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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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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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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