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.

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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To a Very Special Sister

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On Friday, our family and friends sat in a crowded dark living room on the West side of Cleveland and quietly waited for my sister to walk through the door. Jessica turned 28 on October 28th and we had been planning a surprise “Golden Birthday” (a special birthday that celebrates turning the age of the day you were born) for weeks. The planning process was pretty easy as she proved to be the most gullible person on this planet and believed she was recruited to feed her friend’s cat while they were out of town that night. Upon entering the house, a loud “SURPRISE” and cheering, she was shaking and speechless for minutes (something she usually is not) and blown away by the decorations, Jessica-style food, and guests in attendance.

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Jessica is three years older than me, the middle child in our sibling trio, and a truly special sister. As I have aged, I have become increasingly aware that it must have been difficult for her to have a sibling with a chronic illness all these years. The reality is as a child and even as an adult, I require extra physical attention and mental focus from our mother. My needs are sometimes considered the immediate priority, I am often rewarded for doctor visits and hospital stays, and for years, I absorbed a large portion of our family’s income with medical bills and medications. It would have been easy for Jessica to compare our lives and be resentful or jealous in those situations. Honestly, I wouldn’t have blamed her. Instead, Jessica has always chosen to be a gracious, helpful and supportive sister. She is internally good even when she had a right to be withdrawn. I have seen her continually practice patience, empathy, tolerance and love towards me and the people around her.

Jessica has always unknowingly acted as a pseudo-parent to me along side my widowed mom. Her servant’s heart allowed her to welcome early responsibility at a young age. She taught me to drive illegally when I was 14 in school parking lots and to tie my shoes and cartwheel, both left-handed even though I am right-handed. She gave me lunch money to buy extra cookies in school simply because I wanted them. She taught me the importance of using my leadership abilities to make the most of my high school and college experience. She showed me by example how to just say “no” to influences that wouldn’t benefit my soul in the long run and to be proud of that decision. And while I will always be the wild one and she will be the sound one, I look up to her as a godly, successful, and caring woman. In the midst of the party, she looked at me while I hooked myself up to IVs and asked how I was doing and if I needed anything. Her continuous investment in my life reminds me why I love her so much. Jessica is a special sister to me and I know I am so blessed to call her that.

I am thankful for her guidance in my life, her constant accountability and her goodness. I am thankful for her example and the tiny path she leaves so that I can follow easily. She deserved to be celebrated, loved, and appreciated on Friday (she deserves to be celebrated everyday) and I am glad I could try to repay an ounce of her positive influence on my life with a big surprise, gold, glitter, and donuts.

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I love you, Chessy!