Entries in systemic lupus (9)


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...

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...



I am now a Woman with a Website

Thank you for visiting my new website "LA Lupus Lady"  I hope that this space will provide insight into what my life with Lupus is like.  I should warn you that though I have Lupus, Lupus does not have me.

When I was diagnosed with Lupus 28 years ago, I was told that there had not been a new drug approved by the FDA for Lupus in over 25 years.  Tomorrow, it appears that the FDA will approve Benlysta for use in Lupus patients.  Every Lupus patient is different; no two Lupus cases are the same.  Luckily, I have not a "flare" in over 8 years.  I know that there are many Lupus patients who are not so lucky.  Whether you need Benlysta or not, I hope that the new drug is approved.  Waiting for over 50 years for the FDA to approve a Lupus drug while Viagra and others got the approval stamp from the FDA long ago has been a point of contention for me.  But today, I celebrate the future of Lupus and Lupus Research.  Benlysta may not be the right medication for you - that is between you and your doctor.  My joy comes from the fact that the FDA is finally getting into the loop for Lupus!


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" 

1) email pictures to me at 
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!"


LA Lupus Awareness aka LALA

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
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.

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.

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.

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.

That is when I said "Mr. Wonder, I enjoy your work."

He smiled extended his hand and said "What's your name?"

I replied "Amanda, I am LA Lupus Lady" as I smiled at my own response.

The elevator doors opened and Stevie said "Nice meeting you, Lady."

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 for all the information you will need to get started.

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.