Unbreakable

It had been five months since potent combinations of IV and oral antibiotics coursed through my veins - my body beginning to feel more like my own again and I was beginning to recognize the person I saw in the mirror. My mind was running at full speed again. Each day my mind shed a little of its doubt and mistrust of its own body – unassumingly instilling the belief within me that I was invincible.

But I am not invincible, and CF is ever-present. I’d be lying if I said I hadn’t been avoiding the signs of an exacerbation, desperate to give my body the chance to show me - show CF, that I was strong and unbreakable.

Reminded

How quickly I forgot the feeling of powerful poisons coursing through my body. For three weeks my body has been inundated with powerful IV infusions, oral antibiotics, and extra treatments. Its crippling presence evident in every aching joint and fatigued step. Every morning I can feel the sunken-ness of my own eyes deepening as I force myself to fall into my life’s usual expected momentum.  My body feels heavy and struggles to keep pace with my mind. I am reminded that my body is not my own. I am reminded that beneath the surface the fight against CF threatens to break me – trading a beating from antibiotics for the mere hope of getting one more day. One more beautiful breath.

This isn’t something new I’ve experienced, but this time it does seem different. As CF and its truth steadily chip away at my being, I can’t help but reflect over these past several years and the extended and frequent courses of powerful antibiotics. Is this how I’ve always felt? Has my body always felt this beaten during such courses? I think back to last year when for sixth months straight without break my body was inundated with different powerful drugs in hopes that something would combat the life-stealing force of CF. I remember those days being difficult but it is as if their honest paralyzing sting has been replaced or freed from my memory.

Mere Hope
It’s amazing how quickly the mind chooses to release and replace those excruciating past experiences with unwavering hope. Of course, those difficult moments live deep within us always, but we move on from them – choosing not to live in our brokenness but in the beautiful hope of the present and future. We live for those moments that the body proves its strength and mends the brokenness of that which comes in the wake of living with the realities CF, or whatever difficulty we each may face. I have no doubt that this trying course of antibiotics will soon be finished and these difficult moments too, will be overcome by the unbreakable hope that lives deep within.

Today, each beautiful breath is dedicated to all those that must live with and bare witness to the truth that is CF - parents, spouses, family, friends, medical teams, and the incredibly strong, tenacious, and hopeful individuals with CF. Love to you all.

Whatever difficulty you may be facing, remember there's an unbreakable hope that lives deep within you. 

A Spring Storm

As the warm rays of sun cast a gentle radiating warmth upon my cheeks I can’t help but think to myself, “we made it.”  I can feel the sting of tears at the corners of my eyes and I have to tip my head towards the sun to keep the tears from spilling down onto my cheeks. We had made it through winter. Spring had arrived early and I was wrapped within its promising warmth. Spring meant new life, a renewed hope, and an inner peace budding deep from within. Again, resounding within every part of my being were the words, “we made it.” And I believed and celebrated it whole-heartedly.

But I was reminded how quickly the seasons of CF can change. How quickly a spring snowstorm can suffocate spring’s hope – reminding the innocent new life of its unforgiving power. Today, winter’s fury is forbidding to relinquish its control to the peace of spring. Yesterday was a beautiful 60 degree spring day here in South Dakota. Today, we await an unforgiving wintery snowstorm.

Winter’s Song

Upon returning home Monday morning from a most beautiful extended trip to the beach, I had a full afternoon and night of teaching scheduled. Early that afternoon, I went into my studio to warm up and get myself organized for the voice lessons that lie ahead. But something felt different and off. I thought maybe it was because I literally hadn’t sung a note in ten days – the most time I’d taken away from singing in over a year. As I warmed up and sang through a few things, I noticed how quickly I’d run out of air and how difficult it was for me to finish phrases that just ten days ago were simple. Within me I could feel winter’s gentle, yet unforgiving snowfall beginning to drench my being.  As I taught and sang with my students the rest of the day and night, I noticed how starved of breath I felt and how my lungs burned to take in more air than they were allowed.

Tuesday morning between the normal adventures and opportunities that fill my life, I made a visit to my clinic to do a quick lung function test (PFT) - just wanting to check-in and see if there was any cause for concern. I was reminded of the unrelenting presence of winter amidst the beauty of spring. In just two weeks since my last PFT my lung function had dropped 10% to a FEV1 of 40%. So, Penny was called upon. Aggressively, both IV and oral antibiotics were started. The words “we made it” wept silently from the deepest parts of my soul. Disappointment threatened to replace spring’s eternal hope. Disappointment in myself and a disappointment and sadness I feared to see reflected in the faces of those I love. But within that disappointment is still something to be grateful for – I made it five months without IV antibiotics. That’s the longest I’ve gone consecutively in over 3 years. That is truly something to celebrate.

The Hope of Spring

This winter storm’s snow will melt into the earth, disappearing beneath the spring’s powerful sun and renewing warmth. This “storm of CF” will melt away. Today’s snow will give life to the most beautiful of springs. The seasons of CF will always change and its storms will rage but the hope of spring will dwell eternally within me, always waiting to be enlivened by spring’s warmth.

Amidst the pains of CF is the deepest gratitude and love for my CF Team. I am so thankful for each of them - their genuine care, guidance, strength, and reminding me that I’m never alone in this journey.  I'm grateful for my deep love of singing and the gift it gives me to combat CF and know when something is off. I'm grateful for each of you and the beauty of spring you each reflect into my life. Love to you all.

Think spring. 

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?