Entries in chronic illness (5)


Where's the inspiration? Online... of course.

"Challenges are what make life interesting; overcoming them is what makes it meaningful." Joshua J Marine 

As the minutes tick by, and the end of Day 2 approaches... I feel trapped by some self-imposed pressure.  Although it is only the second day of WEGO Health's National Health Blog Post Month, I am already struggling to fulfill my challenge goals.  Why am I doing this again? Wasn't April enough?  I have chosen to participate and reveal myself in an authentic way.  I want the posts this month to be a reflection of who I am as an advocate, activist and citizen journo for the lupus community online.  I will strive to accentuate the positive and find the "flair" however today's post is not the one I originally planned to write and I apologize for not having another post ready to go in the event that as it usually does -- "life is what happens when you are busy making other plans."

Everyone has their struggles and life battles, my battle is with lupus and those that seek to silence my voice as a lupus patient, advocate and activist.  While I enjoy a fancy celebration as much as the next fashionista, I won't lower my megaphone because it makes you uncomfortable.  I had the opportunity to share a little of who I am through the 'Friends of Ricki' Social Media community "Friend of the Week"; it was a chance for me to shine and soar.  Despite doing my best to accentuate the positive and focus my perspective on the "flair" ~ today someone tried to knock me down. 

Calling into question my methods of sharing and activism... little did they know I had just received email confirmation that my Congresswoman, Representative Karen Bass joined the Congressional Lupus Caucus and supports the lupus community.  I am learning (still...) to never doubt that my passion is leading me in the right direction.  I know this post isn't filled with pretty pictures of celebrities and purses, or a wonderful impactful quote from an international superstar but this post is filled with honesty and fueled by my passion.  It isn't what I originally planned and I am dealing with it as best as I can.

Thank you, gentle reader for your patience and understanding.


Passover, Lupus and Me

I am still cooking and setting the table for Passover.  Before the holiday prep got too insane, I wrote a post for But You Don't Look Sick about how I manage to live with Lupus and celebrate Passover.

Happy Pesach!


One step at a time...

One step at time... that seems simple enough.  When you live with Lupus as I do--and have for 28 years--it is easy to forget that taking things in life one step at a time is the only way to get there.  On Saturday, March 19th, at the Big 5 LA 5K held at Dodger Stadium, that was hard to forget.  I remembered that as I was taking my steps--one at a time-- along the race course.  My journey along the path wasn't to run a fast race or have a "good time", but I did enjoy sharing that "Lupus Awareness is Fun".   When I crossed the finish line, it was with bright orange pom poms in my hands.

The best part of the 5K day was meeting Erin and Aaron.  You may know Erin better as the @QueenofSpain, but this year Steve & I joined her Lupus LA Team #SuckItLupus.  She is newly diagnosed, and I easily remember what those early days of figuring out how to live with Lupus were like; wondering what is this medicine doing to me, what is the disease doing to me--the questions of a new "Lupie".  

For the first time in the 28 years since I have been diagnosed with Lupus, earlier this month the FDA approved a drug for Lupus--in fact, it is the first drug for Lupus in over 50 years.  I applaud HGSI for not giving up on the discoveries that led to creating Benlysta.  I walked the 5K for Lupus Research because every day new patients are being diagnosed with Lupus.  I walked for Lupus Research because one FDA approval at a time is progress and I hope that by bringing awareness to the FDA approval that more companies will be brave enough to invest in the funding of innovative projects that will help ease the pain of Lupus patients and caregivers.  Personally, if we each take one step at a time, I believe that the goal of increasing the speed at which progress towards new medications and research towards better understanding of Lupus can happen if we work together.

The next day was the LA Marathon and it was wet, yet I somehow made it to the "Lupus LA" cheering section on Rodeo Drive in Beverly Hills!  I know how important it is to feel encouragement on a long journey, whether that journey is living a life with a chronic disease like Lupus or completing a 26.2 mile race course.  I enjoyed shouting support for Lupus LA marathoners like Shante Broadus and Cathy Gallagher (both of whom are Board Members of Lupus LA) and everyone who passed us in front of Prada, even in the pouring rain.

I was both an athlete and an athletic supporter (insert bawdy joke here) during the 2011 LA Big 5 5K and the Honda LA Marathon and I hope that I've inspired you to share that Lupus Awareness is fun because it is so vitally important to support and fund Lupus Research.

Shante on Rodeo Drive! Way to go @bosslady_ent!


2009 Capitol Hill Advocacy Day for Lupus Research!

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 15th.
Through my involvement with Lupus LA, I found out that the Lupus Research Institute and the SLE 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.

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.

What happens on a Capitol Hill Advocacy Day is that an organization or coalition (such as Lupus Research Institute) gathers their constituents 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 15th was a perfect time to have meetings on the Hill to advocate 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 Research 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!

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!)

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) Clintons 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 LRI 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.
Because I had some time before my next meeting with Senator Feinstein's 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 Oaks who inspired me to find a cause I believed in and advocate for it.), Sam Farr, Joe Baca, Xavier Becerra, Lois Capps and Loretta Sanchez.
The constituents from California met with the Health Legislative Aides from both Senator Feinstein's 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.
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 Baca's 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.
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 Rusche, who passed away from Lupus complications. I thought about Bonnie Romoff, my first Lupus support group leader ,who did the best she could yet still succumbed to the illness. I thought about my 'Lupies' online, people with Lupus that I know through Facebook 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 SLE and I decided to stop thinking and start advocating.
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 Baca's Health LA speaking to her about the LRI 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 Baca's office 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.
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.
As I was leaving the Senate building, I left some other Senators the LRI's Advocacy Day packet of information via the "drop-in". My surprise at getting a meeting from a "drop-in" with Brenda of Congressman Baca's 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!
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.
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.


How I became LA Lupus Lady.

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

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

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

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

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

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

More Soon!