tag:blogger.com,1999:blog-35465453490796056352024-03-13T20:15:08.609-07:00LA Lupus LadyAmanda ~ LA Lupus Ladyhttp://www.blogger.com/profile/06558535701385293731noreply@blogger.comBlogger29125tag:blogger.com,1999:blog-3546545349079605635.post-87048174495155811782011-06-04T06:35:00.000-07:002011-06-04T06:35:17.905-07:00#140Conf Panelist, Amanda Greene – @LALupusLady On… Sharing Passions and Hugs at the #140conf<a href="http://140conf.com/140conf-panelist-amanda-greene-lalupuslady-on-sharing-passions-and-hugs-at-the-140conf">#140Conf Panelist, Amanda Greene – @LALupusLady On… Sharing Passions and Hugs at the #140conf</a>Amanda ~ LA Lupus Ladyhttp://www.blogger.com/profile/06558535701385293731noreply@blogger.com0tag:blogger.com,1999:blog-3546545349079605635.post-28016575518386900702011-03-09T14:42:00.000-08:002011-03-09T14:42:57.879-08:00Press Announcements FDA approves Benlysta to treat lupusHere is the official news release.... <a href="http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm246489.htm?sms_ss=blogger&at_xt=4d78021e40ba682b%2C0">Press Announcements FDA approves Benlysta to treat lupus</a><div>the long wait is over the FDA has approved a new drug for Lupus. Welcome Benlysta!</div>Amanda ~ LA Lupus Ladyhttp://www.blogger.com/profile/06558535701385293731noreply@blogger.com0tag:blogger.com,1999:blog-3546545349079605635.post-87962400123454361402011-03-05T16:20:00.000-08:002011-03-05T16:31:12.715-08:00Alliance for Lupus Research Mobile Giving!<span style="color: black; font-family: Arial, sans-serif; font-size: 10pt;">There are a lot of great activities and Lupus awareness projects coming from the Alliance for Lupus Research. Tomorrow is the first day when the mobile giving campaign will be up and running for the ALR, I can't wait to tell you about the great news - especially if you live in the Boca Raton or Chicago areas.</span><br />
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<span class="Apple-style-span" style="font-family: Arial, sans-serif; font-size: 13px;">Sunday March 6, 2011 I am excited to share that the Alliance for Lupus Research mobile giving campaign will take place during the Boca Raton Walk.</span><span class="Apple-style-span" style="font-family: Arial, sans-serif; font-size: 13px;"> </span><span class="Apple-style-span" style="font-family: Arial, sans-serif; font-size: 13px;"><strong><span style="font-family: Arial, sans-serif;">Text</span></strong></span><span class="Apple-style-span" style="font-family: Arial, sans-serif; font-size: 13px;"><span class="apple-converted-space"> </span></span><span class="Apple-style-span" style="font-family: Arial, sans-serif; font-size: 13px;">the word "</span><span class="Apple-style-span" style="font-family: Arial, sans-serif; font-size: 13px;"><strong><span style="font-family: Arial, sans-serif;">WALK</span></strong></span><span class="Apple-style-span" style="font-family: Arial, sans-serif; font-size: 13px;">" to</span><span class="Apple-style-span" style="font-family: Arial, sans-serif; font-size: 13px;"><span class="apple-converted-space"> </span></span><span class="Apple-style-span" style="font-family: Arial, sans-serif; font-size: 13px;"><strong><span style="font-family: Arial, sans-serif;">85944</span></strong></span><span class="Apple-style-span" style="font-family: Arial, sans-serif; font-size: 13px;"><span class="apple-converted-space"> </span></span><span class="Apple-style-span" style="font-family: Arial, sans-serif; font-size: 13px;">to make a</span><span class="Apple-style-span" style="font-family: Arial, sans-serif; font-size: 13px;"><span class="apple-converted-space"> </span></span><span class="Apple-style-span" style="font-family: Arial, sans-serif; font-size: 13px;"><strong><span style="font-family: Arial, sans-serif;">$10 donation</span></strong></span><span class="Apple-style-span" style="font-family: Arial, sans-serif; font-size: 13px;">. </span><span class="Apple-style-span" style="font-family: Arial, sans-serif; font-size: 13px;"><span class="apple-converted-space"> </span></span><span class="Apple-style-span" style="font-family: Arial, sans-serif; font-size: 13px;"><strong><span style="font-family: Arial, sans-serif;">Forward this information to all your friends so that they can help too.</span></strong></span><br />
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<span style="color: black; font-family: Arial, sans-serif; font-size: 10pt;">Can’t make it to the Walk? Any text donation made between<span class="apple-converted-space"> </span><strong><span style="font-family: Arial, sans-serif;">Sunday, March 6, 2011 and Sunday March 13, 2011</span></strong>, will be credited towards the<span class="apple-converted-space"> </span><strong><span style="font-family: Arial, sans-serif;">2011 Boca Raton Walk</span></strong>. It’s quick, it’s easy, and it’s fun. Help the Alliance for Lupus Research lead the way to find a cure for lupus!<o:p></o:p></span><br />
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This Sunday (March 6, 2011) is the Alliance for Lupus Research Chicago Wolves’ <strong><span style="font-family: Arial, sans-serif;">Lupus Awareness Hockey Day</span></strong> against the Manitoba Moose at the Allstate Arena in Rosemont. The game starts at 3:00 p.m. with doors opening at 2:00 p.m. Before the game, be sure to stop by the ALR table in the concourse and enter our raffle to win an<span class="apple-converted-space"> </span><strong><span style="font-family: Arial, sans-serif;">Anthony Stewart game worn jersey</span></strong>.<br />
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<strong><span style="color: black; font-family: Arial, sans-serif;">For every ticket purchased, $3.00 will be donated to the Alliance for Lupus Research.</span></strong><br />
<strong><span style="color: black; font-family: Arial, sans-serif;">In the Chicago area but</span></strong><span style="color: black; font-family: Arial, sans-serif;"> you can't make it to the game, be sure to watch it on WPWR Channel 50. 11 year old Chicago Walk family volunteer, Gus Kalivas, will be dropping the puck at the beginning of the game!</span><span style="color: black; font-family: Arial, sans-serif; font-size: 10pt;"><o:p></o:p></span><br />
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<span class="Apple-style-span" style="font-family: Arial, sans-serif;">The Alliance for Lupus Research will also be holding their mobile giving campaign during the game on March 6, 2011 <b>T</b></span><span class="Apple-style-span" style="font-family: Arial, sans-serif;"><strong><span style="font-family: Arial, sans-serif;">ext</span></strong></span><span class="Apple-style-span" style="font-family: Arial, sans-serif;"><span class="apple-converted-space"> </span></span><span class="Apple-style-span" style="font-family: Arial, sans-serif;">the word "</span><span class="Apple-style-span" style="font-family: Arial, sans-serif;"><strong><span style="font-family: Arial, sans-serif;">Lupus</span></strong></span><span class="Apple-style-span" style="font-family: Arial, sans-serif;">" to</span><span class="Apple-style-span" style="font-family: Arial, sans-serif;"><span class="apple-converted-space"> </span></span><span class="Apple-style-span" style="font-family: Arial, sans-serif;"><strong><span style="font-family: Arial, sans-serif;">85944</span></strong></span><span class="Apple-style-span" style="font-family: Arial, sans-serif;"><span class="apple-converted-space"> </span></span><span class="Apple-style-span" style="font-family: Arial, sans-serif;">to make a</span><span class="Apple-style-span" style="font-family: Arial, sans-serif;"><span class="apple-converted-space"> </span></span><span class="Apple-style-span" style="font-family: Arial, sans-serif;"><strong><span style="font-family: Arial, sans-serif;">$10 donation</span></strong></span><span class="Apple-style-span" style="font-family: Arial, sans-serif;"><span class="apple-converted-space"> </span></span><span class="Apple-style-span" style="font-family: Arial, sans-serif;">or text "</span><span class="Apple-style-span" style="font-family: Arial, sans-serif;"><strong><span style="font-family: Arial, sans-serif;">ALR</span></strong></span><span class="Apple-style-span" style="font-family: Arial, sans-serif;">" to</span><span class="Apple-style-span" style="font-family: Arial, sans-serif;"><span class="apple-converted-space"><b> </b></span></span><span class="Apple-style-span" style="font-family: Arial, sans-serif;"><strong><span style="font-family: Arial, sans-serif;">85944</span></strong></span><span class="Apple-style-span" style="font-family: Arial, sans-serif;"><span class="apple-converted-space"> </span></span><span class="Apple-style-span" style="font-family: Arial, sans-serif;">to make a</span><span class="Apple-style-span" style="font-family: Arial, sans-serif;"><span class="apple-converted-space"> </span></span><span class="Apple-style-span" style="font-family: Arial, sans-serif;"><strong><span style="font-family: Arial, sans-serif;">$5 donation</span></strong></span><span class="Apple-style-span" style="font-family: Arial, sans-serif;">. Any donations that are texted on March 6, 2011 to the ALR will be credited towards the</span><span class="Apple-style-span" style="font-family: Arial, sans-serif;"><span class="apple-converted-space"> </span></span><span class="Apple-style-span" style="font-family: Arial, sans-serif;"><strong><span style="font-family: Arial, sans-serif;">2011 Chicago Walk.</span></strong></span><span class="Apple-style-span" style="font-family: Arial, sans-serif;"> </span><span class="Apple-style-span" style="font-family: Arial, sans-serif;"> </span><span class="Apple-style-span" style="font-family: Arial, sans-serif;">It’s quick, it’s easy, it's fun. Help the Alliance for Lupus Research lead the way to find a cure for lupus! </span><br />
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<span class="Apple-style-span" style="font-family: Arial, sans-serif;"><span class="Apple-style-span" style="font-family: 'Times New Roman';"><em><span style="color: black; font-family: Arial, sans-serif; font-size: 10pt;">A one-time donation of $10 will be billed to your mobile phone bill. Messaging & data rates may apply. Donations are collected for the Alliance for Lupus Research by</span></em></span><span class="Apple-style-span" style="font-family: 'Times New Roman';"><span class="apple-converted-space"><i><span style="color: black; font-family: Arial, sans-serif; font-size: 10pt;"> </span></i></span></span><span class="Apple-style-span" style="font-family: 'Times New Roman';"><em><span style="color: black; font-family: Arial, sans-serif; font-size: 10pt;"><a href="http://mobilecause.com/" target="_blank"><span style="color: #0000cc;">mobilecause.com</span></a>. Reply STOP to 85944 to stop.</span></em></span><span class="Apple-style-span" style="font-family: 'Times New Roman';"><span class="apple-converted-space"><i><span style="color: black; font-family: Arial, sans-serif; font-size: 10pt;"> </span></i></span></span><span class="Apple-style-span" style="font-family: 'Times New Roman';"><em><b><span style="color: black; font-family: Arial, sans-serif; font-size: 10pt;">Reply HELP to 85944 for help. </span></b></em></span><span class="Apple-style-span" style="font-family: 'Times New Roman';"><span class="apple-converted-space"><b><i><span style="color: black; font-family: Arial, sans-serif; font-size: 10pt;"> </span></i></b></span></span><span class="Apple-style-span" style="font-family: 'Times New Roman';"><em><span style="color: black; font-family: Arial, sans-serif; font-size: 10pt;">For terms, see</span></em></span><span class="Apple-style-span" style="font-family: 'Times New Roman';"><span class="apple-converted-space"><i><span style="color: black; font-family: Arial, sans-serif; font-size: 10pt;"> </span></i></span></span><span class="Apple-style-span" style="font-family: 'Times New Roman';"><span style="color: black; font-family: Arial, sans-serif; font-size: 10pt;"><a href="http://walk.lupusresearch.org/site/R?i=GWwa4_2F0Jok-QRlr7FIcA.." target="_blank"><em><span style="color: #0000cc; font-family: Arial, sans-serif; text-decoration: none;">www.igfn.org/t</span></em></a><em><span style="font-family: Arial, sans-serif;">. All donations made through this program go to the specific Walk and not towards a specific team. </span></em></span></span><span class="Apple-style-span" style="font-family: 'Times New Roman';"><a href="http://www.lupusresearch.org/">Alliance for Lupus Research</a></span></span><br />
