Our Favorite Announcement

Our hearts grew a little bit bigger this winter as Peter and I learned we are expecting a precious addition to our family. It’s true! WE ARE PREGNANT! And we are so excited to share our happy news with you all!

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I’m not sure Peter and I know how to truly express the immense joy, crazy love, or gratitude we have felt already at this point in our pregnancy. The depth of our emotions just can’t be translated to a screen because they are much too big and mighty. At the start of our attempt to expand our family, I think we both expected there to be some disappointment and heartache, a lot of patience, and more faith than we were ready to give, instead the Lord simply decided our time was now. His perfect timing and His certain decision to make us parents of this special baby will always humble me. I still can’t believe we have been so blessed.

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Truthfully, the past three months have sort of felt like a whirlwind; like we are stuck in a long anticipated dream with no desire to get out. My belly is growing by the day, I cruised through the first trimester as healthy as could be with little discomfort, and I am rejoicing in the weird and lovely terms of pregnancy. I can honestly say I have enjoyed every single day of this new adventure so far and cannot wait to meet our sweet little dream all wrapped up baby-burrito style. This time has been so very special to us. Telling our friends and family have been some of the happiest moments in our lives, and we can’t wait to further share our unique journey of pregnancy and parenthood with cystic fibrosis.

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Our special little babe is due to make their arrival on September 9th, 2017, but until then please join us in praying for an enjoyable, healthy, and stable pregnancy. Specifically, pray that my lungs stay clear and unchanging, I can maintain good blood sugar control, and that I am able to gain the necessary weight to keep our babe and I strong and growing. Please keep in mind our physicians who have the difficult task of managing a complex, high-risk pregnancy. We ask that you pray for wisdom, knowledge, and skill while they care for the both of us (Oh, goodness—“both us of” feels so weird to say!). Also, pray for the dad-to-be who will inevitably pick up the slack as I get more and more pregnant, and we experience a bit of transition from just two kids with a furbaby to eager parents with a human baby (+ furbaby). I know we are in for a crazy ride, but as always I appreciate your kindness, love, and support you have given our family.

Overall, we are uncontainably excited, deeply humbled; and most importantly, growing a human. We just couldn’t be happier!

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Stay tuned for more love and more baby,

J + P

(A big thank you to my cousin-in-law, Dave Blakeslee, at David Blakeslee Photography for capturing this special moment for us to have and to share. We are thankful for your talent!)

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Flowerlungs

It’s one of those heavy days, and I find myself lost in thought as the IV pump alarm fills the stagnant silence in the room. The only other audible sound is coming from within my lungs serving as a constant reminder of the setting of my reality. The air is unmoving and the shadows crawling from the corners are drawing closer to me under the fluorescent light as the evening passes. The shadows are eager to steal my warmth—they try endlessly, using the slow passage of time in the hospital room to their advantage.

I hear a gentle knock reverberating from the far side of the thick door as my mom pops her head in just slightly to say hi. The door glides open and in one hand she brings a lovely bouquet of life-giving flowers; in the other hand, a bag containing food from outside the hospital walls that I desperately desire. She quickly lays down her belongings and walks towards me, still wearing her own set of scrubs invisibly soiled from her own set of patients, to kiss me on the forehead as she asks, “How is my girl?”

As quickly as it appeared, the darkness evaporates into the light and the thick silence is traded for merry chatter. The flowers stand on the counter and gleefully whisper affirmations of joy, support, and splendor into my soul and all feels right again.


Spring is upon us and I am feverishly anticipating the growth of new life and my favorite by product of the elements: flowers.

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Flowers have always meant something deeper to me than just futile flora sprinkled over the landscape of our earth. Whether my connection to flowers is an inherited trait passed down from my mom, the same way cystic fibrosis passed from her genetic makeup to mine, or just a hobby that fulfills my soul’s desire of contentment, I know that they hold significance far beyond aesthetic appeal. They continually remind me of the incandescent beauty gifted from our Lord, the oxygen dancing within the breeze, and the immense control it takes to be present and grounded despite the tireless winds. They call my hand to pick, my nose to smell, and my eyes to savor retelling of the enduring capability of a broken body.

Moreover, I have always been under the assumption that flowers are the most powerful creation in nature. They have the capacity to spark restoration within our darkest moments, while simultaneously signifying every triumph or celebration in our lives. How is it they have the weight of such influence to do both? How do they illustrate both realms of sorrow and happiness? I am unsure. But, their passive strength is something I admire and something I aim to embody within my own existence.

