#31daysofCF

Happy, happy June! The month of May, or CF awareness month, is long gone by now but I saw the #31daysofcf challenge on Instagram in early May and liked the thought of it. Each day you are to cover a different topic in the realm of CF and I thought it very informational. (Also, you’re very welcome I saved you from enduring 31 pictures of CF on my Instagram account last month- that’s just too much. I need more cat pictures, I think.)

Below are pictures from the CFF Great Strides Walk at the Cleveland Zoo. The biggest thank you to those who purchased a t-shirt, joined us in walking on that very cold day, or donated to our team. You made it a very happy and humbling month!

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1. Diagnosis: I was diagnosed at age 4, which is slightly unusual (2/3 of CFers are diagnosed by age 1). I had no respiratory symptoms but suffered terrible stomachaches, stomach distention, and poor weight gain. The doctors were really clueless and frankly, didn’t believe anything was wrong. A very persistent doctor drove my mom to a nearby hospital and a sweat test showed I had CF on August 4, 1995.

2. First year- worst year: I don’t remember much of the first year because I was a 5 year old and as happy as a clam. I do remember my sweat test and my favorite nurse (which I still see to this day) explaining my pancreatic enzymes could taste like strawberries in my imagination. My mom probably has a different version of the first year: I had just been diagnosed and shortly after, my father was diagnosed with terminal pancreatic cancer. I am sure for my mom this was the most challenging and heartbreaking year of her life. She was and is the best caretaker in all realms of her life.

3. Medication $$$: Medication costs with CF (any chronic disease really) are astronomical. Orkambi, the first medication to treat the cause of CF, retails at $259,000 year- not even kidding. Pulmozyme, an inhaled medication I take twice a day, is $72,000 a year. Of course, I have primary insurance that covers a large portion of these costs but even the co-pays per a month would bankrupt you when you take 18 different medications a day. I am VERY, VERY, VERY thankful I qualify for an adult CF program from the State of Ohio which covers the remaining cost of my medication after my primary insurance. Hospital stays, doctor visit copays, clinical tests, and home IVs are a completely different story. It ain’t cheap being sick, ya’ll.

4. Illness + hospital admissions: I have lost count of my total admissions over the years, but my first admission was at age 11 for IV antibiotics (which is pretty dang good by CF standards). My longest stay was 41 days in high school. In college, I started “dorm” IVs so that I could continue going to school and reduce my hospital stay to only a weekend. Last year I was on IVs 5 times, which has been my worst year yet. Thankfully, I now bypass the hospital completely and begin IVs at home because my doctor is a rock star and that’s where I am most comfortable.

5. Diet: High-fat, high-protein, high-salt and high-calorie. This is why I am always eating :D.

6. Clinic: I have been going to the same clinic at Rainbow Babies & Children’s Hospital in Cleveland since my diagnosis and love the staff there. I could not say better things about my clinic. I even serve on their CF Quality Improvement Team as their only patient representative.

7. School: I am thankful that God has blessed me with intelligence and quick comprehension. In 4th grade, I missed 114 days of school due to CF and still don’t know how to multiply fractions. I had a tutor some years to instruct me when I was absent for extended periods of time, but I made it to Case Western and graduated with a Bachelors in Anthropology, Minor in Psychology and a Certificate in Global Health (still in the mix of getting my masters), so I did all right, I think?

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8. Non-compliance: Middle school and early high school were my non-compliant years. I didn’t physically feel like I needed my treatments and I was a snotty teenager. My mom had it rough for a while and we fought a bit before I got my head out of my butt.

9. Greatest accomplishment-biggest challenge: This is a tough one for me. I think my greatest accomplishment is just being genuinely joyful. The Lord has blessed me with consistent happiness despite everything, and I am grateful I wake up feeling that way most days. Lots of CFers (people in general, too) have anxiety and depression, and thankfully, I don’t suffer from either of those. My biggest challenge has been reminding myself that I need to stop comparing my life to the lives of my normal peers. It’s ok I don’t work full-time in a career, have a 401k, and I hop in bed at 8pm most nights. My life looks a little different and comparison is the thief of joy.

10. Pros + cons: Pros- Unique perspective, gratitude, faith, empathy, focus, strength, relationship with my mom and sharing my experiences. Cons- fatigue, pain, coughing, mucus, limiting my ability to work, feeling dependent on medication and others, and the financial burden.

11. P words: PICC line, port, pills, physicians, poop, pseudomonas- that’s all I have.

12. Cracking point: My cracking point was probably last fall. I was tired all the time, not sleeping, started Orkambi, suffering from chronic pain, and felt pretty horrible but my lung function was pretty good. Working full time was exhausting me and I had little energy to enjoy life otherwise. It was very confusing and I felt very burdened trying to be “normal”. Now, I feel much, much better after finding a better balance!

