In 2022, I wrote a blog post about how cystic fibrosis shaped my career. Over the course of 18 years — all while battling CF — I obtained two degrees, became a nurse educator, and climbed the ladder to become a nurse manager at a successful cardiology clinic where I managed more than 40 staff members and worked alongside 18 cardiologists. 

But between then to now, my narrative has shifted to how CF is reshaping my life. I thought I had checked all the boxes — education, career, marriage, joining community organizations, and home buying. However, the most important box that was missing is self-care. Gradually over the last three years, I have increasingly lost the ability to complete the simplest tasks nor felt well enough to maintain the career that I worked hard to obtain. I was given some discouraging news last November informing me of my ineligibility for Trikafta^®. I was aware of how Trikafta had made great strides in the CF community. Because of this news, my life took a sharp turn from a predetermined destination to an unfamiliar destination — one filled with anxiety, worry, embarrassment, and sadness.

Anxiety, worry, embarrassment, and sadness are all the emotions I have experienced since having to focus all my attention on my health and watching my career and my role as a leader and teacher drift away. And when I say drift away, I simply mean that due to my CF progression, I was no longer able to meet the demands nor perform the duties of my job. Therefore, the organization where I spent the last 10 years giving my all to could no longer keep me on board. 

For so long, my superpower was putting CF last and showing the world how I accomplished so much with a chronic illness that had once carried a death sentence in my early childhood years. All the while, my health was slowly shifting. But I insisted on pushing through, and I did for 18 years. That feeling of being needed and making a difference in others' lives by sharing my knowledge and skills — that was my daily dose of medicine, my reason for pushing through, my reason for bouncing back quickly after exacerbations and lengthy intravenous meds. So what is my superpower now?

Eleven months later, I am still transitioning, still trying to adjust and accept. Counseling outside of my specialists has been the treatment that has gotten me through, allowing me to give myself grace and having patience to accept the now. As I approach life differently, I find myself shifting from career-driven to striving toward self-care. I wonder how this encourages and motivates the CF community and anyone dealing with a chronic illness. Now my days are solely dedicated to breathing treatments, airway clearance, nutrition, rest, repeat, and more rest.  

For most of 2023 I hid, only allowing people to see me on my best days. Avoiding and canceling plans became the norm for me. I decided going into 2024 that I would reinvent myself, taking all that I have overcome and achieved and using it as the foundation for a new me. I am still in the discovery phase of this reinvention. During this time, I am so thankful for my great support system. This includes my stunning mother and prayer warrior — our calls filled with laughter and sometimes tears are part of my daily routine. I am also thankful for a supportive husband who has held my hand and reassured me that this is best and what must be done, understanding that CF is a tough disease to live with. I have some incredible college friends who lift me and challenge me. I have a spirited mother-in-law who, over the years, learned just how strong CF adults are — seeing is believing. 

I have a lot of cuddle time with my yorkie, Queenie, which she enjoys more than me. I’ve stayed connected with some of my former staff who supported me during my leadership role and continue to encourage me through this transitional season. Also, I have welcomed some amazing sorority sisters into my life and just being accepted and understood is energizing. I had to remind myself that I am more than a career — I am a part of some amazing community organizations such as National Women of Achievement and Delta Sigma Theta. Through these, I can maintain my enthusiasm to volunteer and continue to influence the lives of others. As far as my career goes, I try not to think too much about it because I miss the impact I made. But I accept my limitations and new responsibilities, like self-care. 

In my efforts to reinvent myself, I have created a new social media account to journal my experiences shifting from career to self-care. I also joined a committee with the CF Foundation to help create financial wellness tools for adults living with CF. I participate in pulmonary rehab two days a week. Hobbies I once loved — such as gardening and making charcuterie boards with friends — I hope to start up again soon. Watering my plants while wearing my vest is boosting. And a cup of my morning coffee makes me appreciate the small things in life, like just being present. I will say, my body overall has appreciated the slower pace, and my mind and spirit are still adjusting. I am hopeful that a breakthrough will come for that 10% of us not eligible for Trikafta. Until then, I will remain thankful for my past, grateful for the present, and hopeful for the future, knowing where there’s a will, there’s a way.

Lastly, I would like for my readers to understand that my physical appearance does not reflect how I feel. I care about my image, however it does not always align with how I'm feeling or what I may be dealing with. So if “don’t judge a book by its cover” was a person, that person would be me.

Interested in sharing your story? The CF Community Blog wants to hear from you.