Wednesday, May 1, 2013


may is one of my favorite months. i used to wish my birthday was during this month. it signals spring, rebirth, the end of school, beginning of summer. i've always loved may. i love it now for a different reason....
   MAY is

LUPUS is an awful disease that has no cure and, in its worst form, is just as devastating as other horrific and scary things like 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, my joints, bones, and muscles.  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. it keeps me from crafting, gardening and cooking, from doing things with my ladybug, friends, family, and doing for myself. it keeps me bound to a walker or a cane or a wheelchair. it makes me struggle to find my words and understand ones spoken to me, from keeping up with and enjoying my favorite tv shows magazines and books. it keeps me from rockin' 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 single 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 regular day for me. and then there's 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 that will kill if given the chance. 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. 

so yes, LUPUS is NO JOKE. and someone you know is affected in some way - either directly or indirectly by this disease. please support them however you can. this fight is hard, and the battle is still raging on. stay tuned during the month for more info about the disease, it's symptoms, and when to go to the doctor. 

be well♥


LadyLee said...

I feel you, hon. I have it, too. And it upsets me, too. It's difficult to explain to people.

But I am able to work and drive, etc. And that's all I really want, to be able to stay steady with that, and take care of me.

But I feel you. And I'm praying for you...

Princess Tinybutt said...

thanks so much ladylee! i truly enjoy your adventures and stories about your car, your job, and the writing club. keep it up!

Anonymous said...

i have lupus too, looks like as bad as yours. i'm glad you're doing well. i know that it's not easy. stay strong!


Princess Tinybutt said...

thnks 'anon'. you stay strong too, and please come back.

be well :)