13. The first time I heard that big word (or phrase): “pregnancy in CF”. I remember being 13 and getting “the talk” from my peds CF doctor. Back in 2003, he said having a baby when you have CF is difficult but some women do it. You have to work for the opportunity to be pregnant and after that it was more of an “if” than a “when”. Other options included using a surrogate or adoption to preserve health, otherwise planning a pregnancy was important. That stuck with me forever because up until then I didn’t realize my disease would affect my ability to experience typical milestones.

14. Out of the mouth: “You’re so little.” “You eat a lot.” “Are you sick again?” “Do you need water/cough drop?” “Where have you been?” “You’re still hungry?”

15. Organ donation: Donate your organs, it’s really as simple as that. Double lung transplants, kidney transplants, and liver transplants are fairly common in end-stage CF. So many people pass away while waiting on the list due to organ shortages. Make your passing a time filled with hope and thankfulness for another suffering family. P.S. I am an organ donor as well!

16. What is that?: I hear this most often when someone sees my Vest for the first time or when I am in a bathing suit and my port is visible. Sometimes it’s just a puzzled side-eye look, but don’t think I don’t know what you are looking at.

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17. My support system: My mama, Peter, Sybil (of course), my siblings and cousins, and special friends in the CF community.

18. Hygiene: Germs are dangerous to CFers. When we catch the common cold, the chronic infections and the cold virus battle for resources in our bodies and can exacerbate our CF and become really serious. I don’t live like a germaphobe but many CFers do in order to stay healthy and out of the hospital. Wash your hands, cover your cough with your elbow, and get your flu vaccine, please.

19. Smoking: Ugh, smoking. Of course, I hate it. On one side, I don’t understand why you would choose to damage a perfectly good organ. But on the other side, I recognize the control addiction can have on someone, even someone who loves you and sees you struggling to breathe, and so I don’t really get upset when I see my family members smoking. Everyone needs grace and I have the opportunity to give it to them.

20. Family: I am the only one with CF in my family but we are unsure how many members are carriers. Within my family, two brothers married two sisters causing a group of double cousins who will also especially need to be tested before they have children, along with my siblings.

21. CF friendship: The CF community is crazy connected. Mostly, people talk online since we are encouraged not to be around each other due to infection control guidelines. It’s really hard not to be able to hang out in person with the only people in the world who “just get it”. I have bended the rules a bit this year and I don’t regret it!

22. The life of a CFer: Managing CF is a full time job. I do my Vest around 14 hours a week, treatments around 20 hours a week, cleaning and managing equipment around 4 hours a week. I take ~35 pills a day and continually watch my blood sugar. Add all this on top your average life of working full time (I work part-time now), managing a household, and having time and energy for a social life…. It’s almost impossible.

23. 5 minutes of fame: Salty Girls, working on The Salty Life Magazine, getting recognized in a townie bar for this blog- so funny!

24. Biggest wish: My biggest wish is to carry a pregnancy, be an exceptional mom, and have a nice garden to sit in with Peter. Underwhelmed by that wish, haha?

25. Biggest fear: My biggest fear, both on a micro and macro level, is missing out. I have extreme FOMO when my family hangs out without me because I am busy, too tired to do anything, or stuck in the hospital. I can’t handle it. I also fear I will miss out on life- pregnancy, raising kids, reaching milestones, or even silly family parties after I am gone. Also, that one day they will remove Friends from Netflix.

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26. A legacy like no other: I want to leave a legacy of empathy. CF has taught me so much about other people’s pain and I feel like I have an ability to experience their pain with them. I think bearing witness to someone’s struggle is one of the most important things you can do to support them.

27. My wish for CF: A cure for the people who feel like giving up, for the parents with children with CF, and for the young adults struggling to make really difficult decisions at such a young age.

28. Remembering those who lost their battle: This past year I signed onto facebook and saw too many posts about CFers passing away. It was a tough year for our community. Each passing is just as sad as the next, and I am always so heartbroken for their families they leave behind. I never talk about the life expectancy of CF on my blog, mainly because it’s not something I choose to focus on on a daily basis. But the reality is, expecting to live only to your early 40s is not good enough. People fight so boldy with this disease, and I always take a moment to remember them when I feel I am taking advantage of my own health. I am so very blessed to be where I am.

29. Fundraising: Fundraising is so important since CF research receives almost no federal funding. Thank you to everyone who supported our fundraising endeavor by purchasing a Flowerlungs t-shirt or joining us on the Great Strides Walk! Your support is so very appreciated and humbling and you are making a difference!

30. Raising awareness: The past year has really been a time focused on raising awareness about CF for me personally. I get to live this special life and therefore, I have a responsibility to open up and educate those around me. To me, awareness brings understanding, understanding builds empathy, and empathy accelerates change.

31. Thank you: Biggest thank you for reading this and making it to day 31! I hope you learned a tid bit and continue to enjoy your month- whatever that looks like.

