Holiday in the Sun

I come from a family of devoted vacationers. Like those before me, I thirst for a relaxing and equally exciting break from the hustle and bustle of modern living. For me a vacation is a period of time set aside to heal and rejuvenate my body, an opportunity to post better Instagram pictures (Kidding…or I am?), a warning to cease all calls with the insurance company and pharmacies (I know they’ll miss me), and a moment to just enjoy being alive with the people I love most.

My husband Peter and I just returned from a break with my family in sunny Florida. We had a great trip, and it’s bittersweet coming home and jumping back into the reality of our lives. All those phone calls I didn’t make were still waiting for me as we drove home, but I missed my cat so by the time we hit the Ohio state line I was eager for familiarity.

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Here’s my guide to vacationing:

p a c k i n g

Preparing for vacation with CF is an unique adventure to say the least. When packing, I usually gather all my medication and equipment first before packing any other items since they are the priority when space inevitably starts to run low. On this trip, I brought both my vests, two weeks of medication in a 7-Pack pill box, two nebulizer machines, six nebulizer cups, extra nebulizer tubing, a mini sharps container for needles and diabetes lancets, my glucometer and supplies, microwave sterilizer bags to clean my nebulizer cups, and the rest of my human things.

Am I too prepared? I understand it sounds a little extreme to bring two nebulizers, but I can’t explain the sheer panic that wells up in your body when your nebulizer dies while you’re out-of-state. Been there, done that. #neveragain

I wouldn’t consider myself a light packer. Yeah, I am pretty sure I am the complete opposite of a light packer. It comes with the territory of a chronic illness and someone who owns six bathing suits. It used to bother me that I could never spontaneously pick up and wanderlust my way through the world (I could but we would have to strap my vest to Peter’s back, and that’s just cruel and unusual punishment).

Now I realize, I still have the physical ability to leave as long as I bring my “baggage”, and that’s all that matters. You have to learn to adjust in life. For me, bringing all the necessities stings less when I remember my friends with CF on the transplant list not being able to venture beyond a 3-hour radius of the hospital. I am grateful for my freedom, as always.

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t r a v e l i n g

Since we decided to drive to Florida and would be stuck in the car for extended periods of time listening to the audio book, The Life We Bury, I had to do my treatments on the go. Using the cigarette lighter with the help of a power inverter to complete my nebulized drugs, I used my Afflovest which is battery powered for therapy. Each time before turning on the nebulizer, l silently prayed I wouldn’t blow up Peter’s car en route. I just know that wouldn’t be a good situation for our marriage. Also, the Afflovest looks like a throwback early 90s child life jacket, and I am positive the nearby cars thought I was sporting just that. My advice to myself: throw them the peace sign and crank up Justin Bieber. #belieber

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t r e a t m e n t s

One of my favorite times during vacation is sitting down each morning, coffee in hand, to do my treatments in the sun. Something about the change of scenery makes the entire process a little less daunting and mundane. I am always rushing during my normal routine, so the chance to leisurely complete my treatments surrounded by my family members seemed like a vacation in itself.

I warned my family prior to our trip that we would be completing one page each day from Start Where You Are: A Journal for Self-Exploration (Meera Lee Patel). Most members obliged during morning treatments, and it was so great to hear about everyone’s hopes for the future, what they valued most, and their perceptions of themselves. I enjoy learning about people in anyway I can, so I really love how this book allows you to ask the important questions.

t h r e a d s 

If we are being honest with ourselves, CF bellies are the absolute worst. I’ll never understand why scrawny arms and legs are partnered with obvious stomach distention in this disease. For all the coughing we do, we should be rewarded with rock hard abdominals. That’s not reality, though. Oh, well. To give myself a waist and the illusion of hips, I rely on wearing high-waisted bottoms while combing the beach or relaxing in the pool at the house. They are the absolute best when mixed with flash tattoos that even my grandma loved sporting on the beach. #buddahbelly

Just below my top on my rib sits my portacath as part of my tropical uniform. I know people probably stared and were left to puzzle what purpose the bionic bump serves. Truthfully, I am more indebted to that port for helping me than I will ever be to a stranger’s critical eye. It’s important for me to remember that. So, I wear my port with the utmost pride because beauty is not only skin deep.

