First Trimester Recap- Week 1 to Week 13

I consider myself one of the lucky ones looking back on my first trimester. Really, I don’t think my first trimester could have gone any smoother than it actually did. I believe everyone around me has lovingly been a bit surprised by that fact as well–I know I am not the only one. If I am being brutally honest, I thought those first 13 weeks would be a sh** show, and I had realistically prepared myself (and Peter) for the shower of preemptive baby poo coming our way. My initial thoughts: First trimester horror stories + CF = I am going down. Way to have any confidence in your abilities, Janeil. ☹

The reality was I was very aware there were women who spent the first three months with head hanging over the porcelain throne. Honestly, I thought with all the morning coughing I do, I would spend my fair share of time locked in the bathroom with my supreme gag reflex. Instead, I celebrated every time I puked because I knew that was just part of being wonderfully pregnant. I thought with already underlying chronic fatigue, the first trimester would wipe me out completely. Again, that wasn’t the case either. I felt an influx of energy and used that timely wisely. I worried about making it through the first trimester with no IV antibiotics to avoid exposing my developing babe to the harsh drugs. No harsh antibiotics here (minus my necessary daily ones)! I did it! I made it through the first trimester, and I did it with relative ease and healthy lungs!

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So, I consider myself extremely blessed because I know I fall into the minority group of “easy first trimesters”. Maybe the first trimester was so enjoyable because as Peter so eloquently put it, “You are used to feeling crappy”? Better yet, maybe it was all the prayers, support, and well wishes we received lifting me up to a healthier place? Either way, I truly felt great, hungry, a normal amount of tired, avoided IV antibiotics, and more excited with each passing week while baking that babe. Amen! My subsequent thoughts: I would do that 1,000 times over again!

Here’s a little more about my comfy and joyful first trimester being pregnant with cystic fibrosis:

Finding Out: I guess when you are so in-tuned with you body like I am, the benefit of having that connection is finding out you’re pregnant freakishly fast. At just 3 weeks 5 days pregnant, my body told me, “Get up out of bed and go take a pregnancy test because you are pregnant, girl!” And my body was right! Cue tears and hyperventilation.

I told Peter the next day and he was overcome by shock, just as I was. I think we both expected our TTC journey to play out differently and had our doubts we would ever be successful. The stats were not in our favor: about 1/3 of CFers need assisted reproductive technology to conceive and about another 1/3 only conceive after a year or more of trying. So to find out we made a human early on was very much our own little miracle! Overall, the first trimester felt long because we found out we were expecting so early, but it was incredibly joyful.

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OB Visits: Because my pregnancy is considered high-risk due to cystic fibrosis and also cystic fibrosis related diabetes, I am being monitored entirely by a Maternal Fetal Medicine (MFM) doctor, basically an OBGYN with extra training to handle complicated pregnancies. We decided a normal OBGYN just wouldn’t know what to do with me, and I am ok with that! The following things typically happen at my appointments: I usually get an ultrasound to make sure baby is growing correctly (it’s crazy to see the changes so far– the above ultrasound is 9w6d and 8w6d respectively), we go over my medications to make sure there have been no changes and everything is still safe to take, we go over my blood sugar numbers and adjust insulin as need, we discuss how my lungs are doing, and we discuss my weight gain. Starting at 20 weeks, I will get a growth scan at every appointment to continue to monitor baby’s growth. And from there, we see how things progress and adjust my care as needed!

CF Visits: I am also seeing my CF team on a more frequent basis to make sure I am the healthiest I can be during this time. As usual, I do a pulmonary function test (PFT) to determine how well my lungs are working, discuss my weight gain and calorie intake, adjust my medications, discuss my energy levels and other symptoms, and do a full physical exam. Surprisingly, my PFTs have gone up from 64% to 67% in the first trimester. YAY! Of course, everyone from my team comes in to see and touch my belly while asking all about my exciting pregnancy! I love my CF team so much and their constant support and detail to my care during this time is such an encouragement. I know this pregnancy feels like a huge victory for them as much as it is for me, and I hope I can make them proud by being a healthy mama!

