RUN! Team Life without Lupus

Like to sweat it out for a great cause? Do you know someone who does?

The S.L.E. Lupus Foundation is a proud charity partner of the ING New York City Marathon. “Team Life Without Lupus” is working hard to raise funds and awareness for science and service for the lupus community. The NYC marathon will be on November 4, 2012. Team Life Without Lupus runners enjoy many benefits as they train for this unprecedented racing event and support lupus sufferers nationwide. There are still have some spots available on the team. If you, a family member, or a friend would like to take part, we welcome to become a 2012 Team Life Without Lupus runner!


The ING New York City Marathon is one of the world’s greatest road races, boasting more than 40,000 participants. It takes place in the media capital of the world, New York City, before two million cheering spectators and 315 million worldwide television viewers. As any one of the more than 700,000 past participants will attest, crossing the finish line in Central Park is one of the ultimate thrills of a lifetime.

Get involved and stay fabulous!

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BREAKING NEWS: Supreme Court Upholds Affordable Care Act

 The Supreme Court today declared in a 5-4 vote that the Affordable Care Act (ACA) — the most significant healthcare legislation since the creation of Medicare — is also a constitutional act. —Medscape News

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Regardless of your political view, there is no denying that history was made today. The Supreme Court says ‘Yes” to the Affordable Care Act (aka ObamaCare). But many of us lupus patients are wondering: “How does this affect me?”. In the flurry of emails and reports regarding the decision this morning, the Lupus Research Institute (LRI) sent out an email that summarizes this Act and explains how this applies to lupus patients. LRI did such an amazing job that I am going to copy and paste the email here. Of course, you can receive these email notifications by signing up on their website: http://www.lupusresearchinstitute.org/

From the Lupus Research Institute:

The day many people living with lupus and other chronic conditions have lost sleep over has come, and we can all rest easier thanks to the positive ruling on the Affordable Care Act from the U.S. Supreme Court.

The  Lupus Research Institute (LRI)  strongly supports today’s ruling for the provisions it makes to protect the 1.5 million Americans living with lupus. The Court’s ruling provided for four critical principles that the LRI and its National Coalition of patient organizations had successfully advocated for inclusion in the current Patient Protection and Affordable Care Act.  Together, we have been on record and calling on Congress to ensure these principles be maintained throughout subsequent rounds of revisions.

Following is the press release the Lupus Research Institute just issued expressing our appreciation for today’s landmark decision and informing the lupus community nationwide of its implications for their future care:

Lupus Research Institute Applauds Supreme Court Ruling on Healthcare Act 

Legislation Maintains Key Critical Principles for People with Lupus and Other Chronic Diseases

NEW YORK, NY – June 28, 2012. The Lupus Research Institute (LRI)  is strongly encouraged with today’s bipartisan U.S. Supreme Court ruling upholding virtually the entire Patient Protection and Affordable Care Act signed into law by President Barack Obama in 2010.

This historic decision is greatly welcomed news for the 1.5 million Americans living with lupus. In upholding the Act, the Court supported principles the LRI and its National Coalition of patient organizations had successfully advocated for inclusion to ensure that people with chronic diseases such as lupus are protected. The Supreme Court ruling maintains the following four key principles so critical to people with lupus and other chronic diseases:

  • Insurance coverage available for all Americans, regardless of pre-existing conditions.
  • Elimination of lifetime caps on health benefits.
  • Provisions dedicated to prevention and wellness and educating those with and at risk for chronic disease on best ways to manage and prevent illness.
  • Dedication to eliminating racial disparities in chronic diseases such as lupus, which disproportionately affects minorities.

“With so much at stake for lupus patients, so many are breathing a sigh of relief with this Supreme Court ruling,” said Margaret Dowd, President and CEO of LRI. “The ability to buy insurance regardless of preexisting conditions is a critically important legal right for all of us – but for people with lupus it’s truly a life and death issue. The current provision eliminating lifetime caps on insurance benefits is another pillar of health care reform that is dramatically increasing treatment options for many lupus patients.”

The Diva’s First Reaction: (with the help form Thinkprogress.org)

1. More than 30 million uninsured Americans will find coverage under the law.

2. Insurers’ inability to discriminate against people with pre-existing conditions!!

In summary: This is a huge day for many patients struggling to maintain health insurance to pay for the treatments that are desperately needed to continue daily activities. Options are now available.

Stay Fabulous! 

Insert Creative Title Here: Benlysta and Common Side-Effects

I started my first Benlysta infusion late December 2011.  I just had my 7th infusion yesterday afternoon along with my monthly visit with the GREAT Dr. Lupus.  Today, I am feeling the “what- is-becoming” my normal after-poking side effects. Although it took awhile (yes… I am a bit dumb and slow at times), I think I am finally at a place where I can predict how I will feel after an infusion. You would think that the day following infusion is all sunshines and butterflies.   WELL IT ISN’T, DAMNIT! This IS the time when you will most likely notice the common drug side-effects, including:

  • Nausea
  • Diarrhea
  • Fever
  • Stuffy or runny nose
  • Sore throat
  • Cough (bronchitis)
  • Trouble sleeping
  • Leg or arm pain
  • Headache (migraine)
  • Urinary tract infection
  • Decreased white blood cell count (leukopenia)
  • Vomiting
  • Stomach pain

I have experienced most of these side-effects post-infusion (except leukopenia) at least once, twice or thrice.  Those that are highlighted above are the ones that have become part of my day-after-infusion routine.

Let me elaborate: As soon as I came home from my infusion, I crashed into what-I-hoped was-my-bed and did not wake up until 7 hours later… at 1 am! I still receive Benadryl pre-treatment with my infusion because I am a geeky-glasses-wearing-allergic.  Although I do not fall victim to the Benadryl’s sleeping spell during my treatment, I later become tired and silly-loopy as soon as I sit in the passenger side while a family member drives me home. My poor father was victim to my slurred, idiotic conversations regarding unicorns and cheeseburgers. After I climbed out of my mini-coma at 1 am, I checked my phone and saw that I sent some silly texts in my drugged haze (similar to those drunk texts that we are all too familiar with…). This is when I come to notice that during my haze I made an attempt to become a literary genius. I can’t make this up, nor do I have any shame…. This is an example of a text I sent last night: “Hey Faaagina  [obviously sounding out vagina] I need to blow so that I can grow”.  There you have it, fans, go ahead– judge me. Don’t Text Post-Infusion!

Kids don’t Infuse and Text!

Of course, I had trouble going back to sleep after waking at 1am. During my tossing and turning, I decided to welcome stomach pain and headache into the mix. 😉 When I did finally get to sleep, it was very light and unrestful.  I stumbled out of bed this morning and experienced the greatest combo o f leg and arm pain along with vomiting. Try rushing to a toilet when you can’t move your own damn legs.  It takes skills and talent. But I made it to work this morning… and on time. At this very moment, I am still experiencing arm and leg pain (on the right side) and a little of the “drugged” feeling (a la lupus fog). But I am still here and making it happen… one step at a time (baby steps)!

SIDE NOTE:

I think I am starting to see a little, teeny benefit from my combo of Benlysta and methotrexate (yay!). I expressed this with Dr. Lupus (“Hey doc, I don’t think I am getting worse!”) and we are going to continue the course… so I am crossing my fingers that I am making my way to the light at the end of the tunnel.

 

Stay Fabulous!