Using My Treatment Time for Good
Seventy-five minutes a day lost. That is how I felt about my treatment time for most of my life. Yes, I would catch up on my shows, or watch Netflix, but nothing of real purpose. The shaking made it difficult to read or write, and the nebulizers made it hard to speak, so I couldn’t spend much of that time with others. This was before I had my Monarch, so there was no freedom to move around during this time either.
But one day in the fall of 2016, I changed the purpose of my treatments - for good.
How my “breathe bracelets” started
It started by making beaded bangles for our “Harvest of Hope” fundraising gala for the Cystic Fibrosis Foundation. As soon as I sat down to bead that night with the group, I don’t think I talked to anyone for the rest of the night. I was in the zone, in my element: bright colors, funky patterns, creativity at my fingertips. We made over 200 bracelets that night. As soon as we got home, I was searching the internet to stock up on beads and supplies so I could continue this new craft on my own.
I quickly realized I could use my vest time to make bracelets. Over the years, I have perfected the art of steady hands through the shaking of my vest (I am an expert at painting my nails on my vest). I started watching YouTube videos to learn the best way to close bracelets, and any tips and tricks I could get my hands on. It probably took a month or two, and a lot of broken bracelets (sorry to anyone who got one from me in the beginning!), to really get the hang of it.
Bracelets with a purpose
I started making bracelets exclusively with the word “BREATHE” to spread awareness and support for cystic fibrosis. All of my friends started asking for them, always wanting to support me in my fight against CF and help me spread awareness about the disease. Quickly, I was taking custom orders and to serve as everyday inspiration – in whatever form someone needed it - as gifts of goodness, as empowerment, as a connection to others with CF.
By only word of mouth and Instagram to spread my cause, I have made over 1,000 bracelets, purely by putting my treatment time to better purpose. Seventy-five minutes lost has turned into 75 minutes to breathe better and bead more.
The importance of breathe bracelets to me
These bracelets have a lot of important significance to me as well. Not only is it me putting my treatment time to use, but it’s helping keep the spirit alive of another with CF. A family close to us lost their daughter, Jenn, 11 years ago to complications from cystic fibrosis. She made bracelets while she was in the hospital waiting for new lungs. And now, I feel like I have had the opportunity to continue something beautiful that she began.
So if I can give any sort of advice to my fellow CFers out there, it’s to try and find something you’re passionate about to occupy your treatment time. It will make treatments feel like less of a chore and will give you a reason to actually be excited to do them. It will benefit you spiritually to find this kind of purpose in what feels like the monotony of treatment time, and benefit you physically by helping stay compliant with treatments as well.
Do you do something to make cystic fibrosis treatments fun and/or meaningful? Let me know in the comments below or in our forums.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?