To a Very Special Sister

November 4, 2015November 4, 20154 Comments

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 28^th 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.

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 She is internally good even when she had a right to be withdrawn.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.

I love you, Chessy!

Health Update

October 29, 2015November 17, 20157 Comments

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

October 26, 2015November 17, 20152 Comments

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.

Salty Girls Book

October 20, 2015November 17, 20152 Comments

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.

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

October 13, 2015October 14, 201520 Comments

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.

Flowerlungs

May you pluck thistles and grow flowers in both mind & body

Tag: cystic fibrosis