Once there was a young girl, who thought life was fun and easy; she was a part of student council, drill team and had an after-school job at the mall -- then she was diagnosed with Lupus. Lupus likes to take over when it arrives, staking claim on and within the body of the patient. Lupus enjoys control and wields its power like a gladiator, who cuts your life apart. Lupus met its match when it tried to slash and slaughter the soul of one Lupus Warrior. The Lupus Warrior knew the secret; llike Superman and his kryptonite, Lupus has a weakness. Lupus can not thrive when the Warrior chooses living a life with purpose and a positive attitude -- the power of the Warrior and her tribe then wield the power from Lupus.
Entries in HAWMC (34)
My first time... Once I realized that WEGO Health did not want a personalized detailed description of my first "encounter", I started to think about what first time would I share for the Health Activist Writer's Month Challenge. I thought it should have something to do with Lupus. After thinking about it, I decided to share my "first time" as an advocate for Lupus Research in Washington, D.C. The first time I went to Capitol Hill Advocacy Day changed my life.
After living with Lupus for 25 years, I was finally using my voice to speak up for patients and families whose lives are affected by Lupus every day. The first meeting of the day was with the Health Legislative Assistant for California Senator Barbara Boxer. I was so excited; as I shot my introduction to the YouTube video, I was practically jumping up and down. I experienced the power and joy of what it was to have someone listen. As an American, I was proud. As I told my story to staffers and a few members of Congress, I felt that I truly was making a difference.
I learned that using my voice and telling my story was empowering and helpful to myself and others. When I returned back to California after my trip to Capitol Hill, I did not stop advocating. I continue to share my story and support the Lupus community. I discovered that my story was not unique. There are too many patients suffering with Lupus. My journey to Washington was the first step on my path. The path became a road -- the road to wellness and thriving with Lupus. My first time was not my last. I hope that one day you feel the power that comes from speaking about issues that concern you with your "representatives"; you don't even have to travel to Capitol Hill to do so. Every member of Congress has a local district office. Call them; ask to speak to the Health Legislative Aide (Assistant). Be nice, but be firm and speak your mind. You have a vote and your voice matters.
from left: Dory Neilinger, me (Amanda; aka "LA Lupus Lady"), California Senator Barbara Boxer and Linda David.
I have been calling the local and D.C. offices of my Senators and Congresswoman once a week for the past month because there is a new Caucus on the Hill and I want my representatives to know how the voters feel. I want my Senators Barbara Boxer http://boxer.senate.gov/ and Dianne Feinstein http://www.feinstein.senate.gov/public/ ,as well as Congresswoman Karen Bass http://karenbass.house.gov/ ,to join and support the Congressional Lupus Caucus https://www.facebook.com/CongressionalLupusCaucus. My advocacy for Lupus and Lupus Research will never end...until there is a cure.
Here is the YouTube video I made of my first Capitol Hill Advocacy Day. http://youtu.be/IzGc5fInDHA
There are days when the challenges of Lupus outnumber any small victories that exist. The challenges of Lupus are many, too many to list individually. Instead, here is a list of five areas Lupus has challenged me.
Lupus challenges me mentally.
Lupus challenges me physically.
Lupus challenges me emotionally.
Lupus challenges me spiritually.
Lupus challenges me socially.
I celebrate Lupus victories, even the small ones, as if they were World Championships. It is a Gold Medal day when I can get up to brush my teeth and hair by myself. There are some days, where I need the assistance of my husband to help me up, those mornings it takes a lot of energy to find the strength to continue on my journey. I am finding strength from our community. I am encouraged when I receive support from my online "friends", many of whom I have the pleasure of meeting and strengthening our bonds of sisterhood even more. Tiffany, Christine, Kelly, Jules, Candy, Shanelle and of course since I started the list of Lupus friends, -more than 5 - who have become much more like sisters to me, I know that I am forgetting some. Know that I love my community. (Do I edit the list, what to do?) forget it. I will continue on and on. Like the victories of Lupus, the list of Lupus sister friends continues to grow one at a time.
I love the power of Twitter and the way in which the real-time web connects and empowers the online health community. Though every hour has 60 minutes, the fastest hours of the day are the ones when there is a "chat" going on. Whether it is the @wegohealth #HAchat http://www.wegohealth.com/ or the #FriendsofRicki conversation that occurs every Friday morning or the Google Hang Out that happens on Friday afternoon after the "Chronic Chronicles" podcast @ChroniclePod https://www.facebook.com/ChronicChronicles. I enjoy the interaction with people from different backgrounds, because we are not that different we share something in common. Our interest and presence in the conversation.
Yesterday, I joined the #smmanners chat for the first time, the topic was Passion. I truly enjoyed stretching beyond my comfort zone and found myself being quoted and retweeted multiple times. (Who would have thought that a sentence containing the words passion and multiple times was not referring to a wild sex life?) Today, I participated in the #s4pm chat. The topic was about Doctor Patient Communication, I happily shared my opinions and raised my voice to share them. Though I am struggling through the last week of #HAWMC I don't struggle during a live chat. Why is that? If only I knew.
Do you chat? What are some of your favorite chats?
This post is all about Rex Ryan. Rex Ryan is our resuce cat; my husband and I named him in honor of New York Jets Head Coach Rex Ryan. We love rooting for the Jets and supporting Woody Johnson's "other team", the Alliance for Lupus Research.
You may know that my alter-ego is "LA Lupus Lady", a caped crusader who shares that "Lupus Awareness is Fun"! She is the "made-up superhero" I created who dresses in purple and has a mascot--well ,not a mascot, but a "sidecat". (Why a sidecat? Because a sidekick hurts! Her Lupus causes her to bruise easily...) Sometimes dressing in purple boots and tights while wearing a cape to shed light on Lupus is not enough! That's when the cool cat plays his part assisting "LA Lupus Lady" in her quest to support the Alliance for Lupus Research. Whether he purrs his approval as "LA Lupus Lady" when she dons her costume en route to the LA "Walk with Us to Cure Lupus" event , or keeps vigil by my bed when I rest my achy joints, Rex Ryan is a reliable, dedicated and trusty companion.
Rex Ryan roams the streets outside and surveys the inside of the house with diligence and pride. He knows his main job is to defend the house against any rodents and bugs. Rex also intuitively knows when I am not feeling well; he then becomes my caregiver and cuddly cat. Rex Ryan takes after his namesake in that he is tough, strong and protective of his team. My mascot / sidecat is real. He truly saves me from myself, especially when the Lupus pain breaks through and I am at my worst. Petting Rex calms me. Combing and brushing Rex provides me joy, knowing I am helping him look and feel his best. When I can not do for me, somehow I find a way to do for him. The love I feel for Rex is much more than that of a fur baby and his mom. I truly feel even though we "rescued" him from the West LA Animal Shelter that he has rescued me/us.
Rex Ryan is a Tuxedo cat!
Don't buy a pet, rescue one...