Pain really and truly sucks.
If that offends you or makes you feel uncomfortable I’m sorry. It doesn’t matter whether it’s physical pain or emotional pain. Either one can become overwhelming and drown out everything else around you. I know because I’ve had way too much of both in my life.
However, in life, we seldom get to do what we really want, and unfortunately, you don’t get a day off from Lupus. So, when faced with the potential of debilitating pain—pain that would consume me if I let it. In those moments, what I actually do is bare down, grit my teeth, and become a first class actress who is an expert at manipulating her audience into seeing only what she wants them to see.
You may not realize this unless you’ve lived with chronic pain, but pain, all to often, makes other people uncomfortable. So, I have learned that the way to handle it is to put on a plastic smile and just endure. My closest friends can usually see through my facade, but I’m pretty good at fooling the rest of the world.
I made the decision years ago I wasn’t going to let Lupus stop me from living my life. Sometimes I pay for that decision when it causes my lupus to flare, but I don’t regret the decision.
I don’t know what it is you may be facing today. Maybe it's chronic pain like me, or maybe it’s emotional pain from personal tragedy or trauma, or maybe it’s something else. I want to encourage you to keep going, keep holding on, keep taking the next step. I don’t type those words lightly. I know from personal experience, that sometimes, it might seem easier to surrender—to give in. But on my most difficult days I’ve had two things that have given me strength: the love of family and friends and the hope of a great God.
In Joshua 1:9 it says, “Have I not commanded you? Be strong and courageous! Do not tremble or be dismayed, for the LORD your God is with you wherever you go.” NASB
With love, strength, and God given courage, you and I can continue to embrace life even on the really hard days. Don’t give up my dear friend.
From a FaceBook post dated February 7, 2019
One of the tell tale signs/symptoms of lupus is a facial rash. Many refer to it as a butterfly 🦋 rash because it fans out and over both cheeks, bridging the nose (the medical name for it is a malar rash). Interesting Fact: this is why the butterfly is used to represent lupus.
When I first began having symptoms, prior to diagnosis, it was one of the first things my mom noticed. The rash comes and goes. However, its appearance has always been a signal for me that my lupus was/is in an active stage. To most, when I’m sporting the rash, my cheeks just look extra rosy. Some think I’m just becoming flush from over exerting myself. When the rash is at its worse, not only are my cheeks extremely flush, but they also get super hot—sometimes causing me to break out in a sweat. Although uncomfortable, these extreme instances of my rash usually only last a couple of hours at most.
If you read my post last week about my doctor’s appointment, I mentioned one of the first indicators that this most recent flare was coming on was that my cheeks got extremely hot. I’ve been surprised as I walk through this current flare because my butterfly rash hasn’t abated like I’m used to it doing. Even as I write this (a week into this most recent flare) my cheeks are burning up. They have felt this way so long that my skin has started to sting (almost like a sunburn). It’s definitely not the worst thing I could be dealing with, but it most assuredly gets old.
So you might be wondering why I took all the time to explain this. I’ve come to realize that many people don’t know a lot about lupus, other than it’s name and that people with the disease generally don’t feel well. I’ve also come to realize the only way to help people learn about this disease is that those of us who live with it every day have to be willing and vulnerable enough to share glimpses of our stories—snippets of what our lives are like living with this day in and day out.
From a FaceBook post dated February 2, 2019
Living with Lupus is not my most favorite thing in the world. It’s exhausting, it’s unpredictable, and, oh yeah, it’s painful. But I’m not unique. Many people deal with chronic conditions day in and day out. How can you help me or another friend with a chronic illness? Here’s five thoughts.
Don't make assumptions...
I know there are other things that could be added to the list. But these were just some quick thoughts I had this morning while I’m laying in bed battling with my Lupus. Btw, it’s a battle I’m determined to win.