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Power

There are blessings in living with a disease that could kill you at any given time. Perspective is a gift. Sure, it’s terrifying, depressing, (insert truly any adjective here) to live with chronic illness, but that knowledge that shit could literally hit the fan at any moment causes you to not take things for granted. Life is short and happiness is fleeting. Choosing a life that gives you JOY becomes a priority. There is freedom in this. Take the risk, choose to be bold, go on the adventure because often it’s those choices that you are going to hold onto most when you are going through hell. 


My biggest fear when I began my remission was that I wasn’t going to be able to handle getting sick again. It was almost as though I would rather still be sick than know what it felt like to be HEALTHY (sort of, I was still narcoleptic and shit).  I decided I had to make it count. I threw a party every month I stayed in remission. While working my ass off, I planned trips with friends. I said ‘yes’ to every chance at experiencing some form of normal that I had previously been robbed. I truly lived what I imagined as my best life. In order to celebrate my one year of remission my family took a trip to Disney where I ran a 5K, 10K and Half Marathon over the course of three days. I attempted to soak up every single thing I had missed out on. Call it a manic mission to become something the person I always wanted to be. 


I have learned many things through COVID and feeling the wrath of Lupus once again. 

  1. Living in a body where you could wake up with a collapsed lung or have a stroke tomorrow conditions you to not be afraid of death. Every three months I face my reality when labs are drawn that determine whether I am in kidney failure or not. What is everyone so afraid of, no one makes it out of here alive?

  2. It is important to live life to the fullest whether you are healthy or not. I am so grateful I did this while I had the chance. 

  3. Sick does not mean you cannot find joy. Being true to yourself and putting yourself first is the only way to get there. I struggled with this until recently. At the end of the day, you are stuck with yourself and that reality is a lot easier when you like who you are working to be. Before COVID I was fixated on executing my personal plan for life, it wasn’t until I let go that I realized how wrong I had been. Not being in control allows for growth. 

  4. I am more ME than I ever was during my remission. Finding the good in every situation matters, even though it is hard. 

Be kind to yourself and others and keep fighting through the uncomfy of this shit storm. 




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