Within my lungs due to cystic fibrosis, thick paths of scar tissue marble through chronic infection and reactive inflammation making it more difficult to breathe as time passes. There is a strong force feeding from the resources within my body, and it takes what it wants and leaves it’s mark in the form of perpetual damage. The reality is that my organs are struggling at the hands of a very powerful disease. I recognize my reality. I know this is what’s occurring within my shell, but it’s not how I choose to see my life.

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What if I chose to believe I am harboring prosperity and beauty by growing flowers within my organs- the very creation I admire so much? As time passes, I cultivate more blooms and they fill the spaces within my lungs and unexpectedly take my breath away- a trade off for their immense beauty. I pluck the thistles and allow further growth, and they fill me with unmatched hopefulness and appreciation. They serve as a mark of both my physical pain and spiritual triumph causing each inhalation paired with exhalation to be a reminder of a blessing. CF is my blessing in many ways and will remain as such.

I’d rather my breath be stolen by prolific blooms, an overgrowth of loveliness and grace, than relish in the reality of my disease. I have learned that true perspective has the power to change the course of your life, the power to smother anxiety and fear, and the power to transform destruction into celebration. I know my fight has really only just begun- I’ll be physically and mentally flooded far beyond what I can imagine in the years to come.

But, I am not afraid because I grow flowers causing my life to be more lovely and fulfilling than ever expected.

In those moments when I fail to produce them myself- when I lack the necessary elements vital to blossom- I know alternatively the people who love me with aid in supplying them. There will be a gentle knock reverberating on the far side of my door and I’ll overhear the words repeatedly said by my mama:

I will always bring you flowers because flowers heal all.

Indeed, they do and all is right again.

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Health Update: Physical Therapy, Orkambi & IVs

This week was filled with appointments, decisions, and rearranging of medications.

On Monday, I graduated from physical therapy after eight weeks! Wahoo! How pumped am I to stop paying to workout early in the morning on my day off? The answer: So pumped. Really, PT was an excellent experience, and I am excited that it helped minimize the pain in my back from coughing and daily living. In PT, the therapists and I started with aligning and stretching my shoulder blades to achieve better posture by opening up the chest. I was taught different exercises to strengthen the shoulder, arm, and chest muscles that hold a lot of tension from coughing with the help of weights, bands, and foam rolls. Lastly, we worked on cough technique to better engage my abdominal muscles and keep my back straight, instead of contracting and rounding the shoulders on every cough. (CFers- bend forward at the hip instead of the middle back when coughing. You will feel like a new person!)

PT was also a humbling experience to say the least. In the midst of the coughing, sweating, and soreness, I recognized how simple movements and mindfulness of body placement could ultimately heal an aliment I never thought mendable. I am so thankful for the therapists’ expertise and advice. It felt wonderful to treat an issue with positive results and therefore, gain a sense of control in a body that sometimes feels wildly out of my control. Plus, there is nothing more humbling than a high school gentleman watching you do “pelvic tilts” on an exercise ball. Yes, it looked just as provocative and cringeworthy as it sounds, but I could only laugh at the ridiculousness. All in all, I highly recommend physical therapy to all my cysters and fibros out there and to anyone who is suffering from daily pain with little relief.

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On Wednesday, I headed to CF and CFRD (cystic fibrosis related diabetes) clinic with the wonderful company of my dear best friend and cousin, Cara. I told myself going in that I had no expectations as to what my PFT (pulmonary function test) or the plan of action would be. I have learned over the years to go into appointments with little expectation, that way I am able to focus on the positives of a bad appointment or celebrate the victories of a good appointment without feeling weighed down by disappointment. I knew I had been fighting a low-grade fever, increased cough, and fatigue (an on going problem for the past 5 months) but was unsure of what my doctor would say. My PFT was only down a bit- 65% and still one of the highest numbers I have seen in the last 12+ months. Those high numbers are very encouraging, and I still don’t believe this is reality when the respiratory therapist reads off the score as I catch my breath posttest.

The conversation between my doctor and I became increasingly complicated as we discussed my symptoms, life on Orkambi (a drug which targets the cause of CF), and the options available. In early December, I took myself off Orkambi for about a week (whoops) and realized how much better I felt without the drug. I had an inkling Orkambi was to blame for my level of fatigue, aches, tightness, and shortness of breath, even though the tests showed clinical improvements within my lungs. When Cara asked what I felt like, I told her, “Every morning, I wake up feeling like I lived another day in my sleep. There is no break in the fatigue.” Eventually, I was faced with a difficult decision: a) Stop Orkambi and risk losing lung function but feel better in the near future, or b) Continue Orkambi and keep my lung function but feel poorly as I do as a result of the side effects. What would you do if faced with this decision?

