Monday, May 10, 2010

SOMEONE YOU KNOW...

may (along with august) has always been my favorite named month of the year. yes, there are other months i love, but the word (or name) MAY... i love the most (again, with august).

and MAY is LUPUS AWARENESS MONTH, and this very day is WORLD LUPUS DAY.

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, every 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, friends, 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.....

it's unpredictable nature keeps me from counting on myself in a way that's just so basic to most, and i can feel it slowly yet aggressively trying to take my confidence and my audacity to truly LIVE in spite of it, away from me. 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:

THAT JOHNSON BOY said...

Princess, haven't spent much of the Mother's Day weekend with my sister who is living with Lupus, I can attest to the unpredictable nature of the disease. Many suffer in silence, since few people acknowledge their illness. I mean, really... can they always be sick.. all the time? The answer is yes... all the time. And I'm sure you can attest that the medicines are more debilitating than the illness.

I want to know more about you non-profit and what I can do to help. Much luv, That Johnson Boy

Mizrepresent said...

Hey lady, i think you know that i have lupus too! And the funny thing i went undiagnosed for years before my symptoms became more pronounced. Lately, i haven't had too many flareups, but that darn sun being out all the time, has caused my body to knot up and hurt. I am one of the lucky ones i haven't had or suffered with any organ failures, or anything too detrimental, so i feel blessed to just be here. Congratulations on your org. Once the site is up, let me know.

Princess Tinybutt said...

@ TJB - hey, hey! so good to hear from you! yes, those of us struggling with LUPUS (i affectionately call us 'LUPIES'), all forms of it, can be sick ALL OF THE TIME. and yes, so many of us suffer in silence - due to either non/misdiagnosis, denial, lack of adequate/appropriate medical care, or awareness. i'm sure there are many other reasons too. one of the many "why's" for my starting the foundation are those very reasons.

@MIZREPRESENT - hey girl! NO!! i didn't know that you are living with LUPUS!!?!?! how did i miss that?!? well you sure do make living with it look good!!! you just added another layer to my admiration of you!

yes, i will keep you both posted on the progress with foundation, and i thank you so much for your interest. be well my friends :)