



What is blooming in the landscape of your life?

"Let us be grateful to the people who make us happy, they are the charming gardeners who make our souls blossom." - Marcel Proust

Leave Your Mark

Pick a color.  Now, imagine everything your fingertips touch is left with a brightly colored fingerprint.  Think of all the things you touch during the day: doorknobs, your computer keys or tablet screen, your phone, books, a coffee mug, the hand of a friend, the steering wheel of your car, and so on.

You get the idea.  Imagine everything you've touched today covered with your colored fingerprint for the world to see.

What's my color? 

A frosty white, and I actually do leave a visible fingerprint on everything I touch. A person with CF has 3-5 times more salt in their sweat, so as a result we may have a type of salty frosting on our skin.  Parents often comment how their children taste salty when they kiss them.  I can feel and see the salt on the palms of my hands and fingertips, on the tip of my nose, my legs, and eyebrows.  I am like my own personal salt shaker.  Salt, anyone? Just kidding, that's disgusting. 

Because people with CF lose a large amount of salt through their sweat, they must strive to stay well hydrated and replenish low salt levels. 

What my glass usually looks like.

Why are you so salty?

Cystic Fibrosis disrupts the chloride balance within the epithelial cells that are found in the lining of the lungs, digestive tract, and sweat glands.  This means there is an imbalance of salt and water in my epithelial cells.

Salty White Fingerprints

What's a good thing about leaving salty white fingerprints on everything? I never lose my glass at a party.  Any type of glass, smooth, or reflective surface I touch is left with a frosty white fingerprint.  I often wonder what it would be like to touch something and not leave a mark.  I can clean my ipad or phone screen in the morning and by night it is covered with smudged, salty fingerprints. 

My Ipad - can you see the frosty white fingerprints?

Thank you to everyone who has left their unique and beautiful fingerprint on me! Love to you all.

Where are you leaving your mark?