<span class="Apple-style-span" style="font-family: Arial, sans-serif;"></span><span class="Apple-style-span" style="font-family: Arial, sans-serif;">If you have any questions please feel free to email <a href="mailto:haldama@lupusresearch.org" target="_blank"><span style="color: #0000cc;">haldama@lupusresearch.org</span></a>.</span>Amanda ~ LA Lupus Ladyhttp://www.blogger.com/profile/06558535701385293731noreply@blogger.com1tag:blogger.com,1999:blog-3546545349079605635.post-49981952964803794332011-03-03T17:35:00.000-08:002011-03-03T17:35:59.853-08:00Wonder is where you find it...Barbara Biziou, is an inspiring life coach and author whose books and workshops have tremendously enhanced my enjoyment of life. Her website offers insights and lessons on how to celebrate today. Earlier today I received the March Newsletter from Barbara Biziou and <a href="http://www.joyofritual.com/">www.joyofritual.com</a> I feel compelled to share this with you: <br />
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<div style="color: #666699; font-family: Verdana, Geneva, Arial, Helvetica, sans-serif; font-size: 10pt; margin-bottom: 0px; margin-top: 0px;"><span><i>The man whispered, God, speak to me, and a meadowlark sang. But, the man did not hear.</i></span></div><div style="color: #666699; font-family: Verdana, Geneva, Arial, Helvetica, sans-serif; font-size: 10pt; margin-bottom: 0px; margin-top: 0px;"><span><i>The man looked around, hearing nothing so the man yelled, "God, speak to me! And the thunder rolled across the sky.</i></span></div><div style="color: #666699; font-family: Verdana, Geneva, Arial, Helvetica, sans-serif; font-size: 10pt; margin-bottom: 0px; margin-top: 0px;"><span><i>But, the man did not listen.</i></span></div><div style="color: #666699; font-family: Verdana, Geneva, Arial, Helvetica, sans-serif; font-size: 10pt; margin-bottom: 0px; margin-top: 0px;"><span><i>The man looked around and said, God let me see you"</i></span></div><div style="color: #666699; font-family: Verdana, Geneva, Arial, Helvetica, sans-serif; font-size: 10pt; margin-bottom: 0px; margin-top: 0px;"><span><i>And a star shined brightly. But the man did not notice.</i></span></div><div style="color: #666699; font-family: Verdana, Geneva, Arial, Helvetica, sans-serif; font-size: 10pt; margin-bottom: 0px; margin-top: 0px;"><span><i>And the man shouted,</i></span></div><div style="color: #666699; font-family: Verdana, Geneva, Arial, Helvetica, sans-serif; font-size: 10pt; margin-bottom: 0px; margin-top: 0px;"><span><i>"God show me a miracle!" and a life was born.</i></span></div><div style="color: #666699; font-family: Verdana, Geneva, Arial, Helvetica, sans-serif; font-size: 10pt; margin-bottom: 0px; margin-top: 0px;"><span><i>But the man did not know. So, the man cried out in despair, Touch me, God and let me know you are here!"</i></span></div><div style="color: #666699; font-family: Verdana, Geneva, Arial, Helvetica, sans-serif; font-size: 10pt; margin-bottom: 0px; margin-top: 0px;"><span><i>Whereupon, God reached down and touched the man, but the man brushed the butterfly away and walked on."</i></span></div><div style="color: #666699; font-family: Verdana, Geneva, Arial, Helvetica, sans-serif; font-size: 10pt; margin-bottom: 0px; margin-top: 0px;"><br />
</div><div style="color: #666699; font-family: Verdana, Geneva, Arial, Helvetica, sans-serif; font-size: 10pt; margin-bottom: 0px; margin-top: 0px;"><span><i>Don't miss out on a blessing because it isn't packaged the way that you expect.</i></span></div><div style="color: #666699; font-family: Verdana, Geneva, Arial, Helvetica, sans-serif; font-size: 10pt; margin-bottom: 0px; margin-top: 0px;"><span class="Apple-style-span" style="color: black; font-family: 'Times New Roman'; font-size: small;"><br />
</span></div><div style="font-family: Verdana, Geneva, Arial, Helvetica, sans-serif; font-size: 10pt; margin-bottom: 0px; margin-top: 0px;"><span class="Apple-style-span" style="font-family: 'Times New Roman'; font-size: small;"><span class="Apple-style-span" style="color: purple;">I know that dreams come true and visions work. Listen to your world and be aware of everything because you never know where you will find your spirit. </span></span><span class="Apple-style-span" style="color: purple; font-family: 'Times New Roman'; font-size: small;">I believe that every thing in my life has come together to help me become the woman I am today. Still figuring out how to be comfortable in my skin, while living and thriving with Lupus. I am so much more than the disease. I am learning how to be who I am a spirited woman who finds healing in many ways.</span></div><div style="font-family: Verdana, Geneva, Arial, Helvetica, sans-serif; font-size: 10pt; margin-bottom: 0px; margin-top: 0px;"><span class="Apple-style-span" style="color: purple; font-family: 'Times New Roman'; font-size: small;"><br />
</span></div><div style="font-family: Verdana, Geneva, Arial, Helvetica, sans-serif; font-size: 10pt; margin-bottom: 0px; margin-top: 0px;"><span class="Apple-style-span" style="color: purple; font-family: 'Times New Roman'; font-size: small;">Tonight I am going to find healing at the El Rey Theater as Veronica Varlow performs with Emilie Autumn and the Asylum. May you find healing wherever you are. Happy Wellness!</span></div>Amanda ~ LA Lupus Ladyhttp://www.blogger.com/profile/06558535701385293731noreply@blogger.com2tag:blogger.com,1999:blog-3546545349079605635.post-4325658188243443482011-02-28T23:50:00.000-08:002011-02-28T23:50:48.419-08:00Lupus Advocacy is important!I know what it is like to go to Washington, DC to advocate for Lupus Research. I remember the exhaustion... I remember the sore feet... and I remember why I did it. I went to our nation's capitol because over 1.5 million Americans have Lupus. Lupus is one of the lesser-known major diseases in the United States, Lupus is an autoimmune disease that effects each individual patient differently. If I was on Capitol Hill today I would be joining the team of Lupus Advocates that are meeting with members of Congress, (or more likely, a Health Legislative Aide) today to discuss the importance of funding Lupus medical research by telling my story of what living with Lupus has been like for me the past 28 years. I would tell you that it may not have been easy but it was "much better than the alternative".<div><br />
</div><div>If you have Lupus or someone you know has Lupus. Please raise your voice and let your Senators and House members know that you are a constituent who is an advocate for Lupus and you vote. Let your voice be heard...<div><div><div><br />
</div><div>The Lupus Foundation of America is going to Capitol Hill today to ask for:</div><div> </div><div>Increase funding for Lupus Medical Research at the National Institutes of Health (NIH).</div><div> </div><div>Fund the establishment of a Lupus Medical Research Program, established under the Congressionally Directed Medial Research Program (CDMRP), Defense Health Program (DHP), Department of Defense (DoD).</div><div><br />
</div><div>Continue funding for:</div><div><br />
</div><div>The National Lupus Awareness Campaign at the U.S. Department of Health and Human Services' Office on Women's Health (OWH) which increases public awareness of Lupus in order to increase early diagnosis of Lupus.</div><div><br />
</div><div>The Health Provider Education Campaign at the U.S. Department of Health and Human Services' Office of Minority Health (OMH) which increases health professional providers' awareness of Lupus to improve Lupus diagnosis and treatment.</div><div><br />
</div><div>Lupus has a tremendous financial cost to the nation, estimated at $31.4B annually, but the cost of inaction will only make those numbers grow. We cannot afford to wait. </div></div><div><br />
</div></div></div><div><a href="http://capwiz.com/lfa/home/">http://capwiz.com/lfa/home/</a></div>Amanda ~ LA Lupus Ladyhttp://www.blogger.com/profile/06558535701385293731noreply@blogger.com0tag:blogger.com,1999:blog-3546545349079605635.post-45727582142616597172011-02-11T17:51:00.000-08:002011-02-11T17:51:58.947-08:00I am a writer for ButYouDontLookSick.com ~ Put Your Best Face Forward!I am so excited and proud to announce that I am one of the new Staff Writers on the website ButYouDontLookSick.com<div><div><br /></div><div><a href="http://www.butyoudontlooksick.com/book-and-product-reviews/product-reviews/cosmetics/product-review-nicole-paxson-mimosa-liquid-foundation-put-your-best-face-forward/">Product Review Nicole Paxson &#8220;Mimosa&#8221; Liquid Foundation: Put Your Best Face Forward!</a></div></div>Amanda ~ LA Lupus Ladyhttp://www.blogger.com/profile/06558535701385293731noreply@blogger.com2tag:blogger.com,1999:blog-3546545349079605635.post-18942066240388250982011-01-18T21:41:00.001-08:002011-01-18T21:41:54.886-08:00My Review of Junk Food New York Jets Vintage Distressed Triblend T-Shirt<div class="hreview"><div class="item"><p><a href="http://www.nflshop.com/product/index.jsp?productId=4325477">Originally submitted at NFL</a></p><div><img src="http://images.powerreviews.com/images_products/08/16/11119587_100.jpg" class="photo" align="left" style="margin: 0 0.5em 0 0"><p style="margin-top:0">Like players need their uniforms, you need your game day gear! The Junk Food® vintage distressed triblend tee looks great whether you're hitting up a tailgate or hosting at home. Your team's script name, logo and "Football" are each screenprinted onto the chest in a distresse... </p></div><a href="http://www.nflshop.com/product/index.jsp?productId=4325477" style="display: none;" class="url fn"><span class="fn">Junk Food New York Jets Vintage Distressed Triblend T-Shirt</span></a></div><br clear="left"><p><strong class="summary">J-E-T-S T-shirt!</strong></p><div>By <strong>LA Lupus Lady</strong> from <strong>Los Angeles, CA</strong> on <strong><abbr title="2011118T1200-0800" class="dtreviewed" style="border: none; text-decoration: none;">1/18/2011</abbr></strong></div><p><div style="margin: 0.5em 0; height: 15px; width: 83px; background-image: url(http://images.powerreviews.com/images_merchants/stars/10232_stars_small.gif); background-position: 0px -144px;" class="prStars prStarsSmall"> </div></p><div style="display: none"><span class="rating">4</span>out of 5</div><p><strong>Sizing: </strong>Feels too small</p><p><strong>Pros: </strong>Stylish, Shows Off Team Pride</p><p><strong>Best Uses: </strong>Around Town, At The Game, Watching The Game on TV, Anytime</p><p><strong>Describe Yourself: </strong>Sports Enthusiast</p><p style="margin-top:1em" class="description">Super t-shirt! Bought using the Wildcard Network to help support the Jets for Wild Card Weekend ~ my new lucky shirt, it works!</p><p style="margin-top:0.5em">(<a href="http://www.powerreviews.com/legal/terms_of_use.html" rel="license">legalese</a>)</p></div>Amanda ~ LA Lupus Ladyhttp://www.blogger.com/profile/06558535701385293731noreply@blogger.com2tag:blogger.com,1999:blog-3546545349079605635.post-22220101414840314552011-01-14T10:57:00.000-08:002011-01-14T10:57:49.064-08:00Help me create and share the "Joys of Lupus"<span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;">One of my proudest moments of being "LA Lupus Lady" came when I posted the final version of the "This is what Lupus looks like" ~ I hope everyone has had a chance to watch the video that I had the idea for and that together we (the Lupus community!) made and called "This is what Lupus looks like"!</span><br />