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Morning Sickness: I had a touch of morning sickness up until about Week 8 but focused on keeping my stomach filled to help with the nausea and random vomiting, and it worked! After Week 8, the sickness was gone and there were only random moments of feeling queasy. I felt my morning sickness was very tolerable and ultimately, I knew I had the skills to deal with it (vomiting isn’t really a novel thing in CF).

Appetite and Cravings: Smoothies, fast food (Chick fil A, Taco Bell, etc), pizza, tacos, fresh fruit, cheese danish, different cereals, raw carrots, and brussels sprouts were some of my cravings. Basically, any time I overheard talk about food on the radio or while eavesdropping on a private conversation, I needed said food item ASAP. Pregnancy cravings are really just a step up from my already CF-induced food cravings. Poor Peter has spent a lot of time driving me to different food establishments, but he has always been a good sport about it!

Weight Gain: From December to Week 13, I gained around 8lb (104lb to 112lb), which was very desirable since I was struggling with poor weight gain during the holiday season. My goal is to eat an extra 300- 600 calories a day on top of my minimum ~3000 to 3500 calorie demand to gain between 28 to 40lb. Geez! I just keep telling myself, “Food is fight. Food is growth.” I believe I can get there slowly and surely, and so far I have! I think my healthy weight gain has been the most shocking aspect of this pregnancy so far. Eating appropriately and seeing such fantastic results on the scale is such a foreign concept to me in my normal CF life. As an result, I am so thankful I am putting on the weight we both need to stay healthy, and I am slowly learning to love my new maternity body that can’t fit into any of my previous clothing.

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Fatigue: My fatigue level from the beginning to Week 13 was very normal for me, even less burdensome than normal. There were days were I felt I had more energy than usual and was wondering when the impending fatigue would hit. There were also days were I napped and felt refreshed, and then days were I was tired. Overall, I personally feel CF-related fatigue is much more intense than pregnancy-related fatigue but that just might be me. Hopefully this energy will continue to transcend through the second trimester and beyond!

Other Pregnancy Weirdness: I had your usual cramping and twinges for the entirety of my first trimester. I now realize that all that stretching and pulling was needed because I started to show fairly quickly and developed a bump around Week 9 (and, I know it’s almost anatomically impossible at that point). People kept telling since I am petite, there’s nowhere to go but out. ☺ Who knows! I just went with the bump and embraced the congratulations and belly rubs from strangers.

With all the stretching, I experienced my very first round ligament pains pretty early on around Week 8 during hard coughs. I felt sharp pulling and tightening on the sides of my belly after coughing and then the pain would relax after a few seconds. My MFM agreed such strong coughing can definitely tighten all those muscles surrounding your belly causing sharp pains, and that I better get used to it. I am used to it at this point.

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CF Weirdness: The number one CF/pregnancy question I was asked after announcing we were expecting was, “Can you still use your Vest twice a day for 30 minutes for airway clearance?” The answer is yes! It won’t harm the baby a bit and is an especially important tool to keep my lungs as clear as possible. Eventually, I will have to unclip the bottom buckles to fit my giant belly and possibly have Peter “clap” me to target my lower lobes (form of airway clearance that looks like pounding with cupped hands) but for now, it’s all Vesting. Some women even say their babies are comforted from the shaking and noises of the Vest after delivery because they were so used to hearing it in the womb. ☺

I think the baby will also be used to my coughing, or at least I hope so. On my 12 Week ultrasound every time I coughed, the baby did a little squirm, floated up, and then back down from the force of the cough. It made me laugh and feel a bit bad for the disturbing poor thing. Eventually, baby will learn coughing is just a thing mama does, along with many other weird CF things.

That’s a wrap, people! Thank you for all your prayers and encouragement. I am happy to report how well babe and I are doing so far. Please let me know if you have any questions about this special pregnancy and I would be happy to answer!

Sending love and light,

J and Babe

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Our hearts grew a little bit bigger this winter as Peter and I learned we are expecting a precious addition to our family. It’s true! WE ARE PREGNANT! And we are so excited to share our happy news with you all!

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I’m not sure Peter and I know how to truly express the immense joy, crazy love, or gratitude we have felt already at this point in our pregnancy. The depth of our emotions just can’t be translated to a screen because they are much too big and mighty. At the start of our attempt to expand our family, I think we both expected there to be some disappointment and heartache, a lot of patience, and more faith than we were ready to give, instead the Lord simply decided our time was now. His perfect timing and His certain decision to make us parents of this special baby will always humble me. I still can’t believe we have been so blessed.

