This past week has been an awesome week of contemplation. I have realized on thing, I am super thankful for those in my life (as I’m sure you are too) who understand! It is so so so hard to live this life, harder when people don’t get it. People who don’t “see” your pain, don’t “see” your fatigue, and don’t let themselves sit in your shoes and try to get it.
I spoke to an amazing friend this week. She has been battling getting her infusion for the past week!!! And still to date nothing! And she mentioned talking to the insurance person, and explaining our world. The person on the line didn’t even have a clue! Didn’t realize the life and pain. I was touched that my friend reached out and shared her journey with a stranger on the phone. That is brave! She reminded me that we have to share our story.
When we feel like no one cares, it is rough. We want to give up, clam up, and just dig a hole. No we don’t have an awareness month, no we aren’t as well known as other diseases like cancer, diabetes, epilepsy, or others. Those are tough diseases but our life is too! We need the same understanding too!
So my nugget for the week, share! Share your journey and share your story. Only by our sharing will people begin to have a clue!
My name is Joanna, since 2010 I’ve battled Rheumatoid Arthritis, Lupus, fibromyalgia, sjogrens, and Chronic Fatigue. I’ve been on Plaquenil, MtX, Arava, Imuran, Enbrel, and now Enbrel/MtX. I take chemo once a week and a shot once a week. Systemic issues as a result of my diseases include asthma, diabetes type 2, heart murmur, elevated liver enzymes, gum issues, loss of vision, dry eye syndrome, and hearing sensitivity. Most days, I feel as if I’ve been hit by a car, run over, dropped off a cliff, run a triathlon, and that every joint in my body is broken. I get little sleep because I hurt so bad. Despite the pain, fatigue, and sleep deprivation….I have decided to get up each day and live my life. I have earned a doctorate, work full time, am a wife, and a home business owner. This is my story that I’m sharing so you can try to understand my life, my pain, and my diseases. I have these horrible, degenerative, painful, systemic diseases, BUT they don’t define me, I define them!