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<span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;">I am already planning the next video project. Are you ready..? The next video is going to be called "The Joys of Lupus" I am asking for you and every "Lupie" you know to submit any three pictures that you want to... ~ share pictures that are beautiful and joyful or depressing and ironic as long as you feel the pictures show the "Joys of Lupus"</span><span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"> </span><span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><br />
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<span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;">Details:</span><br />
<span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;">1) email pictures to me at lalupuslady@gmail.com</span><span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"> </span><span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><br />
</span><span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;">2) subject line "Joy of Lupus"</span><span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"> </span><span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><br />
</span><span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;">3) please include how you would like to be credited in the video at some point in the body of the email in ALL CAPS</span><span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><br />
</span><span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;">4) submit by January 30, 2011</span><br />
<span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"></span><span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;">5) by submitting your pictures to mean, you are allowing me to put them into a YouTube video that will posted online and available for the entire world to see. (you know this already...)</span><span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;"><br />
</span><br />
<span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 14px;">Thank you for supporting this and helping me prove that Lupus Awareness is fun! Now, all you have to do is smile at a camera and say "Lupus!"</span>Amanda ~ LA Lupus Ladyhttp://www.blogger.com/profile/06558535701385293731noreply@blogger.com1tag:blogger.com,1999:blog-3546545349079605635.post-32961182573976993582011-01-12T10:44:00.000-08:002011-01-12T20:01:43.183-08:00Turning your head...Changing the way you see things can be as easy as turning your head. After attending two funerals in as many days, I was feeling a bit of "survivor's remorse". So when I woke up today I wanted to blog about the idea I have for the next Lupus video compilation project. <br />
<div><br />
</div><div>I was going to ask each "Lupie" that contributed to the "This is what Lupus looks video" (as well as anyone else who wants to contribute to join our growing Lupie/Spoonie community) to share pictures of "what Lupus costs us" or "how have you paid the price for a life with Lupus"-- possibly including pictures of those who have passed of Lupus. How morbid and sad! But that is a truth of what Lupus has cost us--and the world--every time another person with Lupus dies.</div><div><br />
</div><div>I thought about the personal price I have paid for "living with Lupus". Would I post a picture of a baby with a red circle-slash over it, since my Lupus has provided me with extremely low estrogen and I experienced early onset menopause two years ago? Now, please don't flood my e-mail or comment box with "there is always adoption", because I can't begin to tell you how much money, time, energy and emotion was spent on trying to become a mom that way. Can you begin to see the negative spiral? Who has the time? Not me! I am living with Lupus and each minute is precious! So I closed my eyes, turned my head (my neck cracked!) and when I opened my eyes I realized that by shifting my point of view--even just slightly--the next video project could focus on what I call "the joys of Lupus". How having Lupus in my life makes me appreciate the little things in a constant, yet evolving, way.</div><div><br />
</div><div>Whether you have Lupus or not, maybe all you should do when you feel the negative spiral coming is close your eyes and turn your head.</div>Amanda ~ LA Lupus Ladyhttp://www.blogger.com/profile/06558535701385293731noreply@blogger.com1tag:blogger.com,1999:blog-3546545349079605635.post-53187882720382239762011-01-10T14:01:00.000-08:002011-01-10T14:01:04.215-08:00"This is what Lupus looks like"<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/PX0vS45ntsg?feature=player_embedded' frameborder='0'></iframe></div>I first heard Toni Braxton say the words "This is what Lupus looks like" at the 2010 Lupus LA Bag Ladies Luncheon, I was inspired to show the world the living with Lupus isn't pretty but it is beautiful. I asked the Lupus community on Facebook and Twitter to share pictures. Some "Lupies" asked me what kind of pictures did I want? I did not have any guidelines. I just said " show me what you want to. I am proud of this video and of everyone who contributed and shared with me, so that together we could show the world ~~ "This is what Lupus looks like"Amanda ~ LA Lupus Ladyhttp://www.blogger.com/profile/06558535701385293731noreply@blogger.com2tag:blogger.com,1999:blog-3546545349079605635.post-8424972138587252352010-11-18T12:27:00.000-08:002010-11-18T13:33:10.123-08:00ALR LA "Walk with Us" to cure Lupus!<div>ALR Walk in Santa Monica ~ November 13th was a perfect day to take a walk on the beach for Lupus Research. After raising awareness for the Alliance for Lupus Research Walk a few weeks earlier by getting "mic-ed up" for an interview on The Sound FM, a Los Angeles radio station. It was time to take steps for Lupus Research. I strongly support the Alliance for Lupus Research because 100% of every dollar raised goes directly to funding Lupus Research. Robert Wood Johnson started the ALR after his daughter contracted the illness. He wanted to help find and fund the research that will lead to a cure for Lupus. Robert Wood "Woody" Johnson also owns the New York Jets and my husband is an ex-New Yorker and proudly wore his NY Jets shorts and baseball hat supporting the man behind the Alliance for Lupus Research. The Alliance for Lupus Research website is www.LupusResearch.org</div><div><br /></div><div><br /></div><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dyB8jEMOzx6pX4s3vR_hIe1o1JiFH2L8ZxsIJcjZrlowYILpOk5l_xDYuzVLmfwB0ZND6dgUbcWkwkV4GpqEQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe>Amanda ~ LA Lupus Ladyhttp://www.blogger.com/profile/06558535701385293731noreply@blogger.com0tag:blogger.com,1999:blog-3546545349079605635.post-87077317463869430472010-11-17T19:32:00.000-08:002010-11-17T19:32:18.290-08:00Toni Braxton Reveals She Has Lupus, Gets Lady Gaga's Support | Billboard.comYesterday I had the immense pleasure of spending some time with Toni Braxton at the Lupus LA 2010 "Hollywood Bag Ladies" event and if you watch the video in <a href="http://www.billboard.com/news/toni-braxton-reveals-she-has-lupus-gets-1004127039.story?sms_ss=blogger&at_xt=4ce49d8cd476193f,1">Toni Braxton Reveals She Has Lupus, Gets Lady Gaga's Support | Billboard.com</a> you'll see that I created it! Lupus Awareness is fun!<div><br /></div><div><br /></div>Amanda ~ LA Lupus Ladyhttp://www.blogger.com/profile/06558535701385293731noreply@blogger.com0tag:blogger.com,1999:blog-3546545349079605635.post-78577757050440621432010-10-31T23:39:00.000-07:002010-10-31T23:47:53.935-07:00"LA Lupus Lady" a Halloween costume that raises Lupus Awareness!<object style="background-image:url(http://i3.ytimg.com/vi/RjfXlXlXGz8/hqdefault.jpg)" width="425" height="344"><param name="movie" value="http://www.youtube.com/v/RjfXlXlXGz8?fs=1&hl=en_US"><param name="allowFullScreen" value="true"><param name="allowscriptaccess" value="always"><embed src="http://www.youtube.com/v/RjfXlXlXGz8?fs=1&hl=en_US" width="425" height="344" allowscriptaccess="never" allowfullscreen="true" wmode="transparent" type="application/x-shockwave-flash"></embed></object><div><br /></div><div>Not sure when I decided that I would be "LA Lupus Lady" for Halloween... After 26 years as a Lupus patient and a few years of being a Lupus advocate, I feel comfortable as @LALupusLady on twitter and once I chose my costume, or as my friend says my costume chose me. (Not unlike, a Lupus diagnosis...) I knew that I wanted to represent the strength and courage of the Lupus patient, the grace and beauty of being a Lady and most of all a sense that "raising Lupus Awareness is fun." The bright purple and orange are two colors of Lupus organizations that I support and advocate for. I enjoy finding the joy of Lupus and hope that you enjoy the video. </div><div><br /></div><div>Amanda</div><div>@LALupusLady on twitter and "LA Lupus Lady" for Halloween!</div>Amanda ~ LA Lupus Ladyhttp://www.blogger.com/profile/06558535701385293731noreply@blogger.com1tag:blogger.com,1999:blog-3546545349079605635.post-2412312646546173052010-03-10T17:45:00.000-08:002010-03-10T19:54:20.823-08:00One step for me, one step for Lupus.Long time no blog... (I know... I could spend an entire blog apologizing about my procrastination issues or I could delve right into the reason I am writing right now...)