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Truthfully, the past three months have sort of felt like a whirlwind; like we are stuck in a long anticipated dream with no desire to get out. My belly is growing by the day, I cruised through the first trimester as healthy as could be with little discomfort, and I am rejoicing in the weird and lovely terms of pregnancy. I can honestly say I have enjoyed every single day of this new adventure so far and cannot wait to meet our sweet little dream all wrapped up baby-burrito style. This time has been so very special to us. Telling our friends and family have been some of the happiest moments in our lives, and we can’t wait to further share our unique journey of pregnancy and parenthood with cystic fibrosis.

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Our special little babe is due to make their arrival on September 9th, 2017, but until then please join us in praying for an enjoyable, healthy, and stable pregnancy. Specifically, pray that my lungs stay clear and unchanging, I can maintain good blood sugar control, and that I am able to gain the necessary weight to keep our babe and I strong and growing. Please keep in mind our physicians who have the difficult task of managing a complex, high-risk pregnancy. We ask that you pray for wisdom, knowledge, and skill while they care for the both of us (Oh, goodness—“both us of” feels so weird to say!). Also, pray for the dad-to-be who will inevitably pick up the slack as I get more and more pregnant, and we experience a bit of transition from just two kids with a furbaby to eager parents with a human baby (+ furbaby). I know we are in for a crazy ride, but as always I appreciate your kindness, love, and support you have given our family.

Overall, we are uncontainably excited, deeply humbled; and most importantly, growing a human. We just couldn’t be happier!

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Stay tuned for more love and more baby,

J + P

(A big thank you to my cousin-in-law, Dave Blakeslee, at David Blakeslee Photography for capturing this special moment for us to have and to share. We are thankful for your talent!)

Podcastin’ Adventure

HELLO, HELLO, HELLO! I have missed you all so much and am excited to be getting back to blogging and sharing. I hope 2017 has been joyful and productive so far for you!

This past weekend, Peter and I sat down with a special dude, JD Caminero, who is the creator of a Cleveland-based podcast. “Quote Unquote” is a podcast focused on simply just telling people’s stories, and I was excited to get the opportunity to share mine. It was fun, difficult, and emotional to voice the special way I get to live my life because of CF. So, thank you JD for having us as your guests! We enjoyed connecting with you and hearing about your hope for your podcast.

If you choose to listen to the podcast, you’ll hear me coughing and clearing my throat; you’ll hear me get out of breath and struggle to talk for long periods of time. I thought I might be embarrassed hearing that, but honestly that’s daily life with CF. It was hard to talk for that long without working my lungs! Great job lungs!

I hope you enjoy what I (breathlessly) have to say and take something from it. I hope 2017 is a year where you turn your face towards the sun.

Sending Love and Light,

J

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Working to Live, Not Living to Work

You know what I have been thinking about a lot lately?

Our innate desire as humans to spend our time pursuing work and what happens when that doesn’t happen.

Last fall, I made the decision with the guidance from my care team and family to stop working full-time permanently. You got it– I am 26, “retired”, and ready to talk about it.

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The choice to stop working full-time wasn’t exactly an easy or normative decision to be made in my mid-twenties while everyone around me was in the thick of building their own careers. Truthfully, the reality of it all swooped over me, approaching at a speed I couldn’t foresee and with a certain level of stealth I couldn’t possibly avoid. At the time, I was close to finishing my master’s degree in public health and enjoying my full-time job as a nanny when I felt my “career days” were coming to an end, even before they had officially started.

As an adult with CF, this isn’t technically uncommon. Many CFers stop working long before their peers for various reasons due to deteriorating health, increasing treatment burden, and the typical energy demands of traditional employment. Recent research shows that the act of limiting or discontinuing work is associated with preservation and improvement of lung function, making it a popular choice for individuals at various stages of disease. I was one of the many in this particular situation, but in retrospect, I was a very heartbroken individual.

