Cystic Fibrosis: 65 roses

Hello, I am a 25 year old cystic fibrosis warrior. CF is a genetic disease of the lungs and sometimes other body systems as well. I was diagnosed with CF at birth and since then I have experienced CF as a child, teenager and now an adult.   Although, today I have a more optimistic outlook and found my rhythm with CF, this was not the case at first. I struggled with making my peace with my diagnosis and getting to the mindset I have today. In no way am I suggesting that this is an easy process. 

I wanted to title this "65 roses" to honor the story of a 4 year old boy with CF who innocently mispronounced cystic fibrosis as 65 roses. 

Side note, I enjoy quotes and writing, a fact that you may notice as you take this short walk into what my life has been like.

I would like to begin by sharing one of the biggest challenges I have faced  as an adult with CF. I have struggled immensely with balancing the constant need for medical care and living life. From daily treatments to regular check-ups and hospitalizations, it  felt like a full-time job. During my childhood my parents took charge of my medications, physiotherapy, and diet, leaving me to enjoy the backseat of my medical care.  However, now that I am an adult, I find myself trying to find the perfect routine to take my medications, do my hypertonic saline and physiotherapy, all the while balancing my work and social life. 

Living life like this at times has been taxing and thoughts of giving up have crossed my mind. But here's the thing: it's worth it. 

I found that taking care of my health allowed me to feel so much more in control. Sure, my friends do not have meds and physio, but they do have morning routines. I follow a specific diet, but I find myself becoming more creative with the meals I prepare for myself. When I started looking at my medical routine in this light, it became easier for me.

A challenge that is not spoken of is advocating for your care. One of the most important things I've learned as an adult with CF is the power of self-advocacy. Nobody knows my body and my needs better than me, and it's up to me to speak up and ask for the support I need. Whether it's advocating for healthcare providers to try something different or better healthcare policies -the cost of some of my medications are crazy- or asking for accommodations at work. I've learned that my voice matters and that I have the power to make a difference. As Maya Angelou once said, "I can be changed by what happens to me. But I refuse to be reduced by it." Living with CF has taught me to be resilient and to never give up, no matter how tough things may get.

Another important challenge was isolation. Living with CF as an adult is tough, thus finding a supportive community is vital. As the African proverb says, "If you want to go fast, go alone. If you want to go far, go together." Whether it's connecting with other CF patients online or attending support groups and events, having a network of people who understand what I'm going through has been extremely vital. It's a nice reminder that I'm not alone in this journey.

Living with CF isn't just about medical care and community - it's also about finding joy and meaning in everyday life. For me, that means pursuing my passions, whether it's writing, cooking, or spending time with my loved ones. It means finding beauty and wonder in the world around me, even on the toughest days. 

I often think about this quote that I saw in my doctors office, "life is not measured by the number of breaths we take, but by the moments that take our breath away"

So to anyone out there living with CF or any other chronic condition, know that you're not alone. You're strong, capable, and deserving of a full and fulfilling life. Keep fighting, keep advocating, and keep living your best life - one day at a time. 

                                                                                                                                - Anonymous