I have had some pretty amazing opportunities in my LuLaRoe journey, but one of my favorites is the blessing of training/motivational content from an amazing lady Danelle Delgato. She has challenged us to do a gratitude journal each day and it literally shifts your life. By taking time to focus on what you DO have instead of what you DONT, your mind flips into a positive place instead of a negative. To find beauty in even the ugliest places takes effort, but once you can switch that mindset, life is truly better.
My entire life, I feel like I have been able to find the silver lining in most situations. Cystic Fibrosis has been one situation that I have been able to look at and appreciate as a blessing instead of always seeing it as a curse. The support, the relationships and the mentality I have gained from having this disease is something I could honestly say I don’t know who I would be without. But as I lay in my hospital bed for the 17th day THIS YEAR, I can’t help but be reminded that there is still no cure for this disease. Yes, I can look at it in a positive mindset. Yes, I can appreciate what it has brought into my life. But no, I can’t shut my eyes to the fact that this disease could still take my life at the flip of a switch.
Trikafta (the new CF modulator) has given me so many better days. It has truly changed my life. I do focus on that - every single day, but in order to not let the fears slip in every once in a while, I have to admit to myself that this was not the CURE. It made my future feel so much brighter, but I will not stop advocating until I no longer have a deep hidden fear that my life may be cut short because of this ridiculous disease.
So, the only way I can make this fear a POSITIVE, instead of letting the negativities drown my passion and drive for LIFE is to continue to tell my story until we have more answers - until EVERY CF patient has a drug they can take to light up their future. I will take my anger, I will take my exhaustion, I will take my sadness and I will throw it into the bucket to create an even stronger passion to help END this disease.
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