Outside our little CF world, we don’t talk much about losing your ability to work. Maybe it’s because the stigma and judgment that can come with the territory of an invisible illness– sickness that can’t be seen with the eye; maybe it’s due to the internal grief we experience ourselves from the loss; or maybe it’s because we strive for normalcy and stopping work in your mid-twenties is the opposite of normal. I’m sure there are many other reasons, many other fears, and many other silencers that bury this dialogue deep from the outside world, but having faced it myself, I think it’s important to provide it some sunlight.

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Last fall, I felt incredibly trampled by my disease’s unwillingness to compromise to the rigid expectations that were set before me– both my own and of those crafted from the outside. Larger society expected me to work as a well-educated, young, ambitious, and assumingly healthy adult, and I equally expected to somehow manage it all without fail. My body was incredibly worn out, but my mind and expectations were alive and well. It was the first time I failed to meet expectations as a whole, and it also was the first time I comprehended how attempted “normalcy” could jeopardize the quality and quantity of my future.

Consequently in the months following, my medical documents were reviewed and benefits filed. My five-year plan erased and purpose transformed. My schedule shifted and priorities realigned. I quickly recognized that for the first time in my life caring for myself and managing my disease was my actual profession. And, it felt weird. It felt isolating. Suddenly, I wasn’t 25 anymore– I was 65. But unlike those eligible for retirement, I found myself mourning the loss of something that passed long before its time: my opportunity to explore the typical working domain (i.e. social support from co-wokers, financial freedom, occupational purpose), to give back to society and make a difference, and to experience this particular hallmark of your twenties in a conventional way.

Something else that weighted heavily on my heart during this time was a sense of panic that people would assume my decision to stop working translated to laziness—nothing about CF life is lazy. (I know, it was really stupid.) I also hoped people would agree I was still filled with potential and value sans successful career. (Again, stupid.) Finally, I dreaded the unfair assumptions, beliefs, and judgments from overly critical individuals who frankly were clueless to my situation. (Sometimes, Janeil, you are just stupid.) For some preposterous reason, we care so much what others think of us that we sometimes lose our own measure of value. I think last year leading up to my decision, I lost my measure of value and success. I was trying so very hard to be “normal”—to fit into that stock mold of college, career, kids, retirement, etc. When in fact, I’m more than normal; I am extraordinary (just as you are)! When you are extraordinary, developing personal expectations that respect your own physical and mental parameters is the smart, healthy, and brave course to take.

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If anything, a great lesson has sunk in and made itself home within my heart in the course of my short retirement: I am the only one who can decide what is right for me. You do not live in my body, you do not walk in my shoes, my heart is not yours, and vise-versa. I hope I give others the same respect in the way they choose to live the course of their precious lives.

I made a smart, healthy, brave and equally painful decision to hand over one large aspect of my life to faith last year. I released another piece of normalcy from my grasp. It definitely wasn’t easy, but there were so many immediate and delayed benefits that a year later I know I made the right decision. With clarity and perspective that can only be gifted with time, I am able to see how the Lord closed one door in the face of an incredibly hesitant and disappointed Janeil last November, while simultaneously handing me the key to my very own door factory. Beautiful opportunities were presented to me over and over again—things I couldn’t have done if I was working full-time and exhausting myself of my resources. I have crafted a lovely, but unique vocation for myself and I am so proud.

It’s true that the best part of having something taken away from you is the empty space it leaves to be filled.

I became a more helpful wife following my “retirement”.
I became a more trusting follower of Christ.
I released a significant amount of burden and guilt I carried around.
I started this blog (ONE YEAR AGO LAST MONTH!).
I learned to rest, heal, and renew when my body needed it most.
I became a more responsible and compliant patient.
I found fulfillment in sharing my thoughts and investing in the CF community.
I gained more mental and physical energy.
I joined The SaltyLife Magazine team and had my writings published.
I volunteered with our CF clinic’s Quality Improvement Team where my unique opinion was valued and I was able to give back to my care team.
I was asked to share more about my special life at speaking events.
I participated in important clinical trials that paved the way for a better future.
I had more time and energy to spend with the people I love.
I had the occasion to enjoy the many simple joys that filled my days.
Finally, I had an abundance of health essential to plan and prepare for a family.

What changes in your life are you hesitant to allow because of fear? Try to be brave and look for the other doors.