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h e a l i n g

Even though I had taken time off from work, adventured on kayaks, and spent most my days collecting freckles in the sun, the reality is that a vacation from CF just doesn’t exist. About half way through our trip, I felt my body beginning to break down and slow down. Due to breathing in the naturally salty air and too much mermaiding (probably), Wednesday night I started coughing up blood which is very normal in CF, but less normal for me. My mom, who can detect my unique cough in a grocery store during flu season, came into my room and suggested it was time to drink tea and rest. After a night in bed reading A Life in Men (Gina Frangello) and stopping my inhaled sodium chloride treatments for a couple days (CFers inhale salt water to restore moisture in our lungs and help clear them), I felt better and restored.

Slowing down and yielding to the healing process of CF, especially on vacation, can seem impossible. I suffer from an extreme case of FOMO (fear of missing out) with my family which causes me to push myself, sometimes beyond my limits. I am still learning to find the right balance between experiencing, managing, and healing in my little world of chronic disease. A holiday in the sun always serves as a good reminder to slow down and enjoy your time doing whatever you are doing. Embrace the JOMO (joy of missing out).

Thanks for a great trip, Florida! I miss my family, the dolphins, and early bird karaoke already. The restoration before the busy spring and summer is exactly what we needed.

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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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The Funny Bits

Hello, everyone! I apologize for my month long hiatus from the blog recently. Honestly, my only excuse is that life happened and it kept me busy and away from writing. However, I’m back now and have a very exciting month of posts awaiting! Thanks for reading and supporting me as always. -J


I am convinced there are two types of people in the world: 1) those who wake up from anesthesia and cry for no reason and 2) those who wake up and act as complete fools.

I am the latter.

Things have been heavy around here, both in life and on the blog, so I wanted to share a bit of cystic fibrosis that is just plain silly. That bit being the videos your family takes of you while under the influence of both pain medications and anesthesia.

Here’s a mini compilation of some of my finest stupor-induced moments over the years.

Truthfully, sedated Janeil is one of the best versions of me. She wakes up giddy after a magical nap; she believes everyone is her friend and wishes them the happiest of holidays; and she remembers that her sister Jessica loves a hospital-cult favorite: shortbread cookies. Although she asks the doctor inappropriate questions and has no idea what personal privacy means after flashing the entire post-op staff, she is happy and perceptive of the goodness in the world.

I love watching these videos and being reminded that life doesn’t have to be so serious all the time, even in those moments that seem incredibly sober– like surgery.

Today, laugh.

Better yet, thank the people who make you laugh.

Make others laugh and help them sweep away the burden that can inexplicably fill our days.

Offer smiles and compliments.

Be kind to yourself and compassionate to your enemies.


Happy Monday, everyone!

Take a breather and enjoy the goodness around you even if it forces you to act like a fool– I will not judge you.

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CFF Community Blog Post

Yay! Hooray!

I have been given the wonderful opportunity to share my thoughts on the Cystic Fibrosis Foundation Community Blog! I chose to write about a topic so very dear to my heart– the prospect of becoming a parent one day and the challenges set before us when mixing family planning and CF.

Read my post here.

Thanks for joining me in this life and providing immense encouragement and love!

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Why am I always wearing this sweater?

The Reality of Home IVs

“With your port, I forget you’re on IVs- that’s not fair ☹”

I received that text message a couple months ago during a conversation with my older sister, Jessica, who has a way of casually speaking in a manner that people never forget. Jessica talks and in return, we listen, remember, and bring up her wordy influence weeks later. We always joke in our family that she holds so much power in her words without even meaning to do so, and now, she has done it again.

Jess’s reply has floated around in my mind for some time now, and it returned to cognition two weeks ago when I accessed my port and began home IV antibiotics for the second time in nine weeks. Her words weren’t fully absorbed and interpreted at the time of reception and simultaneous iPhone ping, but I can make assumptions based on the context of our conversation and our relationship. My assumptions are as follows: a) because my port is located on my ribcage, covered by clothing, and more easily hidden, people often forget when I am on IV therapy and b) it isn’t fair because IVs require a significant dedication of time, persistence, and infirmity in the hopes of healing. Maybe, she meant it wasn’t fair because IV-laded Janeil deserves more hugs, more leniency, more “How are you feeling?”, more prayers, more flowers from Peter (hint), more rest, more understanding, etc- all the arbitrary gifts of inpatient care?

