The Fight Goes On...

Well, we've come to the end of LUPUS AWARENESS MONTH, and I wanted to give you some insight into my journey, and fight, with LUPUS. LUPUS is an awful disease that has no cure and, in its worst form, is just as devastating as cancer, and this may sound crazy, especially because we think of cancer as this alpha/omega of diseases, but i spend a lot of time with cancer patients because my LUPUS is so severe that I'm treated as though I have cancer, and I find that my LUPUS (and the LUPUS of many others I know in this fight), is just as bad, although there's no definitive proof of this and not to deminish the seriousness of cancer.

My LUPUS causes so many problems for me, way more than the other diseases. it affects my heart, my lungs, my muscles, my brain. i have other issues with these same organs (pulmonary fibrosis, vasculitis, MS, mixed connective tissue disease), but the LUPUS is all encompassing, ever reaching. It's a thieving leech that has taken so much from me. It keeps me from driving, working 'officially', making and keeping engagements - both personal and professional, from crafting and cooking, from doing things with my ladybug, my friends, my family, and myself. It keeps me from finding my words and understanding those spoken to me, from keeping up with and enjoying my favorite tv shows and books. It keeps me from strutting around in my favorite pair of 3 inch heels and hanging out in the sun for as long as I want. I never know how I'm going to feel, or be every day that I wake up, and from hour to hour. I'm in constant, constant pain... pain that you can never get use to. On a scale of 1-10, with 10 being the worst ever, 6 is a good and regular day for me, and then the seizures.....

It's unpredictable nature keeps me from counting on myself in a way that's just so basic to most people, and I can feel it slowly yet aggressively trying to take away from me my confidence and my audacity to truly LIVE in spite of it. And I hate it. I hate what it's done to me, my body, to those who love me, to what it continually tries to do to my life.

This is a horrible and insidious disease that has no cure and can kill. It strikes (mostly) women from all backgrounds, races, and walks of life in the prime of their lives - as they're just finishing school, staring a business, a family, a new relationship, an exciting career or adventure! LUPUS is a treacherous and thieving disease that steals the best parts of our lives. This disease turns lives upside down and havoc descends, yet there's little to nothing in the form of support, resources, and major awareness out there for those suffering from and living with LUPUS. Especially in the medical community - so many go mis or undiagnosed.

Because of this, and my own frustration with the lack of services and programs for those of us struggling to truly live with LUPUS,  I've started THE BUTTERFLY PROJECT FOUNDATION for LUPUS (TBP), and my goal is for this to become a national organization. We are currently registered as an exempt non profit corporation here in California, and are awaiting our federal exemption status at a 501(c)3.

May was LUPUS AWARENESS MONTH, and someone you know has lupus. please donate and find out more about how you can help those of us with LUPUS by going to www.lupus.org 

 I'll share more of my personal journey with LUPUS in posts to come, so please stay tuned!


Angela :)