-J

A Fervent Love

Happy Mother’s Day!

To all the women who have sacrificed because they love their children more passionately than possible, you are greatly appreciated and adored. Thank you for being our mamas! Enjoy the sunshine and know you are loved today and always.


I believe in the unparalleled and fervent love of mothers. A love so bold, so encompassing, and so very selfless that begins long before birth and spans beyond the stiffness of time. Collectively, moms fix the hurt, celebrate our happy, and love outside conditional limits. They are a fierce force of protection eager to guard and give to shape a small life. Sacrificially, moms follow one simple rule: love your children with all your might.

And they do, beyond reason, beyond appreciation, and beyond awareness.
2016-05-06_Photo1.jpgMy mama is uniquely very special (a fact- not an opinion). She’s a single parent (the only parent I have truly known), a respiratory therapist, a three-time cancer survivor, a listening friend and counselor, and the most dedicated caregiver. She has tactfully served so many roles over the years, but I have been blessed to know her in a very different context than my siblings: a mom of a child with a life-threatening chronic disease. Particularly, this version of my mom always outshines any standard of exceptional motherhood; the length of her love and the depth of her love are endless.

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If I sat down to type out every time my mom held my childish hand at the sight of a needle or decided her own needs and wants were second to my health; for every ounce of anxiety and grief she replaced with comfort and refocus this post would be never-ending. I can’t recall the sum of minutes she has spent hugging me or the many difficult conversations she has endured unruffled so that I could be the blubbering mess. I don’t know the exact amount of money she has dedicated to hospital bills and medication or the number of nights she lay awake with worry. She protected me from the scary reality of my disease and gently handed over pieces and parts of my truth when it was time and I was ready. She understands my limits and still yearns to indemnify them- lovingly, helpfully, and encouragingly.

2016-05-06_Photo52016-05-06_Photo3Moreover, her greatest service is that of the living example she sets by repurposing very ugly moments as fuel to a faithful and fighting spirit. Never needing to craft stories of strength and resistance, she fully embodies those qualities. She is tough and knowledgable, yet gentle and funny. My mom has guided me in recognizing a sincere truth: financial stability, success, and supposed normalcy will never be as valuable as the Godly love you show those around you, the attitude with which you fight your hardest battles, and the gratitude you allow to fill your heart. Those are the important bits to hold on to in this life.

These lessons have been the greatest gift a sicko can learn from a woman who has given everything in support of your life, health, and happiness. I will be forever grateful for the time we have spent alone, just the two of us, waiting for appointments or seeking further healing while enjoying the company of someone you know loves you beyond understanding.

I love you, mama! I know that I was carefully selected to be your daughter so that I could learn to fight like you. Thanks for being my fervent mother, always loving and eager to care.

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Great Strides + Snazzy Tees

One of my own unfortunate personality traits is that of being a slight pushover. I really, really naturally dislike making people feel uncomfortable or requesting they do things that inconvenience them. It just makes me feel icky all over and so I do it sparingly. Bleh.

For months, I have struggled with deciding whether I should form a team for Great Strides, the annual 5k walk and fundraiser for the CF foundation, or just wait until next year. We have a lot going on in our family right now, i.e. special showers, weddings, medical diagnoses, and a new baby on way, and I figured no one really has the time to fund raise or make Great Strides a priority. And, rightly so.

The truth is, paired with those excuses, I doubt my own ability to ask people to care quite often. And even after making the Facebook event and launching the booster for team tees, I am still doubting my ability.

This has been a hard transition in my experience of battling a chronic disease: opening up enough to share this part of my life and balancing my own perceptions of making others feel uncomfortable- or better yet feeling as if I am asking them to take on a piece of my burden. Only upon doing so have I realized that the result is an overwhelming return of the most honest support and encouragement. A kind of support far greater than expected and more desired than I ever knew.

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To everyone, thank you for caring, reading, carrying a piece of CF on your shoulders, and supporting my shaky vulnerability. You have shown me that it’s ok to request solace during your struggles and to wish to share in your own triumphs. I love you and will forever be grateful.

We would love to have every single one of you walk for Team Flowerlungs to support medical research and improve the quality of life for CF patients in the US on May 14th at the Cleveland Metroparks Zoo! Bring a buddy and come share in a beautiful day at the zoo!

How to get involved:

1) Join our team! All we need you to do to become a member of our team is click on the “Join our Team” button. The walk is free and from there you can make a donation or start your fundraising.

2) Can’t make it the day of the walk? Be a virtual walker and donate to any of the existing team members! Your donation will be used to help improve the quality of life for CF patients all over the US.

3) Order a tshirt and wear it proudly! Proceeds from the tshirts will be happily donated to Cystic Fibrosis Foundation. They are snazzy and designed by my Peter :).

With a heart full of happiness & gratitude,

J

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.

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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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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.