<br /><br />For the very first time, Lupus LA will have runners participating in the LA Marathon and the day before the Marathon, I am going to participate in the first Lupus 5K of the year. There are a number of lupus organizations who organize different Lupus Walks throughout the year. The Lupus 5K, in association with the LA Marathon, will benefit "Lupus LA". I am proud to be a member of Team Life Without Lupus. I do not run. I do not jog. My plan is to put one foot in front of the other until I am done. One step for me, one step for Lupus. If the mood strikes me, I will skip along a portion of the course as I realize how lucky I am. Lucky that I am healthy enough to get out of bed and take steps towards funding a "life without lupus". Each time I train (a.k.a. work out) for the Lupus 5K, I remember that there are Lupus patients who cannot walk, so I am walking for them. (To be honest, sometimes that isn't enough of a motivation to get moving--I know, bad Lupie!)<br /><br />It is those times that I channel my alias, LA Lupus Lady, and know that I need to move forward for Lupus. I can "strut my stuff" while raising Lupus awareness. The notion of "strutting my stuff" comes from the Purple Lab NYC lip gloss "Huge Lips, Skinny Hips" shade Red Sole, whose name was inspired by the bright red bottoms of shoes designed by Christian Louboutin. When I put on this gloss with Hoodia (an appetite suppressant) inside it, even though I am donning my cross-trainers instead of stilettos I feel comfortable in my skin and my stride finds a swagger that was missing before. I find my "Red Sole Strut". The best thing about wearing "Huge Lips, Skinny Hips" while I am in training is that I look good and the gloss isn't sticky, so my hair doesn't stick to my plump pout. I feel the Hoodia working and while I am out on the street putting one foot in front of the other, I remember that I am wearing my Purple Lab lip gloss and I can "train" for 5 more minutes.<br /><br />The best part of my Lupus 5K training is the "ritual soak" I take after a good long walk. I love combining Epsom salt with an essential oils and linger in the tub. After that I slather on the lotion and conk out. While I have not been remiss in my training for the Lupus 5K, I have been lacking in the fund-raising department... which leads me to post this now.<br /><br />On March 20th, I am taking steps to raise Lupus Awareness. Please help by donating what you can to my effort for Lupus LA. Click on the link <a href="http://www.firstgiving.com/lalupuslady">www.firstgiving.com/lalupuslady</a> and donate what you can. Thank You!<br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dyPWk2B5ss3Yu9jCq39Q7M3lLF_0FlHpXwVASgxspx5UmzdG1f3o1Zo92O6iZAi_J25TjSWaedE_hZDqNPu' class='b-hbp-video b-uploaded' frameborder='0'></iframe>Amanda ~ LA Lupus Ladyhttp://www.blogger.com/profile/06558535701385293731noreply@blogger.com2tag:blogger.com,1999:blog-3546545349079605635.post-81518318594598508672009-11-11T19:31:00.000-08:002009-11-14T09:24:06.529-08:00Rachel Pally gets into the Loop for Lupus Awareness!<a href="http://2.bp.blogspot.com/_ABPQdwqfJZY/SvuKRADIv_I/AAAAAAAAADQ/DE3nwdpFkRg/s1600-h/rachelpally+and+me+in+the+loop.JPG"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5403064202636607474" border="0" alt="" src="http://2.bp.blogspot.com/_ABPQdwqfJZY/SvuKRADIv_I/AAAAAAAAADQ/DE3nwdpFkRg/s320/rachelpally+and+me+in+the+loop.JPG" /></a> I was beginning to feel as if my actions were making a difference. In the name of LA Lupus Awareness, I was taking action. I had participated in a clinical trial to advance the cause of Lupus Research. There was a tweet from Alec Sulkin, a writer/producer of "Family Guy", @thesulk on twitter featuring Lupus for the punchline. I had given an orange Lupus Research bracelet and information to Constance Marie. {read more in my previous blogs} Yet I still had to let people know about Lupus LA's "Hollywood Bag Ladies Luncheon" -- one of the reasons I started LA Lupus Awareness in the first place.<br /><br />The annual event is taking place on November 18 at the Beverly Wilshire Hotel. The Lupus LA event is fun and fabulous. There is a silent (and somewhat wild) "handbag" auction, this year's honorees are Melissa Joan Hart and Janice Arouh of Hallmark Channel and a fashion show by Versace highlights the event. With the luncheon in mind, I thought it would be perfect if I could get Melissa Joan Hart involved in my LA Lupus Awareness campaign.<br /><br />Now I have a new found appreciation for the power of social media because when Melissa Joan Hart @MellyJHart tweeted about "getting into the loop" I felt LALA (aka LA Lupus Awareness) success instantl, as if getting Melissa Joan Hart to tweet was the official earning of the stripes.<br />Getting an orange Lupus Awareness bracelet and information to Constance Marie and having @MellyJHart 's tweet (specifically she retweeted me: "RT @LALupusLady did you know that @MellyJHart is going to be honored by Lupus LA on 11/18? please get into the loop before she does.") were great steps on my path to create and raise LA Lupus Awareness. As I mentioned before, I can be shameless and I began asking for and getting positive response wherever I went. I wore my orange bracelet and Lupus t-shirts on my daily errands and trips to the market. I had asked (via twitter) Sandra Bernhard if she would support me in raising LA Lupus Awareness. She did. Sandra tweeted "@<a class="tweet-url username" href="http://twitter.com/lalupuslady">lalupuslady</a> that's a big job bless you of course i will support you #LA Lupus Awareness we've got to beef up our immune systems kids!" (I was bursting at this point)<br /><br />The only thing lacking from my awareness campaign was pictures... I was determined to get evidence of my next "awareness action" on camera. In fact, I wanted to actually get someone in the loop (An orange elastic loop!). Thank goodness once again for social media. It was on twitter that I found out that Rachel Pally was going to be at her Pop Up Shop personally styling shoppers. Rachel Pally is a Los Angeles-based designer who understands a woman's body and her collection is a constant staple of California style. Rachel created the classic caftan dress and her jersey is perfect fabric for the easy-to-wear clothing she designs. It was kismet that Rachel was going to be in her shop. My only hope was that she would be as cool and fun as her designs.<br /><br />As I entered the store, Rachel greeted me and finished up with stylists who were there to select some pieces for Drea DeMatteo to wear on a future episode of Desperate Housewives. Then Rachel turned to me and as we started talking about how she loved to wear long dresses everywhere even to the supermarket and post office, she handed me one dress after another to try on. I love her style; it seems effortless and yet so put together. I never would have thought to try on a black and grey floral print wrap-around dress. Usually I shy away from prints, but the floral pattern was subtle and the ultrasoft fabric simply made this dress a "must have" and a classic. Yet Rachel thought it would work --not only did the dress work but it flattered me. The dress hugged my body in the right places and floated as I twirled around the store.<br /><br />Rachel is beautiful--her long brown hair and infectious smile, as well as her energy, made it easy for me to tell her about living with Lupus. I gave her an orange Lupus awareness bracelet and a brochure with information on symptoms of Lupus. Then I told her about how I started LA Lupus Awareness and I needed something to wear to the "Hollywood Bag Ladies Luncheon". With that, Rachel headed to a rack and handed me a basic black dress. It didn't look like much on the hanger, but once on it turned into an upper-body-hugging v-neck long sleeve dress that I could style in a number of ways. For the luncheon, Rachel said I should wear it with a black peep toe slingback; after the luncheon I could wear it with my black boots and take it anywhere from the post office to a Beverly Hills fund-raiser to shopping at Whole Foods. Rachel showed me to enjoy comfort and style wherever I go, and that you are overdressed as long as you feel pretty.<br /><br />Rachel agreed to get into the loop for Lupus but only if I would join her. I happily present the picture of Rachel Pally and me in the loop for Lupus Awareness. I am truly grateful to Rachel Pally for getting into the loop for Lupus and especially for helping me achieve the first photographic evidence of a successful LA Lupus Awareness campaign.Amanda ~ LA Lupus Ladyhttp://www.blogger.com/profile/06558535701385293731noreply@blogger.com1tag:blogger.com,1999:blog-3546545349079605635.post-38199920220881803272009-11-10T09:25:00.000-08:002009-11-11T19:30:21.463-08:00<a href="http://1.bp.blogspot.com/_ABPQdwqfJZY/SvmijfBw5dI/AAAAAAAAAC4/y0q7atv1Jqk/s1600-h/lupuslaoff.JPG"><img id="BLOGGER_PHOTO_ID_5402527958515639762" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 200px; CURSOR: hand; HEIGHT: 150px" alt="" src="http://1.bp.blogspot.com/_ABPQdwqfJZY/SvmijfBw5dI/AAAAAAAAAC4/y0q7atv1Jqk/s200/lupuslaoff.JPG" border="0" /></a> LA Lupus Awareness started as an idea I had to raise Lupus Awareness for Lupus in Los Angeles. I am a patient/advocate and realized that without something different that my cause could get lost in the fray. My goal is to increase visiblity for Lupus in Los Angeles (and across the universe). The phrase commonly used throughout the Lupus community is "get into the loop for Lupus" and with that in mind, I got an orange loop and set off on my #LALA adventures.<br />Before my clinical trial at UCLA, my first official action for LA Lupus Awareness, I had started requesting Lupus support from across my twitter community. While enjoying a fabulous night of feminine talent and power I was able to start #LALA early as I gave an orange Lupus Awareness bracelet to the fabulous burlesque star "the Danger Dame" Veronica Varlow. She, in turn, gave me a magical key necklace. Veronica's Magical Key worked fast.<br />The next day, I woke up and was thrilled (overwhelmed, really!) to receive a DM from @thesulk. Alec Sulkin is a producer/writer on my favorite Fox comedy "Family Guy" and I had asked him a few weeks earlier if he would tweet a joke about Lupus. The DM simply said "um, you may want to check my latest tweet. ; )" With that, I went to his latest tweet and read "If Jesus was named Lupus Christ, would that mean people with Lupus would now have Jesus?" I smiled then and I smiled now as I typed it for this blog. I believe that laughter is powerful and strong medicine. That Alec took the time to use his very funny mind to come with this gem of a Lupus joke makes me smile. His tweet gave me the energy to believe that I could do this. One woman can do her part to raise Lupus Awareness.<br /><br /><a href="http://1.bp.blogspot.com/_ABPQdwqfJZY/SvmiVhAbBZI/AAAAAAAAACw/1MxZpNP6aDk/s1600-h/lll+in+the+loop.JPG"><img id="BLOGGER_PHOTO_ID_5402527718528714130" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 272px; TEXT-ALIGN: center" alt="" src="http://1.bp.blogspot.com/_ABPQdwqfJZY/SvmiVhAbBZI/AAAAAAAAACw/1MxZpNP6aDk/s320/lll+in+the+loop.JPG" border="0" /></a> Now--to take it to the next level and make #LALA memorable. That is where the orange loop comes in. I was feeling tired and rundown, usual for a Lupus patient but unacceptable to me as I had #LALA planning to do. But my body often wins in the battle between mind and body. I tweeted about my aches and somehow got the energy to finalize the details of my participation in my first clinical trial for Lupus. (Read about the clinical trial details in a previous post) When I returned home from UCLA, after my clinical trial I had my husband take the picture you see here, it is a picture of me seen through the loop.