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Although, I try to avoid using the word “fair” in conjunction with my CF because no good comes from comparison and wishing to be displaced from your reality, I do think it is “fair”. I agree, IVs are a serious commitment and there should be a level of forgiveness towards the person injecting poison into their body multiple times a day, but home IVs are a privilege and the benefits outweigh the anonymity, in my opinion. It is a privilege to stay home, to continue working, and to live without the restraints of hospital walls. Receiving the same treatment that causes many patients to be stuck at Hotel Rainbow’s Babies & Children’s Hospital, Floor 7, for weeks, sometimes months, from the comfort of my own surroundings, allows me to feel free. Acting as my own head nurse, I decide when to hook-up, what to eat, where I can and cannot go, and who to see. I govern the controllable that inpatient care can unfortunately strip away from its guests.

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On home IVs, I am privileged to wake up next to my husband after a night tucked in our bed, instead of the resident asking me if I’m still coughing at 5:30am (yes- the answer is always yes). I receive a visit from my nurse twice a week, sometimes at my house or my work, to draw labs and monitor my kidneys against the force of the powerful drugs. During work, I flush, hook-up, flush, hook-up, flush, hook-up, flush, flush, and un-hook while little fingers pull my tubing. I answer calls from the homecare pharmacy and schedule delivery dates for bubbles of antibiotics to be dropped at my doorstep. I visit my doctor every week and decide if we should push on or call it quits without knowing if we succeeded in pacifying the infections. Weeks on home IVs resemble a compliance-marathon resulting in mounds of medical trash, aggregating co-pays, and days packed with responsibility. Sometimes, I feel poisoned and weary, but mostly I feel fortunate and comforted that I am able to live my days as if there wasn’t an intravenous line hanging from my ribs concealed by my cozy sweater.

If I know anything about maintaining my positive mental status and living with cystic fibrosis, it’s that I desire to feel free- to enjoy my days and accept the challenges of caring for myself with grace and coordination. Feeling untethered seems like a fair trade-off to me, even if onlookers are unable to see the invisible hospital band marking me as a patient. Thankfully, at this point, treatment administered at home works more effectively than when I am admitted. Until the day comes when inpatient care is the best option, I will enjoy my freedom for myself and all those living on Floor 7.

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I have toured New York City, visited the beach, celebrated my own bachelorette party and friend’s birthdays and weddings. I have attended sorority events, worshipped at church, presented college assignments, gone on dates, and enjoyed every holiday imaginable all while on home IVs. I can meet my dear friend, Alexandria, for coffee to catch up and chat about the time we once lived in Little Italy as the antibiotics, Zyvox, Tobramycin, and Cefepime, infuse into my bloodstream. I have the ability to live my life while simultaneously fighting the disease that threatens to take it away. This type of reality makes me smile and seems victoriously fair, don’tcha think?

Three cheers to home IVs, to modern medicine, to breathing, and mostly, to living!

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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.

Welcome, 2016.

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Yesterday, I penned a post that was supposed to be published as an explanation of what New Year’s Eve means to me. This morning, I erased it.

For as long as I can remember, New Year’s Eve has been surrounded in a glimmer of sadness, and I spent a lot of time this week mentally deconstructing why that was. I thought the sadness revolved around how New Year’s marks the passage of time, another year spent and lost, something unkind to many people with cystic fibrosis. But when I woke up this morning, my body was sore from poorly dancing to Justin Bieber, and my lungs were crying for medication to ease the effects of laughing and conversation that occurred last night, and I knew in my heart, I had solved the mystery.

New Year’s Eve has a gloomy connotation in my mind because I live a life that is rooted in nostalgia. I am lucky to have lived 2015 in a way that makes me want to relive it all over again, not the numerical value of the year but the moments. I want to experience every instance of joy, the times that brought me to my knees in despair, the victory, the difficulty- I want to experience it exactly how it was once more. Of course, I would resolve the moments I unintentionally hurt someone, or the times I spoke of negativity and replace those with actions more deserving. But reliving 2015 would eternally engrave it into my mind, and I could soak up every last drop of a year more beautiful than I could have imagined it.

Alas, we know it is impossible to relive a year already faded away and this is the origin of my nostalgic sadness as the clock strikes midnight, the confetti flies, and I smooch the faces around me.