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Ultimately, I felt stressed making this choice. I didn’t want to disappoint Peter or my family who felt an immense sense of hope as a result of Orkambi. I didn’t want to be the patient that discontinues a drug thousands of CF patients wish they had an opportunity to be on. More importantly, I didn’t want to risk the possibility of never gaining that lung function back. However, quality of life has always been my top priority, and we agreed that if I am not able to enjoy the benefits of Orkambi after five months because my days are overwhelming burdened by fatigue and aches, what’s the point? So, for the time being, Orkambi will be removed from my list of treatments and I’ll go without.

I do want to say how very thankful I am for the opportunity to take Orkambi for the past five months. It really is a fascinating (and ridiculously expensive) drug that allowed me to cough less, use less insulin, and obtain better lung function. I can’t believe we are at this point in the advancement of CF research, and it is a time filled with so much hope. My doctor ensured me that numerous innovative drugs are coming down the research pipeline, and one of those drugs may be the perfect fit for me in the future. For now, I can enjoy the days while I wait and know that I have tried all the options available to me with a peaceful heart. I am thankful for such a great and supportive care team who continually reminds me that how I feel is more important than a number on a screen.

Now, the goal is to “reset” my body to determine what my daily baseline looks like without the effects of the drug and after the help of IV antibiotics. I definitely didn’t expect to be on IVs again this soon since I last had them in October/November. With the fever, cough, and fatigue, they are warranted. Truthfully, I am relieved, though. I can’t wait to see who I am without the weight of Orkambi and with the help of IVs to nudge me towards a version of myself I almost forgot existed. Goodbye, fatigue and grumpiness!

So, here we go again- no Orkambi, on IVs, and working to feel the very best I can.
I am snuggled in my bed, and 2016 is certainly starting out with a bang.

I Am an ENFP

I am an ENFP. According to Myers-Briggs personality tests, I am an extrovert, curious, emotional, a people-person, observant, and a good communicator. I feel others’ experiences and want to know every detail of how they came to be. I am burdened by rigid schedules and lists and tend to live in a state of organized chaos. I am a procrastinator. I am a true free spirit, or at least that is what I am expected to be as an ENFP.

Within the last few months, I have spent a lot of time thinking about how cystic fibrosis has chipped away at certain aspects of my personality causing me to morph into someone I am innately not. Altering insignificant detail little by little, I have seen the transformation slowly creep upon me. I look in the mirror and think of the person I used to be, and I see undeniable differences between the two and then wonder what trait will be whittled at next.

The most obvious difference is the amount of time I spend alone now- something unnatural for an ENFP. I once was a person surrounded by people, ideas, and constant motion. Engulfed in various projects, clubs, and positions, my days were always spent “doing” and “experiencing”. Now, my days are focused on smaller but more time-consuming endeavors such as surviving the workday, taking care of myself, and prioritizing what needs to get done before the fatigue sets in. Social invitations are often turned down in order to rest, and yet, the world and its people continue to revolve without me. Comparatively, I am kept company by my other friends- IVs, breathing treatments, pills, and fatigue- that have long overstayed their welcome, and it is a continuous disagreement between my mind whining to go out and my body pleading to slow down.

For any ENFP, the fear of missing out and isolation is a difficult pill to swallow (CF puns, anyone?). However, self-awareness has become my redemption. I know I get lonely in the evenings doing my treatments, and so, the cat habitually joins me, Peter will lie in bed next to me and read because talking over the loud machines is difficult, I text or message my close friends, and I watch TV or write. I do things that I enjoy and that connect me in some distant way to my friends and family who are out there, and in my mind, dancing at some glamorous party that is catered by Chick Fil A. When I get the chance to enjoy social time with actual 3D people, I soak up each moment. I am present and engaged, and my heart is full for a significant amount of time after.