<br />The following day, I woke up feeling drained and recalled that I had given too many tubes of blood for Lupus Research. Starting the day slowly watching "Good Day LA" on Fox 11, I was taking it slow and easy and then Constance Marie appeared in a news segment, on the screen. Constance was the celebrity endorsing a reading program at the Culver City Public Library. I felt if I could only manage to get dressed and ready in a hour, I could get her into the loop for Lupus. As fast as I could muster (picture a snail going as fast as she can) I got showered and dressed. I drove the short distance to the library and--wouldn't you know it--as I parked my car, I saw Constance and her companion (an assistant or her publicist, I don't know) heading to her SUV. If I didn't act fast, the entire morning rush would be for nothing. So I asked if I could give her a Lupus Awareness bracelet. Her companion said "sure". And I dug through my purse and found an orange bracelet; while the two of them were packing their car, I also managed to somehow find the one-sheet of Lupus information. Whew! I did it! I got her a bracelet and information. Somewhere on it, the pamphlet said that "90% of people with Lupus are women." Another one of the facts about Lupus that is on the flyer I gave to Constance Marie is that "Lupus is more common and tends to be more severe among African-American, Latina/Hispanic, Asian and Native American women." As a woman living with Lupus, I am glad that I gave one of the most famous Latina women in the world some information about Lupus. I hope that she read the information. I didn't get a picture or evidence of my outreach effort via a tweet. But I felt good sharing the LA Lupus Awareness with Constance Marie.<br />With over 1.5 million Americans diagnosed with Lupus, chances are that someone you know has Lupus. That is only one reason why I am doing what I can to raise LA Lupus Awareness.<br />I get my Lupus bracelets and printed information from my local Lupus organization, Lupus LA. The picture above features Adey and Elyse work non-stop from their desks in the Lupus LA offices. I am grateful to Lupus LA for their efforts in fighting to fund innovative Lupus research and support patient services.<br />More #LALA reports coming soon... and I get my first photographic evidence of getting a celebrity into the Loop for Lupus.Amanda ~ LA Lupus Ladyhttp://www.blogger.com/profile/06558535701385293731noreply@blogger.com0tag:blogger.com,1999:blog-3546545349079605635.post-85693200874622634362009-11-09T13:32:00.000-08:002009-11-11T19:26:41.949-08:00<a href="http://2.bp.blogspot.com/_ABPQdwqfJZY/SvipfgZN_DI/AAAAAAAAACo/yYEzAE_YzwI/s1600-h/oct+2009+082.JPG"><img id="BLOGGER_PHOTO_ID_5402254111767657522" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="http://2.bp.blogspot.com/_ABPQdwqfJZY/SvipfgZN_DI/AAAAAAAAACo/yYEzAE_YzwI/s320/oct+2009+082.JPG" border="0" /></a><br /><div><a href="http://1.bp.blogspot.com/_ABPQdwqfJZY/SvipOAH-oZI/AAAAAAAAACg/movuo34m26M/s1600-h/oct+2009+081.JPG"><img id="BLOGGER_PHOTO_ID_5402253811047637394" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; WIDTH: 200px; CURSOR: hand; HEIGHT: 150px" alt="" src="http://1.bp.blogspot.com/_ABPQdwqfJZY/SvipOAH-oZI/AAAAAAAAACg/movuo34m26M/s200/oct+2009+081.JPG" border="0" /></a><br /><br /><div><img id="BLOGGER_PHOTO_ID_5402251487417973426" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px" alt="" src="http://4.bp.blogspot.com/_ABPQdwqfJZY/SvinGv7furI/AAAAAAAAACY/I3Orebr092Y/s320/oct+2009+079.JPG" border="0" />Before I began my LA Lupus Awareness campaign, I knew that it was going to be something special and magical. I knew because on Sunday night, October 25th, on the Sunset Strip, in the bowels of the Key Club, after the Emilie Autumn show, I met Veronica Varlow. Veronica, who is (according to her Twitter bio) the "Danger Dame of Burlesque, Filmmaker, Confidence Coach of Femme Fatales, Evil Mastermind of World Domination". I became aware of Veronica Varlow online because her body is seen in silhouette in the branding images for Purple Lab NYC. I developed a major "girl crush" on Veronica Varlow as soon as I saw her in the videos for Purple Lab on YouTube. Veronica embodies everything that I long to be-- she is sexy, fun, warm, confident and very comfortable in her skin. Meeting and speaking with Veronica Varlow after the show was insane and beyond fabulous. In person, as she is on video, Veronica is warm, friendly and accepting. She "got" me and all that that entails. I was a bundle of passion and excitement. I felt just like I did when I was going to see a Rick Springfield concert (if you don't know who that is, Google him!). When I finally spoke with her, I was nervous and anxious but I told her all that she has brought into my life. The feeling that it is more than okay to be a woman and take up space as you walk-- own it. "Feel comfortable in your skin." Telling her about the difference that she and Purple Lab NYC have brought into my life brought tears to my eyes ("real cool", I know, but I am who I am and I got teary) and it was an incredible moment. Then, to make the moment even more incredible, she gave me the 'key' off of her neck. The 'key' that she wore on stage that night. As she put it on me, around my neck, she told me that it was a "magical" key. {I can't believe she gave me the key!}</div><div></div><div>I began to tell her about how empowering she is and how I have become "LA Lupus Lady" and that with her help and the amazing lip gloss "Huge Lips, Skinny Hips" from Purple Lab NYC that my life was changing. I was "owning" it.</div><div>To be truthful, I began this blog as a way to increase votes for my entries in the 'Kiss and Tell' contest. Now, I am going to take the inspiration and do something. I am going to start spreading Lupus Awareness around Los Angeles. She smiled and I asked her if I could give her an Orange Lupus Awareness bracelet. She immediately put it on and told me that I was going to be her guest at the VIP After-Party, which included a special reading by Emilie Autumn with Veronica and the rest of the Bloody Crumpets. I was overwhelmed by the incredibly talented women and seeing them close up and without the stage lighting made them approachable and real, honest inspirations rather than uber-talented stars of the burlesque world; though, in fact, these women before me were both. </div><div>Honoring the power of feminine bonding is an essential part of being a Lady. Finding the beauty and magic within each of us is also a crucial part of the journey. Part of my journey and process to finding the balance is this blog. Thank you for reading it and thank you to Veronica Varlow, Emilie Autumn, the Bloody Crumpets and everyone at Purple Lab NYC for inspiring me each and every day.</div><div></div><div>I've started this blog as a place to explore my issues as a woman living with Lupus and struggling to balance being an LA Lupus Lady. I am grateful for the chance to share my thoughts. Thank You for reading them. Check out my videos on YouTube at <a href="http://www.youtube.com/user/LALupusLady">www.youtube.com/user/LALupusLady</a> and follow me on twitter @LALupusLady. Be Well, Be Strong.<br /></div><div></div></div>Amanda ~ LA Lupus Ladyhttp://www.blogger.com/profile/06558535701385293731noreply@blogger.com0tag:blogger.com,1999:blog-3546545349079605635.post-27946623004148976512009-11-09T09:28:00.000-08:002009-11-09T13:00:16.354-08:00LA Lupus Awareness aka LALA<a href="http://3.bp.blogspot.com/_ABPQdwqfJZY/Svh7QEa0NII/AAAAAAAAACQ/o5ZUJAldtK8/s1600-h/oct+09+037.JPG"><img id="BLOGGER_PHOTO_ID_5402203269025248386" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px" alt="" src="http://3.bp.blogspot.com/_ABPQdwqfJZY/Svh7QEa0NII/AAAAAAAAACQ/o5ZUJAldtK8/s320/oct+09+037.JPG" border="0" /></a> After my trip to Washington D.C. and Capitol Hill to advocate for Lupus I was excited to continue promoting and sharing Lupus Awareness with everyone I meet. I learned that I can be somewhat shameless and still remain true to who I am by using Facebook and Twitter during a "beauty contest" when I was asking friends and followers for votes in the Purple Lab NYC "Huge Lips, Skinny Hips" Kiss and Tell promotional campaign. I won one of the "Most Viral" titles<br />and used that win--and Purple Lab's idea of women are "Multi-tasking Mavens"--as inspiration for my Halloween costume and LALA, my name for LA Lupus Awareness. I realized that I could use that same shamelessness or chutzpah to benefit Lupus Awareness and Research.<br /><br /><br />Like the "Kiss and Tell" contest from Purple Lab, I wanted to create HUGE awareness for Lupus. After I recovered (when you have Lupus--at least with me--my body pays a price when I travel across the country, go to meetings with members of Congress on Capitol Hill and travel home again; the three days after my return I refer to as "recoup and regroup") from my trip to the nation's capitol, I began to think about creating a plan for my idea. First, I wanted to learn the latest Lupus news from the medical professionals. I went to the annual Lupus Patient Symposium sponsored by Lupus LA held at UCLA Medical Center to learn more about the latest research, current treatments and innovative therapies. I think it is important for Lupus patients to always keep themselves educated about current Lupus news and information. The annual symposium is a great way to stay informed and to connect with other Lupus patients. Connecting with other Lupus patients is one of the best ways to find comfort and support within our community. Whether attending a patient symposium or a local support group I have found the best support comes from someone who has been there and has gone through the same or similar circumstances. For me, the best thing about going to the Lupus Patient Symposium wasn't the incredible news about the clinical trial progress of one of the first new drugs for Lupus patients in over 50 years (Benlysta; since the day of the symposium Benlysta has had positive results in Phase 3 and is moving on to FDA approval). The best thing was that it was there, on a Saturday morning in Westwood, that I finally met Carmen--a friend and fellow "Lupie"-- in person. Carmen is one of the first Lupus patients that I connected with on Facebook and it was great to actually hug her instead of sending her a virtual one.<br /><br /><br />Armed with the education of a one-day patient symposium I was determined to continue to raise Lupus Awareness throughout and within Los Angeles. I planned on doing what I could do to raise Lupus Awareness between the Shopping Day on Rodeo Drive and the annual Hollywood Bag Ladies Luncheon. I created a video for YouTube on this year's Shopping Day on Rodeo Drive.