I am a crafter. I am a creator. I am a designer. I am a wife. I am a Christian. I am a dog mom. I am an aunt. I am a reader. I am good listener. I am a dreamer.
I am ok being defined by each of these things. “I am a Rheumatoid Arthritis patient” does NOT make my list of things that I want to define me. I want to scratch it off my list as fast as it appeared there. But if I pause the emotion of being defined by a disease, I recognize that it changes how I live and work and play and react and think. So while I don’t want it to define me (or be the first thing people think about when they think about me), I do recognize that it is a part of who I am now.
I was diagnosed with RA when I was 27 years old. I had only been married 3 months when my first symptoms presented. It took 6 months of symptoms and doctors and hospitals and stress to get a diagnosis. My RA, like every other physical ailment I’ve ever had, wasn’t typical. Apparently, there is always a weird one. I’m the weird one. Like many people, I had heard of rheumatoid arthritis before my diagnosis, but all I knew was that it was the “bad” version of arthritis and it made old ladies hands curl up in unattractive shapes. So here’s your condensed education: it’s an autoimmune disease and your body attacks its own joints. It can affect any age of person and unlike what you may think, it hurts all the time, not just when you move. It destroys your body from the inside out. Like many other autoimmune diseases (think Hashimoto’s, Crohn’s, celiac, multiple sclerosis, lupus, etc), it causes extreme fatigue, brain fog, and is often accompanied by more autoimmune issues. And did I mention it hurts? Everything hurts.
I’ve been on a variety of treatments over the last few years, trying to find something that would halt the progression of the disease. The goal is remission, but it hasn’t happened. The medicine I’m currently on helps with the symptoms and it has slowed the progression, but it hasn’t been able to stop it. I still am in a constant state of inflammation. The RA is still active and attacking me. This is better than other medications I have tried though, so for now, it’s the answer.
So what does this have to do with “Steadfast Steps” and why doesn’t this blog have “RA” in the subtitle?
I go back to the idea that while I do not want to be defined by my disease, it affects me in profound ways. It has changed the way I function on a daily basis. It has changed the way I look. It has changed how my house looks. But it has NOT changed me. I am still me. I am still a vessel to be molded and formed throughout my life. I am still as full of joy today as I was as a child. And I want to share that joy with you. I have read so, so many blogs posts, social media posts, and forum posts from people in my same shoes who have lost their joy. The disease has taken over. Divorce happens. Kids can’t remember having a kind parent. Friends are pushed away. And I admit, I think it would be so easy for this to happen. I get snippy when I am hurting. I forget that the people around me do not need to suffer because I am. I feel like hiding in a cave of self-pity. That’s when I remember this verse:
“The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness.” Lamentations 3:22-23 (ESV).
Every day is a new day. Every interaction, every smile, every action, every thought—they are all chances to bask in the steadfast love given freely to us. Mini soapbox time: The first 21 verses of Lamentations 3 are exactly what you expect from a book titled “lamentations.” They are depressing and awful and painful and…. completely relatable. Then, the author writes this sentence and all of a sudden, there is hope. It is such a sobering realization that even in the seemingly darkest of days, joy comes with the morning.
I want to walk with steadfast steps. I want to remember where I’ve been and where I’m going. I want to enjoy the journey there. Every day, I’m moving forward and figuring out how to live in this world. Right now in my life, that is the journey of building a house and then creating a homestead. I don’t know what the future holds after that, but I’m excited for the journey! And yes, RA will be a part of that, but it’s only a small part of me. It’s not what defines me.
In this blog, I will talk about things that I have done to make my life easier. From decluttering my home to buying an electric can opener—these things, both big and small, have made my life better (and not just because I have RA). Currently, we’re building a house. Yes, we’re specifically building a one-level house because of my RA. Yes, we’re specifically building in order to get away from some of the unknown chemicals in older homes. Yes, we’re specifically building with future accessibility in mind. But my writing goal is to talk through the entire decision-making process. I’ll include how I adjusted things to fit better into an immunocompromised life, but I’ll also include how I made it pretty in the process.
When we decided to move from the house we bought when we were first married, we were looking for a change—a fresh start—an opportunity to make our house what we want and need it to be. But the journey to this goal is long and may never end as we continue to change and add new things to our homestead. So, come walk the journey with me. Take these steps next to me and let’s talk! Perhaps you and I can become friends, even if it’s through the keyboard and the screen. I’d love to hear from you.