Always with Love,
J

Aging With Growth in Mind– Not Decline

Today is my birthday! 😀 I turn 26 years old today, and I’m not sure how I feel about it.

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Before you throw your birthday cards illustrated with adorable cats out the window, hear me out. I don’t think I am alone in my approach to adult birthdays, aging, growing old, etc. It isn’t really a secret that in our modern society, aging isn’t a necessarily welcomed friend. We don’t celebrate gray hairs or wrinkles, and we don’t brag about our age after a certain point—we may even hide our true maturity, drop a few years when we can, and celebrate when randomly carded at a bar. Even more so, research now says that Millennials (that’s me!), specifically, fear aging more than any other group. Now, I can’t speak for an entire subpopulation, but I can confess that I, Janeil Emma Jaggers Whitworth, am afraid to age—even when it’s staring me in the face on my own birthday.

There, I said it.

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To me, it seems there is some indiscernible indent in time when we stop thinking about birthdays in terms of growth and milestones, and start thinking about them in terms of decline and degeneration. We stop asking what the birthday boy or girl wishes to do in their 30th year of life, 55th year of life, or even 83rd year of life. We stop imagining growth and ultimately, presume decline. I suppose we do a great disservice to ourselves when we buy into the myth that our best years- our healthiest, most joyful years- are behind us. I have fallen victim to this way of thinking. I see it in the way I view my own aging process with CF, and I am challenging myself to stop it right now– at age 26.

Moreover, specifically in the world of cystic fibrosis, aging and adulting with this genetic disease is a relatively new phenomenon. Two decades ago, CF was once considered a pediatric disease but thanks to better care and research, the CF population is now composed of more adults than children. It’s exciting! It’s hopeful! It can feel like we are entering uncharted and anxious territory. That being said, the very nature of CF is progressive. As time passes, we are expected to get worse and birthdays can serve as a metaphorical reminder of that detail. Even when we talk about treatment, we chatter about halting the damage, or stopping the effects of time—we talk about only maintaining with each year.

We stop imagining growth and presume decline.

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Today at age 26, I will be dropped from my mom’s health insurance and have spent the last few months choosing a new plan, coordinating benefits, and praying I haven’t made a mistake overlooking a minor detail. Today at age 26, I am 10 pounds lighter, my lungs are weaker at the moment, and I am on IV antibiotics following a bout of unknown sickness that slightly rocked my little 25-year-old world.

Maybe I needed to be at this point the moment I turned 26 to really test my belief that aging can be focused on improvement. At this point, I have more room to grow–more space to advance and rally than my previous years. I have percentage points to gain and goals to work toward once again. I am firm believer that things happen for a reason, and maybe that reason being I personally needed a reminded to view my own movement of “progression” in an upward slope, instead of a downward one. To start at the bottom and find my way back up– to appreciate that if this is my “bottom”, than I am more blessed than many.

So as I turn 26, more than ever, I am now holding onto the belief that this will be my best year yet! There is so much beautiful opportunity to look forward to. So many things I wish to see, do, and especially, eat. Twenty six and counting is my new motto.

Let’s party! Bring on all the queso and all the cake! I have work to do.
Thank you for all the birthday love and wishes! Let’s make birthdays about celebrating our lovely potential surrounded by the people who help us achieve it.

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Preparing for Pregnancy, Oh My! 

Once again the great folks at the Cystic Fibrosis Foundation allowed me to write for the Community Blog about a recent appointment Peter and I attended. As I write below, we are tiptoeing into the process of extending our little family and I feel honored to be able to share my experiences with an array of audience members. 

Read it here.

I realize that the journey to parenthood can be quite an intimate process- a secret kept between two partners and then eagerly shared when there is news of an actual baby. Once again, our process is a little different. There’s more planning before conception, more risk to discuss and questions to answer, and a closer watch by a large medical team (already not so intimate)- a type of process many have so little knowledge of. 

It was just this year that the CF Foundation added a portion on their website highlighting reproductive health. In 2016, we are finally ready to say having children when you have CF is plausible. It makes me incredibly happy that we are at this point in our fight on the grasp of CF, but there is a substantial lack of research and resources for women in my shoes. 

