I Have Lupus. Lupus Doesn't Have Me.
Last updated: June 2023
In 1996 my freshman year of college I was given the word Lupus to title all the rashes aches pains hair loss fatigue. I had no place to put this word. I had my life planned out and Lupus did not fit into the equation.
Refusing to slow down
So I did me. I went to my appointments and took all the meds but wanted more life. All the while the doctors were begging me to slow down. I kept moving. I popped pills and continued an amazing 15-year career. But at 36, the pill-popping stopped working. I lost a career, self-identity, purpose, worth, duty...or so I thought. I was angry. I hated my life, body, doctors, and even my family. Well, after intense therapy and self-studying I found my purpose I found ME! See when I was doing life my way I had no time for my Heavenly Father. But when I lost everything I turned to Him with open arms and he greeted me with his arms opened. He even gave me a short time of remission and the human me took all credit. Totally forgot about him. I figured out I suck at doing life without him. Now I walk with him. All glory to him.
Learning to cope
I am able to keep my independence for now. I’m holding on with a firm grip. I know changes are coming even more, but the difference is, the anger the lashing out is NOT coming back because I know He has got me. I needed lupus to open my eyes. Being CEO at 30 was my goal not His goal for me. I have more substance now than I have ever had. My house is not spotless, dishes are in the sink, clothes are not washed, and my tub could use a cleaning but I do what I can when I can. I have retired the hare and have become the tortoise, and I am ok with that.
Knowing I am not alone
After over 52 surgeries 41 current meds 15 diagnoses and 18 specialists I am alive. It is not what I pictured but I’m alive. Every day is a challenge. But I am not alone to face it. My Heavenly Father shows up every single time. My brittle bones, my 3D printed ankle, sick kidney, 2 loss of toes, dry eyes, dry everything, fatigue and deformed hands. While all of my joints ache, every inch of my skin is on fire and hurts, even my morning stiffness still is not bigger than MY Heavenly Father. He is here with me on this journey. I give life my all and I receive so much kindness.
Living with chronic pain
A visitor comes and sweeps my floor before the dust bunnies carry me and my dog Kirby away. Another visitor will offer to take my trash to the dumpster. Someone else will come into my path and helps with something else. He listens. He cares. He is real. He has risen. He loves us. No room or energy for anger. With chronic pain, you lose the ability to be grumpy when you do not feel good. Because with lupus you never feel good. People with acute pain get the privilege to be grumpy because after the pain leaves they return to their normal selves. Chronic patients have to decide to replace the normalcy of being grumpy so that the people around them WANT to be around them. That is when lashing out stops.
Celebrating every victory
I’m 44 now. My day might just be to put dishes out of the dishwasher and then my day is complete. All my spoons are gone. But I’m thankful I could put those dishes away. Celebrate everything and keep focusing on what you can do. It helps. Does not change reality but helps cope with the reality of living with lupus.
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