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In comparison, the joy of New Year’s Day is the reality that 365 days, sometimes 366, await to be filled with better memories, better health, and better minds. There is such goodness in possibility, and I am grateful to receive the tender gift of time. Time that I will fill with hands in mine and growth towards a perspective of contentment, grace, and relativity. Farewell, 2015 and welcome to my friend, 2016!

I hope 2016 is a year filled with kindness, progress, and understanding for all. Happy New Year’s Day!

This year’s resolutions include:
a. Carry more cash to be given away to people in need, charities in need, and opportunities that present themselves in the most ordinary of days.
b. Be mindful of 2016’s word: bloom. Allow the Lord to flourish friendships, opportunities, and health this year. Use this perspective to influence the simplest and hardest of days.

bloom: a flourishing, healthy condition; the time or period of greatest beauty, artistry, etc.

What Could Have Been

Today is the day Peter and I got engaged two years ago. Normally, we don’t celebrate this day, let alone remember with ease the actual date we got engaged. Peter and I both have never been very good at remembering dates like that or trivial dating anniversaries, probably because our brains are more wired to remember experiences rather than numbers and facts. Thank goodness we have a dear friend who reminds me of how long we have been married on the 11th of each month, so I can pretend like I am keeping track and save face in my relationship.

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I was recently scrolling through the photos on my computer to recall the actual date and stumbled upon the photo of the Christmas tree at the end of the dock that was taken the day we were engaged. I love this photo not only because of its obvious beauty and connection  to Christmas, but more so because of the significance behind it. This one photo, taken on an iPhone by Peter, holds more meaning to me than every picture captured in our short but complete relationship. In order to understand the importance of this photo, you need to know how Peter asked me to be his bride. So, I will tell the short version, the one I mastered two years ago when every friend and family member was eager to hear this very tale:

Peter and I were driving up to see his brother in Rochester, NY right before Christmas to visit and see some Christmas lights displayed in downtown Rochester. Why we were visiting his brother when he was coming home for Christmas in a couple days? I don’t know. Were there actual lights displayed downtown? According to the Internet, yes but I would never see them. Didn’t you notice during the drive when you passed the Rochester exit and were heading to a different town called Skaneateles? A big, fat no.

When we arrived in Skaneateles, we pulled up to the little, historic town nestled alongside one of the Finger Lakes and got out to see the Charles Dickens’ Christmas decorations that they display every year. I wasn’t in the best spirits and almost told Peter that we should just get back on the road to Rochester because I didn’t want to see the Christmas town. It was pouring down rain, very cold, and I was the worst kind of HANGRY (angry + hungry). He promised we could eat lunch and I agreed to continue wading through the puddles in hopes of food.

After we had lunch (turkey dinner, if you care) in the loveliest historic inn, my blood sugar and I were restored to our normal selves and we pranced down the street to see the Christmas town. First, Peter said he wanted to go look at the Christmas tree on the dock that was lit up before we headed down the street to the tiny shops. I agreed, but when we got to the lake the dock was closed off due to the rain. I am sure in Peter’s mind, this was a moment of pure panic. He had searched the Internet for the perfect spot to get down on one knee in this quiet little town, and now, it was closed off because the dock was too slippery. Really?!

We walked down the path to the edge of the lake and he asked me to hold the umbrella. I didn’t care at this point because I was too interested in looking at the huge ice chunks floating in the lake reminiscent of the arctic to notice why he was acting so weird. This is when he began his little speech, bent down on one soaking knee, and asked if I would be his wife as the rain rolled off his nose. It was beautiful. It was perfect. It was just as it should have been.

Why is the picture of the tree on the dock my favorite photo? The photo reminds me of a lesson I need to be mindful of every single day. That lesson is the notion that we can plan or dream of the way we want our lives, our time, or our energy to be spent, but in reality sometimes, our ideas will never come to fruition despite our efforts. If you asked me five years ago what I would be doing in December 2015, my answer would have been incredibly different than my reality today. I thought I would be working a full time job, finishing my masters, having children, adopting more cats (Please, Peter?), buying a house, and being a much healthier version of myself. I thought I would be living a life exceptionally different than the one I live today.