<br /><br /><br />The YouTube video wasn't enough--I wanted to do more. I was determined to do more for Lupus but unsure of how to go about it. A bit later, as I was cleaning out my purse, I saw the flyer for the Lupus clinical trial that I heard about at the Patient Symposium. This clinical trial is studying links between Lupus and increased risk for CVD (Heart Disease) so I called the number and made my appointment to join in my first clinical trial. Though I have been a Lupus patient for over 26 years, I had never participated in a clinical trial before. I had little concern about the process, since Carmen had told me how easy UCLA had made it. You go in for your appointment, talk to the doctor, have your labs done and then your neck x-rayed. Carmen was right. The process was simple. After answering a few questions to verify my eligibility, I was given an appointment and place in the study. Once I arrived at UCLA Rheumatology Department, the clinical trial was easy. The patient intake--answering questions about my Lupus diagnosis and presence of Lupus activity--took less than an hour. Next, I was taken to the lab and I had my blood drawn; about 10 tubes were taken in addition to the two tubes of blood for a genetic study of Lupus patients. After the blood was drawn, I had to go to the Ultrasound Center for the ultrasound of the artery in my neck. The ultrasound of the artery in my neck will show the presence (or hopefully the absence) of plaque in my arteries and serve as a guideline for my propensity towards heart disease as a Lupus patient. The Ultrasound Center was located in a different part of the UCLA campus , so I moved my car and parked in the underground parking lot. I walked toward the elevator to go to the Ultrasound Center and that is when I took an elevator with Stevie Wonder. He was with his driver/companion and was whistling in the elevator.<br /><br />That is when I said "Mr. Wonder, I enjoy your work."<br /><br /><br /><br />He smiled extended his hand and said "What's your name?"<br /><br /><br /><br />I replied "Amanda, I am LA Lupus Lady" as I smiled at my own response.<br /><br /><br /><br />The elevator doors opened and Stevie said "Nice meeting you, Lady."<br /><br /><br /><br />With those words, I got off the elevator and found the Ultrasound Center. I went inside and instead of my name I gave the receptionist my medical reference number for the clinical trial, and the receptionist told me that I would be called by the name of the study and not my name when the technician was ready for me. A few minutes later I was called. After verifying that I was there for the Lupus study, I sat down on the table in the room and then I laid back as the technician placed some gel on the right side of my neck and I turned away from her she rubbed the ultrasound wand over my neck slowly and repeatedly. The same thing happened on the left side of my neck and then I was done. A short drive to UCLA, a few questions about my Lupus, a blood draw and a neck massage all in the name of Lupus Research. If you want to participate in a clinical trial for Lupus, you should visit the website <a href="http://www.lupustrials.org/">http://www.lupustrials.org/</a> for all the information you will need to get started.<br /><br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dz_tsdDcBjhM6KjXxztMfKOCVqwF7Knp199pV253MUUKLM50vPrXG-_el465dJf82rLwb_4yArM0guOxO-bEQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe><br /><br />I would like to thank Karen Robinovitz and everyone at Purple Lab NYC for not only inspiring a Halloween costume but the idea for "LALA" as well. ~ More on my LALA activities aka LA Lupus Awareness coming very soon. If you can't wait for the blog update, then follow me on Twitter via @LALupusLady.Amanda ~ LA Lupus Ladyhttp://www.blogger.com/profile/06558535701385293731noreply@blogger.com0tag:blogger.com,1999:blog-3546545349079605635.post-3383619493064245202009-09-15T22:19:00.001-07:002009-10-20T22:20:56.495-07:002009 Capitol Hill Advocacy Day for Lupus Research!<span style="font-size:0;"></span><div><img style="MARGIN: 0px 0px 10px 10px; WIDTH: 229px; FLOAT: right; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5381930788066991938" border="0" alt="" src="http://4.bp.blogspot.com/_ABPQdwqfJZY/SrB1iXx4n0I/AAAAAAAAABY/eYdsRq6PkCk/s320/agcapdc.JPG" />Have you ever wondered what it feels like to make a difference? I felt like a megaphone as I gave a voice to Lupus patients on Capitol Hill on Tuesday, September 15<span id="SPELLING_ERROR_0" class="blsp-spelling-error">th</span>. </div><div></div><div>Through my involvement with Lupus LA, I found out that the Lupus Research Institute and the <span id="SPELLING_ERROR_1" class="blsp-spelling-error">SLE</span> Foundation 2009 Capitol Hill Advocacy Day was coming. Although our financial situation isn't stable (whose isn't these days?), I knew I had to attend. I asked my husband if I could use his frequent flier mileage and hotel reward points to be a representative for Lupus patients in Washington, DC and he wholeheartedly agreed. My husband--and family--made it possible for me to participate and I am grateful for their constant and ceaseless support in my journey to raise Lupus Awareness.<br /><br />Last year, I attended my first Capitol Hill Advocacy Day. It was inspiring and awesome. I felt like my presence made a difference. Telling my story to elected officials (or more likely, their staffers) was amazing. Some people I spoke with had never heard of Lupus, while others had personal experience with the disease, with over 1.5 million Lupus patients in North America, it isn't unusual for "someone you know to have Lupus". Living with Lupus, I know first-hand what it is to face issues of being a patient with a chronic illness, and as weird as this sounds it was my "pleasure" to share these challenges with lawmakers and their legislative aides. Whether they knew about Lupus before my visit or were newly educated -- I knew that my presence was effective. </div><div><br /></div><div></div><div>What happens on a Capitol Hill Advocacy Day is that an organization or coalition (such as Lupus Research Institute) gathers their <span id="SPELLING_ERROR_2" class="blsp-spelling-corrected">constituents</span> in Washington, DC to have face-to-face meetings with the elected officials (or their staffers) to discuss potential legislation and issues tied to the cause that they represent. There is always a ton of Congressional business going on at any given time, but with health care reform now at the forefront of the President's agenda, September 15<span id="SPELLING_ERROR_3" class="blsp-spelling-error">th</span> was a perfect time to have meetings on the Hill to <span id="SPELLING_ERROR_4" class="blsp-spelling-corrected">advocate</span> for Lupus Research and Awareness. (Don't get me wrong, if you can ever attend an Advocacy Day for an issue or cause you are passionate about I definitely recommend it, timing notwithstanding!) This year, our appointments were scheduled by lobbyists that represent the Lupus <span id="SPELLING_ERROR_5" class="blsp-spelling-corrected">Research</span> Institute throughout the year. Each appointment is important--though the meeting may only last 15-20 minutes, it is vital to be a face of Lupus and a representative of the Lupus community. Meeting space is at a premium in Congressional office buildings and are often held in a hallway or by a window--even leaning against a wall. The location doesn't matter as long as the meeting happens! </div><div><br /></div><div></div><div>Though it had been over a year since my last visit to the Hill for Lupus, when I was walking the halls of the Rayburn House Office Building my sense of empowerment and inspiration returned immediately. I couldn't help but feel a tremendous sense of history and American pride. Knowing that somehow by entering the building with a purpose that I was transformed, I wasn't just Amanda or even LA Lupus Lady anymore but I was an advocate for Lupus Research on Capitol Hill. My megaphone turned on, I told my story and asked Congress to support Lupus Research and increase awareness by educating medical professionals. (WOW! This is so cool, I'm advocating for Lupus!) </div><br /><br /><div>My first meeting of the day was an appointment with my Congresswoman's (Representative Diane Watson) Health LA (Legislative Aide) to share my story and get to work for Lupus. The appointment went great. I cleared building security (much like an airport security process) and made it to the office in plenty of time to savor the triumph that is my journey. Waiting for the meeting before mine to end, I sat in the outer office and enjoyed the decor. It isn't everyday that LA Lupus Lady gets to sit on a couch surrounded by photos of (both) <span id="SPELLING_ERROR_6" class="blsp-spelling-error">Clintons</span> and political mementos. I soaked it all in. Then I was greeted by the Health LA and ushered into the office of the Honorable Diane Watson. I thought the outer office was incredible, but the idea of meeting in the actual Congresswoman's office took me aback. Somehow, I gathered my thoughts and made it through my appointment. Hitting the talking points, the ideas that <span id="SPELLING_ERROR_7" class="blsp-spelling-error">LRI</span> wanted advocates to mention in our meetings and getting personal by telling the story of my diagnosis, I truly felt that this appointment was worth the trip--and this was only the first meeting.</div><div></div><div></div><div></div><div>Because I had some time before my next meeting with Senator <span id="SPELLING_ERROR_8" class="blsp-spelling-error">Feinstein's</span> Health LA, I was able to drop-in on some other offices of California Representatives. "Drop-ins" are when you do not have a scheduled appointments and you stop by an office to see if the Health LA has a free moment to hear your "quick pitch"; if the Legislative Aide is unavailable, then you leave behind the printed information and follow up with phone calls and an e-mail, hoping that the issue will get to the Member (of the House). I was able to drop in on the offices of the Honorable Members of Congress that represent many different regions of California including: Brad Sherman (the Congressman from Sherman <span id="SPELLING_ERROR_9" class="blsp-spelling-corrected">Oaks who</span> inspired me to find a cause I believed in and advocate for it.), Sam Farr, Joe <span id="SPELLING_ERROR_10" class="blsp-spelling-error">Baca</span>, Xavier <span id="SPELLING_ERROR_11" class="blsp-spelling-error">Becerra</span>, Lois <span id="SPELLING_ERROR_12" class="blsp-spelling-error">Capps</span> and Loretta Sanchez.