Wednesday, May 10, 2017

World Lupus Day


I have not been vocal about my most recent struggles. That is because I do not want sympathy. Apparently I have had Lupus for quite some time, but only in a perfect storm of conditions, has it reared its ugly head and all the symptoms occuring at once in a giant flare, have made it possible for a diagnosis. I have been diagnosed with Acute Cutaneous Lupus Erythematosus with Systemic Lupus Erythematosus. Go big or go home, right?

Translation=I am super photosensitive to sunlight, tanning beds and fluroescent lights with UV rays. So I now have to wear long sleeves in the sun, big floppy hats and lots of sunscreen. No more retail management under fluroescent lights all day. No more spending all summer at the beach uncovered. 

My body's immune system attacks its own tissues and as the disease progresses it can attack the organs. This affects all of my joints, as the tissue around them become severly inflammed. It is difficult to walk at times, and some days I have to ice my hands and wrists for a few hours before bed for them to work the next day. Too much sun or expose to UV light? I had hives continually for almost 9 months. Fatigue is a big part of my disease. I now have a reason to take naps! Disease control!! I now have to be careful to not overschedule myself, as it can take several days to recover. Constant headaches are also part of SLE. There are many other symptoms, and many other severe complications. I have had to learn to take better care of myself, to listen to my body , and to slow down. I am still coming to terms with the fact that I have a disease that will never go away. I am finding my new normal. It is a daunting process.


I have been silent long enough. I don't look like there is anything wrong with me. That is because there is not anything 'wrong' with me. I have a disease, I am not my disease! I refuse to let it define me. 

I am posting this because today is World Lupus Day. May is Lupus Awareness Month! If you are living with any form of lupus, please feel free to leave a comment with your story or struggles! You are not alone! I . I understand not wanting to talk about this awful disease. But I cannot wait to hear from others that are dealing with this life altering auto-immune disease, like me, that do want to talk about it and spread awareness! 

I know I am not alone! Can't wait to hear from you! 💜💜💜

Today I am taking the first annual Gingerssnaps Ride for Lupus Awareness!
Because I can, while I can. 

#purplewarrior #lupus #lupusawareness #lupusawarenessmonth #SLE #ACLE #worldlupusday #boatloadofsunscreen