True Life Tuesday ~ Happy Lupus Awareness Month!

Happy Lupus Awareness Month! "You think you know, but you have no idea how truly excited I am to be heading to the East Coast to celebrate Lupus Awareness Month."  More specifically, I am heading to New York City for World Lupus Day and on May 12th I will be walking at MetLife Stadium in New Jersery with friends and family to support the Alliance for Lupus Research. http://lupusresearch.org/

At the beginning of May to celebrate Lupus Awareness Month, the ALR started a tumblr page and I am doing cartwheels (not literally) and jumping for joy (literally) Tumbling is fun and another way to connect using Social Media, follow the ALR tumblr page.   http://allianceforlupusresearch.tumblr.com/  World Lupus Day (May 10th!) is the one year anniversary of the ALR's "Get In On It" campaign.  Use the #GerInOnIt when you are on Twitter and head to the Alliance for Lupus Research Facebook Page and "Like" them today. https://www.facebook.com/#!/allianceforlupusresearch

Personally, to share that "Lupus Awareness is Fun" this Lupus Awareness Month I started a Facebook Page https://www.facebook.com/#!/LupusAwarenessIsFun I hope you like it.  I am still figuring out how the Facebook Page will grow and develop, but together the community will help.  I was really inpsired to create my Facebook Page after seeing the power of the Facebook Pages of the Alliance for Lupus Research and WEGO Health.

WEGO Health was the reason I blogged every day in April, they support the Health Activist Community and this post is their fault.  Thank you just doesn't cover it so to help me thank me. Like the WEGO Health Facebook Page https://www.facebook.com/#!/wegohealth  Did you catch the #HAroundtable for @wegohealth that @TiffanyAndLupus and I had to shine the spotlight on the Lupus blogging community.

This Sunday marked the first ever #LupusChat on Twitter.  @Lupus_Chat is moderated by @TiffanyAndLupus.  I was happy to be a part of the premiere chat and look forward to future chats.  Let's talk about Lupus.  The next chat is Sunday, May 13th at 3pm EST/12pm PST topic will be talking coping with Lupus and Motherhood issues in honor of Mother's Day. https://twitter.com/#!/Lupus_Chat

Thanks to everyone who is participating in sharing Lupus Awareness around the world.  I am grateful to the #chronicallyawesome @julianna12369 on Twitter of http://www.whatthejules.com/ and hubby @SteveLeblang who got Lupus Awareness Month started right with a wonderfully emotional guest post.

Lupus Awareness is Fun. Lupus is Not.

Happy Lupus Awareness Month!

Amanda

Speaking up about Lupus Awareness...

Long time no blog, but I have been keeping busy on my quest to share that "Lupus Awareness is fun and important!" In case you missed it I have been raising my voice and shared my story on Winning Life Through Pain on BlogTalkRadio earlier this year...

http://www.blogtalkradio.com/winninglifethroughpain/2012/01/24/amanda-greene--the-la-lupus-lady

From Wonder Woman to LA Lupus Lady, hope you enjoy this interview...

30 Things About My Invisible Illness You May Not Know ~ a Lupus blog

In honor of National Invisible Illness Week... here is my "Lupus List" 

30 Things About My Invisible Illness You May Not Know

1. The illnesses I live with are Systemic Lupus Erythematosus (SLE / Lupus) and APS (Antiphospholipid Syndrome)

2. I was diagnosed with it in the year: 1982

3. But I had symptoms since: 1980

4. The biggest adjustment I’ve had to make is trying to find a balance of being a “Lupus” patient and having a life.  Each day is a constant struggle to find the balance.

5. Most people assume that I am fine that Lupus is NOT a real disease.

6. The hardest part about mornings are waking up in pain, after battling night sweats and insomnia.  Waking up tired, is no fun.

7. My favorite medical TV show is Dr.OZ

8. A gadget I couldn’t live without is my laptop/cell phone/iPad 2 ~ three way tie, I need to be connected!

9. The hardest part about nights is relieving the pain enough to be able to fall asleep.

10. Each day I take between 8-18 pills & vitamins. Depending on severity of pain and symptoms.

11. Regarding alternative treatments I personally use any and all available methods to manage my Lupus.  Why is complementary medicine is still considered alternative?  After consulting my primary care physician I seek whatever treatments I can afford.  These treatments include acupuncture, massage, therapy, herbal supplements and exercise.

12. If I had to choose between an invisible illness or visible I would choose WELLNESS! I would never choose Lupus.

13. Regarding working and career, I have become an advocate for sharing that “Lupus Awareness is fun, but Lupus is not!”  Does being “LA Lupus Lady” count?  Unpaid advocate for Lupus! Writer of tweets, blogs and social media expert.  Seeking employment as a passionate advocate for Lupus or your brand... I love being a "brand ambassador" (check out the blogs/videos from #Fashion140) 

14. People would be surprised to know that I am in more pain that I let on.

15. The hardest thing to accept about my new reality has been… that after 28 years my new reality constantly changes.

16. Something I never thought I could do with my illness that I did was get married.

17. The commercials about my illness are not enough, together we must work to fund research, educate the public and medical professionals while supporting each other.  Without apologies to the writers of "House" sometimes it is Lupus.

18. Something I really miss doing since I was diagnosed is… enjoying a carefree day in the sun.

19. It was really hard to have to give up the idea of ever being a “birth mom” Many women with Lupus can become "birth moms" but in my case it is not.

20. A new hobby I have taken up since my diagnosis is water aerobics. (while at an indoor pool or wearing a BIG huge floppy hat)

21. If I could have one day of feeling normal again I would run on the sand of a sunny beach without worries or SPF.

22. My illness has taught me to find the balance and find strength where you can, when you can.

23. Want to know a secret? One thing people say that gets under my skin is “well, you look good” as if I am making up the fact that I feel like… Lupus!

24. But I love it when people listen, offer unconditional assistance… making me laugh and a good hug are always happily accepted.

25. My favorite quote that gets me through tough times is from Shakti Gawain “Everything is Unfolding Perfectly” hard to believe it most days but still my favorite.

26. When someone is diagnosed I’d like to tell them to remember that they may have Lupus, but Lupus does not have them.

27. Something that has surprised me about living with an illness is that I am still alive… when I was diagnosed I was given 5-7 years to live…the only surviving member of my first Lupus Support Group.

28. The nicest thing someone did for me when I wasn’t feeling well was make me dinner and fill a tub then help me out of the bath after I was relaxed and unable to stand up on my own.

29. I’m involved with Invisible Illness Week because I may not look sick but I am.  My name is Amanda (online “LA Lupus Lady”) and I have Lupus.

30. The fact that you read this list makes me feel as if I am making a difference by sharing that Lupus Awareness is important.  Invisible Illness Patients matter.

Wishing you Wellness...

Amanda

Lupus 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".

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...

The Lupus Foundation of America is going to Capitol Hill today to ask for:

 

Increase funding for Lupus Medical Research at the National Institutes of Health (NIH).

 

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).

Continue funding for:

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.

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.

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.  

http://capwiz.com/lfa/home/

Help me create and share the "Joys of Lupus"

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"!


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" 

Details:
1) email pictures to me at lalupuslady@gmail.com 
2) subject line "Joy of Lupus" 
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
4) submit by January 30, 2011
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...)

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!"