The truth is, we are our best resource. That “we” being the community of women with CF who hope to become moms and those who have simultaneously mastered both roles, patient and mother. Facebook groups, Instagram, and texting have connected me to women who have experienced it all in their journey to motherhood and they are willing to share. 

Essentially, I felt compelled to share my own intimate journey as a means to repay all the women who have offered up their own stories, experiences, advice, and encouragement to me over the last couple years. It always helps to know what you are facing, to have a source for answers to questions, or a friend to confide in. 

I hope my blog can be added to the wealth of knowledge. If by chance, young women with CF stumble upon this blog, I hope they will be encouraged to take the very best care of their bodies in preparation for what the future may hold. I hope they’ll be calmed and they’ll be informed on the hills and valleys before them. More importantly, I hope they’ll know they are supported by a group of women who understand the road to parenthood with CF may not be the smoothest, simplest, or most conventional route on the map. 

Love, 

J

Cotton Anniversary 

Two wonderful people tied the knot this weekend surrounded by their friends and family making it a happy and treasured past few days. I absolutely got caught up in the beautiful flowers, happy tears, and nervous smiles of the betrothed as they met each other at the end of aisle; but my observation of the vows has morphed into a deeper and greater experience following my own bridal march. What used to be a grand tradition of hopelessly romantic daydreams is now a more solid and applicable knowledge of what it truly means to promise your life to someone for all eternity.

This ceremony was no different- a fragrant and beautiful dream of devotion and spoken promises fueled by love said through eager smiling faces. Amidst my own silly permanent grin as an audience member, it dawned on me that of the two standing on the altar, it was very unlikely that one squeezed the other’s hand a little harder on “. . . in sickness and in health” as I did two years ago today.

Entering into marriage, I like to believe Peter and I were prepared for all the special obstacles that would come our way due to my health; but honestly, I’m not sure I believe anyone in my generation is slightly prepared for marriage. Marriage is tough business, folks. A happy and meaningful relationship is intentional, flexible, and progressive— adjectives unthinkable in a society saturated with instant gratification.

What didn’t occur to me back then was that most couples entering into marriage are healthy and vibrant twentysomethings and the realities of those vows “in sickness and in health” are far faded away by a murky trajectory of life. But for Peter and I, “in sickness and in health” was our now. It would always be our now and a significant feature of our marriage. It made our relationship special.

Has marriage with a chronic illness been easy? Absolutely, not. My disease has been felt deeply by both of us, in different ways I am sure. Moreover, just as in every other part of my life, the influence of CF has highlighted the very depth of my understanding of love. It’s given me a unique lens to view our marriage through, which is why gushing over my hunky husband right now is as easy as pie. When I think about the reasons I love Peter most though, his fearlessness and willingness to love me- my uncertainty, my burden, my lifestyle, my expectancy, my perspective- tops the list.

Peter took on a new life that would require him to work harder and love deeper with the knowledge of the possibility of losing it sooner. He has always been calm and encouraging when faced with our reality. That’s why at the end of each day, I fall asleep undeniably knowing I am wildly and fiercely loved by my husband.

And that is my dream come true.


Am I going to say Peter is an expert on everything CF? Heck no. Dude, doesn’t know the difference between albuterol and hypertonic saline. But, he’s always willing to learn in an effort to become a better caregiver- something I appreciate so very much. I might have once giggled as my mom instructed him on the how-tos of hospital sheet changing upon admission, or teased him when he learned to access my port while adorned in gloves and a mask, but what I realize now is the loving force of his intentional devotion.

Our young marriage is different. Our lives will always be slightly different than our peers in similar stages of life. Our priorities and goals have to be focused and planned in an effort to experience it all despite CF, and sometimes, our goals will be rewritten. Daily, I am reminded of the promise he made to me because I see him fulfilling those agreements through his actions- every time he moves my plethora of machines from one side of the house to the other, every dinner he has ever cooked because I have been in bed, and every extra hour he works so that I have more hours to care for myself. He has done it all out of love- just as he promised.

These past two years have been so much sweeter and far more superior because of that sunny Friday afternoon when Peter held my hands and vowed to love all of me- every last mutated cell.

Happy 2nd Anniversary, Peter! We made it to Cotton. I love you so very much!

(Congratulations, Katie and Steven!)

#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