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The photo of the tree at the end of the dock, the one meant to be the backdrop of that special moment, shows me that even at the very start of our union, the Lord was preparing Peter and I for a journey as a married couple that would not reflect our plan. The details that we once dreamed for the future wouldn’t match the experiences and the timing of today. Obviously, we didn’t know this at that time, but we would grow to be ok with it. The uncertainty, dashed dreams, and vacant plans initiated by malady would be replaced with dissimilar ticks in time just as joyous and enjoyable.

We have been immensely taken care of since that proposal and each smile, celebration, trial, and tear has been just as scenic as the image we had for our lives on December 21, 2013. Do I still want the house, the garden, and the chubby babies that once filled my dreams? Of course, I do- deeply, in fact. However, I know these desires may come in a timetable that is not of my own, but of some grander and greater timekeeper. I have found a sense of cosmic peace in that.

The tree on the dock that was meant to be the scene of our proposal is now a just a fond memory of what could have been. Yet, I am so very pleased it is our what-could-have-been.

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Congratulations to my cousin Heidi and her fiancé, Doug, who did get engaged this weekend! We love you two!

Be Still and Christmas On

It’s the most wonderful time of the year!

Peter and I decided to put up the Christmas tree this weekend and officially welcome the holiday season into our cozy second floor duplex. If you want my opinion, the tree should have gone up the day after Halloween and we could have enjoyed the twinkle lights, childhood ornaments (including an orangutan and lots of baby dolls), and Sybil’s picturesque naps under the tree for that many more days. Christmas can never come too early in my eyes, but I have learned that certain folk around here have very strong feelings about appropriate holiday timeframes. So, we waited to put up the tree due to a busy schedule and peer pressure. To them I say, “To each their own”, and to me I say, “Can I get a tree for every room?” Ultimately, the answer is no.

Christmas is my definite favorite time of year. Ask any one who knows me and they will certainly agree that my internal clock cycles around Christmas. It is the start and end to my calendar year and what I find myself looking forward to beginning December 27th (the 26th is devoted to post-Christmas depression and only that). As you can imagine, I was itching to decorate the tree. I was eager for the forthcoming nights of beaming warmth that set the scene for my one-woman shows that include Claymation sing-a-longs while dressed in my Santa PJs, novelty socks, and mistletoe headband. That actually happens all the time and I suddenly feel very bad for Peter.

Oh, well.

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After the boxes were awakened from their slumber and brought up from the basement, we stacked the tree, added multiple strings of lights and sprinkled the ornaments about with minimal bickering (newlyweds, can I get a hallelujah?). Then, an unsolicited feeling that has burrowed its way into my body for the last year became overwhelmingly apparent: tiredness. Next, the dreaded mental reminder that I have become sick of hearing crooned: Sit down and take a break. “Take a break” has practically become my mantra this year and I dislike it very much. Honestly, I wanted to keep going, and so I threw a silent tantrum and walked my sorry Christmas-self to the couch and sat down to pout.

It is in these moments that I realize how little control I have in my own body. How I spend my days strategizing and how some days that perfect strategy doesn’t even come close to fruition. It is discouraging. I want to keep up with my husband and prove that I am fine, that CF plays such a small role physically that I am able to push on. In reality, this is far from the truth and my supply of oomph empties long before the project is finished usually.

Still taking a break…

After those negative feelings dissipated and I came to my senses, I heard this year’s counterargument faintly whispered, “Be still.”

To me, “Be still” is an unabridged prompt to the goodness that is my life. Be still means:

Janeil, rest now and enjoy this moment you have been given. Take it all in, smile at the people around you, and be grateful for this day. Be still in your discouragement and worry. Be still in your plan and expectations. Be still in your stubbornness and resistance. Be still in your pain and fatigue. Be still and rest. Be still and know that I am God.

The Christmas tree went up, I rested, and the Savior that is born this month fulfilled the everlasting promise of contentment in my life. I love Christmas for this very reason. Christmas beckons for us to be still. It is a time to cast away our worries and our darkness to focus on the glory and joyfulness of the past, present, and future. I have been abundantly cared for this year, despite my inability to be still. Christmas is a time to celebrate that noble gift and I plan to do just that (in my mistletoe headband).

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Happy holidays, everyone! I hope your homes are filled with peace, warmth, and joy this month and always.

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!