Tuesday, May 30, 2017
It sounds rather odd to say that I'm grateful to have a disease, but in a strange way I am glad that I am the one to have lupus. Do I wish I didn't have lupus? Absolutely, but I would never wish this disease upon anyone else.
Being diagnosed with lupus forever changed my life. I certainly never expected to be 19 years old and receive such a diagnosis. For all intensive purposes life was just beginning. I was in college, in a new city, with a fresh start, but here I was being diagnosed with an incurable disease. Looking back I don't think I understood the magnitude of such a diagnosis because I remember being numb when I got the phone call confirming my diagnosis.
In the years since I've been diagnosed I've gone through a lot; a zillion trips to various doctors, hospital stays, surgery, countless medications, and the list could go on. I've gotten asked a number of times how I can be so positive when I live with chronic fatigue and pain (among other things). Truth be told I'm not always positive. I have my days where I'm utterly exhausted, my emotions are ragged, and I'm hot mess. But every day I have the power to chose to let this disease get the better of me or to chose to be joyful. I chose joy and daily remind myself how blessed I am to have access to a really great team of doctors who help me in this fight. I chose joy because I know there's lupus patients out there who can't run or lift or workout period.
I chose joy because when it comes down to it why not try to find the good in a not so good situation?
I know very well that at any point lupus could affect any of my other organs and ultimately take my life, but I'm not going to dwell on that fact. That's like getting in a car and wondering if you're going to get in a car accident today, you just don't think about it. You know the risks involved, but you don't live your life in fear. I'm not going to let this disease have power over me. Sure, there's days where it does limit me because of pain, exhaustion or whatever is going on, but it makes me more thankful for the days where I run pain free or stay out a little longer with friends.
I'm also grateful for the friendships that have been made because of lupus. In a strange way I was blessed because one of my best friends and I were diagnosed three days apart so we've been with each other from the beginning. We also met two other amazing women who have lupus and together we've formed an incredibly strong bond. We've been through hell together. We've been on doctors trips together, sat through chemo sessions together, laughed and cried together, and not even living on different sides of the state has been able to break our bond. We have a group chat that we talk on daily and there's nothing we don't talk about. These girls are my lobsters (if you're a fellow Friends fan you'll understand). If it weren't for lupus I wouldn't have these girls in my life and honestly I can't imagine my life without them, nor do I want to.
Lupus is a terrible disease, but this journey has made me a stronger person. I'm more confident, I'm not afraid to speak my mind, I no longer take health for granted, I make myself a priority, I'm not afraid to say no, and I've learned to love my body for what it can do. I could add a lot more to that list but I'm still on this journey. I'm still learning and figuring out what works for me.
I don't know where this lupus journey will take me. I know there will be good days and some not so good days ahead, but I'm going to take it one day at a time. Lupus awareness month gives me a chance to speak out about this disease and educate those who have never heard about it before or don't know what it is. I know that for as long as I live I will continue to speak out and raise awareness because knowledge is power.
To my fellow lupus warriors, we are so much stronger than this disease. This disease can take so much away from us, but it can't take away our spirit of determination to rise in the face of adversity or overcome medical odds. We are more than statistics. We are more than this disease. Know that I am always rooting for you and never forget that you are a warrior. You are lupus strong.
Thank you to everyone who participated in all the various events for lupus awareness month. Thank you to all who wore purple for put on purple on May 19th to show support for lupus patients and research. Thank you to for all the sweet messages, comments, and texts of support. I am so grateful for each and every person who took the time to read any of my posts this month (here or on instagram) and took the time to learn about this disease. I don't have the words to fully express how thankful I am to all of you.
Know lupus so we can have a future with NO LUPUS.
Posted by Rachael Miner