</div><div></div><div></div><div></div><div>The constituents from California met with the Health Legislative Aides from both Senator <span id="SPELLING_ERROR_13" class="blsp-spelling-error">Feinstein's</span> and Senator Boxer's offices. Then I went to meet with Hannah, the Health LA from Congresswoman Jane Harman's office ; she was very receptive and eager to learn about Lupus. After that meeting, while walking through the hallway I saw Congressman Solomon Ortiz of Texas, to whom I offered an orange Lupus Awareness bracelet. He accepted gladly and smiled with it for a photo op! Moments later, after I turned a corner to leave I saw Congresswoman Harman in person. I told her that she was a woman who lead me to get more involved in politics and that I was active in Young Democrats of LA and her speaking to the importance of youth participation got me to volunteer and that I had a great meeting with Hannah and hoped that I could count on her support for Lupus. She said I could and we took a photo. </div><div></div><div></div><div></div><div>That is what I thought would be the end of my advocacy on Capitol Hill. However, when I returned to my hotel room I had received a phone call from Brenda, the Health LA in Congressman Joe <span id="SPELLING_ERROR_14" class="blsp-spelling-error">Baca's</span> office, asking if I was available to discuss the Lupus information that I had dropped off at her office. Of course, I was available--the reason I was in DC was to advocate for Lupus with members of Congress or their staff. </div><div></div><div></div><div></div><div>The next morning, as I prepared for my second day of Advocacy on Capitol Hill, I thought about many of the reasons that I was there. I thought about my friend Heidi <span id="SPELLING_ERROR_15" class="blsp-spelling-error">Rusche</span>, who passed away from Lupus complications. I thought about Bonnie <span id="SPELLING_ERROR_16" class="blsp-spelling-error">Romoff</span>, my first Lupus support group leader ,who did the best she could yet still succumbed to the illness. I thought about my '<span id="SPELLING_ERROR_17" class="blsp-spelling-error">Lupies</span>' online, people with Lupus that I know through <span id="SPELLING_ERROR_18" class="blsp-spelling-error">Facebook</span> and Twitter and how I wish that together we can work to fund research to find a cure for Lupus. I thought about my own struggle with <span id="SPELLING_ERROR_19" class="blsp-spelling-error">SLE</span> and I decided to stop thinking and start advocating.</div><div></div><div></div><div></div><div>And then it was Capitol Hill Day Two!! I can't believe that my Lupus journey has taken me from a multitude of doctor's offices all the way to the US Capitol. Yet there I was, in a meeting with Brenda, Congressman Joe <span id="SPELLING_ERROR_20" class="blsp-spelling-error">Baca's</span> Health LA speaking to her about the <span id="SPELLING_ERROR_21" class="blsp-spelling-error">LRI</span> and how the Congressman can help fund Lupus research. I don't want to speak in hyperbole but the experience of speaking with Brenda, about innovative Lupus research and the need for increased medical professional education was the highlight of my trip. I saw that Congressman Brad Sherman's office was directly across the hallway from Congressman <span id="SPELLING_ERROR_22" class="blsp-spelling-error">Baca's</span> <span id="SPELLING_ERROR_23" class="blsp-spelling-corrected">office</span> and since I know the Congressman personally I wanted to see if he was available to see me for a hug and a photo op? He was, and of course that's when I went in for the "quick pitch" for Lupus Advocacy! Congressman Sherman was incredibly nice--but then again, he has always been kind to me and my requests for improving constituent relations. </div><div></div><div></div><div>Later in the day, there was a Town Hall meeting scheduled with Senator Barbara Boxer. I arrived early to get a good location. At last year's Advocacy Day I learned that the Senator's Town Hall meetings are full, crowded with groups of advocates representing an array of issues that effect California. The Senator was running late and when she arrived she told the assembled group that there would not be time for a Town Hall today as she was expected on the Senate floor in mere minutes. She only had time for two group photos before she had to run, and literally she ran out of the room - and I followed along as I quickly told her quickly about the importance of funding Lupus research. </div><div></div><div></div><div></div><div>As I was leaving the Senate building, I left some other Senators the <span id="SPELLING_ERROR_24" class="blsp-spelling-error">LRI's</span> Advocacy Day packet of information via the "drop-in". My surprise at getting a meeting from a "drop-in" with Brenda of Congressman <span id="SPELLING_ERROR_25" class="blsp-spelling-error">Baca's</span> office was surpassed when a "drop-in" led to an instantaneous meeting with New Mexico Senator Tom Udall's Health LA, Ben! What an incredible way to end my 2009 Lupus Advocacy!</div><div></div><div></div><div>On Wednesday night, I played tourist and enjoyed the Washington DC monuments. The monuments are always impressive but with the spotlights shining they become something more. Then exhaustion set in... somehow I made it to my hotel room packed and got to Dulles.</div><div>Now I'm back home. Just because I'm not in Washington, doesn't mean the megaphone is going to be put down. I'm LA Lupus Lady and I advocate for Lupus wherever I am.</div><div></div><div></div><br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzIiAilAy50mUy70axxqd3veFvSiXLalc6IHkdecN66fswMF9ku0FReIx0iIjtlIsqxB5clyPBYyqHTYH5Twg' class='b-hbp-video b-uploaded' frameborder='0'></iframe>Amanda ~ LA Lupus Ladyhttp://www.blogger.com/profile/06558535701385293731noreply@blogger.com1tag:blogger.com,1999:blog-3546545349079605635.post-61705010928385654882009-09-14T19:24:00.000-07:002009-09-14T21:02:44.614-07:00I'm in DC for Lupus because...September 15, 2009 - Lupus Research Institute Capitol Hill Advocacy Day!<br /><br />I am in Washington, DC today because I have Lupus. I am doing what I can and then some. I never would have thought that the diagnosis of a chronic illness would be the start of a journey that took me from long suffering Lupus patient into an advocate on Capitol Hill.<br /><br />I have lived with Lupus for more than a quarter of century. I am here because my husband has generously allowed me to use his frequent flier mileage awards and hotel points to receive this luxury of being able to travel to represent the "patient voice for Lupus Research." I am not paid to be here. I am not a "professional" lobbyist. I am here today because I am passionate about improving the quality of life for those who have Lupus and those that love them.<br /><br />I am here in Washington, DC because 26 years ago when I was diagnosed with Lupus, my life expectancy was 5-7 years. Since I have been diagnosed with Lupus, the FDA has not approved a single drug treatment for the illness. There are promising new prescriptions drug treatments in the crucial clinical trial phase but until there is a new FDA approved Lupus drug there will not be a cure. I will not stop advocating for patients who suffer from Lupus until there is a cure.<br /><br />I am dedicated to representing those with Lupus who cannot be here in DC. If you want to be a part of Capitol Hill Advocacy Day join in. If you can pick up a phone, you have a voice. Call your local Member of Congress. Let your voice be heard. If you don't call, who will? You can call your Representative's local office or their DC office. If you don't know the DC office number for your Congressperson, look online or call the Capitol Switchboard, the number is (202) 224-3121.<br /><br />In my last blog, I got specific about what the LRI (Lupus Research Institute) is asking of Congress. Please read it and when you call feel free to use it as a guideline for asking your Representative to work to make sure that your request is heard. You can call your Senator and tell him/her that you live in his/her home state and that living with Lupus is a challenge you tackle every day. <br /><br />I feel it is important to lobby Congress to promote the interest of Lupus patients, families and researchers. My favorite part of Capitol Hill Advocacy Day is being able to put a face on the disease. I have Lupus and I vote. I have Lupus and I advocate. With over one and a half million people diagnosed with Lupus in North America, almost everyone knows someone with Lupus. Not all Lupus patients have the strength and ability (whether it be financial or physical ability) to attend the LRI's Capitol Hill Advocacy Day which makes it all the more special for me.<br /><br />I like knowing that as a participant in Capitol Hill Advocacy Day, I am part of a unified coalition of Lupus organizations working together to do what working alone we would be unable to achieve.<br /><br /><br /><a href="http://4.bp.blogspot.com/_ABPQdwqfJZY/Sq77FOBr3KI/AAAAAAAAAA4/02mblWD4SHM/s1600-h/LA+Lupus+in+DC.JPG"><img id="BLOGGER_PHOTO_ID_5381514671837404322" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 137px; TEXT-ALIGN: center" alt="" src="http://4.bp.blogspot.com/_ABPQdwqfJZY/Sq77FOBr3KI/AAAAAAAAAA4/02mblWD4SHM/s320/LA+Lupus+in+DC.JPG" border="0" /></a>Pictured above the LA contingent attending the Lupus Research Institute Capitol Hill Advocacy Day meeting before the Meetings with Members of Congress! From left: Dorothy Ellis, me (LA Lupus Lady), Linda David Executive Director of Lupus LA, Adam Selkowitz Chairman of Lupus LA's Leadership Council and Elyse Leon-Reyes Patient Services Manager for Lupus LA.Amanda ~ LA Lupus Ladyhttp://www.blogger.com/profile/06558535701385293731noreply@blogger.com2tag:blogger.com,1999:blog-3546545349079605635.post-7543947204952465832009-09-13T18:38:00.000-07:002009-09-13T19:32:35.249-07:00LA Lupus Lady in DC!<a href="http://2.bp.blogspot.com/_ABPQdwqfJZY/Sq2foTUdQEI/AAAAAAAAAAw/yMlp_5k22Hs/s1600-h/llldc09wh.JPG"><img id="BLOGGER_PHOTO_ID_5381132644507271234" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 241px; TEXT-ALIGN: center" alt="" src="http://2.bp.blogspot.com/_ABPQdwqfJZY/Sq2foTUdQEI/AAAAAAAAAAw/yMlp_5k22Hs/s320/llldc09wh.JPG" border="0" /></a><br /><div>After arriving in DC on the "red eye" from LA and heading to my hotel to relax for a bit. My friend Catherine met me and we walked around the city took some snaps as I settled into to what will be a busy week in Washington. As you can see, I went straight to the President's House... </div><div> </div><br />I am here as a part of the Lupus Research Institute's Capitol Hill Advocacy Day. The National Coalition is the patient voice for Lupus Research. I have basically copied verbatim from the Lupus Research Institute's handout for participants in the 2009 Capitol Hill Advocacy Day and <a href="http://www.lupusresearchinstitute.org/">www.lupusresearchinstitute.org</a> - click it and learn what you can do for Lupus!<br /><br />A few of my Lupus friends have asked what can they do? Well, even if you aren't here with the National Coalition in DC you can let your voice be heard. Call your Congressperson and Senators let them know that you are a Lupus patient and a constituent of theirs and you and the <strong>LRI (Lupus Research Institute) urge Congress to sustain the nation's medical research enterprise and support the House funding level of $31.2 billion for NIH in the Fiscal Year 2010 Labor-HHS Conference Appropriations Bill. </strong><br /><br />-- Congress approves the budget for the NIH which funds various biomedical research including clinical trials and the research that can and will lead to a cure for Lupus. the request for $31.2 billion amounts to a 3 percent increase above last year and is $400 million than the Senate proposal.<br /><br />also<br /><br /><strong>The LRI National Coalition requests that Members (of Congress) support a provision in both the House and Senate FY2010 Labor-HHS Appropriations Bills to provide $1 million to the HHS Office of Minority Health <em>to continue a new nationwide lupus education program for health professionals.