They call Lupus the “invisible illness,” but to me it’s definitely not invisible. It’s a constant fight to keep normalcy in my family’s life, my husband, kids and I know this illness has stolen more than we ever imagined. I haven’t been able to drive since August. My freedom and independence has been taken, with the risk of fainting because of constant arrhythmias. I have nuerocardiogentic syncopede, and Postural orthostatic tachardia syndrome. My heart rate is constantly above 100 and it takes all of my energy to keep up. I sweat constantly as if I have run a marathon even though my body is cold to the touch. I have struggled with constant migraines for the last week. My body hurts everywhere and it is more than just an ache, it’s pain that keeps me from sleeping through the night and no amount of pain medication can take it away. Although my diagnosis is SLE Lupus, I also have mixed connective tissue disorder. Mixed connective tissue disorder can manifest itself in many different autoimmune diseases. My entire body is under attack from the inside out. To look at me you would never guess the battle that I fight every day. I put my happy face on and say that I am ok even though I am screaming on the inside, wishing I could feel better for just one moment, just like so many of us do. I take the tiny moments when I get a small amount of energy and try to fit in as much as I can in those moments only to ultimately pay for days, for doing too much.
Although this is the fight of my life, I still hold on to hope for a cure one day for autoimmune diseases in general. I still hope that God will heal me physically. Even if I don’t get my healing right now, I know that one day there is a place where I will be where the pain, the struggles, the fight for life will be gone. There is a place of peace, hope, and happiness waiting.