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!

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!

Health Update

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Last week, I went to CF clinic and followed through the motions that have become second nature: check-in, put mask on, sanitize hands, get vitals and sit down to do pulmonary function tests (or PFTs). I wasn’t expecting much since I have had two colds and 21 days of oral antibiotics in the last six weeks and had prepared myself mentally for a hospital stay and IV antibiotics. After my first blow and subsequent coughing attack, I was told I blew a whopping fev1 of 71%! I don’t think I will ever experience that level of shock again in my lifetime and I want to publically apologize to my PFT lady who I told to “shut up”. I WAS SHOCKED. I also apologize for telling you, “not to joke with me like that”. After I regained my composure, I asked her to look through my records to see the last time I blew in the 70s, and she responded that it was more than two years ago because those numbers weren’t even recorded on the card. SHOCKED. Then the mental light bulb flicked on and I knew this was the doing of Orkambi. To go from 54% in July to 71% in October could only be the work of the recently developed revolutionary drug that treats the cause of CF and not just the symptoms. I also believe it is my dedication to compliancy and the work of all those people praying for me on a daily basis- I feel your support, thank you. I walked out to the waiting room to tell my mom who had come along and she jumped up to hug me while the secretaries and nurses all clapped and cheered. It was a TV sitcom moment and I teared up a little, of course.

My first question as my doctor walked into the exam room was, “Why do I feel so sick if my lung function is so high?” It is true that the last few months have been difficult. I am constantly battling fatigue and for the first time, I am admitting that I have chronic pain everyday. I haven’t felt like myself lately, but a much more stale and weathered version. Most nights when Peter gets home from work, he finds the cat and I in bed resting and exhausted from the day endured, forgoing the preparation of dinner. I have essentially become non-functional in the evenings due to pain and fatigue and we planned to remedy that. Our action plan included a referral to physical therapy for chronic pain due to coughing, to stretch and strengthen the muscles in my back and chest. That referral alone gave me hope that I would feel better soon. We had further labs drawn to make sure we weren’t over looking an obvious issue that could explain the fatigue. Also, I received my flu shot (PSA: Get your flu shot! You are not only protecting yourself but people like me who would become life-threateningly sick from the flu. Just do it, pretty please. Ok, preaching over.). My doctor also suggested a hefty round of IV antibiotics to placate whatever bugs were sucking my energy. She agreed that I am more than qualified to start IVs at home without being admitted to the hospital for 48 hours. THANK YOU! I always thought that 48-hour policy my hospital instated was ridiculous and I am glad she decided to step outside the box for her patient.

And so, here I am a few days into treatment and feeling the effects of the drugs. My weekend consisted of sleeping in my own bed, receiving psychiatric therapy from my cat, using hot packs to ease pain and only stomaching Chick Fil A and Mac & Cheese. I can’t help but feel happy and hopeful though amongst the achiness and coughing. I never, ever thought I would see the 70s again and that just shows that I have been dreaming too small and my faith too little. Time to celebrate with another round of breathing treatments and limitless episodes of Friends!

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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Salty Girls Book

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All of last week, I eagerly waited for a very special package to show up on my door step. Each day that passed, I grew more excited and finally, Friday evening the anticipation was over and there it was: my copy of Salty Girls: The Women of Cystic Fibrosis! I spent the majority of Saturday morning, coffee in hand, reading the overwhelmingly honest and brave stories and admiring the beauty of all 77 women. Each woman photographed in this book has CF and has allowed the reader an intimate and vulnerable view of what true beauty and strength looks like. The photographs show smiles, sexiness and scars, while the stories read courage, perseverance and spunk. To my fellow Salty Girls, I am amazed by all of you.

I want to publicly thank Ian Pettigrew, a Canadian photographer. He is the mastermind of this grand movement and campaign for CF awareness. He also has cystic fibrosis himself and I can imagine how tired he is at this moment. Ian has traveled the country to take each photo and he designed, composed and shipped each book all by himself. He is such a hard working man and deserves praise for being a true catalyst for change. He stood up for us when the world told him not to do it and he allowed women with CF to have a voice. He gave us a moment to be strong, beautiful and flawless, all while owning our bodies and experiences. Thank you, Ian! You have forever changed the world of CF.

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Go buy a Salty Girls book and support the immense courage it took to do something never done before and display your body and vulnerability for the world to see.

http://thecfproject.bigcartel.com/product/saltygirls-the-book

A New Beginning

I did it.

I got my act together enough to make this blog happen. If you believe it or not, this blog has been a distant thought for almost 4 years. I continually put it off for when I was sicker, when I had more time, or when I was ready. A close friend was quick to remind me that the blog might never happen if I don’t begin now, in my present where I felt my voice was unnecessary at this stage. She was right. I am just now beginning to be vocal about the reality of my CF on social media after almost 20 years of “being a CFer”. Why? I really don’t know. I think it’s a number of things that have changed my perspective and given me the bravery to be honest and transparent.

First, Salty Girls has played a big part in this change. In April, I posed for a photo book about women fighting CF and the many challenges we face physically, mentally, and emotionally. It was my first time directly meeting other women with CF and knowing that we had similar scars, schedules, thoughts, fears, and never ending coughs. After the shoot, I got in the car with my husband; my heart felt full and I smiled, “They all coughed like me.” It sounds silly now, but that brief sense of community has changed me forever. I feel a duty to my fellow Salty Girls and to myself to educate people about our lifestyles and the bravery the world doesn’t see.

In addition, I am sicker despite my compliant efforts. In college, I did all my treatments, IVs, pills, etc., everything that someone with CF has to manage, but I was healthy enough to compartmentalize my disease and my other life. I lived in two separate worlds and I had enough energy to be present in both, while keeping them as distant as possible. That has changed. I have aged and my disease has gotten worse. Subsequently, my CF is everywhere now. It has grown into almost every aspect of my life and I would be stupid to continue to try to prune it, instead of embracing the change. I can’t eat, breathe, sleep, or move without CF being present. Basically, I can’t exist without recognizing my CF as an important aspect of my life. Every decision, every part of my day, and a very large part of my identity includes cystic fibrosis now.

And so, I am scared. I am scared to write about my life and my experiences with the belief that people might care. I want my friends, family, and strangers to see the reality of living with a brutal chronic disease, but more importantly I want you to see the joy that can persist in spite of pain. I want to put a face to that universal struggle of being happy in your present when things haven’t gone the way you planned. I believe with awareness comes understanding, followed by empathy and lastly, change. So, welcome.2015-10-13_blog-post