</em></strong><br /><br />-- Lupus is up to three times more common among African Americans, Hispanics and Native Americans and affects over one-and-a-half million persons, 90 percent of whom are women.<br />Most Lupus patients often visit multiple doctors and go years before receiving a correct diagnosis. <br /><br />Both House and Senate versions of the Fiscal Year 2010 Labor, Health and Human Services Appropriations Bill have recognized the urgent need for improved lupus education. Each bill provides for $1 million to the Office of Minority Health in the Department of Health and Human Services to build a national lupus health education program for health education providers.<br /><br />The official wording of the requests for Members of Congress is how the Lupus Research Institute forms their official request, so if (when!) you call it will help to use the same wording. If you have any questions, feel free to ask me. I am still learning how this part of the lawmaking process happens. It isn't as easy as singing "I'm just a bill. A bill on Capitol Hill."<br /><br />More as my DC adventure continues...Amanda ~ LA Lupus Ladyhttp://www.blogger.com/profile/06558535701385293731noreply@blogger.com0tag:blogger.com,1999:blog-3546545349079605635.post-19221790245232354332009-08-26T09:56:00.000-07:002009-08-26T10:52:03.613-07:00Lupus Research Institute Capitol Hill Advocacy Day -looking back and forward!<p>Somehow it seems appropriate that I am planning my second Lupus Research Institute Capitol Hill Advocacy Day trip as Senator Edward Kennedy goes from being a living legend to a part of the legacy. He was so inspirational when I heard him speak to young Democrats at the Conventions. My participation in Democratic politics and as a Delegate led me to focus my activism specifically on the cause closest to me, Lupus. ~ I just booked my tickets and hotel, thanks to my husband's frequent flier miles and hotel reward points. I will going to the 2009 Lupus Research Institute Capitol Hill Advocacy Day - on September 14 (advocacy training and the latest Lupus news) & September 15 (on Capitol Hill, speaking with members of Congress)</p><p>Looking forward to it, is an understatement. I can't wait to get back "in the the Loop" (I know it's inside the Beltway) for Lupus. I hope you can join me and the coalition of Lupus organizations that are participating in the 2009 Lupus Research Institute Capitol Hill Advocacy Day.</p><p>Looking back on last year's Capitol Hill Advocacy Day, I am proud and humbled that I was able to take part in conversations with Members of Congress on Capitol Hill about funding innovative research so that we can find a cure for Lupus patients, educating medical professionals about the signs of Lupus, which will lead to early diagnosis and proper care of Lupus patients and other Lupus issues. These conversations led to Congress funding NIH Lupus research and programs to educate medical professionals. Pretty much exactly what we asked for. That's why it is so important for us to have a voice and speak for ourselves on Capitol Hill. Whether you have Lupus, care for someone that has Lupus or simply know someone with Lupus. Please join me on September 14th and 15th and let your voice be heard. </p><p><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dy9dB4HT1sqZZ-W74aL1NvCf3TTHaH8JhxLG0NDOe9ZeA8W-2KQjqxuTrNkZc1kayiqWpdOmHqUnKf9h_Jxyg' class='b-hbp-video b-uploaded' frameborder='0'></iframe></p><p>See you in Washington, DC! </p>Amanda ~ LA Lupus Ladyhttp://www.blogger.com/profile/06558535701385293731noreply@blogger.com0tag:blogger.com,1999:blog-3546545349079605635.post-87166434920634411062009-08-26T09:35:00.000-07:002009-08-26T09:54:21.667-07:00Teddy and me...Just a quick note about me, before I became a Lupus patient advocate on YouTube and online, I was an activist for Lupus research and additional funding to support medical advances within my community and was fortunate enough to attend three Democratic National Conventions - two as a Delegate from California (1996 and 2004) and one as a volunteer for the producers of the 2000 Convention in Los Angeles. While the support for Lupus research and additional funding was a cause close to my heart. It was a state issue that prompted my political activism initially. I will cover more on that in later blogs.<br /><br />memory in my head today --<br />Boston 2004 Democratic National Convention Hall - I'm psyched I just saw Ben Affleck and continue down a corridor when I see a group that includes Senator Ted Kennedy coming towards me. Smiling and looking directly at him, I ask the Senator "Are you in the loop for Lupus?" He relies "Yup" and that was my moment with Teddy.Amanda ~ LA Lupus Ladyhttp://www.blogger.com/profile/06558535701385293731noreply@blogger.com0tag:blogger.com,1999:blog-3546545349079605635.post-81467319470490532552009-08-24T10:51:00.001-07:002009-08-24T13:19:55.689-07:00Purr-fect Kitty PoledancerMy love for Purple Lab NYC's "Huge Lips, Skinny Hips" began with two shades - Kitty Poledancer and Worship Kate. Kitty Poledancer is a natural soft nude and Worship Kate is the yummiest shade of berry shimmer. Much more than the gorgeous color and amazing gloss, one reason I adore this brand so much is that every package of "Huge Lips, Skinny Hips" comes with a love note inside. The note describes how Fabulous Fashionista and Purple Lab NYC Creatrix Karen Robinovitz was inspired to name each shade. Within the Kitty Poledancer love note, I found out that Kitty Poledancer was a nickname that Karen got after taking her empowering S-Factor pole dancing classes. I love S-Factor. The sanctuary where the shared love of movement and femininity combine to enhance and enrich women (sorry, no men allowed) with power and grace that carries them through their lives. The classes are filled with beautiful, strong women who are as much athletes as they are dancers.<br /><br />"Huge Lips, Skinny Hips" was coming out of my mouth as much as it was on my pout. I loved this multi-tasking lip gloss line so much that I was talking about it to anyone that would listen - the check out girl at Target and the lady at my dry cleaners - all about the lemon peel and meadowfoam. I was singing the praises of the lip plumper with Hoodia to my friends - both kinds, actual and virtual. That's when I found out that Purple Lab NYC had teamed with Brickfish to create the "Kiss and Tell Your Huge Lips, Skinny Hips I.D." contest.<br />Right away, I wanted to win the incredible dream fashionista trip to New York. To win I had to enter. (Not knowing at the time, that I was going to enter the contest for every shade.) I felt my entry had to be fresh and innovative like Purple Lab itself. <br /><br />Instantly, the vision of my Kitty Poledancer entry in the Kiss and Tell Your Huge Lips, Skinny Hips I.D. came to me. My entry would be a picture of my cat wearing his sunnies. My picture for Kitty Poledancer was purr-fect! In it my cat, Bernie Williams (named for the coolest NY Yankee player ever!), was lounging with his blue sunglasses on, it was simple yet bold and cool. The blue sunglasses popped against his grey and white fur in the picture and it conveyed everything I had hoped for. I love Kitty Poledancer because wearing the lip gloss turns me into a beautiful sex kitten. The aisles of the supermarket became a catwalk, I strutted while shopping for soy milk and strawberries. Wearing Kitty Poledancer from Purple Lab NYC "Huge Lips. Skinny Hips" is fun. I feel bold and sexy like a cat who wears shades.<br /><br />Now, I'll stop talking about my Kitty Poledancer entry in the Purple Lab NYC & Brickfish "Kiss and Tell Your Huge Lips, Skinny Hips I.D." and let you judge for yourself. Click the link. Please vote and review.<br /><br /><a href="http://www.brickfish.com/GoToPage.aspx?qsi=18136309">Brickfish Social Media: Purr-fect Kitty</a><br /><br />Shared via <a href="http://addthis.com/">AddThis</a>Amanda ~ LA Lupus Ladyhttp://www.blogger.com/profile/06558535701385293731noreply@blogger.com0tag:blogger.com,1999:blog-3546545349079605635.post-87864339349017545742009-08-13T15:37:00.001-07:002009-08-15T08:26:25.765-07:00My RED SOLE Story!This is my RED SOLE story: The Red Sole entry (click the link below to cast your vote!) for the "Kiss & Tell Your Huge Lips, Skinny Hips I.D." contest from Purple Lab NYC & Brickfish is actually my third submission. (I have--at least--one entry for every shade in the contest). I had the idea for it first but waited for the right circumstances (lighting and a photog) and logistics to make it all come together. In case, you are wondering Kitty Poledancer & Love Your Thighs were the shades that I created, produced and submitted entries before RED SOLE hit the Brickfish ViralMap and i will tell you about those entries soon. <br /><br />RED SOLE is typed in all CAPS as an homage to Christian Louboutin, the shoe designer famous for his red soles, who inspired Purple Lab NYC Creatrix Karen Robinovitz to name her knock 'em dead-perfect shade of red RED SOLE. When I put RED SOLE on my lips, whether with a quick wisp or if I layer it on with three coats, the color is always perfect--sometimes it is just more so. The color red usually implies heat, passion and fire. Purple Lab NYC's RED SOLE shade of Huge Lips, Skinny Hips is a combination of all of these things and more--it's a lip plumper that helps curb hunger. My passion for RED SOLE runs deep.<br /><br /><br />In thinking about how I was going to portray the way I love RED SOLE, I knew I wanted a close -up shot of my face that focused on my bold bodacious pout. I knew that I would wear sunglasses and not be smiling--all the best models never smile. I knew that my RED SOLE entry had to be more than just another non-smiling, sunglass-wearing, spotlight-on-the-pout picture. There needed to be an X-Factor (apologies to the S-Factor who inspired Kitty Poledancer, but that will be in the next blog) in the photo. The lighting was my "light bulb" moment--it simply had to reflect the power and strength that I feel when I wear RED SOLE. I love the natural light that beams into my dining room when the midday sun is overhead. The venetian blinds of the skylight even create a cool, striped shadow. I now had to wait for the midday shadow and my husband to be in the room at the same time--which I did. After a few test shots, checking angles and location of the striped shadow, Steve (my husband) said he had it. No way! The shoot was too easy! Yet, after checking the back of my digital camera, I saw that he was right. Captured in a moment of good lighting, a not bad angle, the sunlight hits my face just right as if I was shot by Bruce Weber. There I was: a sunglass-wearing, non-smiling, Huge Lips, Skinny Hips model. Who knew that an ordinary woman could become a model with a little lip gloss? Purple Lab NYC, that's who!<br /><br />Here is my Kiss & Tell contest entry for RED SOLE, please click to vote.<br /><br /><a href="http://www.brickfish.com/GoToPage.aspx?qsi=17540689">Brickfish Social Media: Bold Bright & Bodacious</a><br /><br />Shared via <a href="http://addthis.com/">AddThis</a>Amanda ~ LA Lupus Ladyhttp://www.blogger.com/profile/06558535701385293731noreply@blogger.com0