Socialize

Entries in LA (2)

Monday
Nov122012

2012 LA Alliance for Lupus Research "Walk with Us to Cure Lupus" ~ Lupus Awareness is Fun!

One step at a time; together we walked. On Saturday, November 10th, I walked and lead the "Lupus Awareness is Fun!" team.   The Los Angeles "Walk with Us to Cure Lupus" surpassed goals and raised more than $140,000 for the Alliance for Lupus Research.  Without the sponsors and the Board of Directors, I wouldn't be able to tell you that 100% of every dollar raised is directly funding lupus research--but this is the ALR we are talking about so I can!  That's right, 100% of every dollar raised is supporting lupus research.

One year at a time, until there is a cure for lupus, I will lead a team and support the "Walk with Us to Cure Lupus" event.  This year for the first time my mom and brother joined "Lupus Awareness is Fun!" and I am grateful to them and all the members of my team.  I appreciate my husband Steve and my friend Scott who have been here before and year after year come back to support me and as Scott says for the Walgreen's water.  Thank youtoo to Al and Diane, who joined my team and supported me and my mom by walking and generously supporting Alliance for Lupus Research. 

   The "Lupus Awareness is Fun!" team is more than those who walked but those who gave as well.  I know that there are many causes and charities seeking your support and I am truly grateful that you chose to support mine, the ALR.   With your help we are closer to a cure.  Thank you to Steve's co-workers at GSN, as well as Aaron Paquette, Mickey Langdon, Ingrid Birmingham, Grandma Idella, Heather Grace, Wendy Abrams, Beth Herzhaft and the other friends who donated to our team. 

 

Sharing is caring.  It isn't too late; you can still support me and the team "Lupus Awareness is Fun!" http://walk.lupusresearch.org/site/TR/WalkwithUs/Walk2010JasperRedesign?px=1925494&pg=personal&fr_id=2990 

Enjoy more photos of the event and my team... https://www.facebook.com/#!/media/set/?set=a.4418558774893.174106.1016580826&type=1

(Better late than never - my Day 10 post for WEGO Health's National Health Blog Post Month!)

Thursday
Aug062009

How I became LA Lupus Lady.

Wondering about how I became LA Lupus Lady?
It's a long story but getting diagnosed and living with a chronic illness usually is. I was diagnosed with Lupus at 15 after a long period of not knowing, finally having a disease with a name was a relief. Lupus aka Systemic Lupus Erythematosus or SLE was the name of what was wrecking havoc on my body.

The symptoms were sporadic and strange, I bruised easily and could not sleep through the night. I had night sweats and chills, my joints ached and my skin hurt. that was the just the start of my flare. eventually I was overmedicated by the wrong doctor. Hindsight is 20/20 & I learned the hard way - by suffering the side effects of the medicine I was unable to know what was the Lupus and what was the prescription meant to help. then I found the right doctor! The doctor who would how to talk to me like the young woman I was, one who was full of questions. he answered each one fully and reduced my dosage of meds as safely as he could as quickly as he could.

The first Lupus flare was under control and eventually I was off the medication completely. Living with Lupus is a life knowing more about the science & workings of the immune system than any non-medical professional should. I take each day as it comes. I know what it is like to be too tired to get dressed. I know what it is to be so dehydrated that you need to go to the ER for an IV of fluids. I became a perfect patient. I had an awareness of my body and knew immediately when something was "not right" I credit the disease my Lupus with giving me the gift of heightened awareness. An awareness that has helped me manage to live with Lupus rather than die from it.

years later -and I know I am skipping a lot but this is just getting started.- I became an active member of Lupus LA's Young Professional Group. Through my activities within Lupus LA, I learned about the Lupus Research Institute's Capitol Hill Advocacy Day. I wanted to go lobby members of Congress about funding Lupus Research and educating medical professionals. So I begged my husband to let me use his frequent flyer miles and I booked the trip. Before I headed to Washington though I went to New Jersey to visit my friend and his growing children.

So I travelled all the way to New Jersey to become LA Lupus Lady. My friend's 12 year old son is on YouTube and explained to me in no uncertain terms that I was going to shoot my advocacy day on Capitol Hill and post it online. /but first I needed a name that would capture who I was and what i was going to be on YouTube.

I'm from LA and I have Lupus and I am female, and Lady has a sense of grace to it. LA Lupus Lady was born. I am by no means Steven Spielberg, but I feel that sharing my views of life with Lupus online via YouTube is a powerful tool of representing me as I am, a woman in LA living with Lupus while raising Lupus awareness. www.youtube.com/user/LALupusLady to see my YouTube channel.

More Soon!