Imagine a life where each day holds an unknown. Imagine waking up and not knowing if this will be a sick day or a well day. Imagine a life where things can change at a moment’s notice and this is at the forefront not the back of your mind. What you are imagining is my life with lupus. In America, 1 in 185 people have the disease and they don’t have to imagine this; it’s their everyday reality.
Lupus doesn’t mean your life is over, it means that it is forever altered. Nothing will ever be the same. You make adjustments and find a new sense of normalcy. That new normal will be a road map you follow for the rest of your life. Lupus can go into remission, but at any moment it can rear its ugly head. There is no cure.
A person with lupus has symptoms that can range from uncomfortable to life threatening. One of the hardest things we experience is making people, even the medical establishment, understand us. We are not crazy, it’s not in our imaginations, and we aren’t seeking unnecessary pain medications. For the last four years, I have had issues with my heart that I wanted checked out. The issues have finally become blatantly obvious, even to the untrained eye and I am finally getting the medical attention needed for years. Lupus patients are not hypochondriacs; we are actually very in tune with our bodies and can recognize the slightest change. We have to be because no one else will.
I don’t want sympathy; I want a cure. My mission is to make people aware that there are 1.5 million of us in America. Understanding is helpful, but I would prefer you make a donation to one of the two major Lupus Charities in the United States, The Lupus Foundation of America and Alliance for Lupus Research. If you can’t give, please educate yourself and pass that information to someone else.
Now you can say you know someone with lupus; if you read my blog you know me.
Mission Accomplished: Sharing the Lupus Life, Spreading Lupus Awareness, and Validating Me
thank you Lola.. your the best.. perfect.. thanks being our voices.. to be heard.. and understanding!
Chris Oden
Posted by: Chris Oden | 03/22/2012 at 10:45 AM