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 

Snap, Crackle, and Pop: Knee Dislocations

Hello again! Did you miss us? We missed you too! The last few months have been a rollercoaster but we are back now with more stories, more reflections, and more perspectives! We won't give you anything except the most empowering stories and inspiring reflections. We are back and we are hoping for more learning for us and for you!

To start off after a long hiatus we bring you a story from an individual with battle scars of strength. Joint dislocations are scary. Imagine constant dislocations. You don't get used to it, it still remains scary with additional anticipation fear of the next one. They are not as easy as popping the joint back into place. So many muscles, ligaments, blood vessels become displaced and possibly injured requiring an ER visit or admission. Read their story! 

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"Just out of the blue, one day "POP" as I went running down the hill with my cousin. I was told it was nothing to worry about but a few years later that left knee just wouldn't behave, and it kept popping out with its friend, the right knee, following by example. Sometimes symptoms don't have a diagnosis and this one was one of those situations. There was no syndrome or condition to name the frequent knee pops and dislocations I was experiencing. Perhaps it was a combination of accelerated growth and ligament stretch combined with a shallow kneecap and knocked knees. 

I vividly remember my first knee dislocation. I could not move! The pain was unbearable. The fear ever more overpowering. My young brain could only foresee amputation, and nothing was more scary than the fear of losing a whole leg. 

This all just became a very annoying and frequent field trip to the ER. The doctors there probably knew me by name at some point. I felt fortunate to have a great support system at home and in school. My friends would carry my backpack and binders as I hopped down the hall with my crutches. Then finally when I was in Grade 6, the orthopedic surgeon recommended knee braces. Oh man were those ever the most cumbersome, unappealing, unattractive things ever created. No outfit I wore could make me feel comfortable in those beasts. The elementary kid in me just wanted to look like everyone else and not be asked questions when I was unable to participate in Phys-ed or track & field. It was such an isolating experience to not be able to partake in all those athletic school events. 

In grade 8 I decided to join badminton. Everyone else at school was involved in sports so why not me!? But this was very short lived, as close to the start of badminton classes I had another dislocation. The only thoughts in my head "I can't even have this without something going wrong. I can't do any sport".

At that time my physiotherapist suggested that I try swimming and cycling. My dad and I started cycling together and we haven't looked back since. In the summer of 2015 and 2016 I got two patellofemoral reconstruction surgeries. With 6 weeks of rest, i was back to learning how to walk. I remember my physiotherapist told me "You are my 6th patient who has had this surgery and i have never had a failure", and I was not going to be his first. I was determined, I was motivated!

I have spent months strengthening my knees with Pilates, uphill walks to work, and cycling with dad. I have spent time cultivating my hope that things will work out. My trust in physio has grown and believe me when I say IT ACTUALLY WORKS! Still not fully convinced that everything is okay but I feel like it is better than before. It is still a work in progress and maybe I will never be able to run, but that will not stop me from reaching the destination!!"

                                                                                                            - Anomymous

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