Living in Florida with Lupus
Yes, I am a Lupie, a spoonie, and a "fatiguer" (ha! I just made that one up, but it fits). Living my life in Florida with this chronic illness is not a walk in the park. If we're speaking literally, it's not a nice walk anywhere. However, I like to consider myself a warrior. A true warrior is a brave and experienced fighter. I consider myself brave and somewhat experienced. You have to be brave to wake up every morning, not knowing what body part will hurt, which joint will be swollen, which part of your skin will be red, and how tired you will be that particular day. I question my level of experience because I have only had to wear this label for six months. When I think about experience, time is so relative. If I told you that I've been teaching for 6 months, you would consider me a rookie. You may even ask the principal to place your child in a different classroom. If I told you that I was practicing medicine for 6 months you might be concerned if I was prepared to treat you. You might ask for a different provider. However, if I told you that I've been going through chest pain, shortness of breath, joint pain, and swelling intermittently for 6 months....you might say, "Oh my, that's a long time!" If you didn't say it, it's okay because I will say it for you. These last 6 months seem like the longest months of my life.
So, what makes living in Florida with Lupus so bad? Well, Florida is considered the sunshine state. However, Florida made it on the list for the top 5 states in the United States with the highest amount of rain each year. When the sun is shining most Floridians can bask in the sun, take a swim at the beach, or choose which activity to pursue on a hot Florida day. However, many people with Lupus become extremely fatigued in the sun, end up with a rash, experience heat intolerance. or go into a flare. A flare is a period of time where the body attacks itself. Then, you have your rainy days. On these days, my joints swell and the pain sets in. I feel like a 90 year old lady in the body of a 35 year old woman. When I was a child, my grandmother used to grab her joints and say that she could feel a storm coming. I would ask her, with a chuckle, "How do you know?" Half of me wanted to laugh out loud and the other half wondered if there could possibly be any truth in her logic. Trust me, in those days (Did I just say, "in those days." How old am I?) the older generation didn't always tell us the truth. They told us what they wanted us to know or manipulated the truth to get us to behave. Now, years later, I feel the storm coming in my knees and my ankles. I often wonder if I should call Channel 7 news and alert them of a hurricane because the pain can become so strong and hard to bear. On those days, I wonder what life would be like if I lived anywhere else.
Recently, it has rained every day in Florida for more than 10 days. Some people may look through the window and thank God for the rain. It's purposeful in it's own right. It waters the grass, washes the excess dirt off of our cars, and is needed for the cycle of life. Unfortunately, each rain drop and change in the barometric pressure can bring a tear to my eyes, wash any hope of a "normal" day away, and make me feel defeated. Times like those, I remind myself that I am a warrior; brave and experienced.
Trust me, I know that every state has their own set of triggers for Lupies. However, I can only tell you about mine, and surprisingly I wouldn't give up this state for the world. I'm in love with this place. Share your thoughts, experiences, and questions on our social media page, website, or through email (firstname.lastname@example.org).