Apart from the amount of time I spend alone, the way my time is organized is different. I am tied to a schedule now, and my mind is a chorus of continuous mental alarms. You try taking 20 different medications a day, hours of vest therapy, and managing finicky blood sugar; you would need a strict schedule too. Naturally, I don’t thrive on a rigid schedule and it has been a humbling learning process for me over the last decade. My mom can attest to this and has numerous stories of middle school and high school Janeil not doing what she was told to do and when. My excuse back then: I wanted to be free. Even now, there are days when I walk over to the massive kitchen drawer (you know, the one meant for silverware and kitchen tools) filled with my daily medications, open it up, and just stare at it. I can feel my body wanting to shut the drawer, erase the responsibility from my mind, and walk away to pursue something else spontaneously, instead of doing another round of therapy or choking down another handful of pills. I also know that if I did this and ignored my schedule, I wouldn’t live. Weeks filled with schedules, lists, and mental alarms are a matter of life and death for me. So, I comply, sometimes begrudgingly and with an ungrateful heart.

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This all sounds so discouraging and if I am being 100% honest (which I promised to be), sometimes it is. It isn’t easy to watch yourself morph into an unfamiliar version and accept it without loss. I know that because of these changes, I have been forced to grow as a person and I have been taught flexibility and adaptation. I have been given the opportunity to look inside and become self-aware to the point of knowing my God-given typology and the person I am forced to be in order to survive, while recognizing that those two people often do not match up. It is a continuous learning curve- a process, a failure, and a lesson learned- and I am thankful for grace and tomorrows so that I can get it right some days. Under the layers of CF, tiredness, and overwhelming responsibility, I know who I am: an ENFP who loves people, who enjoys moments, and who has become free in a different sense of the word. My hope is that I will be given the strength to continue to be her in spirit long after CF has taken over my shell.

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If you don’t know your own Myers-Briggs personality, take this test and learn more about why you are the wonderful way you are. Feel free to post your personality type below!

Processing Change

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I unpack my saline, heparin, needle, cap and dressing change kit and place it all on the table. My iPhone alarm tells me it’s port flush day; something that rolls around every four weeks or so. My port (or portacath) is located on my left ribcage and allows access to my bloodstream for blood draws or IV antibiotics whenever I need them. An internal septum was placed surgically and connected to a long tube that’s tunneled under the skin to a larger vessel in my heart. When my arm brushes against the obvious bump or I go to flush it and I see the inch and a half scar, I am reminded how much I love my port and how thankful I am for it. In all honesty though, it took me years to get here and a challenging internal process to be “ready” for it.

Flashback to a few years ago: entering the hospital felt routine at this point, my symptoms would worsen, my body would feel heavy and weak and I knew I needed IV antibiotics to give me a boost. I always felt at peace going into the hospital. Granted, I hate putting my life on hold, I hate relinquishing some of my independence, and I HATE hospital food, but I knew I could smile, negotiate a weekend stay and be shipped back to do home IVs. Subsequently, I would resume my role as nurse and my life would return back to normal to uninformed onlookers. Home IVs meant PICC lines, a semi-permanent IV tunneled through your arm to the same vessel in your heart but removed once treatment was over, and after 15+ PICCs my veins were scarred and occluded. The placements became slightly traumatic (that’s what you get when you refuse sedatives) and I developed some sort of anxiety equal to the amount of scar tissue hiding in my vessels. I will point out, I am generally not an anxious person (praise the Lord) and the only obstacle standing in the way of my happiness and peace during frequent hospital stays were PICC lines.

I knew it was time. It was time to take the next step in my care and that meant a portacath. The idea of having a port always weakened my soul and I was disappointed in myself. A port meant my body would be altered on the outside and I would physically look irregular. It meant I was really sick and my disease was in fact progressing. It meant I lost control and the force I battled to hold off everyday was gaining ground. It meant CF was winning and I was ultimately losing. Ports were for very sick cancer patients, certainly not for me.

Weeks turned into months, my doctors continually brought forth the option of a port and offers turned into dismissals. Slowly, greater clarity erupted and I saw through my vanity, stubbornness and shortsightedness. The Lord reminded me of content and faith and that with every season comes passing, but also new life. I was starting a new life and I owed it to my groom, myself and to the opportunities ahead of us to do everything in my power to best take care of me. I attended my bachelorette party with my last PICC and it was removed seven days before my wedding.

A year later, my husband comes to kiss me on the cheek and tells me I look beautiful as I go to care for the implanted device that has given me peace and a renewed sense of independence. It is a concealed weapon against my greedy disease and I am thankful for the continuous protection. The bump under my skin proves that sometimes the change we desperately try to hold off can alter our lives in the most positive and forward thinking way. I know that I will need a reminder of this lesson time and time again in this life as CF brings forth unwanted changed repeatedly, but I hope I will always look down to my ribcage and be comforted and reassured as I am now.

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