Wednesday, May 4, 2011

please know, that some one you know....

whew! and yes, again, it's been a while! but i have been busy and in a good way. my health you ask? well, as with everything - there have been ups and downs, but overall - I"M STILL HERE!

MAY IS LUPUS AWARENESS MONTH



LUPUS is an awful disease that has no cure and, in its worst form, is just as devastating as cancer. i know because i have both, along with a few other critical and life threatening auto-immune diseases. and this may sound crazy, especially because we think of cancer as this alpha/omega of diseases - that there's nothing worse. but i find that my LUPUS (and the LUPUS of many others i know in this fight), is worse than my cancer. although there's no definitive proof of this, we feel that the LUPUS opened the door to my other diseases.

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 (cancer, pulmonary fibrosis, vasculitis, MS, mixed connective tissue disease), but the LUPUS is all encompassing, ever reaching. 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 rocking 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 the seizures..... they rob me of so much too.

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, 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! 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, i have started a charitable non profit specifically for women at risk, the newly diagnosed, and warriors living with LUPUS here in my area = THE BUTTERFLY PROJECT for LUPUS. 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. we're working on our website now and it will be up soon (www.thebutterflyprojectfoundation.org), as well as the rest of the details, and i will keep you posted so stay tuned!

this is 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

be well :)

3 comments:

Lovebabz said...

HUGS! I am glad you are raising the awareness! Will put something on the blog too!

CapCity said...

Hey Beautiful! Came by 2 check in on U. As always I'm GLAD U R HERE! It's difficult 4 me to believe that your SPIRIT is suffering with such an AWFUL condition & because of that I HATE IT, TOO! Sending HUGz 2 U!!

Mizrepresent said...

Hang in there sister warrior! I know you will! Kudos to you for this new organization. I will support you totally!